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Introduction Tuberculosis is a communicable disease and a major cause of morbidity and mortality. Globally, recent data show significant declines in the burden of TB compared to a decade or two ago. Nevertheless, the disease continues to be a serious public health threat. TB is the leading cause of death from a single infectious agent. In 2019, an estimated 10 million people fell ill with TB, and more than 1 million TB deaths were recorded among people infected with human immunodeficiency virus and HIV-negative persons. The burden of TB varied widely by geographical region, most people who developed the disease were in the World Health Organization regions of South-East Asia , Africa and the Western Pacific , with smaller percentages in the Eastern Mediterranean , the Americas and Europe [1]. With timely diagnosis and appropriate treatment, TB can be cured and mortality averted. The international community has committed to "Ending TB" as a global epidemic by 2030, backed up by milestones and ambitious targets. The DOTS system has been used by most low-income and middleincome countries for the control of TB. The implementation of this strategy has yielded desirable results in some countries such as China and Peru, while in some countries, particularly those of sub-Saharan Africa , the strategy has not yielded the desired outcome and impact, in part, due to the high prevalence of HIV [2]. The National TB Control programme of Ghana was instituted in 1994 to oversee TB control activities in the country after a period of neglect. The DOTS strategy for the control of TB was also implemented in the same year [3,4]. With funding from the Danish International Development Agency and Global Fund, TB control activities in Ghana were strengthened after a period of neglect, including the expansion of DOTS activities to cover 100% of the population in 2005. As a result, significant improvements in TB treatment success rates have been reported on the one hand, while on the other hand. However, after nearly three decades following the implementation and expansion of DOTS in the country, TB treatment coverage has consistently been far below the international target of 70%. According to the Global TB reports, the TB treatment coverage and treatment success rate of Ghana averaged 28.7% and 70.4% respectively, between 1995 and 2019 [1]. More broadly, the under-notification of TB cases is a challenge in many LMICs and many millions of patients have been missing out on diagnosis and treatment. Moreover, the DOTS system in improving TB case detection is limited by its design. This is because DOTS mainly employs a passive system of case identification, which requires patients with symptoms of TB to self-report to health institutions for diagnosis [5]. At the global level and in most countries, including Ghana, TB case notification rates are higher among men than women [1]. The reasons behind this observation are not clearly understood. Plausible explanations from scholars suggest that the differences are likely from a complex mixture of factors such as different risk factors and different health-seeking behaviour for diseases between men and women [6][7][8][9]. Some findings have also argued that men and women have equal access to TB diagnosis and treatment, therefore, the observed gender differences in TB notifications were unlikely to result from gender inequalities in access to health care services [10]. However, it is widely recognized that knowledge about diseases influences health-seeking behaviour. Reports from Asia, specifically, India, have demonstrated the impact of TB disease awareness on voluntary reporting at health facilities for TB care [11]. Generally, significant patient delays in TB diagnosis and non-seeking of care have been associated with a lack of knowledge and misconceptions about TB disease [12,13]. Little is known about gender differences in TB knowledge among men and women. Results of studies conducted among TB patients to assess knowledge on the disease, including signs, cause, and mode of transmission, as well as the possibility of cure have been inconclusive [14,15]. Furthermore, large population-based studies have also shown that knowledge about TB disease in the general population of countries highly infected with the disease is low, ranging from 16% in China to 44% in Ethiopia [8,16,17]. Poor knowledge about TB and misconceptions about its transmission are important drivers for delayed diagnosis and treatment as well as stigma towards TB patients. Therefore, there is a need to influence people's knowledge, behaviours, and attitudes to enable them to make healthy lifestyle choices. More specifically, an understanding of people's knowledge on the transmission of TB could help in the design of programmes to address misconceptions and eliminate, if not, reduce the discrimination towards TB patients in Ghana [18]. The purpose of the present study was to examine the gender differences in knowledge regarding TB disease transmission and cure and identify the correlates of self-reported correct knowledge regarding TB transmission and cure in Ghana using nationally representative data. --- Methods --- Data source This study analyzed data obtained from the 2014 Ghana Demographic and Health Survey , the sixth in a series of population and health surveys conducted in Ghana as part of the global Demographic and Health Surveys Program. The survey was implemented by the Ghana Statistical Service , the Ghana Health Service , and the National Public Health Reference Laboratory of the GHS. An updated frame from the 2010 Population and Housing Census conducted in Ghana was used as the survey sampling frame for the 2014 GDHS. Nomads and persons in hotels, barracks, and prisons were excluded from this sampling frame. A two-stage sample strategy was used in the survey to select 427 clusters consisting of enumeration areas and households. About 30 households were selected from each cluster to constitute the total sample size of 12,831 households. Because of the approximately equal sample sizes in each region, the sample is not self-weighting at the national level, and weighting factors have been added to the data file so that the results will be proportional at the national level. All women aged 15-49 who were either permanent residents of the selected households or visitors who stayed in the household the night before the survey were eligible to be interviewed. On the other hand, in half of the households, all men aged 15-59 who were either permanent residents of the selected households or visitors who stayed in the households the night before the survey were eligible to be interviewed [19]. Overall, 12,831 households were selected for the sample, of which 12,010 were occupied. Of the occupied households, 11,835 were successfully interviewed . Of the 9,656 eligible women identified for individual interviews from the interviewed households, interviews were completed with 9,396 women . In the subsample of households selected for the male survey, 4,609 eligible men were identified and 4,388 were successfully interviewed . For the present study, data on 13,784 Ghanaians were analyzed by merging the women's and men's files. --- Outcome and exposure variables Information on participant's knowledge and attitude towards TB was collected in the 2014 GDHS. Participants were asked whether they had ever heard of TB, the mode of transmission, whether it can be cured, and whether they would want to keep the information secret if a member of their family contracted the disease. The respondents' knowledge of tuberculosis transmission was elicited by asking, "How does tuberculosis spread from one person to another?" Participants were permitted to mention more than one response. For the present study, the response categories were: 1) through the air when coughing or sneezing; 2) through sharing utensils; 3) through touching a person with TB; 4) through food; 5) through sexual contact; 6) through mosquito bites; 7) others, and 8) don't know. Because multiple responses were allowed, a "Yes" for any option mentioned and a "No" for any option not mentioned. A dependent variable "Knowledge regarding TB transmission and cure" with a binary outcome was created from the responses of participants to the question on TB transmission and the possibility of cure. For our analyses, a score of "1" point was assigned to each correct response. To be able to compute the percentage of respondents who had knowledge about TB transmission without any associated misconceptions, we also assigned "1" points to the other incorrect responses about the spread of TB that were not mentioned. Thus, the respondent scored "1" point for mentioning the first option "through the air when coughing or sneezing" and "1" point for answering no to each of the other options on mode of transmission. A respondent who mentioned an incorrect response was given a score of "0" points. The scores on TB transmission ranged from a minimum of 0 to a maximum of 6 points. There were no responses under the "Others" and "Don't know" categories. Lastly, "1" point was also given to respondents who answered in the affirmative to the question on whether TB can be cured. In this study, a respondent was classified as having correct knowledge about TB transmission and cure if he/she obtained all 6 points on TB transmission and 1 point on the possibility of cure, giving a total of 7 points. Respondents with less than 7 points had other misconceptions about the spread of tuberculosis, regardless of whether they knew the disease was curable or spread through the air. Such respondents were classified in the category "had misconceptions regarding TB transmission and cure". We used information on keeping TB status hidden if a household member contracted the disease as a proxy to assess the stigma associated with the disease. Participants were asked the question "If a member of your family got tuberculosis, would you want it to remain a secret or not?" The options available were; 1) Yes, remain a secret; 2) No, and 3) Don't know/not sure/depends. Participants who responded "Yes, remain a secret" were assumed to be aware of TB-related stigma and that influenced their choice of response. Some variables were selected from the dataset as predictor variables and included age, education, employment, place of residence , region of residence, wealth quintile, cigarette smoking status, and variables measuring exposure to media. In the 2014 GDHS, exposure to media was assessed by asking respondents whether they read a newspaper or magazine, listened to the radio, or watched television at least once a week. Responses were classified as "Not at all" for respondents who reported that they did not read newspaper/magazine, listen to the radio, or watch television at least once a week. On the other hand, a response was grouped under "At least once a week" if the respondents self-reported that they read newspaper/magazine, listened to the radio, or watched television at least once a week. The wealth quintile was constructed from household asset data using principal component analysis [20]. These assets include a television, bicycle, or car, as well as home characteristics such as a source of drinking water, sanitation facilities, and flooring material type. The inclusion of predictor variables in this study was guided by previously published data on factors associated with TB knowledge [13,21,22]. --- Data analysis The data were analyzed using Stata/SE 13.0 . The student t-test was used to compare the means of continuous variables between men and women. The differences in categorical variables examined used Pearson's design-based Chisquare test. A probability value of <0.05 was considered statistically significant. A design base multivariable binary logistic regression analysis with robust standard errors was used to assess the relationship between the dependent variable, knowledge regarding TB transmission and cure and age, gender, educational level, employment, region, place of residence, wealth quintile, cigarette smoking, reading newspaper/magazine, listening to the radio, and watching television as predictor variables. The adjusted odds ratio , their corresponding 95% confidence intervals , and p-values were reported. The fit of the model was tested using the Archer and Lemeshow goodness-of-fit test for a logistic regression model fitted with survey data [23]. We did not find enough statistical evidence of a lack of fit of our model = 0.743; p = 0.669). Weighting was used in our analyses to account for the unequal probability sampling techniques used by the demographic and health program in the surveys to expand the number of cases available for certain areas or subgroups for which statistics are needed. --- Ethical considerations This study was a secondary analysis of survey data and did not require approval by the Institutional Review Board . However, the protocol for the 2014 GDHS was reviewed and approved by the Ghana Health Service Ethical Review Committee and the Institutional Review Board of ICF International. --- Results --- Background information of respondents in this study From the total of 13,784 participants, 68.2% were women aged 15-49 years, whereas 31.8% were men aged 15-59 years. The background characteristics of the respondents have been presented in Table 1. There were significant disparities between men and women by age, educational level, employment, place of residence, cigarette smoking, and exposure to the three forms of media. The results showed that 75.5% of men had received at least secondary level education compared with 63.1% of women . In addition, 13.7% of men were unemployed compared with 23.5% of women. Regarding exposure to media, 35% of men reported reading newspapers/magazines at least once a week compared with about 19% of women. On the other hand, about 16% and 23% of women reported not listening to radio and television, respectively, compared with about 6% and 17% of men who reported not listening to radio and television, respectively. The differences between men and women by wealth were not statistically significant . --- Gender differences in TB awareness, knowledge of its transmission and cure, and stigma The gender differences in TB awareness, knowledge regarding TB transmission, cure, and stigma have been presented in Table 2. The analysis demonstrated that 85% of the total sample had heard about TB as an illness . Regarding the mode of transmission of the disease, 67.2% reported that TB is spread through the air when coughing or sneezing. There were also misconceptions reported by the participants on TB disease transmission, including that it spreads through sharing utensils , touching a person with TB , food , sexual contact , and mosquito bites . About 86% of the total participants reported that TB is curable, while approximately 7% said they "don't know". We noted statistically significant gender differences in the responses to TB transmission and cure between men and women. For instance, the percentage of men who reported that TB is spread through the air when coughing or sneezing was higher than that of women . Furthermore, more men than women reported that TB can be cured . Based on the operational definition of correct knowledge regarding TB transmission and cure used in this study, the results showed that overall, knowledge regarding TB transmission and cure was correctly reported by 6,295 participants. Similarly, knowledge regarding TB transmission and cure was disproportionately distributed between men and women in the present study. Our data showed that 50.9% of men reported correct knowledge regarding TB transmission and cure, whereas 43.2% of women reported correct knowledge regarding TB transmission and cure. We also examined the attitude of respondents towards TB disease as a proxy for measuring stigma associated with the disease. The results showed that in the total sample, about 30% of participants would keep the information secret if a family member contracted the disease. There was a statistically significant difference by gender in the attitude towards keeping TB status in the family secret; it was observed that women were more likely than men to report that they would keep the information secret . --- Determinants of correct knowledge regarding TB transmission and cure in Ghana A survey-based multivariate binary logistic regression model was used to identify the determinants of reporting correct knowledge regarding TB transmission and cure among the study participants. The results are presented in Table 3. We found that age, gender, education, region, place of residence, wealth quintiles, frequency of reading newspaper/magazine, listing to the radio, and watching television were statistically significantly correlated with knowledge regarding TB transmission and cure. From the results , participants in the age group of 25-34 and those who are �35 years had increased odds of reporting correct knowledge compared to participants in the age group of 15-24 years. The likelihood of reporting correct knowledge was 20% higher among men than among women . The likelihood of reporting correct knowledge was also statistically significantly higher among participants with secondary and tertiary education compared to those with no formal education. Participants in the richer and richest wealth quintiles had significantly higher odds of reporting correct knowledge compared with women in the poorest wealth quintile. Statistically significant odds were noted among participants who reported reading newspaper/magazine at least once a week compared to those who did not read at all . The results were similar for listening to the radio and watching television. Conversely, lower odds of reporting correct knowledge were observed among people residing in rural areas compared to urban dwellers . Similarly, compared to respondents from the Greater Accra region, respondents from the Brong Ahafo region were statistically significantly less likely to report correct knowledge regarding TB transmission and cure . --- Discussion The analyses revealed that the majority of the participants had heard about tuberculosis . This implied a high awareness about TB in the Ghanaian population, which was within the range reported by studies conducted in Ethiopia [13,24]. More than half of the participants also knew that the disease was spread through the air when coughing or sneezing. However, some respondents reported some misconceptions, such as sharing utensils, touching a TB patient, food, sexual contact, and mosquitoes. These findings are similar to other studies, which reported that although the majority of people in the population have heard about TB, there were misconceptions regarding the mode of transmission [16,24,25]. In this study however, smaller percentages were observed for misconceptions compared with reports from other places. For instance, Pakistan where about 44% and 32% of participants identified sharing utensils and food respectively, as sources of TB transmission [25]. Notably, in the present study, more than 8 in 10 participants knew that TB is curable, albeit significant differences in knowledge between men and women. When the analysis applied the operational definition of correct knowledge regarding TB transmission and cure, which is knowledge of the mode of transmission without any form of misconceptions, we found that overall, the knowledge was low; less than half of the sample had correct knowledge on the disease transmission and possibility of cure. Furthermore, men had significantly higher odds than women to report correct knowledge, which may have been influenced by their higher educational level and greater exposure to media compared to women. This explanation is supported by the Ghana Statistical Service report [26]. Our findings on low knowledge regarding the transmission of TB in the population and among females compared with males are consistent with the findings of Sreeramareddy and colleagues who reported that about 30% of Indians had correct knowledge about TB transmission without misconceptions and males were more likely to have correct knowledge than females [16]. Conversely, an adjusted analysis from a study in Nigeria, which measured TB knowledge using cause, routes of transmission, and methods of prevention found weak statistical evidence that females were more likely than males to have good knowledge about TB [27]. Partly, the variation in findings may have resulted from the differences in measuring knowledge in this study and the Nigeria study. The results showed that a high percentage of the participants would keep TB information secret within the household when a member contracts the disease. TB is a disease associated with poverty. Stigma and discrimination against people with TB are common in many settings, particularly in poor areas. In Ghana, for the fear of infection, physical distancing and participatory restrictions are placed on people affected by TB. Community members hold the view that affected persons should not be involved in some social activities, such as selling in the market [18]. In this study, we found that females were significantly more likely than males to report that they would keep the information concealed when a household member contracted TB. The likely explanation may be related to the vulnerability of females than males to the social consequences of TB related stigma [28]. More importantly, evidence from a cross-site study revealed that women were more disadvantaged with regard to self-esteem, social isolation, and perceived stigma compared to men [29]. Regardless, these findings have implications for TB control in Ghana and other LMICs. The fear of being stigmatized, discriminated against, or socially isolated may force TB patients and/or their families to exhibit inappropriate healthseeking behaviours. TB patients or people who suspect they have the disease may intentionally hide their status or attribute their symptoms to non-stigmatizing disease conditions, which may intend lead to delayed diagnosis and treatment and spread of the disease in the population. It may also lead to persistent underreporting of TB cases among females. Therefore, there is the need for intensified public education on TB, particularly the mode of transmission, to reduce negative attitudes towards people affected by the disease at the communitylevel. The analyses also identified some correlates of correct knowledge regarding TB disease transmission and cure. Consistent with previous reports, we found that age was significantly associated with reporting correct knowledge. The results demonstrated that, compared to persons aged 15-24 years, persons older than 24 years were more likely to report correct knowledge. In addition, the results highlighted that education and wealth were important correlates of correct knowledge. Comparatively, participants who had at least secondary level education and participants in the richest wealth quintile were more likely to report correct knowledge. These findings support earlier reports from Tanzania [30], India [16], Ethiopia [24], and Nigeria [27]. By administrative region, the results revealed that participants from the Brong Ahafo region of Ghana were less likely than those in the Greater Accra region to report correct knowledge. Although the reasons for this variation are not clearly understood, it's unlikely that the differences in literacy rate and exposure to mass media between the two regions do not provide a plausible explanation [26]. From the results, rural participants were less likely than urban residents to report correct knowledge. Existing data show that knowledge regarding all aspects of TB was particularly deficient in rural areas than in urban areas [31]. Rural dwellers are more likely to be less educated and less exposed to health information compared to urban dwellers. Therefore, knowledge about TB transmission in rural areas may be characterized by more misconceptions. A national study reported that respondents from rural areas were more likely to report that TB spreads through touching infected persons and through mosquito bites compared to those from urban areas [30]. More generally, rural populations have poor access to health information and care, delay seeking care for TB, and are more likely to have TB patients in the family, and should be targeted with interventions to increase awareness on TB [12,31,32]. Finally, the results showed that exposure to media such as newspapers, television, and radio was positively related to reporting correct knowledge about TB disease transmission and cure. These findings align with an earlier study, which reported a significant association between the frequency of listening to the radio and correct knowledge regarding TB transmission [16]. The frequency of reading newspaper/magazines and watching television were not significantly associated with the correct knowledge on TB transmission in the same study. The media are a source of TB information as established elsewhere [33,34]. In Ghana, household possession of television has increased in recent years. For instance, the percentage of households that owned television increased from 43% in 2008 to 62% in 2014 [19]. From the most recent Ghana Multiple Indicator Cluster Survey , the percentage of the population exposed to any form of media has also increased appreciably [26]. These media channels could be used to disseminate information on TB that would increase awareness at the population level and contribute to reducing discrimination and stigma associated with TB. --- Study limitations Although this study has presented findings that are beneficial for targeting interventions to increase knowledge of the general population regarding the transmission of TB and reduce stigma and discrimination among TB patients, there are some limitations. Firstly, this study relied on secondary data from the 2014 GDHS. The questionnaire used only gathered information relating to TB by asking questions on awareness of TB, its mode of transmission, the possibility of cure, and whether respondents would keep the information secret if a household member was affected by TB. Therefore, we had to rely on the available information to create a dependent variable. Information such as signs and symptoms, prevention methods, awareness about DOTS and TB treatment facilities would have added more insights into knowledge about the disease in the general population. Secondly, participants were not asked about their source of information on TB. As a result, by including the variables on media exposure, we are assuming that participants were exposed to information on TB disease from these sources. Indeed, there is evidence to back up our assertion [33,34]. Lastly, this study is cross-sectional by design, therefore, causal conclusions cannot be drawn. --- Conclusion This study found a large proportion of the participants had limited knowledge regarding the transmission and cure of TB. Participants' knowledge regarding the transmission of the disease was limited by misconceptions, including disease spread through sharing utensils, food, touching infected persons, sexual contact, and mosquito bites. Gender difference in the knowledge of TB transmission and cure was observed. Comparatively, females were less likely to be aware of TB and report correct knowledge regarding TB transmission. However, they were more likely to conceal information when a household member was affected by the disease. Rural residents and participants from the Brong Ahafo region of Ghana had lower odds of reporting correct knowledge regarding TB transmission and cure. Exposure to media such as reading newspaper/magazine, listening to the radio, and watching television were positively associated with reporting correct knowledge. Increasing public awareness on TB disease can impact positively on TB knowledge, which may dovetail into positive health-seeking behaviour such as voluntary reporting to health facilities for TB care and reduced stigma towards TB patients, evidenced by findings of the present study and existing reports [11]. --- All the relevant data underlying the findings described in this manuscript have been included in the manuscript. However, the dataset for this study is publicly available at www.dhsprogram.com/data/availabledatasets.cfm. Interested researchers can replicate our study findings in their entirety by directly obtaining the data from the DHS Program and following the protocol in our Methods section. --- --- Methodology: Michael Boah, Martin Nyaaba Adokiya. Writing -original draft: Michael Boah, Mary Rachael Kpordoxah. Writing -review & editing: Martin Nyaaba Adokiya.

Health-seeking behaviour, stigma, and discrimination towards people affected by tuberculosis (TB) are influenced by awareness of the disease. Gender differentials in the diagnosis and treatment of TB have been reported in other settings of the world. However, little is known about the gender differences in the knowledge of TB transmission and curative possibility in Ghana.The analysed data were a weighted sample of 9,396 women aged 15-49 years and 4,388 men aged 15-59 years, obtained from the 2014 Ghana Demographic and Health Survey. The dependent variable, correct knowledge regarding TB transmission and cure was derived from questions on the transmission of the disease and the possibility of a cure. A design-based multivariate logistic regression model in Stata 13.0/SE was used to identify the correlates of reporting correct knowledge.Overall, the mean knowledge score was 6.1±0.9 (maximum = 7). Of the 13,784 respondents, 45.7% (95% CI: 44.0-47.3) reported correct knowledge regarding TB transmission and cure. Men had significantly higher knowledge than women (50.9% versus 43.2%). Misconceptions, including TB transmitted through sharing utensils (13.3%), food (6.9%), touching a person with TB (4.5%), sexual contact (4.1%), and mosquito bites (0.4%) were noted. About 30% (33% women and 25% men) of the total sample would keep the information secret when a household member is affected with TB. In the adjusted analysis, age, gender, education, region, place of residence, wealth quintile, frequency of reading newspaper/magazine, listening to the radio, and watching television were significantly associated with reporting correct knowledge.

INTRODUCTION Poverty and prosperity are two important topics that have continued to be discussed throughout time. From ancient times to the modern era, poverty and prosperity have always colored the world. However, the Bible is very prominent in dealing with the issue of poverty because there are far more poor people than the rich. So the discussion of poverty and prosperity is very important because it has a broad connection in the life of the Israelites, including in terms of ethics . It was found that the factors both generating wealth and poverty are the same as those seen in general. But there are also causes for God's intervention to work in the process. It is stated that indeed poverty can be caused by masculinity and extravagant living . But it is also mentioned that poverty can be caused by natural disasters, such as what happens because of oppression . Leviticus shows how God arranged so that the poor and foreigners had food in ancient Israelite society based on agriculture. When the Israelites reaped the produce of the land, they did not live it to the end and did not collect the crops that were left behind. Also if the grapes fall during picking, do not pick them. All of them were left for the poor and foreigners to collect. The way the Lord works through this Jubilee Year and Sabbath Year is conveyed by James L. Mays thus: The basic observance of the Sabbath Year was a complete rest for the land. No crops were to be sown, nor was a full harvest to be made. Israel was to live off what grew of its own accord in the fields and vineyards. The Year of Jubilee provided for a general overhaul of economic and social life to restore persons and property to their rightful conditions. Land was to be returned to its original owners, slaves were to be set free. It was meant to be a kind of new beginning, a point in time when all who had failed to maintain their place in society were given a chance to star again. In the Sabbath year and jubilee year, the Israelites did not cultivate his land. Whatever grows on the land, it becomes food for the poor and the animals of the forest. And for those who have land, there is no loss. Because in the sixth year before the rest of the land is cultivated, God will pour out the results for the next three years. This belief encourages people to take good economic action. Thus a rich man, will not be harmed when resting to plant his land and give it to the poor. God's way of uplifting the economic life of the poor in Nama penulis pertama dkk / Jurnal Pendidikan dan kebudayaan Vol 2 No.2 88 -93 An Invaluable Education the Priesthood is not simply to provide for life. But assistance is provided to the extent that economic independence and financial freedom are achieved. People who need help must be willing to fight for their fate, not just rely on help. When success has been achieved, the face value in terms of giving sacrificial offerings to God is also required to rise according to the increasing circumstances. And it's his turn to help other poor people. This is what is intended that the economic system designed by God through spiritual upbringing is able to lift the poor out of their poverty and not make them poor . Even in times of poverty, God still requires the poor to make sacrificial offerings according to their ability. The sacrificial offerings given, too, were enjoyed together with other parishioners and priests. In his poverty, people are still taught to make offerings and share blessings with others and also to pay attention to the life of the priest. People are taught to see that he is not a poor man who can only live out of mercy. The rich as well as the poor, if they are mentally poor, support their economy by 'asking' or 'begging'. Enriching oneself through the help of others without wanting to strive to be independent . Verkuyl in his book says that begging is a serious and flawed depravity in society because it has a considerable negative impact: not contributing to the production process and the source of crime and criminality. The poor are not the object of the church's diakonia program. But the church must make the poor a subject in its poverty alleviation. Churches and other Christian institutions should be vigilant in this diakonia ministry. Not thinking narrowly means diakonia ministry based on love and kindness. Prosperity theology or prosperity gospel, sometimes called successful theology, is a Christian theology that teaches that prosperity and success are external signs from God for his loved ones. This love of God is obtained as a predestination, or given as a reward for prayer or good services made by a person. Meanwhile, God's penance aims to provide blessings of success and health . Prosperity theology is one of the theologies in the Charismatic Movement, in addition to other features that emphasize the movement of the spirit . Prosperity theology is a teaching about the perfection of life for every believer in terms of economy and health. In terms of economics, his theology is referred to as "successful theology," which is characterized by success. This theology believes that a blessed Christian is one who is successful in his life. In health, a person who is blessed by God is always healthy and perfect in life, there is no defect, has the ability to heal divinely. This theology can simply be referred to as a teaching that emphasizes that God is the Great God, rich, full of blessings and that people of faith will surely experience a life full of blessings, rich, successful and abundant. In addition, often his teachings highlight offerings or tithes as a form of investment in the Lord, as found in the book of Malachi 3:10. This verse is often referred to in prosperity theology in order to collect offerings in the church. People who believe in this teaching usually make their offerings in the hope that they will get more blessings from God. --- RESEARCH METHODS The research method we made is a qualitative method with a study of the Old Testament context. This paper is an ecotheological analysis that puts forward Poverty and Prosperity based on the Israelites. The object of study are Old Testament texts that are closely related to their particular themes referring to Poverty and Prosperity. The presentation will start from the definition of Poverty and Prosperity in the theological concepts of the Old Testament and how the relationship between Poverty and Prosperity in the Old Testament. The theological meaning of Poverty and Prosperity finally serves as a basis for reflection for ecological theology at the end of this paper. --- RESULTS AND DISCUSSION --- Poverty and Prosperity in the Old Testament The word that appears most "poor man" in the Old Testament is ani : it is used 77 times and especially in the book of Psalms: 29 times. Literally it means one who bows, who lives in a low state. He had to look up, when dealing with a taller person. The "ani" is a hunchbacked person, who is under pressure and in a dependent relationship. The Spanish language has a word that describes that state of affairs well: humilados people, people who are demeaned, derived, which as a result of economic actions can no longer stand tall. The word is obviously the word-relation, the word that describes a relationship, in which it attracts the attention that the one facing the ani is not the rich, but rather the wearer of violence, the suppressor, the invader, who plunges the sesa manya into a low position and maintains it in that state. The existence of oppositionis decisive. Very close to the word ani is the word anaw. Although these words are used occasionally, as if they had the same meaning, the word anaw tends to be less materialistic . The anaw is a person who feels himself small ; he is humble and meek. The pressure here can be more on poverty as a spiritual sekapah. The word anaw in the Old Testament is found 18 times, among. its 11 times in the Psalms. For physical weakness and material kinanism is mainly used the word dal. For example, the word used to describe Pharaoh's oxen from Genesis 41:19 and the next is dal. In Dutch there is a proverb in de dalles zitten , which comes from a dialect of the Jewish language ; meaning: being in a bad position. The proletariat that lives in the inner areais called dalat ha'arets. The word ebyon performed a lot . This word refers to the person who is in the position of asking. It can apply in two ways: to man as a beggar, it can also happen before God . All of these words in the Bible are full of emotion. The words are not neutral, not asal mentioning something out of thin air, but rather pointing to circumstances that require rapid change. It wasn't until the end of the Old Testament that a more neutral sense arose: rush, the poor. The word rush means "to be poor", "to be in a state of poverty." What is interesting is the fact that prophets have never used this more neutral word. In Amos 2:6 and 7 all these words appear in a sentence : "For they sold the righteous for money, and the poor for a pair of shoes; they trampled the heads of the weak into the dust and turned the path of the miserable ." From this quote it also becomes clear that, Amos is not proposing poverty as a neutral matter. It was reinforced again because he put the poor on the same line with a just man. For Amos being poor is parallel to being righteous. I will still discuss this parallel more broadly . Resuscitating the various kinds of impoverishment above it is shown that it must be experienced by every human being who lived specifically in ancient times in Israel in the world because sufferers both in economic terms and from persecution in ancient and post-modern times are never separated from human life except those who are fully dependent on God. Israelis who live on agriculture have to lose their harvest, caused by bad weather resulting in famine. This situation has resulted in many people who need money to buy seeds. But the best solution for those who need money, they lend to the lord with the requirement that the harvest will be given to replace the money. Daniel C. snell states that: In dry years the peasants needed a loan from one season , to the next, and the dry years tended to occur horribly successively the peasants could mortgage his land to his relatives as in Jeremiah 32 or with others. The specific causes of poverty in the Old Testament The Jews generally believe that people who experience poverty are evidenced by disobedienceto God. Even sometimes the poor are perceived as a "social disgrace". Some of them are referring to the sound of God's Word from the book of Proverbs which is written thus "It is the blessing of the Lord that makes rich, the labors will not add to it" Proverbs 10:22. God's blessings will only flow to people who are loyal to God, so that people become rich. But the cause of the poverty that occurred among the Israelites in its history written in the book of the Old Testament is so. Nama penulis pertama dkk / Jurnal Pendidikan dan kebudayaan Vol 2 No.2 88 -93 --- An Invaluable Education In the first books of the Bible, wealth was not a problem. The true nature of biblical thought from that time was that wealth wasa consequence of trying to enforce the rules of God. In the realm of the minds of the Greek people "wealth" was the result of sight and skill. In the realm, the early wealth was a consequence guaranteed by God of the observance of the rules of the Covenant. An example is Abraham. His wealth is only a mere blessing. A righteous or just person experiences prosperity. Throughout the Old Testament this Abrahamistic line is very obvious. The realization that listening to God's commandments, both for oneself and for society is a very rewarding endeavor, still appears Very clearly the thing itu sees in the bondconnected with the fifth word: "that thou mayest be prosperous and happy." Ii is translated: "that thou mayest be old" in Indonesia. It is a sign of shaloom, that all men shall be silent under the vine and the fig tree, respectively, without being surprised by people . It is good now that we note that the Hebrew history of the time of the patriarchs, property or property in which was not a special right at the expense of others in his environment. The possessions were the wealth of the wandering tribe, where all the members in the extended family environment benefited from the prosperity of the tribe. If one member becomes rich, then all the tribesmen get rich In that age of wandering it seems that people did not even use a word for "poor man." Prosperity is generally regarded by Jews as evidence of God's blessing. Abraham was very rich, a lot of cattle, his silver and gold. Genesis 13:2 The Psalmist also praises that wealth, wealth and wealth are in his house forever . They are blessed for having a good faith that is the Fear of God and the morals are full of virtue. When God offered Solomon what he wanted to ask for and would be definitely given. King Solomon only asked for wisdom and understanding, Solomon did not ask for wealth, property or the life of his ruler, nor did he ask for a long life. So talking about poverty cannot be separated from the prosperity in a group, there must be one among those whose economy is inadequate. The Bible never gives a prohibition to Israel, speaking about prosperity it is never separated from the land because it is from the land that the Israelites make a living and a place to live. The source of livelihood for the Israelites was from land or agriculture. Farming is done by Israel to make ends meet and produce additional leftovers to sell outside of the needs of his family . --- Measures of Poverty and Prosperity According to Boerma, Baker, and several other sources as summarized earlier, there are three measures of poverty and prosperity, namely: a. Economics Based on the historical facts of biblical literature it is clear that for the Israelites poverty was closely related to the economic system and structure of society of that era. That's why in Genesis especially the word "poor" does not appear but the term "starvation" . For, in the days of the patriarchs, it was understood that wealth was not a private property, but a tribal or family wealth. It is also understood as the result of his labor in obedience to the rules established by God.  House But as Israeli life moved from a nomadic lifestyle to a peasant one and they remained in residence, the relationships of ownership changed. Where the house where ordinary people live only has one cubicle. Some of the chambers were high-floored and the other parts were made lower. The wealthy had larger dwellings with many cubicles made around the inner court. The houses were flattened by the roof and the stairs leading to the roof were made to the outside of the house. Above the room was often made again a room. ---  Soil Previously, economic differences and social classes did not exist because the family was a financial unit, but now social class and poverty have become social problems. This resulted from the settlement in Canaan where the Israelites turned into small farmers who stood alone, managed, cultivated a piece of land to be their own. Each lived off the land he was cultivating. If the land he Vol.2, No.2, Juli 2022, pp.88 -83 cultivated was infertile, the harvest failed, he became poor and sold himself and his family as slaves. So the competition of life is no longer in the framework of togetherness, but maintaining and enriching oneself. This kind of pattern of life causes people's joints to change. The poor confronts the rich . The gulf between the rich and the poor is widening. b. Social Poverty in the Old Covenant and wealth are actually closely connected with God. Both notions are considered correlative. The view of it is more on its aesthetic aspect than in its economic aspect. From his natural view, poverty is really an ugliness. Although God always causes all things, man himself can be blamed as the cause of the ugliness . In general, OT acted in defense of the poor . The prophets protected them. The law seeks to alleviate its shortcomings. Poverty is seen as a contempt, and does not count anymore. Because he is poor, then his rights become less than those of others and his mind is also judged to be less, for example; Nabal history . Being a poor person is equivalent to being an oppressed person, the poor are trapped in a vicious circle that can only be penetrated by the treatment and attitude of the rich, which never happens. The poor become the same as societyincluding the lower classes-people who do not listen to them. "being poor" and "being stepped on" became ama. The Standard Phrase "treads on the poor" says the cause of poverty lies in the rich. --- c. Spiritual The Books of Wisdom have actually recognized the division of society in various social levels. The background to this division is not injustice as it is in the prophetic books, but it is because this fate and deeds are mainly seen in the book of Proverbs. Job questioned this link. Wherefore we find in Job who was obedient before God, lost all his possessions, his children, and he slept in dust because of the sickness he suffered. The people of Job's day were convinced of the existence of a just God-ordained law of karma. Good and righteous people, wise people, must be rewarded by God. They became happy, prosperous and prosperous and succeeded in their lives. Misery and misfortune can temporarily befall a good person, but it is just a kind of trial and trial. In the end they will be blessed by God and become happy. On the contrary: fools, wicked and ungodly are surely punished. Even if they seem to be happy and prosperous, but it is only for a while and the happiness is quasi-mere. Job's experience shows that it is not always poverty as a punishment or otherwise material wealth as evidence of god's blessed people. For, it is manifestly shown that Job was a righteous and honest man, fearing God and shunning evil. Thus the category of blessed by God is not to all the rich . The rich are called blessed by God to the extent that his wealth is not the result of extortion or that causes others to become victims. His wealth is not an obstacle to heaven, for the Bible does not reject man from enjoying the materials/goods of the earth in the corridors of honesty, away from extortion, oppression of his fellow human beings. The notion of blessing or blessing is not as simple as giving materially and physically. The word blessing is translated from the word "barakh" which has the literal meaning of maintaining a deep and intimate relationship with God and others. So even if a person does not have abundant wealth, or material success in his life, if a person remains in a deep and intimate relationship with God and others, that person is also referred to as a person blessed by God. On the other hand, even if a person is materially abundant in wealth and wealth, but all are obtained regardless of his relationship with God and the principle of justice, honesty, and love, the situation is not a sign of a life blessed by God . --- CONCLUSION Poverty does not arise by itself. People don't get poor because he's lazy, but people get lazy because he's poor. The beginning of poverty is something about low economic levels or because of coincidental factors. In Israel's day wealth treated the poor as inferior. Poverty is seen as a symptom of a negative, despicable, deprived, and useless human attitude. Poor are seen as impossible to have wisdom so that they will become oppressed. The relationship between the poor and the rich is a causal relationship. Poverty in the Old Testament points to three groups, namely widows, orphans and nomads. God pays great attention to the poor, the afflicted and the oppressed. Talking about poverty is also inseparable from prosperity. There are three measures of poverty and prosperity, namely: economic, social and spiritual. If there are still many poor people --- Nama penulis pertama dkk / Jurnal Pendidikan dan kebudayaan Vol 2 No.2 88 -93 An Invaluable Education today, it is not a reason not to inherit the kingdom of heaven, but also the faith and beliefs of Christians who are part of the inheritance of the kingdom of heaven. Through this understanding, rich Christians are willing to share with those who are poor to become a channel of blessing and the embodiment of God's providence of His people. So both poverty and wealth are actually closely connected with God. Because both topics are considered to exist in a reciprocal manner. The standard of wealth is not material from God, the Spiritual standard is not necessarily rich. Rich is not the standard of blessing or the main reference because demons can also provide. We must enter into the theology of the cross invisibility of matter but spiritual wealth. Wealth is the impediment to the entry into the kingdom of heaven the word of God christians will not be rich to the material.

This study aims to analyze and describe how poverty and prosperity were in the time of Old Test. Poverty and prosperity became very important because they had a wide interrelationship in the life of the Israelites. In the Bible we find that the factors both generating wealth and poverty are the same as those seen in general. In his poverty, people are still taught to make offerings and share blessings with others and also to pay attention to the life of the priest. Prosperity theology or prosperity theology (English: prosperity theology or prosperity gospel), sometimes also called successful theology, is a Christian theology that teaches that prosperity and success (rich, successful, and perfectly healthy) are external signs from God for his loved ones. Furthermore, at the end of this paper it will be concluded that Poverty and Prosperity that the standard of poverty and prosperity is not material from God.

Introduction Many western countries face a shortage of physicians in rural areas, especially regarding general practitioners . Studies indicate that the number of GPs will continue to decline further in the coming years. In Germany, this is based on two demographic factors. First, one-third of the currently practicing GPs will retire in the next 10 years. Second, only 10% of young physicians choose to work as generalists, so that not enough doctors will be available to fill the resulting gap . In the past, short-term employment contracts and frequent position changes during postgraduate training discouraged young doctors to take up a GP career . In addition to the general lack of interest in a postgraduate training as a GP , there is a shortage of GPs who are willing to take up residence in rural areas . Therefore, there is a growing concern that the continuously ageing society will not be provided with adequate, close-to-home health care in the future . Several approaches have been developed to counter this foreseeable shortage . Most of them are based on three main approaches to redistribution strategies: normative approaches , utilitarian approaches and coercive strategies . However, there is a need for strategies focusing on rural communities that seem less attractive to doctors looking for a practice . Several international studies and organisations have attempted to define 'rurality ' . It seems difficult to find a generic definition of 'rural', since there are various rural regions that display different economic and social development . The term therefore refers both to areas with a strong connection to cities and their infrastructure and to peripherally located communities . Additionally 'rural' is often defined by objective criteria such as certain forms of landscape, demographic structures and settlement, low population density, agriculture and sociocultural conditions . The OECD, for example, regards an area as rural if the population density is less than 150 inhabitants per square kilometre . The conceptualization of rurality has since been expanded to be defined as a subjective, social construct, rather than an objective, material reality . Whether a region is regarded as rural seems to be, above all, a subjective interpretation . Therefore the individual's perception of rurality is an underestimated factor as it might influence one's decision to want to live and work in an area. The aim of this study was to explore individual determinants that influence the perception of rurality and to elaborate strategies against GP shortage in rural areas. --- Methods For this study, a qualitative design was chosen to gain a profound understanding of individual motives and behaviour as well as insights into physicians' subjective attitudes regarding rural areas . This was achieved by using a combination of qualitative methods: brainstorming, focus groups and semi-structured interviews. A focus group is a moderated discourse procedure in which a small group of people is stimulated by an input to discuss a specific topic . The first focus group was a brainstorming group. Brainstorming is a scientifically recognized tool, capable of generating relevant ideas and solutions to problems via creative group interaction . The semi-structured interviews were added to the study to maximize the range of topics and to give the respondents the opportunity to bring forward unforeseeable points of view . The discussion process was structured by key questions, which served as a semi-structured guideline and ensured that all important aspects were addressed. --- Selection and description of participants Medical students aged over 18 years as well as postgraduate trainees from the German university cities of Lübeck , Dresden and Heidelberg were asked to participate in this study using email lists . The groups were stratified based on demographic criteria . The aim was to create a homogenous group of same-class people, who are more likely to have similar attitudes and orientations during a discussion and are thus easily reproduced . In total, three focus groups were assembled . The first two focus groups were made up of medical students from the University of Lübeck. Subsequently, a third focus group with postgraduate trainees was held in Dresden. Additionally, nine postgraduate trainees from Heidelberg were interviewed by telephone . --- Data processing and evaluation The focus groups took place in an uninterrupted setting. Every conversation was recorded on a digital recording device and subsequently pseudonymized, transcribed and analysed. The utilized evaluation method was the qualitative content analysis according to Mayring, which was focused around a category system. First, the categories were developed deductively based on a selection criterion, which is created by the key questions. Thus, immaterial, decorative or deviating aspects of the transcripts were excluded . Afterwards, two independent researchers inductively developed main and subcategories from the participants' answers. These newly developed categories were compared and discussed with a third researcher until consensus was reached. Both the intersubjectivity and the replicability of the results were ensured by this method . From the citations of the respective categories, individual, concise statements from the participants were selected for illustrative purposes. After three focus groups and nine interviews, no further recruitment efforts were required. The results of the following key questions are presented: --- How do you personally define 'rural'? Do you have personal experience with rural areas and if so what kind of experience? Which factors would make you want to or prevent you from practicing in rural areas? In the responses, F denotes 'focus group', T denotes 'pseudonymized participant'. Unlettered responses took place by telephone. --- Ethics approval The study was approved by the ethical review committee of the University of Luebeck . --- Results Altogether, 33 participants were included in the study and 9 men . The average age was 28 years . --- Table 1: Sociodemographic structure of study participants --- Determinants of the subjective perception of rural areas General associations: The participants tried to define 'rural' by means of population density, a certain landscape such as a farming with dairy cows, fields, forests and animals in the meadows, childhood memories or the accessibility to infrastructure. --- For me, an area is rural if the population density is low […], if I had to come up with a number, I would estimate 5000-10,000 inhabitants. 2. 24 One of my early childhood memories is this farm, where we always went to get our milk. F2.T7.62 Positive associations: These were mostly descriptive, relating to nature, peace, vastness and space. Other factors mentioned were favorable property prices, the ability to own a house with a garden, to be a self-supporter and to be close to leisure actives such as hiking or mountaineering. --- Large plots of lands, pastures and forests. People are not living in terrace houses but in their own ones. You have a certain vastness, a feeling of space and of vegetation. F2.T1.153 In addition, some professional benefits that the countryside offers were addressed, such as less competition, being able to pursue your individual working style, to have a secure income and a special occupational challenge. Also, the support from municipalities and mayors was perceived as positive. There will be support from the communities in the village. If you want to open or inherit a practice there, you're more likely to get help. 6.126 The social environment of a village community had positive as well as negative associations. Although there are beneficial aspects such as getting help from the villagers or being able to socialize more quickly, particularly the 'everyone knows everyone' stereotype was perceived ambivalently. Most notable was associated social control, lack of anonymity and gossip. Furthermore, the prospect of living with people who may have a different mentality, a lack of 'out-of-the-box' thinking and openmindedness was mentioned as challenging. Moreover, the absence of friends was mentioned repeatedly. --- This has both advantages and disadvantages. You get more help if you need it but I think it's just terrible that every step you make is observed and judged and everyone knows what you are doing. F2.T5.165 All your friends are somewhere else and/or too far away. --- F1.T5.311 Negative associations: An initial and frequently emphasized negative aspect of rural areas was an everyday life in which a car is essential due to predominantly poor accessibility to public transportation. --- So even if you're mobile and have a car, it is exhausting to rely on it all the time. […] Where I originate from, the buses stopped running at two o'clock in the afternoon on Saturdays. --- F2.T4.108 Another disadvantage is seen in the lack of possibilities and choices that the countryside offers with regards to leisure or educational institutions. The absence of cultural offerings like cinemas or restaurants/pubs and the lack of possibilities to pursue exclusive hobbies was relevant to the students, even if they were admittedly rarely used. Advantages of the city: These negative associations with living in rural areas added to the advantages participants associated with living in a city. The variety of cultural and leisure activities and the comfort that comes with good accessibility to infrastructure and educational/professional possibilities were emphasized. Convenience was seen as something that you learn to appreciate over time and that would be difficult to give up. --- A lot of variety is --- The almost six years [at the university] have changed me a bit. Now I say: 'A big city is cool; I can do anything here like going to the movies or something.' I think this has a lot to do with the fact that some say, 'I've studied in a big city and have learned to appreciate it all, now I do not want to go back to a small town where there is nothing.' F1. T1.36 Prejudices: This category includes two different aspects. First is the one addressing the personal image of 'rural' in general and second is the alleged image of GPs by other colleagues. --- Prejudices against 'rural' The 'rural' image was mentioned as influenced by the media, especially by television. In this context, everyday life was perceived as romanticized and with unattractive everyday life conditions. --- It's presented [in TV] as exaggeratedly idyllic, but on the other hand not attractive for the personal impression. … They're not displaying a bad picture per se, because it all looks very nice … but just not attractive for young people's notions … for what they want professionally. F2.T3.708 Additionally, the simplicity of the people, the mostly elderly population in rural areas and the lack of prospects and emigration were illustrated. One participant described her attitude as follows. Also, a lot of people, not all of them, who still live in the country … I don't want to say don't evolve -that sounds so condescending -but they don't adapt so well, socially. Most of the young people who are still there are kind of … I don't know … not mobile … or are drawing off Harz 4 [unemployment benefit] and the kids having ADHD. F3.T4.410 --- Prejudices against GPs in rural areas The participants pointed out that family medicine has a bad reputation, which is often influenced by other colleagues. This mindset is aggravated further when it comes to the family doctor from the country, who is often depicted as particularly incompetent. 'Oh, the GP has admitted [the patient] to the hospital. Nothing good is going to come out of this.' And then [if the GP is] from the country, which I think might intensify itself [be even worse than if the GP was from the city]. F1. T1.375 --- Factors influencing the 'subjective perception' of rural areas and subsequent residential environment choice Personal connection and life stage were particularly tied in with participants' associations with and perceptions of rural areas. Personal connection: An essential factor for interest in a rural area was primarily a personal connection. This especially pertains to the person's childhood and whether part of the family still lives in the rural area. Other factors influencing that decision were partners, friends, hobbies and a positive first exposure to rural areas . Without a personal connection, it was very unlikely for participants to imagine or choose a life in rural areas. --- Whether or not you move to the countryside strongly depends on what is familiar to you. You don't just go somewhere and build a life in the middle of nowhere. You usually go there if you have some sort of connection to it. F2.T1.375 Life stage: Another factor was perception according to life stage. Students prefer to live in the city. In addition to experiencing university life and being able to obtain an education, students are mainly looking for entertainment and diversity in this life phase. The relative ease of finding a partner in the city compared to in a rural area was also discussed. If there was a relationship, the compatibility with the partner's job could also be a limiting factor. If he or she was not able to work in the countryside, a relocation was said to be more unlikely. --- At the moment, I would rather move to an area where I have more opportunities to meet someone…. That's why I am currently close to a big city again. 9.214 But I believe that what the partner is doing and what he prefers can make or break the decision. Not only that he would get a job, but also that he wants it [to move to the countryside]. F1.T1.464 For the life stages of family planning and of being young working parents, help a family can provide was perceived as a strong asset. In those life stages, it was often decided to move closer to the relatives. The future living environment must offer good educational facilities and leisure activities for the children, which they can ideally reach on their own. If parents are concerned that there are not enough opportunities for their children in a community or village, they are more reluctant to settle there. --- Without a child I would be a different person and would work differently than I am now. … Now, it is more important to look at the child's well-being. 3.118 Also important is accessible infrastructure for daily life, which includes grocery stores, public transportation , day care, kindergartens, primary schools and hobbies for the children. Where I live, I would like to have infrastructure and facilities that cover my basic needs. … at least a bakery, a pharmacy, a primary school, a kindergarten. And at least a normal supermarket, where you get the essentials. 6.86 Clinical insecurity: Clinical insecurity was found to be experienced specifically by recently graduated students. They subjectively felt too young and not professionally competent enough and therefore feared too much responsibility too soon in the case of working in a rural area. --- I'm all alone, there is no one around that I can ask. I do not even have a colleague and … at least at this point this would scare me a lot. I would definitely say that this is a main reason for me not to work there [in rural areas]. F1.T6.105 Furthermore, participants imagined it being difficult to separate work and private life -especially as a GP in rural areas -and were thus afraid of little free time for themselves and their family. Also, the lack of collegial exchange and the fear of missing a comprehensive education was mentioned. --- It's challenging to make sure that you don't end up just living for your patients while your own life as well as relationships come too short. F1. T1.264 --- Strategies to increase the attractiveness of working in rural areas It has been suggested that getting people who are already connected to rural areas to study medicine has the greatest benefit, as they are most likely to go back home. Luring someone to the countryside who has never been there is difficult … I think it's more important to motivate as many people as possible who derive from rural areas to study medicine. 6.48 Additionally, the idea of establishing a personal connection with rural areas, if not already existing, has been mentioned. An example was rural internships during medical school that should be supported financially and with housing opportunities to allow the participants to gain experience and exposure. Further suggestions were a paid voluntary social year or a research opportunity in the countryside. --- I've decided to do a GP internship, but theoretically I could have only done it where I have a place to sleep because I wouldn't stay in a hotel the whole duration. Housing opportunities would therefore be a good incentive. F2. T6.506 Well he [from the city] has to experience it! That means he would have to do internships there.... I think he could only imagine it, if he worked there. 6.108 Another strategy was to improve the confidence that students and young postgraduate trainees are lacking, so that they start considering working as a GP in rural areas. This included working as an employee or in a group practice, having a vacation replacement, providing a mentor for background help, improving communication infrastructures and implementing structured training and 'work preparation' tutorials during school. Purely financial incentives were not enough for the participants. --- It would be interesting to get involved in a joint practice [T1 and T4: 'yes'] , where you have one or more colleagues, with whom you can meet and exchange. That way, you are not alone from the beginning and don't have to take care of everything by yourself. F1.T8.134 --- To be paid €60,000 as an incentive is well and good … but [with it] I cannot buy a school for the children or get a better internet connection. F1.T9.209 A final approach involved the invalidation of prejudices. Participants suggested more transparent information on municipalities and their existing offers . In particular, regions with benefits of both the city and the countryside should display their options. Also, the attractiveness of local work conditions could be highlighted by means of role models, for example. The local possibilities and that you have more than you think should be highlighted more …: 'We have the infrastructure, we support you, we give you financial and other incentives, the education for your children is good'. If this was communicated, then you would perhaps think about working there for a second. F2.T3.735 Table 2 shows the category system elaborated from the statements of the medical students and postgraduate trainees. --- Table 2: Category system elaborated from participant statements --- Discussion In order to develop tailored strategies to counter physician shortages in rural areas it is necessary to understand the determinants influencing the later residential environment choice. Therefore, the aim of this study was to explore which aspects are implicated in facilitating or hindering choice of residence. The most decisive factor here is the subjective perception of rural areas. This in turn builds on general associations, positive and negative associations and benefits of urban life. In the process of this study, three main pillars were identified that significantly influence subjective perception: personal connection to a certain area , life stage and prejudices associated with rural life. Considering the work as a GP in rural areas, increasing attention was paid to the clinical insecurity that students feel after graduation. Participants in the present study showed a respresentative degree of variation in gender regarding the ratio of men to women and a good reflection of the general distribution among medical students . Whether a region is regarded as rural is a subjective interpretation . Concepts associated with rurality in this study included general ones such as population size and infrastructure, with some positive and some negative 34 . They are comparable to former studies, where 'nature' as well as different aspects of the social fabric were also predominantly associated with rural areas . In the literature, the two opposite perceptions of rurality have been conceptualized as 'rural idyll' and 'rural dull' . On the one hand, the rural idyll combines all positive aspects about the countryside. In the present study participants associated it with higher standard of living for less money, near-home leisure activities in nature and professional aspects, such as stronger relationships with and appreciation from patients, as well as community support. These positive associations were mainly stated by participants who originated from rural areas. They felt familiar with the environment and the social fabric and were more likely to select rural areas as their work locations than participants from the city . Thus, the personal connection that one has to the 'rural' strongly influences how a rural area is perceived and has an important impact on the later residential environment choice. Previously developed strategies partially addressing have been referred to as, for example, 'rural pipelines' which recognise that place of birth and rural experiences in life shape a preference for rural living in the future . Approaches such as recruiting students with rural backgrounds, establishing rural clinical schools and establishing universities in rural areas such as the Northern Ontario School of Medicine show that fostering this correlation can increase the probability of rural practice . Although studies already indicate that a certain amount of time must be spent in rural areas to form a connection, the length of contact needed to have an effect is still uncertain . However, these initiatives target people and medical students who already have a connection to rural areas. Since positive associations increase the probability of later rural environment choice, a new aspect of this study was the necessity of new strategies that create a positive connection and awareness of rural areas, especially for those who have never had contact with these areas. On the other hand are the negative associations with rural areas, which fit the concept of 'rural dull'. It refers to the aspects of fewer possibilities, social control, gossip and backwardness . Personal experiences reveal the potentially negative side of living in rural areas: distance to the next city, need for a car, feelings of loneliness, difficulties of finding a partner and the perception of a special mentality of the people. Those aspects are perceived as particularly aggravating by juveniles and point out the essential influence of life stage on whether 'rural' is rated as positive or negative. The attitude differs between adolescents/students and young parents: younger people often prefer living in the cities where education choices are greater and they can enjoy the metropolitan advantages that are not available in rural areas. However, when entering a new life phase with a new job or partner, and particularly with the intention to have children, they aim to move to a quieter and safer rural residential environment . Additionally, participants expressed the wish to return to their families, where more organizational possibilities and support are available for the children. Rural communities should therefore emphasize their 'family friendly' surroundings, especially to young parents or couples intending to start a family . Participants, especially those who didn't originate from rural areas, seemed poorly informed about their local conditions, which are much better than expected in many places . This might be due to media and cultural influences. These prejudices might be aggravated by passing on negative associations to others. Additionally, the subject of family medicine and the occupation as a GP in rural areas is plagued by prejudices. These surround the concept of rural work and are intensified by colleagues who stir up negative associations with the subject. Often, young doctors who express a desire to be a GP are advised to opt for a 'decent' field of medicine . This 'badmouthing', defined as 'unwarranted, negative, denigrating, even sarcastic comments made by doctors about other doctors', can have an influence on the current career choice of medical students . Moreover, persistent negative perceptions of income disparity, workload, and stress, appeared to counter the positive perceptions of meaningful work and esteem . There is probably an additive effect for people who are not convinced about living in rural areas: negative perceptions intensify with the image of working as an unaccredited rural GP. Therefore, the high job satisfaction of GPs and the high satisfaction of patients with their GPs needs to be pointed out more intensely . An interesting new aspect was the clinical insecurity that participants expressed. They were concerned that they were not competent enough due to a lack of specific education during their studies. There is indeed evidence that newly qualified GPs in Germany are missing major competencies . Therefore, clinicalpractical abilities should be a more important aspect of under-and postgraduate studies in Germany to strengthen postgraduate trainee self-confidence. In some European countries this aspect is already addressed, for example by introducing departments of postgraduate education at medical faculties . Strategies that might be started by universities in Germany include a wider range of practical elective courses and a culture of feedback and supervision. These important approaches were also taken up by government and are reflected in the Federal Ministry of Education and Research's Master-Plan 2020 and the building of excellent centers for family medicine specialty training . Participants feared a lacking professional anonymity and therefore no work-life balance. Although they could imagine living in the country, most of them did not want to practice in the same place because it was too 'close' to the patients. This is primarily due to the change of the perception of the medical profession in the younger generation: work today must rank alongside quality of life in the form of work-life balance . Real working hours as a GP in rural areas need to be communicated in contrast to the perceptions that GPs in rural areas have longer working hours than counterparts in cities . Being able to work as an employee or in a group practice could further reduce these concerns and help with mentioned fear of missing collegial exchange. --- Limitations Selection bias may have been an issue in this study as participants might have been highly motivated to choose a career as a GP. Additionally, results might not be generalized for other countries because of the special situation in German medical schools and the infrastructure of German rural areas. --- Conclusions Four important determinants shape the perception of rural areas in Germany and need to be addressed to counteract physician shortages: personal connection to rural areas, different life stages, prejudices towards rural areas/family medicine and clinical insecurity.

The increasing shortage of physicians, especially general practitioners (GPs), in rural areas is an issue in most western countries. Many redistribution strategies have been utilized in the past to counter this shortage. The physician's perception of rural areas might be an underestimated aspect of a subsequent choice of living and working environment. The aim of this study was to explore determinants influencing this subjective perception of rurality and to develop further strategies to resolve the physician shortage in rural areas. Methods: A qualitative study with semi-structured interviews and focus groups consisting of medical students and postgraduate trainees in Germany was conducted. The interviews and focus groups were recorded, transcribed and evaluated both deductively and inductively by two independent researchers using qualitative content analysis. Results: Participants had an average age of 28 years. Of 16 medical students and 17 postgraduate trainees, there were 24 women and 9 men. The perception of rurality was strongly influenced by a personal connection (eg family background or personal experiences), which resulted in positive and/or negative associations with rural life and was also a decisive factor for the decision to live in rural areas. Without any kind of personal connection, the choice to work in a rural area was unlikely. Depending on life stage (eg having partners and/or children), different factors were relevant, such as cultural offerings, diversity, accessibility and quality of educational structures (kindergarten/school). Prejudices and a negative image of family medicine deterred students from choosing a career as a GP, whereas postgraduate trainees didn't feel adequately prepared to be fully competent to practice as a GP outside a metropolitan area. Conclusions: Strategies must be developed to raise awareness and create a personal connection to rural areas during under-and postgraduate medical training. Attention should be given to highlighting family friendliness (child care, schools), the attractiveness of working conditions and to improving deficiencies in local infrastructure (internet and or traffic connections). Additionally, there is a need to strengthen the national standardized and structured postgraduate training as well as collegial exchange and the possibility to work in a group practice or as an employee in rural areas.

[T]he issue that concerns us is not who has the power to tell the storyhowever important that might be; it is rather how power shapes what any true story could possibly be. 1 Can decolonising the university create possibilities for new stories to come into being in the wake of the devastation wrought by colonisation? This is the hope of academics responding to wider social activism as well as internal debates about cultural imperialism. Those in former imperial metropoles and various postcolonial and settler colonial locations have called for universities to decolonise themselves by fostering new stories and storytellers. They make forceful arguments for the need to undo existing power structures which marginalise issues of race and representation. They aim to remake universities as places of substantive freedom for a much wider diversity of scholars and subjects than has conventionally been the case. 2 In Aotearoa New Zealand a particular instance of decolonising universities is under way. This is one that, while promising the telling of new stories, also highlights contradictions in decolonising aspirations. In this south Pacific archipelago, annexed to the British Empire in the mid-nineteenth century, universities are conjoining the activist idea of decolonising with language that refers to a distinctive form of state governance that foregrounds a political relationship between the Crown and Māori. Several universities have committed themselves to a 'Treaty partnership' with mana whenua,3 that is Māori iwi who hold local territorial authority. By so doing, universities seem to be ceding some of their autonomy to an iwi positioned outside of the institution, while at the same time universities mimic expressions of state power-sharing that are only a few decades old and that are the subject of considerable political dispute. The idea of being a 'Treaty partner' is rooted in more recent interpretations of the colonial Treaty of Waitangi/Te Tiriti o Waitangi, signed in 1840. The Treaty was one basis for annexation of the islands to the British Empire. Despite its historic role in annexation, in recent decades its meaning has been rehabilitated: the Treaty has come to be regarded as the founding document of a bicultural nation. The current story told about the Treaty is that, in two somewhat different language texts, it allowed for British governance while guaranteeing Māori certain rights. This included, in the Māori language text, the ongoing right to exercise rangatiratanga, which is variously translated, sometimes as 'sovereignty' as well as 'chiefly authority'. 4 Today, the Treaty is invoked in law and public policy to signify reparation and biculturalism, referring to indigenous Māori culture and that of the mainly British settler descendants, or Pākehā. The Treaty also evokes Māori political and social goals including power-sharing, autonomy and equality, even when these might be in tension with each other. While politically useful to an extent, this story of the Treaty assumes a consensus about the past. This is one that affirms a present-day view rather than examining different meanings of the Treaty in different historical contexts. When such a consensus underwrites a political project and institutional changethe conjoining of the decolonising project with a state political processit needs to be questioned and carefully analysed. The consensus view of the Treaty is premised on a myth-history that underwrites current institutional claims to decolonising in the name of 'Treaty partnership'. While this myth-history draws on real events , it retells such events in terms of a story of what ought to have occurred. Thus, it is written with a view to enacting its ideals in the present, rather than seeking to examine the messy complexities of past realities. By presenting a myth-history as agreed-upon fact, the colonial Treaty can thereby be reimagined as a framework for decolonisation in contemporary university settings. Yet the Treaty is and has been a contested text, event and idea. Recent university policies invoke a particular, static, idea of the Treaty as if debate about it has been resolved. Ironically, the writing of a critical and rigorous constitutional history, one that may seek to question the role and significance of the Treaty and examine its many lives, is likely to be regarded as an act of bad faith in such a context. The academic historian faces moral dilemmas and unknown pitfalls in pursuing such a critical account. Moreover, the achievement of wider institutional goals via an unquestioned myth-history threatens to lead to conformity of opinion. While these university policies aim to advance social objectives, they risk thwarting the role and responsibility of academics, and particularly historians, as 'critic and conscience' of society. The challenge that I describe is different from that faced in the United Kingdom and Florida, where right-wing governments have conflated 'academic freedom' with a broader 'free speech' agenda. Amia Srinivasan has recently pointed out that the former is 'the freedom to exercise academic expertise in order to discriminate between good and bad ideas, valid and invalid arguments, sound and hare-brained methods'. This is what she argues is under 'attack' from the new Higher Education Act in Britain according to which universities may be forced into compliance with the 'right's doublethink around free speech'. 5 What I analyse in this essay likewise throws up questions of how universities are or are not autonomous from the state and politics, although the context is very different. I associate the current challenges in Aotearoa New Zealand with a politics of progressive nationhood in a fraught postcolonial context. I am not describingand do not believe this to bean 'attack' on academic freedom. Instead, public universities are negotiating a delicate compromise between activism and the demands of the state in the wake of colonisation. But a good-faith effort to right historical wrongs may have the unintended consequence of circumscribing the 'freedom to exercise academic expertise'. This may happen by limiting the choice of research and teaching topics and by reshaping individual academics' ability to carry out such work in a way that they see fit according to their varied expertise, interests and skills. --- Universities and 'Treaty partnership' The predicament for historians and other scholars has become clearer as universities in Aotearoa New Zealand have announced new vision statements and strategic plans. These claim to be led by principles of the Treatyusually referring to the Māori word 'tiriti' to indicate allegiance to a particular interpretation. For instance, according to its 'Vision 2040' interim statement, the University of Otago 'aspires to be a Tiriti-led university'. 'Te Tiriti' is the 'foundation document of our nation' and this institution will now be trying to 'liv[e] up to' the 'kind of relationship it originally envisaged'. This includes 'advancing Māori development aspirations' and 'integrating te ao Māori, tikanga Māori, te reo Māori and mātauraka Māori' into teaching, learning, research and support services. 6 Other universities have also emphasised the importance of the Treaty in institutional commitments. Massey University's 'Strategy 2022-2027' makes a similar set of claims about being a Tiriti-led institution: As a Tiriti-led University we are committed to demonstrating authentic leadership in contemporary Aotearoa New Zealand as we uphold Te Tiriti o Waitangi, the founding document of our nation, and its principles through our practice. We see this as a critical requirement to advance more inclusive and socially progressive outcomes for Aotearoa New Zealand. We will achieve this through provision of well-resourced Te Tiriti education, including research, teaching and collaborations that emphasise Te Tiriti-informed partnerships. 7 Why this emphasis on being 'Tiriti-led'? The answer is to be found in part in relation to broader political developments in New Zealand. In the absence of a single document, or collection of documents, that we could refer to as the constitution of New Zealand, the Treaty of Waitangi/Te Tiriti o Waitangi has achieved such a status. This has occurred in a distinctive context, for a particular purpose: to establish legitimate terms of cohabitation between two peoples, who have at times opposed each other in the past , and now seek to reconcile without giving up important differences that make them distinct. According to this story, while the Treaty marks the beginning of a new nation, it has also preserved cultural continuities. This idea is significant for how the Treaty is put to work in present-day policy-making and in forging a broader political consciousness: invoking the Treaty seems to invite the new without destroying the old. Remarkably, this idea of the Treaty has permeated much of public life in the country. The interpretation of the Treaty as foundational to biculturalism, though now appearing as timeless orthodoxy, is only one of many that have been made by historians, lawyers, politicians, activists, rangatira and others over time. In other historical contexts, the Treaty was ignored or marginalised, or accorded a blithely symbolic meaning in making claims about the unity of the nation. Māori have interpreted the Treaty in many different ways since 1840: as a compact guaranteeing equal citizenship; or as a promise by which the state might be held to account, particularly in regard to land loss and rights to fishing and harvesting; but also as an event entailing considerable duplicity, one to be contested and even refuted. Even at an important meeting of chiefs and government ministers in 1860, just twenty years after the signing of the Treaty and on the verge of war, Māori understanding of the Treaty's terms and promises was not settled and their speeches did not even reference the Treaty extensively, as Lachy Paterson has carefully examined. 8 A common activist slogan in the late 1970s and 1980s was 'the Treaty is a fraud'. 9 The slogan, associated with the activist group the Waitangi Action Committee, responded to the emphasis from the 1970s onwards that the 'two texts' , one in the English language and one in the Māori, appear to differ markedly, partly in meaning as well as in intent. Of particular concern for historians has been how sovereignty, government and possession were translated by missionaries at Waitangi and elsewhere, and how these ideas were understood at the time and subsequently. Since the 1970s, following a seminal article published by the public historian Ruth Ross in the New Zealand Journal of History in 1972, the differences in meaning between the two language versions have preoccupied lawyers, judges, activists and historians. 10 In a recent book, Bain Attwood shows that Ross's argument in this unexpectedly influential article came to be misinterpreted. 11 Nonetheless, he traces how her 'minor' argument that the Māori textor 'te Tiriti'was the original text, since this was the one that many, though not all, rangatira in 1840 signed, laid the groundwork for a major reinterpretation of the Treaty. This is one that has underpinned the work of the Waitangi Tribunal, established in 1975 to inquire into Māori grievances regarding breach of the Treaty and recommend redress. It has also been highly influential in the courts and public policy. While the different language texts have been the focus of considerable attention and debate, what has received much less attention in the public and political spheres is the quite radical change over time in political and constitutional meanings ascribed to the idea of the Treaty, as Attwood forcefully demonstrates. It is primarily the matter of this differencethat is, the historicity of Treaty interpretation and its plural meaningsto which I draw attention. 12 The Treaty has been, and should continue to be, the subject of reinterpretation and even contestation. Yet such interpretive dissensuswhich is ongoingbecomes difficult to discuss and debate openly when te Tiriti is presented as a set of incontestable, fixed, principles by which a university defines itself. Indeed, it is as if, by becoming 'Tiriti-led', universities in Aotearoa New Zealand are proposing that their interpretation of the Treaty is the framework by which academic workteaching and researchis to be assessed and valued, however vague and ill-formed. Both of the university statements quoted earlier refer to te Tiritithat is the Māori version and what Ross viewed as the original text. Both universities represent their particular responsibilities to te Tiriti in terms of advancing Māori language and knowledge, custom and law. Further, these universities argue that in order to make good on the obligation to uphold the original relationship envisaged in the Treaty, they will be partnering with mana whenua. In the case of the University of Otago, it will be 'proactively partnering with Kāi Tahu as mana whenua' and those iwi in other locations where the university has a presence. 13 It is the claim to be 'proactively partnering' with mana whenua that the political scientist Dominic O'Sullivan has drawn attention to in critiquing Otago's vision statement. Universities, he writes, should not be adopting the role of Treaty partner as if they are delegated Crown representatives. Doing so turns academics into something more like public servants. It does not do enough to recognise their role as critic and conscience of society. Universities are independent institutions, emphasises O'Sullivan, places where ideas need to be tested and debated by academics who are not constrained by the codes of conduct imposed on public servants. 14 I am not privy to the discussions among senior leaders of universities about why they have decided to engage in Tiriti-led partnerships. However, it is clear from publicly available documents that partnership is centrally important. Variations on the term 'partner' and 'partnership' are used at least twenty-four times in Otago's interim statement. The keyword is primarily used in reference to a partnership with mana whenua, but also to refer to other 'partnering' activities. For instance, the university aims to partner with 'communities in Te Waipounamu [the South Island] and Aotearoa New Zealand, the Pacific, and beyond to undertake research, teaching, and service that supports their needs'. Further underlining the idea that such actions are, in fact, core values, the statement explains that 'community and partnership' is something that the university 'foster[s]'. This includes partnerships with industry and other local body authorities and so on. 'Partnership' is now something that the university seems to be extensively involved in with a variety of communities and entities, in order to meet those communities' needs as well as reap some benefits. 15 But what does 'partnership' mean and what does it entail? The vagaries in these statements make it hard to work out what exactly is being envisaged. The scale at which partnerships is imagined matters. A bounded, specific project undertaken by an academic research team or class in partnership with a particular indigenous entity in order to, for instance, co-design a museum exhibition is a very different proposition to that of enacting an ongoing partnership between two major institutions. In that case, we might ask whether two very different partners do in fact share the same values and means of enacting them. One partner is an educational and knowledge-producing institution with a long European and colonial history, publicly funded to be of service to New Zealand society, and both legislatively required and conventionally understood to guarantee academic freedom. As the often-cited 'Statement of Principles on Academic Freedom and Tenure' by the American Association of University Professors asserts, 'Institutions of higher education are conducted for the common good and not to further the interest of either the individual teacher or the institution as a whole.' Further, '[t]he common good depends upon the free search for truth and its free exposition'. 16 The other partner is a community defined by ancient lines of whakapapa seeking to uphold its mana, or authority, in the wake of dispossession and more recently following extensive monetary and cultural settlements with the Crown. Why would or should this institution be expected to be of service to wider society and uphold the common good? Do these different partners operate with equality and even capacity? Does one partner now have advisory or even veto power over the decisions of the other? Does this work both waysand should it? A more recent plan from the University of Otago that outlines goals to 2030 only underlines that the partnership with iwi will require 'shifts in the way we teach, learn, research, engage and work as we bring together te ao Māori [the Māori world] and the traditional university world in a way that both honours the ideals of our Scottish heritage and upholds tino rangatiratanga'. 17 As I have already pointed out, rangatiratanga might be interpreted variously as the authority and dignity of the tribe through to an acknowledgement of the tribe's political sovereignty. The significance of partnership as a core practice and value of the university thus raises a number of questions about the institution's autonomy and what we mean by this concept. Is the value of such partnership primarily to be found in enacting the obligations of the university to societya claim 15 University of Otago, 'Vision 2040'. 16 American Association of University Professors, 'Statement of Principles on Academic Freedom and Tenure', AAUP, https://www.aaup.org/report/1940-statement-principles-academic-freedomand-tenure. 17 University of Otago, 'Pae Tata: Strategic Plan to 2030', 12. that would imply some sturdiness and confidence on the part of the university but may place obligations on iwi that they may not wish to uphold? The proposition speaks to a wider set of debates in a variety of democratic societies where greater participation, particularly from under-represented groups, is being sought and nurtured in institutional and public settings in order to renew democracy. These debates are important and urgent but surely still leave many questions of justice in unequal societies unanswered. 18 It is also possible that the frequent reference to partnership and partnering speaks to institutional vulnerability and even perhaps to an erosion of autonomy, on the part of the university at least. This seems particularly pertinent given the funding deficit and financial crisis in many universities in New Zealand, which are 'chronic[ally] underfunded'. 19 Several institutions are currently initiating widespread staff redundancies because they are in deficit. 20 Taking this context seriously is important for understanding the purpose of and critiquing the unintended consequences of the university's Treaty-led policy, for it is in an ongoing period of fiscal decline that partnership with a number of entities has come to seem valuable. Furthermore, this context forces questions about the material conditions necessary for realising academic freedom, as ongoing staffing and subject cuts mean that many departments are unable to offer the kinds of classes and courses and undertake the breadth of research that enacting such freedom would ideally entail. That said, O'Sullivan is right to point out that the idea of a university engaging in a partnership as part of its aspiration to become 'Tiriti-led' is different in kind and poses particular challenges to notions of autonomy and freedom in the academic context. There is value in thinking seriously about and questioning this policy shift for a number of reasons, including whether it will achieve the kinds of social change that it aspires to do, and whether it meets larger goals universities might pursue, such as a renewal of democratic life and the valuing and protection of scholarly work in contributing to such a renewal. --- Treaty partnership and the state But where does this idea of Treaty partnership come from? Partnership between the Crown and Māori came to be regarded as a key 'principle' in interpreting the Treaty in the mid-1980s. It arose in part from a claim that the 18 See for example Danielle Allen, Justice by Means of Democracy . 19 Brian S. Roper, 'Protect Otago -Save Our University!', ISO Aotearoa, 8 May 2023, https://iso. org.nz/2023/05/08/protect-otago-save-our-university/ See also Roper, 'Neoliberalism's War on New Zealand's Universities', New Zealand Sociology, 33 , 9-39. 20 On 27 June 2023, the New Zealand government announced top-up funding for universities but it is unlikely to be enough to stop redundanciesvoluntary and possibly forcedfrom going ahead. See 'Big Job Losses at Victoria and Otago Universities to Go Ahead Despite More Government Funding', Stuff, 28 June 2023, https://www.stuff.co.nz/national/education/ 300915606/big-job-losses-at-victoria-and-otago-universities-to-go-ahead-despite-more-governmentfunding. Treaty promised an ongoing relationship between Māori and the Crown, given public voice by key Māori leaders. This argument contrasted with the alternative contemporary claim mentioned earlier that the 'Treaty is a fraud'. But in significant ways, the idea of a Treaty relationship built on the efforts of generations of iwi leaders, while also reshaping interpretations of those earlier claims. Since the late nineteenth century, leaders had brought claims about dispossession to governments of the day. Some of those had been inquired into in the past, and some payments had even been made, but these were minimal and had not been accompanied by a broader shift in public understanding of colonial dispossession and its effects. In the late twentieth century, a new generation of Māori leaders aimed to achieve a broader transformation in the understanding of political authority, and even sovereignty, as shared, not unitary. 21 The Treaty of Waitangi Tribunal, a specially designed permanent commission of inquiry tasked with investigating Māori claims of breach of the Treaty, became a central institution in this transformation. While the Treaty of Waitangi Act that established the tribunal is often referred to today as the moment when the Treaty began to be given real statutory meaning, the political philosopher Andrew Sharp viewed the tribunal as a way of 'avoiding rather than confronting the continued Māori demand that the Treaty should be "ratified" … It was instituted too, as a means of negotiating, perhaps even evading, Māori claims that many statutes … were in breach of the Treaty.' 22 What made the Tribunal into a much more significant institution was, as Sharp put it, the 'continuing and growing Māori demand for justice' and the role of some key leaders. 23 This pressure resulted in a significant amendment in 1985 which allowed for inquiries into breaches of the Treaty going back to 1840. The amendment opened the floodgates to hundreds of claimsmore than the Cabinet of the day had contemplated. 24 As well as investigating breaches of the Treaty, the Waitangi Tribunal was tasked with defining key principles of the Treaty. Presided over by justices of the Māori Land Courtled at the time by the chief judge Edward Taihakurei Durieas well as eminent scholars, business leaders and others, the tribunal began to undertake this work in the early 1980s, defining several principles, key among which are partnership and protection. 'Partnership' refers to how the Crown should enact major policy as well as legislative and even constitutional change in the various branches of the state in consultation with Māori and in order to uphold its own honor. 'Protection' refers to how the Crown must protect Māori interests, and has primarily been invoked in reference to property. Both these principles have been used by the tribunal to evaluate the actions of the settler state in the past as well as in the present 21 Richard Hill, Maori and the State: Crown-Maori Relations in New Zealand/Aotearoa, 1950-2000 . 22 Andrew Sharp, Justice and the Māori: Māori Claims in New Zealand Political Argument in the 1980s , 74. 23 Ibid. See also Miranda Johnson, The Land Is Our History: Indigeneity, Law and the Settler State . 24 Alan Ward, An Unsettled History: Treaty Claims in New Zealand Today . in order to recommend forms of redress. 25 Although envisaged as being complementary, the two principles might also conflict with one another. Partnership acknowledges Māori political autonomy, whereas protection acknowledges inequality, even subordination, in the relationship of Māori to the Crown, particularly given the history of land dispossession. A third principle of 'participation' concerns 'empowering Māori communities to achieve their aspirations'. 26 The principle of partnership was further entrenched in New Zealand Maori Council v Attorney-General , colloquially known as the 'lands case'. In their decision, which upheld the appeal, the justices of the Court of Appeal stated that the 'Treaty signified a partnership between races'. The case concerned key aspects of the State-Owned Enterprises Act , particularly the matter of whether land and other assets that might become the subject of future Waitangi Tribunal inquiries would be transferred to the newly established state enterprises, whence they could be sold into private hands and therefore would no longer be available to be returned to iwi as part of a Treaty settlement process. In entrenching the principle of partnership, the Court of Appeal referred to the Māori version and understanding of the Treaty, and its 'spirit' of intent, as made in 'utmost good faith'. 27 In making these interpretations, the court observed the influence of broader social changes. Whereas just twenty years earlier, ministers of the Crown argued to remove legislative recognition of distinctive Maori land title, by the mid-1980s, the court argued, 'the emphasis is much more on the need to preserve Maoritanga, Maori land and communal life, a distinctive Maori identity'. 28 The court admitted a diversity of opinions among Māori and cited a 1980 Royal Commission into Māori lands that had emphasised the contextual and contingent interpretations of key concepts. Nonetheless, underlined the Court of Appeal in 1987, 'it is equally clear that the Government, as in effect one of the Treaty partners, cannot fail to give weight to the "philosophies and urgings" currently and, it seems, increasingly prevailing'. 29 Still, at the time of the 'lands case', only a few acts of Parliament made reference to the Treaty of Waitangi and its principles. 30 Notably, for our purposes, the transformative Education Act of 1989, which established a new vision of primary and secondary education and outlined the role, function and responsibilities of tertiary education institutions, did not reference the Treaty in relation to tertiary education responsibilities. 31 In the next three decades, however, reference to the principles of the Treaty and to the principle of partnership became ubiquitous in new and amended legislation, and across the public service more generally. What had been defined as a relationship between Māori and the Crown, or the executive government, became something to be recognised and upheld by various branches of the state, its bureaucrats and increasingly other actors in civil society too. Yet Treaty principles were not everywhere and universally supported. In a paper prepared for a hui in 1991, lawyer and activist Moana Jackson offered a contrary perspective. The Tino Rangatiratanga Hui was set to discuss a possible claim to the Waitangi Tribunal on education. But, insisted Jackson, the terms of the Treaty of Waitangi act 'have placed Treaty issues firmly within a context of Pakeha law and Crown control. The effect of this process has been to redefine the textual guarantees of the Treaty into a set of "principles" which actually diminish the rights of Maori and facilitate increased control over Maori.' 32 Other academics helped to extend the applicability of the version of the Treaty that emphasises the Māori text and the importance of Treaty principles in education. In an address to the Vice-Chancellor's Forum in Kuala Lumpur in 2009, the psychiatrist Mason Durie emphasised sustained progress in the incorporation of 'indigeneity ' into education alongside increasing participation in and some influence over mainstream university education by Māori. Durie, the brother of Eddie Durie, the former chairperson of the Waitangi Tribunal, emphasised the importance of the Treaty in his analysis of the 'context for change'. By the late 1980s, he argued, the 'Crown's Treaty obligations were seen to apply to all sectors and to extend to agencies funded by the Government such as public schools and universities'. 33 However, the Treaty was not given statutory expression in regulating education until 2020. In the Education and Training Act , and the accompanying Tertiary Education Commission strategy, we can see how the flowering of an idea that universities could and perhaps should be engaging in their own partnerships with mana whenua has come aboutalthough the force impelling such innovations is in fact not clearly spelled out in the policy documents. As O'Sullivan rightly points out, this act affirms academic freedom and institutional autonomy. Section 267 further affirms 'the freedom of academic staff and students, within the law, to question and test received wisdom, to put forward new ideas, and to state controversial or unpopular opinions'. However, the act also includes a new section 9, 'Te Tiriti o Waitangi'. This section states that the education system 'honours Te Tiriti o Waitangi and supports Māori- 31 The only related reference in that statute is where it lays out the responsibility of the minister to provide a tertiary education strategy that addresses 'the development aspirations of Maori and other population groups'. Education Act 1989, s. 159 AA 'Tertiary Education Strategy'. 32 Moana Jackson, 'Maori Education Perspectives on a Claim to the Waitangi Tribunal: A Paper Prepared for Tino Rangatiratanga Hui 1991 on Behalf of Nga Kaiwhakamarama I nga Ture/ Wellington Maori Legal Service Inc', Wellington, 1991 . 33 Mason Durie, 'Towards Social Cohesion: The Indigenisation of Higher Education in New Zealand', paper for the 'How Far Are Universities Changing and Shaping Our World?' conference, Vice-Chancellors' Forum in Kuala Lumpur, 2009, 12. Crown Relationships'. It further asserts that the minister of education and the minister for Māori-Crown relations: Te Arawhiti may, for the purpose of providing equitable outcomes for all students, and after consulting with Māori, jointly issue and publish a statement that specifies what the Ministry, TEC, NZQA [New Zealand Qualifications Authority], the Education Review Office, and Education New Zealand must do to give effect to public service objectives that relate to Te Tiriti o Waitangi. 34 The verbs 'honour' and 'support' and the proposition that different ministries 'may' give effect to te Tiriti, are all somewhat vague, and they are not used to explicitly redefine the clauses guaranteeing academic freedom. Turning to the 'Statement of National Education and Learning Priorities and Tertiary Education Strategy ' of 2020, we find the language of honouring Te Tiriti o Waitangi is prominent. Tertiary education providers are required to 'ensure that strategies, behaviours, actions, services and resourcing reflect a commitment to Te Tiriti o Waitangi'. 35 While the act and policy document do not expressly state that universities must engage in Treaty partnerships, it is possible to see how honouring Te Tiriti and supporting Māori-Crown relationships might be interpreted in this way. This may explain why, at some universities, students are required to demonstrate allegiance. Admission to the Bachelor of Teaching at the University of Otago requires demonstration of a 'commitment to Te Tiriti o Waitangi'. 36 Yet in contrast to the vaguer language used in relation to universities, Te Pūkenga, the centralised organisation of what were formerly independent polytechnics, is statutorily required to engage in 'meaningful partnerships with Māori employers and communities and to reflect Māori-Crown partnerships to ensure that its governance, management, and operations give effect to Te Tiriti o Waitangi'. 37 The language in this section is much stronger. There was little comment in parliament, or in the media, on section 9 when the new 'Education and Training' bill was being debated in the House. Discussion focused primarily on the centralisation of the polytechnics. The minor attention paid to the introduction of a Treaty clause speaks perhaps to the ubiquity of such clauses in recent legislation and government policy-making. What was notably absent in 1987 was run-of-the-mill by 2020. But, recalling O'Sullivan's criticisms, we might still want to question the idea that a university should be upholding 'Māori-Crown relationships' and what this might mean in practice. 34 Education and Training Act 2020, s. 9 . Emphases added. 35 'Statement of National Education and Learning Priorities and Tertiary Education Strategy ', 2020, https://www.education.govt.nz/our-work/overall-strategies-and-policies/ the-statement-of-national-education-and-learning-priorities-nelp-and-the-tertiary-education-strategy-tes. Emphasis added. 36 See for example Regulations for the Degree of Bachelor of Teaching , 'Learning and Teaching Aka Ōtakou', University of Otago Te Whare Wānanga o Otāgo, https://www.otago.ac. nz/courses/qualifications/btchg.html#regulations. 37 Education and Training Act 2020, s. 9 . Emphases added. Further, we could debate whether such a notion contravenes institutional autonomy and the provisions guaranteeing academic freedom. We might recall again, as the 1987 Court of Appeal did even if in passing, that the Treaty has been a contested idea and that interpretations of it are shaped by present-day goals, values and aspirations. Is it the role of a university and those it employs to uphold the 'prevailing' or governing hegemony, or rather to question it? --- Myth-histories of the nation The political commitments outlined above have shaped and are in turn shaped by a powerful myth-history of the nation's past. In part, this finds past precedents for Treaty partnership in order to embed aspirations for present-day power-sharing as a feature of New Zealand identity, rather than as a novel or recently invented phenomenon. As Attwood puts it, the Treaty thus comes to serve as a 'foundational' or, in Nietzschean terms, a 'monumental' history. This is one that is useful for law and legal scholars, who now refer to the Treaty as a source of law. 38 We can see this foundational aspect permeating the University of Otago's 'Vision 2040' statement. When we read that the Treaty is 'the foundation document of our nation' ; that the university is 'living up to the expectations of Te Tiriti' ; and that doing so permits of a 'kind of relationship [te Tiriti] originally envisaged' , we are being asked to believe in a story of timeless consensusa story of legal foundationalism. But the Treaty, its meaning and intentions, and what came next, are an ongoing matter of debate and dispute by historians. As well as Attwood, these include Tony Ballantyne, James Belich, Michael Belgrave, Lyndsay Head, Mark Hickford, Damen Ward and others. Their work on the nineteenth century puts the Treaty in its historical place and examines its disputed meanings and uses. For instance, as Ballantyne observes in his contribution to the New Oxford History of New Zealand , while there is 'no doubt that the signing of the Treaty was a crucial watershed … to structure our understandings of nineteenth-century politics around the Treaty would present a thin and, in many ways, anachronistic reading of the young colony's political landscape'. 39 However, at the same time that a sophisticated and critical historiography about the Treaty has developed, the mythic consciousness that finds in the Treaty a foundation for partnershipamong other principleshas blossomed. Crafted in activist networks, represented in compelling visual media and even repeated in some academic scholarship, a myth-history presents political aspirations for Treaty partnership and imagines a bicultural citizenry as something that should have been nourished in the past. Some historians including 38 Attwood, 'A Bloody Difficult Subject', 113. See also Bain Attwood, Empire and the Making of Native Title: Sovereignty, Property and Indigenous People . 39 Tony Ballantyne, 'The State, Politics and Power, 1769-1893', in The New Oxford History of New Zealand, ed. Giselle Byrnes , 100. Claudia Orange and recently the lawyer Ned Fletcher have contributed to this mythic history. Moana Jackson, earlier a critic of what the Treaty offered Māori politically, more recently argued that stories of the 'hopes that iwi and hapū placed' in the Treaty present an opportunity for the development of a 'different and unique decolonisation discourse' premised in an 'ethic of restoration'. 40 It is also represented on government websites, in Treaty workshops and training manuals, and schools. It is almost as if this past becomes more real the more strongly aspirations for the present are yearned for. In other words, this myth-history is not simply a vernacular. It is embedded in policy and political institutions. Further, it is a creature of the institution that was created to investigate claims of breachprimarily the histories of dispossessionin the first place, that is, the Waitangi Tribunal. The historian W. H. Oliver identified aspects of what he called a particular kind of counterfactual history-writing at work in the tribunal, and about which he had become worried. He had conducted research for Māori claimants in the 1990s and been involved in other aspects of the tribunal's work. In a provocative essay published in 2001, he charged the tribunal with imposing a 'retrospective utopia' on historical events. It had created an implausible but highly attractive 'alternative past' in which European settlement in New Zealand is depicted as dependent upon Maori consent and should and could have led to a regime characterised by partnership, power-sharing and economic well-being for Maori as well as Pakeha. In that scenario, colonists become tangata Tiriti, the people of the Treaty, and their presence in the country is conditional upon the invitation extended by the tangata whenua, the people of the land, an invitation made by Maori to further their own purposes. This is the 'future' that was promised in 1840 and, because the promise was subsequently broken, it is the 'past' New Zealand did not have. But it remains the 'future' to which the country may still aspire. 41 Oliver's critique resonates with the charge of 'presentism'. This is one commonly made by historians, levelled at historical narratives that reflect an author's own concerns more than those of past peoples. In the case of the tribunal, Oliver contended that the history being written was determined more by the application of present-day judicial principles to the past than by trying to understand the past in its own terms or by its own norms. The actual reports the tribunal produces in making its recommendations on inquirieshundreds if not thousands of pages long and that include dense empirical detail on dispossession and other grievancesare not themselves widely read by New Zealanders. Nonetheless the tribunal has played a significant role in public life, as we have seen. Thus, the particular 'presentism' in tribunal historiography that Oliver diagnosed was potentially quite influential as well as being quite distinctive. In his account, the tribunal was not, for instance, exactly engaged in Whig historytelling a story of past contentions in order to ratify a present-day political consensus, as the English historian Herbert Butterfield put it. 42 This was history shaped for and by an aspiration to a better relationship between Māori and the Crown. It was not a fait accompli, although it is often represented as such. In the midst of turbulent Treaty politics at the turn of the millennium, Oliver suggested that the tribunal was not so much ratifying the present, as producing an alternative past in order to imagine a past future that could have been and that still could be. By generating this 'retrospective utopia', tribunal historiography projected a political vision of partnership not only backward but also forward in time, he claimed. As a historian, Oliver had qualms about this project, though he appreciated its political and moral value in the present-day context. He was concerned that by creating a history framed in terms of what the Crown ought to have done , the 'alternative past' that the tribunal imaginedthe past in which state actions would have been consonant with the principles of the Treaty of Waitangidistorted the actual past. Principles defined in contemporary terms were applied to past events 'irrespective of the values and norms of the period in which they were performed'. Even more problematic, he suggested, was the 'millennialist' shape given to the historical account produced when purportedly timeless principles were applied to other times. 43 What happens, Oliver's argument might lead us to ask, when a millennialist account, one that fosters a laudable feeling of revival among a colonised people, is authored by the state? One thing that might happen is that the colonised now recognised as a people who should and could have been accorded equal status and rights if the Treaty principles had been properly observedbecome responsible for their own colonisation. Indeed, in one of its reports, Oliver observed, the tribunal muses on what 'consensual annexation' might have looked like. 44 Oliver would have preferred a critical historical account of what the state did, not a fanciful one of what it ought to have done. The tribunal, he argued, presented an alternative past as something to which New Zealanders could still aspire; it was not lost or forgotten but could be retrieved and activated. His critique sparked critical responses in turn from other historians who themselves worked as researchers in tribunal processes. 45 Yet they did not engage specifically with what I think Oliver put his finger on: a broader political sensibility that engendered in so many people the desire to participate in finding a better history for a newly bicultural nation. 42 Herbert Butterfield, The Whig Interpretation of History . 43 Oliver, 'The Future behind Us', 12. 44 Ibid. 45 For a discussion, see Miranda Johnson, 'Biculturalism and Historiography in the Era of Neoliberalism: A View from Aotearoa New Zealand', Ethnohistory, 70 , 167-85. We have seen such aspirational politics in the remaking of New Zealand's past implicit in the various public policy documents and strategies discussed earlier. Thus, the critique that Oliver levelled at the tribunal's work might be expanded to thinking about how a story of the Treaty was made and disseminated. This was one that privileged political optimism over self-critique, the mythification of foundational texts ahead of grappling with complex historical contexts, a preference for consensus over ongoing reckoning with dissensus, and increasingly in various institutions beyond those of the Crown an assumption of partnership. The stakes are high. This narrowed-but-longed-for version of the Treaty, now adopted in university policy, stands in for a view of the past that minimises what actually happened, which cannot be contained in any one text or interpretation. Such a view of the past fails to explore how we might create new spaces for interpreting the varied and disputed meanings and legacies of colonial history today. Notably, when the University of Otago's 'Vision 2040' statement alludes to 'moving beyond' our 'colonial heritage' in the making of a Tiriti-led future, I am left wondering how it might be possible for us to continue to critically examine and analyse colonialism in a larger sense. No historian believes that history is something we 'move beyond' since we dedicate our working lives to trying to understand what has gone before. As we often tell our students, this is no antiquarian interest, but necessary if we are to better understand where we find ourselves in the present, although this is not a straightforward exercise. I deem such inquiry to be vitally important. The process of settler colonisation and accompanying ideologies of colonialism radically transformed Māori community life and selfhood. Even the term of collective identity, 'Māori', is a colonial construction. 46 Like other indigenous peoples in similar contexts, Māori experienced dispossession, cultural and linguistic loss, as well as political and economic marginalisation. Colonial processes and ideologies entailed changes in the conceptions of self and community of the settler colonisers, too, as they laid claim to what they perceived as a 'new world', one of their making. The making of a new world entangled indigenous people and newcomers in a variety of relationshipsintimate, social, economic, politicalin ways that do not neatly fit the binary categories of 'Crown' and 'Māori'. In philosopher Jonathan Lear's account, a breakdown in a way of life wrought by settler colonialism presents one of the most challenging predicaments that human societies can face. Haunted by the phrase attributed to the Crow leader Plenty Coups, Lear's contemplation on how to understand such a predicament offers us something more meaningful than 'moving beyond' colonialism. In the late nineteenth century, Plenty Coups's people were forced onto the reservation, and he is supposed to have said that 'after that nothing happened'. As Lear writes, the problem as the philosopher comes to understand it in ontological terms is not 'who has the power to tell the storyhowever important that might be; it is rather how power shapes what any true story could possibly be'. In the face of cultural devastation, one framing idea of selfhood dies and with it even the possibility of a true story as previously intelligible. But this does not mean all hope is lost. The past can still inform the present. For what might happen is that a new Crow poet might be born who can 'take up the Crow past and … project it into vibrant new ways for the Crow to live and to be'. 47 When documents such as the University of Otago vision statement say, rather tritely, that the university will 'move beyond' a colonial heritage, what is missed is the radical destruction that colonialism has wrought. More significantly, such assertions fail to appreciate the possibility of radical hope that might arise in the wake of such destruction. The vision attendant on 'moving beyond' a past that is perceived to be holding New Zealanders back, or is embarrassing or shameful, avoids an ongoing confrontation with the ways these complex, messy and murky histories continue to ensnare communities, the ways they make everyone morally complicit, driving many to contest as well as try to understand what has come before. Such efforts, when undertaken by historians, may not lead directly to where a country finds itself today. --- Power and the simplification of the past In New Zealand, efforts to decolonise research practices are over twenty years old. Linda Tuhiwai Smith's touchstone book, Decolonizing Methodologies: Research and Indigenous Peoples, first published in 1999, set a new agenda for academic research conduct, brought into question what counted as academic knowledge and sought to revalue indigenous knowledge. Smith argued that in a settler colonial context like New Zealand, where academic research has been closely associated with the extraction of knowledge from Māori communities, research practice should be reshaped to ensure that any benefits flowed to and not away from them. Since Smith published her book, support for Māori-led research has become a stated core objective of funding bodies and university processes. A wider objective of decolonising or, more specifically, 'indigenising' the university has enlisted many academics in a progressive cause. 48 This is one that intends to make New Zealand institutions more diverse in terms of staff and students. Universities also aim to foster the recuperation of indigenous knowledge, language and customary principles. Yet in practice, pursuing such objectives has raised profound questions about the conventions of evidentiary-based methods in many disciplines and about the freedom of academics to choose topics and how they research them. Decolonising requires considerable changes to research methods, processes of grant-making, and hiring practices as well as changes to curricula and pedagogy. In response to those advocating decolonisation of the university in other places, critics have voiced concerns about the reshaping of research protocols and disciplinary norms and expectations to meet, as some claim, the spirit of the times. They question whether 'decolonising' in fact threatens established notions of academic freedom, as well as the quality of scholarship and teaching, by enforcing new orthodoxies that due to their progressive objectives become difficult to challenge. 49 This problem is manifesting in institutional processes in New Zealand. In some instances, universities are requiring academic staff to present their research plans to a centralised committee for approval based on objectives associated with being Tiriti-led, before research can be funded, undertaken and published. As the Treaty becomes the framework for decolonising, it is not hard to imagine work critical of the story being told about it being externally obstructed. Recently, some scholars raised questions about the centring of mātauranga Māori in science curricula, which sparked acrimony and formal complaints within the Royal Society of New Zealand. 50 Public funding bodies and internal university research grants require academics to produce statements about how their work does or does not contribute to Māori knowledge and communitiesirrespective of topic. As I have discussed elsewhere, these demands may dampen critique and even stymie the development of particular research topics as academics censor themselves. 51 These requirements place scholars in difficult predicaments. Many of the goals associated with te Tiriti in its current interpretation are ones that I share, including the advancement and development of the capabilities of Māori students and staff, the growth and enhancement of Māori language and knowledge, and so on. Yet current university policy makes it hard for me to engage in the sort of critique that I think is valuable without appearing to be opposing these goals, since they are framed by the idea of a Tiriti-led university and the commitment to partnership. Even to question such goals is seen to be acting in bad faithchurlish at best, racist at worst. However, not to question issues of such fundamental importance also seems like bad faith. To be required to uphold an orthodoxy, when there is no room made for contestability or an awareness of the many historical lives of the Treaty as an idea, feels oppressive to me and also dangerous. Many of the specific terms by which the decolonising of universities is being undertaken, such as becoming Tiriti-led, in fact reflect policies instigated by the New Zealand government and across the public bureaucracy. 'Decolonising' can look very similar to other increasingly hegemonic forms of governance. We do not and cannot know whether this current notion is the 'best' version of the Treaty, one that really will help us to achieve all those social and educational goals. We must probe the limits of ideas, values and principles by analysing them from different experiential perspectives and by examining evidence that may even bring the value of those ideas into question. Furthermore, the vision of decolonising the university often simplifies a complex social situation. We are invited to 'move beyond' the difficulties and not to dwell on the messy complexities of the past and their meanings for the present. Indeed, we are asked to cede our equally messy freedoms to do so, ones that are never established for all times but themselves always-in-negotiation with others. This kind of decolonising perhaps enables a certain kind of clean, unburdened freedom in a Nietzschean sense, in which we are not overwhelmed by a sense of a looming past and an unknown future. But I cannot help but feel that it gets us off the hook of making difficult decisions in the present. I believe that acting in good faith as a scholar involves upholding commitments to truth and honesty, even if we often fall short. For historians, this demands an attempt to understand and interpret the past while remaining aware of the interpretive stakes of present-day political and social values. We write our histories in the language of our contemporaries, and what we write is inevitably shaped by the debates and larger forces of our times. But this does not mean that we should write our histories exclusively in the moral terms of our contemporaries or intentionally for the purposes of supporting a particular argument or demand that we find most compelling among them. Beyond learning languages, how to navigate archives, reading widely and thinking reflectively about method and approach, the most important training a historian undertakes involves an ethical self-practice. That is, of learning how to conduct one's scholarly self in the acknowledgement of present demands without letting such demands overdetermine what is significant about research into the past. This in turn requires avoiding 'the respective positions of hegemonic appropriation and incommensurability', instead cultivating a 'sensitivity to difference and alterity', as philosopher Jerome Veith outlines. 52 Such a sensitivity is neither rigid nor craven. For historians it means exercising judgement wisely, not favouring a particular community we admire or to which we belong, nor distorting past realities in order to advance a cause in which, in our life as a coeval citizen, we may strongly believe. At the same time, practising this historical method is not about adopting a view from nowhere ; it is reflective on its own situatedness in historical time. This kind of sensitivity and self-reflection seems particularly important in our contemporary world when individuals and groups often seek legitimation through the narrow selection of particular precedents, to the exclusion of other ways of thinking, feeling and valuing. I would like to work in, and for, a university that respects and upholds, that enhances and protects, the ethical practice of this kind of scholarly good faith.

Can decolonising the university create possibilities for new stories to come into being, in the wake of the devastation wrought by colonisation? In Aotearoa New Zealand a particular instance of decolonising universities is under way. This is one that highlights how engagement with decolonising approaches may end up harming academic work. In New Zealand, public universities have involved themselves in negotiating a delicate compromise between activism and the demands of the state. This compromise brings into question the robustness of institutional autonomy and academic freedom. Conjoining the activist idea of decolonising with language that refers to a distinctive form of state governance foregrounding a political relationship between the Crown (executive government) and Māori, several universities have committed themselves to a 'Treaty partnership' with Māori. The idea is rooted in recent interpretations of the colonial Treaty of Waitangi/Te Tiriti o Waitangi, signed in 1840. The Treaty is and has been a contested text, event and idea. When universities invoke a particular idea of the Treaty as if it is a consensus view in order to advance social objectives, they risk thwarting the role and responsibility of academics, and particularly historians, to the common good as 'critic and conscience' of society.

Introduction Youth are among the high-risk population for substance use behaviors [1,2]. Substance use behavior among youth is a complex phenomenon and involves diverse influential factors including the socio-cultural environment [3,4], substance-using peers, and personal network characteristics [5][6][7]. Some youth initiate drug use because of friends and continue it to fit in with their social network and environment. Such initiation is of particular significance in that many adults have initiated substance use during their teen and young adult years [8,9]. With growing appreciation for the impact of peers, families, and communities on youth substance use, schools are also recognized as important social environments affecting student knowledge, attitudes, and behavior toward substance use [10]. One of the initial actions taken during the COVID-19 pandemic to lower mortality and avoid unsustainable acute care service utilization was the implementation of public health orders that frequently included partial or full in-person school closures, and sometimes encouraged families to minimize socialization and remain at home where possible [11]. In Ontario, the first school closure was announced on 12 March 2020, in effect from 14 March 2020, and continued with several gradual and staggered reopening and closures throughout the course of the following two years, as shown in Figure 1 [12]. Finally, Ontario schools reopened for in-person learning on 17 January 2022 [13]. The presence of youth at home during in-person school closures may have positive and negative implications for their mental health and propensity to use substances. While a lack of in-person contact with classmates and instructors is likely to produce elevated anxiety, boredom, and discontent in some young people, others may have welcomed less The presence of youth at home during in-person school closures may have positive and negative implications for their mental health and propensity to use substances. While a lack of in-person contact with classmates and instructors is likely to produce elevated anxiety, boredom, and discontent in some young people, others may have welcomed less stressful peer interaction and a temporary decline in bullying and other forms of unpleasant experiences associated with in-person learning [14]. Among youth, the adoption of unhealthy coping mechanisms, such as substance use, as a result of pandemic-related stress, are of particular concern, since they are less likely to consider the negative consequences of their action [15]. The increased risk of opioid use among youth could result from elevated accessibility of prescription opioids due to unsafe medication storage practices by family members at home [16][17][18], witnessing elevated parental nonmedical prescription opioid use [19], and increased alcohol and cannabis consumption among youth during the pandemic [20][21][22]. Such regularities and the prospects of requiring in-person school closures as part of future public health orders suggest the importance of understanding the impact of in-person school closures on substance use among young Canadians during and after the COVID-19 pandemic. There is a body of research applying social network analysis to secure insights into substance use behavior among youth [23][24][25]. Although social network analysis can offer enormous insights into the social context of and influence on the use of drugs, reducing an individual to a node in a network limits the integration of personal characteristics [26]. While incorporating such representation of network structures, an agent-based modeling approach can more deeply analyze individual affiliative structures in the context of evolving and actively interacting agents with varying characteristics [27,28]. To explore fundamental elements of substance use among youth, different agentbased models have been built [29][30][31][32][33][34][35][36]. These models highlight the use of the computational modeling method as a possible way to explore the complex concept of substance use amongst youth. One little-explored approach to study the possible association between social influence and substance use amongst youth is through opinion dynamics computational models. Opinion dynamics computational models can highlight mechanisms underlying the convergence of behaviors and theoretical implications for imitator behaviors. There is a substantial body of literature on opinion dynamics models, with model formulations having been contributed from domains as varied as social psychology, statistical physics, mathematics, and computer science. These varying angles of contributions have led to a vast and diverse body of research [37][38][39]. Despite the breadth of past applications of opinion dynamics models, there are few computational modelling studies that employ the opinion dynamics model to study addictive behaviors [40,41], and none of them devote particular attention towards how in-person school closures may af- There is a body of research applying social network analysis to secure insights into substance use behavior among youth [23][24][25]. Although social network analysis can offer enormous insights into the social context of and influence on the use of drugs, reducing an individual to a node in a network limits the integration of personal characteristics [26]. While incorporating such representation of network structures, an agent-based modeling approach can more deeply analyze individual affiliative structures in the context of evolving and actively interacting agents with varying characteristics [27,28]. To explore fundamental elements of substance use among youth, different agent-based models have been built [29][30][31][32][33][34][35][36]. These models highlight the use of the computational modeling method as a possible way to explore the complex concept of substance use amongst youth. One little-explored approach to study the possible association between social influence and substance use amongst youth is through opinion dynamics computational models. Opinion dynamics computational models can highlight mechanisms underlying the convergence of behaviors and theoretical implications for imitator behaviors. There is a substantial body of literature on opinion dynamics models, with model formulations having been contributed from domains as varied as social psychology, statistical physics, mathematics, and computer science. These varying angles of contributions have led to a vast and diverse body of research [37][38][39]. Despite the breadth of past applications of opinion dynamics models, there are few computational modelling studies that employ the opinion dynamics model to study addictive behaviors [40,41], and none of them devote particular attention towards how in-person school closures may affect youth nonmedical prescription opioid use. Broadly, opinion formation models can be categorized into discrete and continuous models. Discrete models permit an agent to hold one of a finite set of opinions, whereas continuous models allow for a real-valued opinion [38]. Below, we informally characterize eight prominent subgroups in the opinion dynamics models within the literature [37], recognizing that the taxonomy employed here is not a canonical one and that other forms of classification of opinion dynamics models can be seen within the literature [38]. One of the earliest dichotomous discrete opinion dynamics models to simulate how people's attitudes evolve over time is the voter model. Each individual inside an arbitrary network is selected randomly and adopts the state of a randomly chosen neighbor. Arrival at a consensus is the main feature of the voter model [42]. Many variants of the voter model have been examined, including a nonlinear formulation [43], alternative starting network configurations [44], the impacts of "zealots" carrying invariant beliefs [45], and those reflecting various co-evolutionary principles [46]. A second discrete model of opinion dynamics -the majority rule model-considers a set of agents who have discrete opinions and selects alternatives that enjoy majority support [47,48]. Third, the Sznajd model provides a discrete model of opinion dynamics and implements a rule in which a pair of neighbors is randomly chosen to change their nearest neighbor's opinion; if that pair of close neighbors agree, their nearest neighbors will eventually agree. By contrast, if the pair disagree, the opinion of the nearest neighbors remains unchanged, with no common opinion developing among their nearest neighbors [49][50][51]. Fourth, the bounded confidence model was developed by Deffaunt et al. and consists of a stochastic model for the evolution of continuous-valued opinions within a finite group of peers [52]. Fifth, the relative agreement model is a variant of the bounded confidence model that uses individual uncertainty as the criterion for deciding whether two agents can interact; uncertainty, as well as opinion, can be modified by interactions within this model [53]. Sixth, the continuous opinions and discrete actions model describes a situation in which agents hold real-valued opinions yet may only express themselves in discrete terms [54]. Seventh, the social judgmentbased opinion model shares certain features with the continuous opinions and discrete actions model with two alternative structures: one in which agents can express their opinion as a real number and another in which they are restricted to one of a set of discrete possibilities [55,56]. A final class of opinion dynamics models are those employing the social impact theory model, which offers a discrete model of opinion dynamics based on social impact theory in psychology [57]. Social impact theory associates each agent with three variables-a level of persuasiveness, a level of supportiveness, and a binary opinion. The model further presents a set of formulae to characterize the total impact on each agent based on the number, strength, and immediacy of its neighbors [58]. This work employs this final class of opinion dynamics models as an established theory of clear relevance to study the impact on youth drug use of direct peer influences at school and indirect perceived norms from the socio-cultural environment. The COVID-19 pandemic has had a profound impact on the lives of people around the world, including youth. In particular, the closure of in-person schools has raised questions about the potential impact on nonmedical prescription opioid use among youth. The current study centers on the question of how in-person school closures during and after the COVID-19 pandemic affect nonmedical prescription opioid use among youth, and what measures can be taken to alleviate any potential risks or improve the situation. The findings of this research can be utilized to develop policies and interventions aimed at decreasing the risk of nonmedical prescription opioid use among youth during and after in-person school closures. This study is one of the first to investigate the impact of in-person school closures on nonmedical prescription opioid use among youth during and after the COVID-19 pandemic in Canada. To support this investigation, this work employed an agent-based model formulated based on the social impact model of opinion formation [59,60], and was calibrated to reflect data from the Ontario Student Drug Use and Health Survey [61,62]. The remainder of this paper is organized as follows: Section 2 describes the model, including the agent-based formulation and the social impact theory implementation, cellular automata spatial structure, and the experimental design. Section 3 elucidates the results. Section 4 includes the corresponding discussion and concludes the paper. --- Materials and Methods Within this work, the influences of peers, families, and socio-cultural environment on nonmedical prescription opioid use among youth are investigated using an agent-based model operating within a spatial grid-based network structure in accordance with cellular automata principles. The data on the prevalence of nonmedical prescription opioid use among youth, as well as the frequency and sources of use reported in the Ontario Student Drug Use and Health Survey [61,62], were used to parameterize and calibrate the ABM. The selection of the most appropriate agent-based modeling toolkit for this project was based on a variety of factors, including the programming experience and abilities of the individuals involved, the activity of the toolkit's community and the availability of specialized resources, the scalability and adaptability of the platform, and the built-in visualization options. Two separate reports [63,64] evaluated various agent-based modeling toolkits against different criteria and offered recommendations based on specific needs. For this study, the model was created using simulation software AnyLogic Version 8.8.1 [65] and the model was run for a time horizon from 2017 to 2025. The design of the agent-based model drew on the social impact model of opinion formation [59,60]. The agent-based model was created, parameterized, calibrated, and used to investigate the prevalence of nonmedical prescription opioid use among youth, their prescription opioids resources, and the frequency of nonmedical prescription opioid use within the past year when varying peer influence, youth exposure to prescription opioids at home, and the influence of the socio-cultural environment. To support this investigation, the peer network context, families, and the socio-cultural environment shaping nonmedical prescription opioid use in youth were captured within a three-level CA context , where each youth's nonmedical prescription opioid use evolved according to the social impact theory of opinion formation. --- Agent-Based Modeling The use of agent-based modeling in this study supports the analysis of changes in the prevalence of nonmedical prescription opioid use among youth and the characterization of the effects of their peers, families, and socio-cultural environment. Hence, the model features three type of agents: youth, family, and socio-cultural environment. Youth behavior is governed by three different state charts depicted in Figure 2. These state charts collectively characterize the possible state-space for a single youth and the events that lead to transitions from one state to another. The logic for transitions between states within the Youth Drug Use Opinion Evidence state chart was informed by social impact theory. At the topmost level, the Youth Drug Use state chart characterizes whether the individual currently uses nonmedical prescription opioids. Youth who are not currently using nonmedical prescription opioids are divided into two groups: youth who have never used nonmedical prescription opioids and youth who previously used but have since quit by electing not to use nonmedical prescription opioids when the opportunity arose. Youth who currently use nonmedical prescription opioids are also divided into two groups: youth who are within their initial period of nonmedical prescription opioids use and youth who relapsed after previously quitting. The Frequency of Drug Use in the past year state chart represents the number of times that youth used nonmedical prescription opioids during the past year, and it is updated as time passes and as youth use nonmedical prescription opioids. The Drug Sources state chart depicts two important sources for the most recent prescription opioids use for youth: family and friends. Youth are considered to have a possible opportunity to obtain opioids from family when their family includes at least one person with an opioid prescription. In the absence of a family source, youth can seek available prescription opioids amongst their close friends ; based on a probability, youth can obtain prescription opioids from friends who are themselves nonmedical prescription opioid users. The unspecified state reflects other sources of opioids. Each youth is associated with a family, as represented by a family agent. Each such family agent has a family size parameter, which is drawn from a Poisson distribution to represent the empirical data that the average family size in Canada was 2.9 in 2019 [66]. The probability of filling an opioid prescription per week for each family member previously without an opioid prescription and the per week probability of ending opioid prescription treatment for each family member with prescription opioids are calibrated to represent the 12.7% of Canadians who reported having used opioids pain relief medications in 2018 [67]. If a member of any family has been prescribed an opioid, a child in the family might be exposed to prescription opioids, with the level of exposure differing between families. The child exposure to opioids parameter is calibrated to represent the 49.3% of Ontario youth who reported using nonmedical prescription opioids, obtaining them from a parent, sibling, or someone else with whom they live [61,62]. The logic for transitions between states within the Youth Drug Use Opinion Evidence state chart was informed by social impact theory. At the topmost level, the Youth Drug Use state chart characterizes whether the individual currently uses nonmedical prescription opioids. Youth who are not currently using nonmedical prescription opioids are di- The socio-cultural environment for contemporary youth is made up of neighborhoods, recreation areas, social events, and other forces that affect a youth's basic values, perceptions, and preferences. Within the model, a socio-cultural environment agent is implemented to reflect the idea that youth prescription opioid use is particularly high in some specific demographics [68]. Part of the socio-cultural environment within the model is therefore assumed to have some degree of bearing on the valence of a youth's attitude towards drug use. --- Cellular Automata for Spatially Localized Networks This model uses a three-level spatial grid-based network structure to capture the social context of each youth. All youth are randomly and injectively placed into individual cells in the cellular automata located in the global environment. The three-level grid containing the youth, family, and socio-cultural environment is a square containing 100 columns and 100 rows. Each patch corresponds to the youth at CA level one , the youth's family at CA level two , and the youth's socio-cultural environment at CA level three . This implantation provides a spatially explicit, grid-based network structure for the youth, who remain immobile throughout the simulation. The lack of spatial mobility reflects the fact that many youths exhibited high conservation in their social networks and interaction patterns during and immediately after the pandemic, partly because of the fact that such networks reflect the composition of the family and socio-cultural environment in which the youth is nested [69]. Social network density for youth and their peers at CA level one is operationalized by considering Moore neighborhoods with different diameters as shown in Figure 4. This implantation provides a spatially explicit, grid-based network structure for the youth, who remain immobile throughout the simulation. The lack of spatial mobility reflects the fact that many youths exhibited high conservation in their social networks and interaction patterns during and immediately after the pandemic, partly because of the fact that such networks reflect the composition of the family and socio-cultural environment in which the youth is nested [69]. Social network density for youth and their peers at CA level one is operationalized by considering Moore neighborhoods with different diameters as shown in Figure 4. --- Social Impact Model of Opinion Formation The model characterizes how youths' nonmedical use of prescription opioids might be governed by environmental influences, availability of prescription opioids at home, and the actions of their peers following a discrete opinion model based on social impact theory. The model consists of 10,000 youths and their corresponding family and socio-cultural environment. Each youth is considered to have one of two opposite opinions on nonmedical prescription opioid use, according to whether they currently nonmedically use prescription opioids. The presence or absence of nonmedical prescription drug use is assumed to be dictated entirely by the attitude of the youth with respect to drug use. ily. Corresponding colors for a family with at least one member with current prescribed opioids and family without any prescribed opioids are pink and ivory, respectively. Socio-cultural environment, in which the black areas represent a positive perspective toward drug use and gradations towards white represent successively more negative attitudes towards drug use. This implantation provides a spatially explicit, grid-based network structure for the youth, who remain immobile throughout the simulation. The lack of spatial mobility reflects the fact that many youths exhibited high conservation in their social networks and interaction patterns during and immediately after the pandemic, partly because of the fact that such networks reflect the composition of the family and socio-cultural environment in which the youth is nested [69]. Social network density for youth and their peers at CA level one is operationalized by considering Moore neighborhoods with different diameters as shown in Figure 4. --- Social Impact Model of Opinion Formation The model characterizes how youths' nonmedical use of prescription opioids might be governed by environmental influences, availability of prescription opioids at home, and the actions of their peers following a discrete opinion model based on social impact theory. The model consists of 10,000 youths and their corresponding family and sociocultural environment. Each youth is considered to have one of two opposite opinions on nonmedical prescription opioid use, according to whether they currently nonmedically use prescription opioids. The presence or absence of nonmedical prescription drug use is In accordance with social impact theory, each youth is characterized by two independent parameters called persuasiveness and supportiveness. The strength of persuasiveness is the ability to persuade another youth with a discordant drug use attitude to change their current attitude. The strength of supportiveness characterizes the ability to support another youth with an identical drug use attitude to persist in their current attitude [58]. Following the literature [58,70], the values of the persuasiveness and supportiveness attributes are assigned as random real-number values uniformly drawn between 0 and 100; when youth flip to an alternative attitude and associated behavior, their parameters for persuasiveness and supportiveness are independently drawn from the same distribution. Youth experience a net impact from interactions with the socio-cultural environment, family, and peers. Employing a formulation drawn from the opinion dynamics literature [58,70], the model characterizes the quantitative value of that impact I i for an agent i at each drug use occasion with the equation shown in Equation . I i = N ∑ j=1 p j d ij a 1 -o i o j - N ∑ j=1 s j d ij a 1 + o i o j -o i E i -o i M i where j denotes another agent influencing agent i, and o i and o j denote the dichotomous opinion values of agents i and j, respectively, towards opioid use, where -1 indicates an attitude disfavoring opioid use and +1 indicates an attitude in favor of opioid use. p j and s j denote the persuasiveness and supportiveness of agent j, respectively. In accordance with a gravity model formulation, d ij represents the Euclidean distance between youth i and j, and a defines the speed of drop-off of influence with distance. The current model considers peers at Moore neighborhoods with three different levels of influence on nonmedical opioids use for youth; therefore, d is equal to the minimum Moore neighborhood radius with which agents i and j are connected . For a given agent i, an agent j lying outside the distance of 3 Moore neighborhoods surrounding agent i is assumed to exert zero influence on agent i . Following the literature [58,70] and consistent with calibrated results of the model, a is considered equal to 2. The peer impact on youth i is calculated as the difference between the collective impact of the interacting youth exerting influence on youth i to change opinion ) and the collective impact of peers exerting influence to maintain youth i's current opinion ). E i is a so-called socio-cultural environment pro-drug influence parameter reflecting the level of promotion of drug use by youth i's neighborhoods, recreation areas, social events, and other forces . M i is a child's exposure to opioids at home parameter , reflecting the level of unsafe opioid storage practices by the youth's family . If the overall impact from interacting with peers, families, and the socio-cultural environment for a youth who is absent any nonmedical prescription opioids experience as characterized by Equation is greater than 0, then the current youth will immediately initiate nonmedical prescription opioids use. Equation individually governs initiation behavior in youth who are absent nonmedical prescription opioid use experience, as they do not have any acute withdrawal symptoms for opioids prior to any experience. After initial experience with nonmedical prescription opioid use, the behavior of youth continues to be influenced by peers, families, and the socio-cultural environment; however, another key factor also arises at this point: the severity of acute withdrawal. This factor can serve to either reinforce or discourage youth drug use [29]. Past research has suggested that the temporal evolution of the severity of acute withdrawal symptoms for opioid drugs can be characterized by a lognormal function of days from the last dose [71]. We employed a lognormal function where scale parameter µ ranged between 0 and 1 and shape parameter σ ranged between 1 × 10 -3 to 1.5 × 10 -3 . The attitude of youth with nonmedical prescription opioid use experience may change in each drug use situation according to Equation . o i =          o i with probability exp -I i T i exp -I i T i +exp I i T i -o i with probability exp I i T i exp -I i T i +exp I i T i The parameter T i represents the severity of acute withdrawal at the current time, and may be interpreted as a personalized parameter to show randomness in the behavior of youth, who may reject peers, families, and the socio-cultural environment's impact about nonmedical prescription opioid use and elect to quit or relapse. Although the impact is a deterministic endogenous parameter that represents a propensity to change-that is, it causes youths who are absent nonmedical prescription opioid experience to initiate opioid use -any youth with experience of nonmedical prescription opioid use may quit or relapse based on the probability calculated within Equation . A higher value of I i indicates a greater likelihood of changing behavior within Equation . Equation is a particular case of the system considered in the literature [72,73]. --- In-Person School Closures Implementation Due to the COVID-19 Pandemic The model characterizes in-person school closures associated with the COVID-19 pandemic as a change in the range of the Moore neighborhood mediating inter-youth interaction starting on 14 March 2020. Specifically, mass in-person school closures are implemented as a Moore neighborhood of range 0 and in the case of the Ontario school closure timeline, the Moore neighborhood range differs for mass closure, partial opening, and phased opening. --- Parametrization, Calibration, and Validation While the ABM presented in this study is a stylized one, it drew heavily on the Ontario Student Drug Use and Health Survey [61,62] to provide data to characterize dynamics of nonmedical prescription opioid use among youth in Canada. The baseline empirically grounded model reflects nonmedical prescription opioids use among students in Grades 7-12 from 2017 to 2021 based on OSDUHS [61,62] and projected until the end of 2025. Ontario mass in-person school closures were characterized by imposing a Moore neighborhood of range 0 in any phases of the lockdown. The first school closure period was from 14 March 2020 to 8 September 2020, then from 20 December 2020 to 8 January 2021, and finally from 12 April 2021 to 17 January 2022 [12,13]. The period of phased reopening was characterized as imposing a Moore neighborhood of range 2 from 8 September 2020 to 21 September 2020, with partial reopening characterized as a Moore neighborhood of range 1 from 8 January 2021 to 1 February 2021, and as a Moore neighborhood of range 2 from 2 February 2021 to 16 February 2021 to reflect the transition from the mass school closure to full reopening. Finally, the full reopening of Ontario schools was characterized as a Moore neighborhood of range 3. The model was calibrated so as to match model output against the time-series of the prevalence of youth with nonmedical prescription opioid use, and the time-series of the prevalence of youth using nonmedical prescription opioids frequently targets from 2017 to 2019 at 2-year intervals and data points of the prevalence of youth using nonmedical prescription opioids obtained from different resources in 2019. During the calibration process, we varied the following set of model parameters by hand until the model outputs approximated empirical data. Several model parameters were calibrated against the prevalence of youth with nonmedical prescription opioid use and the prevalence of youth using nonmedical prescription opioids obtained from families. Youth exposure to prescription opioids at home was calibrated against the prevalence of youth with nonmedical prescription opioid use and the prevalence of youth using nonmedical prescription opioids obtained from families. The severity of acute withdrawal from nonmedical opioid use was calibrated against the prevalence of youth with nonmedical prescription opioid use. The percentage of the sociocultural environment with a positive drug use view and the level of drug promotion inside the drug-positive socio-cultural environment were calibrated against the prevalence of youth with nonmedical prescription opioid use. The probability that peers share drugs with peers who request it was calibrated against the prevalence of youth using nonmedical prescription opioids obtained from families. The rate of encountering drug use situations for youth consisted of an initial amount and a coefficient to reflect the current socialization level, and both were calibrated against the prevalence of youth with nonmedical prescription opioid use. The rate of opioid prescription for each family member without prescription opioids and the probability that the duration of the opioid prescription ends for each family member was calibrated to accord with the prevalence of Canadians with an opioid prescription. See Table A1 for more details on parameter values and references. Finally, to ensure the reliability, validity, and robustness of the current model, a comprehensive validation process was conducted in three phases [74,75]. The first phase, verification, evaluates the correctness of the model by comparing the model's assumptions to the code logic. The second phase, validation, assesses the accuracy of the model's emergent behavior by comparing it to external criteria such as real-world data or expert knowledge. The final phase, sensitivity analysis, examines how variations in model assumptions impact the model's outcomes. The model demonstrates a visually good fit between the observed and model-predicted prevalence of youth with a nonmedical prescription opioid in 2021 during the COVID-19-related in-person school closures. --- Scenarios To investigate the impact of in-person school closures on nonmedical prescription opioid use among youth, two sets of scenarios were examined. The first set of scenarios examined outcomes from 6, 12, 18, and 24 months of mass in-person school closures followed by partial opening, phased opening, or full opening after removing the mass in-person school closures order. For the first set of scenarios, an ensemble of 30 realizations was conducted to secure statistical confidence in results despite stochastic variability. The second set of scenarios sought to examine the impact of the Ontario school closure timeline and further applied the intervention of reducing youth exposure to prescription opioids at home by 20%, 50%, and 80% at three different time points, considered singly. For the second set of scenarios, an ensemble of 100 realizations was conducted. Furthermore, to generate outcomes of interest that are compatible with the empirical data for the baseline, each simulation employed a 3-year burn-in period for the model. Following the burn-in period, the model was run for a time horizon from 2017 to 2025. Outcomes of interest are plotted daily to see the pattern of changes and recorded yearly to compare with the baseline. --- Results This section describes the results of model simulations. The Monte Carlo simulation of the model utilized different realizations to generate a sample of potential outcomes, given a set of inputs and assumptions. Each realization represented a single simulation of the system, utilizing a randomly generated set of inputs. By conducting multiple realizations and introducing randomness in the input parameters, the simulation aimed to gain a deeper understanding of the uncertainty of the results. The results are divided into three subsections, starting with the model-generated prevalence of youth with nonmedical prescription opioid use in the past year for different durations of in-person school closures, followed by a simulation of the model using the Ontario school closure timeline without any intervention. Finally, the impact of safe storage of prescription opioids at home on the prevalence of youth engaged in nonmedical prescription opioid use on the result of the model using the Ontario school closure timeline is explored. There is a small increase in the prevalence of drug use for the first six months of in-person school closures. Following this initial increase in prevalence, scenarios exhibit a decline to a steady level for the next six months of in-person school closures. Following that-for sufficiently long durations of in-person school closures-a plateau persists until the end of the in-person school closures. The prevalence of youth with nonmedical prescription opioid use significantly increases after the lifting of the in-person school closures, regardless of its duration. Nevertheless, the appearance of the increase remained consistent across different levels of in-person socialization following the lifting of in-person school closures, supporting the robustness of this conclusion . --- Simulation of the Model Using Ontario School Closure Timeline Figure 6 represents the model-generated prevalence of youth exhibiting nonmedical prescription opioid use in the past year based on the Ontario school closure timeline. Figure 6 also demonstrates a visually good fit between the observed and model-generated prevalence of youth with nonmedical prescription opioids, persisting even in the middle of in-person school closures in 2021. After the first school closure came into effect on 14 March 2020, the model-generated prevalence of youth exhibiting nonmedical prescription opioid use shows an increasing trend. The increase continues through the year as schooling experiences were more differentiated across Ontario with the different possible levels of socialization for youth. However, as the second mass in-person school closures due to the COVID-19 pandemic lasted for more than six months, the model-generated prevalence of drug use shows a downward shift. The model-generated prevalence of youth exhibiting nonmedical prescription opioid use increases after the lifting of the in-person school closures. Further, we used the model to estimate the overall impact of in-person school closures through the COVID-19 pandemic on youth opioid use by comparing the modelgenerated prevalence of drug use in 2025, with and without in-person school closures due to the COVID-19 pandemic. The model-generated prevalence of youth exhibiting nonmedical prescription opioid use could show a significant increase in 2025 as a consequence of in-person school closures. Furthermore, the distributions of simulation outputs and the coefficient of variation remain relatively stable under different population sizes . person school closures. Following this initial increase in prevalence, scenarios exhibit a decline to a steady level for the next six months of in-person school closures. Following that-for sufficiently long durations of in-person school closures-a plateau persists until the end of the in-person school closures. The prevalence of youth with nonmedical prescription opioid use significantly increases after the lifting of the in-person school closures, regardless of its duration. Nevertheless, the appearance of the increase remained consistent across different levels of in-person socialization following the lifting of in-person school closures, supporting the robustness of this conclusion . --- Simulation of the Model Using Ontario School Closure Timeline Figure 6 represents the model-generated prevalence of youth exhibiting nonmedica prescription opioid use in the past year based on the Ontario school closure timeline. Fig ure 6 also demonstrates a visually good fit between the observed and model-generated prevalence of youth with nonmedical prescription opioids, persisting even in the middle of in-person school closures in 2021. After the first school closure came into effect on 14 March 2020, the model-generated prevalence of youth exhibiting nonmedical prescription opioid use shows an increasing trend. The increase continues through the year as school ing experiences were more differentiated across Ontario with the different possible level of socialization for youth. However, as the second mass in-person school closures due to the COVID-19 pandemic lasted for more than six months, the model-generated prevalence of drug use shows a downward shift. The model-generated prevalence of youth exhibiting nonmedical prescription opioid use increases after the lifting of the in-person school clo sures. Further, we used the model to estimate the overall impact of in-person school clo sures through the COVID-19 pandemic on youth opioid use by comparing the model generated prevalence of drug use in 2025, with and without in-person school closures due to the COVID-19 pandemic. The model-generated prevalence of youth exhibiting non medical prescription opioid use could show a significant increase in 2025 as a consequence of in-person school closures. Furthermore, the distributions of simulation outputs and the coefficient of variation remain relatively stable under different population sizes . --- Impact of Safely Storing Prescription Opioids at Home on the Result of the Model Using the Ontario School Closure Timeline Figure 7 illustrates the impact of safely storing prescription opioids at home on the prevalence of youth with nonmedical prescription opioid use in the past year. Specifically, it shows the impacts when youth exposure to prescription opioids at home is reduced by 20%. Figure 7b illustrates a scenario in which the intervention of safely storing prescription opioids with a decrease of 20% in youth exposure to prescription opioids at home was implemented in 2017. Figure 7c depicts the effects of this intervention when it was implemented at the start of the COVID-19-related in-person school closures, while Figure 7d depicts the effects of the intervention of securely storing prescription opioids when it was implemented at the start of the 2022-2023 academic year. Cases in which this intervention was implemented before or early in the COVID-19-related in-person school closures slightly mitigate the extent of the increase in prevalence of drug use after the lifting of in-person school closures . However, even a delayed implementation of safely storing prescription opioids-where such precautions are introduced after the lifting of the COVID-19-related in-person school closures-has also achieved a modest reduction in the peak in the prevalence of youth with nonmedical prescription opioid use . --- Discussion This simulation demonstrates that public health orders mandating in-person schoo closures may have had direct and indirect effects on youth opioid use during and afte school closure. Limited in-person social interaction changes the circumstances surround Decreasing youth exposure to prescription opioids by 20% would reduce the prevalence of youth with nonmedical prescription opioid use after the lifting of the COVID-19related in-person school closures by 27% and 28% in 2025 relative to the baseline, depending on whether the intervention was implemented before or at the beginning of the COVID-19-related in-person school closures, respectively. However, late implementation of the intervention at the start of the 2022-2023 academic year would also reduce the prevalence of youth with nonmedical prescription opioid use in 2025 by 9%, relative to the result of the model using the Ontario school closure timeline without any intervention. The results of the model also indicate that decreasing youth exposure to prescription opioids by 50% can lead to a significant reduction in the prevalence of nonmedical prescription opioid use among youth after the lifting of the COVID-19-related in-person school closures. Specifically, the prevalence of youth with nonmedical prescription opioid use in 2025 would be reduced by 58% and 56%, depending on whether the intervention was implemented before or at the beginning of the COVID-19-related in-person school closures, respectively. With a late implementation at the start of the 2022-2023 academic year, the prevalence of youth with nonmedical prescription opioid use in 2025 would still be reduced by 19% in comparison to the model using the Ontario school closure timeline without any intervention . Finally, a significant decrease in youth exposure to prescription opioids by 80% could greatly reduce the prevalence of nonmedical prescription opioid use among youth following the lifting of the COVID-19-related in-person school closures. The prevalence of youth with nonmedical prescription opioid use in 2025 could be lowered by 68% and 66% if the intervention was implemented prior to or at the beginning of the COVID-19-related in-person school closures, respectively. Even with a delayed implementation at the start of the 2022-2023 academic year, the prevalence of youth with nonmedical prescription opioid use in 2025 could still be reduced by 21% compared to the model using the Ontario school closure timeline without any intervention . --- Discussion This simulation demonstrates that public health orders mandating in-person school closures may have had direct and indirect effects on youth opioid use during and after school closure. Limited in-person social interaction changes the circumstances surrounding youth, resulting in unintended consequences on risk factors for opioid use. The simulation illustrates that the pervasiveness of unsafely stored opioids in homes and limited in-person social interaction with anti-drug peers could facilitate the initiation of opioid use among youth. However, decreasing social events for recreational drug use, the absence of peers who might encourage taking certain risks [76], and the negative effect of withdrawal symptoms limit the increase of opioid use further during in-person school closures. The lifting of in-person school closures may lead to a high increase in the prevalence of youth engaged in nonmedical prescription opioid use. The "rebound" effect on the prevalence of nonmedical prescription opioid use after in-person school closures end could occur for several reasons. One possible explanation is that when in-person school closures end, youths may be more likely to come into contact with peers who use drugs. These social networks can play an important role in shaping youth drug use behaviors. The increased socialization that occurs when school is in person can expose young people to a higher risk of peer pressure and influence, which could lead to an increase in drug use. The literature also argues the plausibility that ongoing effects of the COVID-19 pandemic in North America will place youth at a greater risk for nonmedical prescription opioid use [15,77,78]. Factors outside the scope of the model may have influenced such effects in either direction. For example, while family members staying home from work may have restricted youth access to opioids in some households, in some settings, the consequences of concurrent parental unemployment and spending more time at home and witnessing possible elevated levels of family member substance use [19] may put youth at a higher risk for opioid use. The simulation outcomes demonstrate that interventions that decrease youth exposure to prescription opioids in the home context could constitute an effective intervention pathway to mitigate what could be a significant increase in youth opioid use following the lifting of in-person school closures. Interventions targeting associated risk factors for youth exposure to prescription opioids at home can be beneficial whenever they come into effect, whether before or during in-person school closures; while the benefits secured by intervention at those times are particularly pronounced, later implementations will also help mitigate what could constitute a significant increase in youth opioid use. The findings from this study should be interpreted within the context of the following limitations. First, the current approach focuses specifically on the in-person peer socialization component of the peer influence process; this work therefore does not consider either peer selection or online peer socialization, which may influence regular substance use among youth [79,80]. Instead, our goal was to identify the extent to which lack of inperson peer socialization as a result of in-person school closures could plausibly influence nonmedical opioid use among youth. Second, research indicates that youth consumption of prescription opioids may be mediated by anxiety and hopelessness [81], as contributed to by the adverse psychological impacts on youth from the pandemic compounded by in-person school closures and isolation from peers. Since this study focused on the sociological aspect of substance use in particular, future research could study psychological factors which may have a reinforcing effect on youth drug use. Third, the current modeling analysis does not explicitly track the effect of opioid tolerance and possible overdoses on later opioid use among youth. Fourth, the current level of model abstraction filtered out some less-essential details for youth within the model, such as youth siblings, youth year in school, and disconnection from peers after school. Finally, exploring alternative network structures and theories of opinion dynamics among youth in future agent-based modeling studies may be worthwhile. Of particular note, more extensive national data on youth opioid use would especially inform the model parameterization and assumptions, support testing the plausibility of model baseline scenario outcomes, and support critical evaluation of the current conclusions. Despite these limitations, identifying a potential increase in the prevalence of youth with nonmedical prescription opioid use after the lifting of in-person school closures suggests the importance of effective opioid surveillance, and awareness and availability of naloxone and treatment options to prevent serious medical outcomes and death in this vulnerable population. Furthermore, efforts to encourage new opioid packaging, such as personalized pill dispensers, may lower the accessibility of incompletely dispensed prescription opioids. It should be noted that a disruption to the supply of opioids from home should be combined with supporting and promoting awareness of the risks of opioid abuse amongst youth. --- Data Availability Statement: The data presented in this study are openly available at www.camh. ca/osduhs . The implemented model can be found at https://doi.org/ 10.5281/zenodo.7559419. --- Parameter Values References Level of supportiveness for peers Uniform distribution between 0 and 100 Assumed [23,58] Level of persuasiveness for peers Uniform distribution between 0 and 100 Assumed [23,58] Severity of acute withdrawal from nonmedical opioid use Lognormal distribution Calibrated [71] Probability that peers share drugs with peers who request it 0.075 Calibrated [61,62]

Substance use behavior among youth is a complex peer-group phenomenon shaped by many factors. Peer influence, easily accessible prescription opioids, and a youth's socio-cultural environment play recognized roles in the initiation and persistence of youth nonmedical prescription opioid use. By altering the physical surroundings and social environment of youth, in-person school closures may change risk factors for youth drug use. Acknowledging past research on the importance of the presence of peers in youth substance use risk behavior, this paper reports the findings from the use of an agent-based simulation grounded in social impact theory to investigate possible impacts of in-person school closures due to COVID-19 on the prevalence of nonmedical prescription opioid use among youth. The presented model integrates data from the Ontario Student Drug Use and Health Survey and characterizes the accessibility of within-home prescription opioids. Under the status quo, the lifting of in-person school closures reliably entails an increase in the prevalence of youth with nonmedical prescription opioid use, but this effect is ameliorated if the prescription opioids are securely stored during the in-person school closures period.

In 1994, participants at the International Conference on Population and Development were encouraged to think of new ways to improve family planning in the developing world. The ICPD's Program of Action emphasized that the active participation of both men and women is essential for reducing unmet need for family planning. 1,2 As a result, men's role in family planning has been highlighted at various public health conferences and in messages from donor agencies, governments and the media. This is particularly important because, in certain societies, women require a man's consent to make reproductive health decisions, 3,4 and lack of male involvement places the heavy burden of reproductive health decision making solely on the woman. 5 Husbands' opinions on family planning may, therefore, result in additional barriers to its use. For example, analysis of 1992 Morocco Demographic and Health Survey data found that husbands' fertility desires were associated with women's contraceptive use, after models were adjusted for the women's own fertility desires. 6 Hence, men's involvement in family planning programs and policies is necessary to increase contraceptive uptake. 7 It is also important that surveys on sexual and reproductive health interview both members of a couple to identify their family planning needs and to account for the different attitudes, views and needs of the two partners. In a couples study conducted in rural India, spouses gave highly consistent responses on reproductive health events, such as current use of contraceptives , but gave less consistent responses about attitudes toward contraception and fertility desires . 8 Unfortunately, many studies purported to be on couples include only one partner's responses and assume that interviewees are fully aware of their partner's thoughts and desires. For example, DHS data obtained from 35 countries included only wives' responses about the couple's approval or disapproval of contraceptive use. 9 Because a woman may not truly know her partner's attitudes and desires, information from both partners is needed to produce a more precise understanding of husband-level factors affecting contraceptive use. In this study, we investigated associations between relationship characteristics and contraceptive use among married and cohabiting couples in three Kenyan urban centers: Nairobi, Mombasa and Kisumu. We hypothesized that couples in which neither spouse desires another child within the next two years will be more likely than others to use contraceptives. Furthermore, couples in which both partners acknowledge having communicated about their desired number of children and about their use of By Laili Irani, Ilene S. Speizer and Jean-Christophe Fotso of women using contraceptives was greater if both partners desired no more children than if the wife alone felt that way . 21 Other studies have shown that when women do not desire more children in the near future, but their partner does, the women are more reluctant to use family planning. For example, in a study of couples in two areas of Kenya, women cited lack of partner agreement on fertility desires as a major barrier to contraceptive use; 22 women's covert use of contraceptives was often considered a sign of disrespect by partners, who would scorn the women if they found out. 22 Similarly, an analysis of data from five Asian countries suggests that women did not use contraceptives if their husband desired more children. 24 In other couple-level studies, wives' fertility preferences were more likely to be associated with contraceptive use than their husband's reported preferences. 19,21,26,27 For example, according to a study of married or cohabiting couples in KwaZulu-Natal, South Africa, women's fertility preferences were associated with use, whereas their husband's desires were not. 26 Given these inconsistencies, more couple-level analyses are needed to study associations between contraceptive use and spousal fertility desires and ideal family size. With respect to couple communication, findings from several studies conducted in Africa and South Asia suggest that communication between partners about fertility and contraception is positively associated with contraceptive use and negatively associated with large family size. 25,[28][29][30][31][32][33][34][35][36] For example, an analysis of 1993 Kenya DHS data found that couples in which both partners reported discussing family planning were more likely to be ever-users of family planning than never-users, although the relationship may go in the other direction . 37 The relationship between couple communication and contraceptive use-adjusting for individual-and environmental-level characteristics within a more defined context, such as an urban setting-remains uninvestigated. Finally, social ecological theory proposes an association between environmental characteristics and contraceptive use. The few studies that have looked at relationships between women's contraceptive use and household and community characteristics have done so without including other characteristics. [38][39][40][41][42] Most of those have focused on household wealth, used national-level data for developing countries and adjusted for urban-rural differences, and have found that women residing in poorer households are less likely to use contraceptives than richer women. 38,39 Poor women have the lowest level of contraceptive use, which results in the highest rates of unmet need, unwanted pregnancies and fertility. [40][41][42] Few studies have examined women's contraceptive use and community characteristics, such as neighborhood type . 43,44 Furthermore, few have included both spouses' characteristics and determined whether household characteristics and community factors together are associated with couples' family planning would be more likely than others to use contraceptives, as better communication may increase partner support in using contraceptives to space or limit childbearing. --- Theoretical Basis We based our study on social ecological theory, which suggests that an individual's behavior is associated with at least three spheres of influence: individual characteristics, interpersonal features and environmental factors. 10,11 We chose social ecological theory because of its relevance, inclusivity and comprehensibility. Several demographic studies have identified individuallevel traits or social and demographic characteristics that affect contraceptive use, most notably formal education; 12 however, findings on the relative importance of husbands' and wives' education are inconsistent. 13,14 According to a study from Nepal, a husband's education has a greater influence on contraceptive use than his wife's, especially in relation to male-controlled methods such as male sterilization and condoms. 13 An analysis of Bangladesh DHS data found that both partners' education levels were significant determinants of reported contraceptive use. 12 In another study from Bangladesh, as a woman's education level increased, her husband's preference for more children had less effect on her decision to use contraceptives. 14 Unlike the previously mentioned Nepali study, an analysis of data from 14 Sub-Saharan African countries suggests that a woman's education is a stronger predictor of contraceptive use than her husband's education. 13,15 The difference in findings between South Asia and Sub-Saharan Africa might reflect differences in gender context between the two regions, such as the larger proportions of women in Sub-Saharan Africa than in Asia who live alone and raise their children by themselves. 13,16 Other individual-level factors associated with contraceptive use include spousal age difference, religion and parity. Two studies conducted in Ghana using couple-level data concluded that the greater the age difference between spouses, the lower the probability of contraceptive use, and partners' adherence to different religions was positively associated with method use. 17,18 We note that studies primarily analyzing national-level data across countries have found that both spouses' education, age, religious affiliation and current parity are all associated with contraceptive use; [17][18][19][20] however, more research is needed among urban couples on these relationships, because the individual-level characteristics of urban residents may differ from the national average. Social ecological theory also posits a link between relationship-level factors and contraceptive use. Some research has examined contraceptive use and couples' fertility desires and reported communication. [21][22][23][24][25] According to studies of couples in Nigeria and Pakistan, women tend to use contraceptives when their husbands are satisfied with the number of children they have. 23,25 An analysis of 1989 and 1993 Kenya DHS data found that the proportion household the man who identified as the head with the woman who identified as the spouse of the head; this resulted in a maximum of one couple per household. We dropped 2,452 women and 1,079 men from the analysis because they were not legally married or cohabiting-that is, living together in the same household as a couple. In addition, we dropped 61 women and 16 men because they were not full-time residents of the household; 1,515 women because their homes were not selected for male interviews; 64 men and 306 women because they were not designated as the household head or spouse of the head, respectively; and 557 women and 461 men because their partner did not complete the interview. Thus, our sample contraceptive use, within and across urban settings. As we have noted above, there is increased literature exploring the effects of individual characteristics on contraceptive use; however, the effects of characteristics relating to couple communication and couple desires, after adjusting for environmental factors, on contraceptive use among couples living in these ever-expanding urban centers have not been jointly studied. The objective of this article is to examine associations between relationship-level characteristics and contraceptive use among couples living in urban Kenya. --- METHODS --- Data and Sample We used baseline survey data from the Measurement, Learning & Evaluation Project in Kenya-the evaluation component of the Urban Reproductive Health Initiative , which aims to improve the health of urban populations, with special attention to the urban poor, in Kenya, Nigeria and Senegal and in Uttar Pradesh, India. The Urban RH Initiative in Kenya, called Tupange, is helping the government revitalize its urban family planning programs. As part of an evaluation of interventions to increase contraceptive prevalence among urban populations in Kenya, the MLE Project collected population-level data between September and November 2010 from women in Nairobi, Mombasa, Kisumu, Machakos and Kakamega, and from men in Nairobi, Mombasa and Kisumu. Prior to sample selection, the 2009 census sampling frame was used to classify all primary sampling units in Nairobi, Mombasa and Kisumu as predominantly formal or informal ; a household was classified as formal if the dwelling was built on land that the government had allocated for housing and as informal if not. Representative samples of women and men were then selected for interview using a two-stage sampling method. First, samples of primary sampling units were randomly selected to represent each city's population by using probability proportional to population size; half of each sample was selected from the formal settlement strata and the other half from the informal settlement strata. Second, 30 households were randomly chosen from each selected sampling unit for household and individual interviews. All eligible women aged 15-49 from selected households were invited to participate in a pencil-and-paper interviewer-led survey covering basic social and demographic characteristics, reproductive health and family planning use; in half of selected households in Nairobi, Mombasa and Kisumu, all men aged 15-59 were also invited to participate in the survey. For this analysis, we used data from the 5,774 women and 2,503 men interviewed in Nairobi, Mombasa and Kisumu. The response rates for women were 82%, 85% and 83%, respectively; the weighted mean was 83%. For men, the response rates were 70%, 70% and 56%, and the weighted mean was 66%. 45 We created a couples data set by matching within a •Independent variables. We included several relationshiplevel characteristics to represent couple interactions. Desire for another child was measured by asking both members of a couple, "Would you like to have another child?" We classified joint responses as both partners want another child, neither wants another child and partners had discordant responses. We measured recent communication between spouses about their desired number of children with the question, "Have you and your spouse/ partner discussed the number of children you would like to have in the last six months?" On the basis of both partners' answers, we classified responses as: both said that they had discussed desired fertility, both said they had not discussed desired fertility, and partners had discordant responses. Communication between spouses about family planning use was assessed by asking both partners, "Have you and your spouse/partner discussed the use of a family planning method in the last six months?" We classified responses in the same way as responses to the measure of communication about desired fertility. In addition, we included individual-level and community characteristics. Individual-level characteristics were the age, education level and religion of each spouse, and the couple's number of living children as reported by the wife. Community-level characteristics were neighborhood type and household wealth-indicators of place-based poverty and asset-based poverty, respectively. 48 The wealth measure was created by using principal components analysis to construct a linear index for each household from 20 asset ownership indicators.* 48,49 The wealth index variable was measured in tertiles and the population was assigned to three categories: poor, intermediate and rich. In addition, city of residence was used as a community-level variable. --- Analysis We used the responses given by individual husbands and wives to each question or variable to compare the frequency of concordant responses and to quantify agreement between partners' responses. 50 We used F tests to identify significant differences in couples' joint characteristics. Multivariate analyses were conducted to examine associations between couple interactions and contraceptive use, controlling for individual-and community-level characteristics; the unit of analysis was the couple. † We created three multivariate models: The first included only the couple interaction variables, the second added individual-level characteristics and the third added community-level characteristics. Three similar multivariate models were used to examine intention to use contraceptives among couples not currently practicing contraception. All statistical computations were conducted with Stata 12. 51 Analyses were conducted after population weights were applied, to represent the married or cohabiting urban populations of the three study cities; svy commands were used to adjust for the complex sampling design. consisted of 883 couples, which resulted in 840 couples after woman-level population weights were applied. We performed F tests to determine if the subsample of couples with completed interviews from both partners was similar to the subsample of married or cohabiting women whose partners were identified as the head of the household but who did not complete the survey; the null hypothesis for the tests was that the subsamples were similar. The p values from the F tests showed that women in the two subsamples had similar characteristics. We obtained approval to conduct the surveys from the University of North Carolina at Chapel Hill institutional review board and the Kenya Medical Research Institute; secondary data analysis was exempted from the requirement of ethical approval by the UNC IRB. --- Variables •Dependent variables. Our first outcome of interest was current contraceptive use, as reported by the female partner. Current contraceptive use included all modern and traditional methods: the pill, injectable, IUD, implant, condom, male and female sterilization, Standard Days Method, lactational amenorrhea method, emergency contraceptive pills, calendar method and withdrawal. If more than one contraceptive method was reported, the more effective method was selected. We used women's reported contraceptive use because, in Kenya, men are more likely than women to have extramarital partners and they may have varied their family planning use patterns with different partners. 46,47 Therefore, men's reported contraceptive use may not have accurately reflected the couple's use. Our second outcome was intention to use contraceptives among women currently not practicing contraception. *The 20 assets included a vehicle, computer, TV, bicycle, clock, refrigerator, electric stove, mosquito net, VCR, iron, sofa or flashlight; domestic help; the number of rooms in the house; a separate kitchen, electricity, toilet, home insurance, and the types of floors and walls. †When we ran models with only women's demographic characteristics, the model fit was much lower than when couples' variables were used. Hence, we focused on couple-level characteristics. agreement about whether they had recently discussed their desired number of children; however, a greater proportion of couples in which partners agreed about having discussed family planning in the past six months were using contraceptives , compared with couples in which both partners reported not having talked about it or partners disagreed . A greater proportion of the most affluent couples than of --- RESULTS --- Characteristics of Women and Their Partners Generally, wives were younger than their husbands: Onequarter of women were aged 15-24, whereas only 9% of men were in that age-group . Males tended to be better educated: Seventy-one percent of husbands and 57% of wives had at least some secondary education. About two-thirds of women and men were Protestant, two in 10 were Catholic, and one in 10 were Muslim or members of other faiths. The vast majority of wives and husbands reported having at least one child . Fifty-three percent of wives and 63% of husbands wanted to have more children. Similarly, half of wives and twothirds of husbands reported having discussed the number of children they would like to have with their partner within the six months prior to interview. Fewer than half of women stated that they had recently talked with their partner about family planning, whereas two-thirds of men reported that they had done so. The biggest differences in responses were in regard to use of condoms, other modern methods and traditional methods: Among men, 13% reported using condoms, 7% other modern methods and 11% traditional methods, whereas those proportions among women were 5%, 9% and 6%, respectively. Among contraceptive nonusers, 23% of husbands were unsure about whether they intended to use contraceptives; only 11% of wives were unsure. Spouses in about half of couples reported being in the same age-group and having the same level of education . In 74% of couples, partners shared a religion. Spouses in 76% of couples agreed on their number of living children. Agreement between partners about childbearing desires was high ; however fewer couples agreed on having discussed their desired number of children or family planning use in the last six months , and even fewer agreed on the contraceptive method they were currently using . --- Couples' Characteristics and Contraceptive Use In the couples sample, 76% resided in Nairobi, 19% in Mombasa and 4% in Kisumu; one in four lived in informal housing. Sixty percent of couples reported current contraceptive use . Couples' contraceptive use differed according to several individual-, couple-and community-level characteristics. A greater proportion of couples in which both partners were Protestant or in which partners were of different religions were currently using contraceptives , compared with those in which both partners were Catholic or Muslim . A smaller proportion of couples with no living children than of those with one or more were practicing contraception . Contraceptive use was more common among couples in which neither partner desired another child than among couples in which both partners wanted another child or partners had discordant responses . Contraceptive use did not differ by couples' agreed that they had done so and those who disagreed on the subject had greater odds of contraceptive use; the findings were significant across all three models . In model 2, couples in which both spouses had at least some secondary education had greater odds of using contraceptives than couples in which both partners had some primary education or less ; however, the finding lost significance in the final model. In addition, Protestant couples and couples in which partners had different religions had about three times the odds of Muslim couples of using contraceptives in model 2 ; these differences decreased but remained significant in the final model . In model 3, couples with no children couples living in poorer households used contraceptives . Contraceptive use was more common among couples living in Nairobi than among those in Mombasa or Kisumu . --- Multivariate Findings In multivariate analyses, couples in which both partners reported wanting another child were less likely to use contraceptives than couples in which both partners reported not wanting another child ; this finding was significant across all three models . Compared with couples in which partners agreed that they had not discussed family planning with each other in the last six months, those who --- TABLE 4. Odds ratios from logistic regression analyses assessing couples' likelihood of current contraceptive use, by selected characteristics --- DISCUSSION In this study, we performed a detailed couple-level analysis of urban populations of Kenya, which are insufficiently studied. According to the most recent Kenya DHS, 20% of urban women aged 15-49 have an unmet need for contraception, about half of which is for spacing and the other half for limiting . 52 Our analysis shows that almost 60% of the couples interviewed reported current use of contraceptives. Husbands generally desired more children than their wives, a finding that has been documented in previous studies. 19,53 Fewer than two-thirds of husbands and wives reported talking with their spouse about their desired number of children or about family planning use. In multivariate analyses, both partners' desire to not have and couples with one living child were less likely than those with three or more children to use contraceptives . Finally, the wealthiest couples had almost twice the odds of the poorest couples of using contraceptives . According to multivariate analyses among couples not currently practicing contraception, both partners wanting another child was negatively associated in the final model with intending to use contraceptives . Giving discordant responses about recently having discussed desired number of children and agreeing about recently having discussed family planning were each positively associated in the final model with intention to use contraceptives . suffered from recall bias; for example, participants may not have accurately recalled discussing their desired number of children with their spouse in the prior six months. Social desirability may have introduced bias, because participants may have wished to look modern by reporting contraceptive use. The prevalence of contraceptive use among our survey respondents, however, was similar to that in DHS data; 52 furthermore, participants were asked to describe several other characteristics regarding their use, reducing the likelihood of such bias. There is also the possibility of interviewer bias, because the reporting of reproductive health practices or discussions related to family planning are generally private matters. To mitigate this potential bias, we used well-trained interviewers who ensured that the surveys were conducted privately. It is also noteworthy that the key independent variables of communication between partners regarding desired number of children and family planning use in the prior six months may be correlated or possibly endogenous. Tests showed a 33% correlation between the two variables, which we determined to be independent enough to include them as separate variables in the multivariate analyses. --- TABLE 5. Odds ratios from logistic regression analyses assessing the likelihood that couples not currently using contraceptives intend to use contraceptives, by selected characteristics --- Conclusion More research on urban couples is needed to understand the barriers they face in accessing family planning services. A longitudinal study that follows couples through the stages of their reproductive life would help to determine the specific challenges they face in deciding to use contraceptives and the barriers they encounter in attempting to obtain family planning services. A qualitative or a longitudinal study in an urban setting would help better clarify the timing of changes in certain couple-level factors: for example, how changes in couples' fertility desires over time influence family planning use . In addition, this research could be replicated in other settings with lower contraceptive prevalence to determine whether the results would differ according to the population studied. Given our finding on the association between spousal communication and contraceptive use, family planning programs that encourage men to be involved in family planning decision making may increase contraceptive use among couples. Male motivation campaigns could include counseling and training in interpersonal communication, as well as multimedia messaging. Outreach health workers can be trained to teach couples basic skills in communicating about family planning-related issues, to address their concerns and to encourage them to participate in ongoing programs. 57 Outreach targeting the poor may be more effective, given that the poorest couples in our sample were less likely than the wealthiest to be using contraceptives. another child appeared to be a strong motivator of current and future contraceptive use. These findings support results from analyses of Kenya DHS data showing that women are more likely to use contraceptives if both spouses desire fewer children. 21 The findings also support our hypothesis that contraceptive use is associated with both spouses' desire not to have another child. This suggests that as couples reach their desired number of children, couple-level family planning use increases. Our results show that communication between partners about family planning use is associated with current contraceptive use, and with intention to use among those not currently practicing contraception. Similar findings were noted in an analysis of data from Kenyan couples in which higher levels of ever-use of contraceptives were noted among couples who reported spousal communication. 37 The findings also support our hypothesis that contraceptive use and intention to use contraceptives are greater among couples in which both partners report communicating about family planning. On the other hand, contraceptive use could also lead to discussion among couples. According to our analysis of individual-level characteristics, 90% of the urban Kenyan women were married to men with similar or higher education levels, a finding consistent with previous studies conducted in Central Asia and the Middle East. 54 Furthermore, our bivariate and multivariate analyses indicate that couples in which both partners had more than a primary education were more likely to use contraceptives than couples in which both partners had only some primary education or less. Religion also was associated with contraceptive use in analyses adjusted for other factors. Contraceptive use appears high among Protestant couples, which is consistent with the greater acceptability of contraception in that community. 18 Couples in which partners adhere to different religions were more likely to use contraceptives than those in which both partners were Muslims or followers of other non-Christian faiths, as also noted in couple studies from Ghana. 17,18 Couples with fewer living children were less likely to use contraceptives, a result also found in other couple studies. 19,55 In summary, we note that our findings on associations between couple-and individual-level characteristics and contraceptive use are consistent with the literature, but add important new insights relating to the urban setting. By accounting for the characteristics of husbands and wives in an urban environment, we have highlighted that couples' desire to not have another child and better spousal communication have an important relationship with couples' contraceptive use and intention to use contraceptives. --- Limitations Our study is limited by its use of cross-sectional data; we cannot establish temporality or causality of associations between spousal communication or any other variable and contraceptive use. Furthermore, the survey may have nivel de la relación y la intención de usar anticonceptivos fueron parecidos, tanto en el análisis de personas que no estaban utilizando anticonceptivos como en el de personas que sí los estaban utilizando. Conclusión: Este estudio relaciona ciertas características a nivel de la relación de pareja con el uso actual de anticonceptivos y la intención de utilizarlos, en parejas que viven en zonas urbanas de Kenia. Los programas de planificación familiar que promueven la comunicación conyugal sobre planificación familiar y el número deseado de hijos pueden mejorar el uso de anticonceptivos entre parejas urbanas. --- RÉSUMÉ --- Contexte: Peu d'études font appel aux données de couple pour identifier les associations entre les caractéristiques individuelles et de relation et la pratique contraceptive en milieu urbain. Méthodes: Les données d'enquêtes en population collectées en 2010 dans trois villes du Kenya -Nairobi, Mombasa et Kisumu -ont servi à identifier 883 couples. Des analyses biet multivariées ont été effectuées pour examiner les associations entre les caractéristiques au niveau de la relation et la pratique contraceptive parmi les couples qui pratiquaient alors la contraception. D'autres analyses se sont penchées sur l'intention de contraception parmi les couples qui ne la pratiquaient alors pas. Résultats: Soixante pour cent des couples ont déclaré pratiquer la contraception au moment de l'enquête. Dans les analyses multivariées, les couples désireux d'avoir encore un enfant sont moins susceptibles de pratiquer la contraception que ceux qui n'en désirent plus . Les couples dont les deux partenaires ont fait état d'une communication conjugale au sujet de la planification familiale durant les six derniers mois sont plus susceptibles de pratiquer la contraception que ceux n'ayant déclaré aucune communication du couple sur la question . Les résultats des analyses relatives aux associations entre les caractéristiques de la relation et l'intention de pratiquer la contraception parmi les couples non utilisateurs ressemblent à ceux des analyses relatives aux couples utilisateurs. --- Conclusion: Dans cette étude, les caractéristiques de relation paraissent associées à la pratique contraceptive actuelle et à l'intention de pratique parmi les couples du Kenya urbain. Les programmes de planification familiale qui encouragent la communication conjugale sur la contraception et le nombre d'enfants désiré pourraient améliorer la pratique contraceptive des couples urbains. --- Author contact: [email protected] Planning, 2012, 43: 33-42. 48. Rutstein SO and Johnson K, The DHS Wealth Index, DHS Comparative Reports, Calverton, MD, USA: ORC Macro, 2004, No. 6. --- Filmer D and --- RESUMEN --- Contexto: No existen muchos estudios que hayan analizado las relaciones que existen entre las características de las parejas, tanto a nivel individual como a nivel de la relación, y el uso de anticonceptivos en áreas urbanas. Métodos: Se utilizaron datos de encuestas de población recolectados en 2010 en tres ciudades kenianas-Nairobi, Mombasa y Kisumu-para identificar a 883 parejas. Se condujeron análisis bivariados y multivariados para examinar las asociaciones entre características a nivel de la relación de pareja y el uso de anticonceptivos en parejas que los estaban utilizando en el momento de la encuesta. Otros análisis adicionales investigaron la intención de usar anticonceptivos en parejas que en ese momento no estaban haciendo uso de ellos. Resultados: El sesenta por ciento de las parejas reportaron estar usando anticonceptivos. En los análisis multivariados, las parejas que deseaban tener otro hijo mostraron una probabilidad menor de usar anticonceptivos que las parejas que no deseaban tener más hijos . Las parejas en las que ambos miembros reportaron haber mantenido una comunicación conyugal sobre planificación familiar en los seis meses anteriores mostraron una probabilidad mayor de usar anticonceptivos que las parejas que reportaron no tener comunicación conyugal sobre el tema . Los resultados sobre la asociación entre las características a

Few studies have used couple data to identify associations between individual-and relationship-level characteristics and contraceptive use in urban areas.Population-based survey data collected in 2010 in three Kenyan cities-Nairobi, Mombasa and Kisumu-were used to identify 883 couples. Bivariate and multivariate analyses were conducted to examine associations between relationship-level characteristics (i.e., desire for another child, and communication about desired number of children and family planning use) and contraceptive use among couples currently using contraceptives; additional analyses investigated intention to use contraceptives among couples currently not practicing contraception.CONCLUSION: In this study, relationship-level characteristics were associated with current contraceptive use and intention to use contraceptives among couples in urban Kenya. Family planning programs that promote spousal communication about family planning and desired number of children may improve contraceptive use among urban couples.

Introduction Nowadays, express delivery volume worldwide is increasing daily due to the ecommerce sector's explosive growth. Customers are demanding delivery methods that are more effective, safe, and affordable, and current logistics service providers are aggressively pursuing these goals [1]. At present, most academic research and real-world operations focus on the optimization of traditional transport distribution routes and the improvement of existing management modes. Overall, the effectiveness produced by these methods has been somewhat limited in recent years [2] since traditional transport modes are generally fixed in stone and can only be optimized at a micro level. Therefore, if logistics service providers wish to achieve more effective breakthroughs in improving distribution operations than they have in the past, they may have to seek a new distribution method in the future. Compared with traditional express delivery methods, in urban logistics, drones can break through the limitations of time, space, and geography due to technological breakthroughs, and realize the automation, unmanned delivery, and information of express delivery to solve some problems in resource allocation and traffic congestion of current urban logistics. Thus, it can improve the delivery efficiency and service quality of express delivery to ease the contradiction between express demand and express service capacity. With the continuous development of artificial intelligence, automation, and other technologies, the efficient execution of military, security, patrol, logistics, and other tasks by drones will gradually become the norm [3]. This kind of distribution has untapped potential in the eyes of logistics service providers. Due to the continuous updating and maturity of UAV-related technologies, UAVs in logistics applications have gradually demonstrated unique performance advantages such as their low cost, environmental protection, and energy saving properties [4,5], and studies in the field of medical supplies, emergency supplies, and part of the conventional supplies distribution have shown that the use of UAVs for supplies distribution can effectively overcome the impact of the terrain environment on logistics activities, and based on combining scientific algorithms, to a certain extent can save the cost of labor, transportation, storage and other aspects of the logistics process [6][7][8][9]. As a result, many logistics organizations have made an effort during the past few years to conduct drone logistics pilots. In the United States, Amazon.com has suggested the Prime Air initiative, which aims to provide drone couriers with quicker and more convenient logistics and distribution services. In China, one of the biggest e-commerce platforms, Jingdong, has also established the Jingdong Drone Flight Base and begun to deploy drones in Jiangxi, Sichuan, Hunan, and other locations, and demonstrated success in express delivery. SF, a pioneering company in China's express delivery market, has also implemented the SF High-End Logistics Drone Manufacturing Base Project, demonstrating the viability of the current drone technology by safely operating its drones in Jiangxi, western Sichuan, Jinshan, Shanghai, the Great Bay Area, and numerous other locations for nearly one million frames [10,11]. Since the majority of drones used for distribution around the world are still in the experimental stages or have only being flown on a planned basis in more extreme environments, the Research and Development Perspectives is more inclined to improve drone reliability and optimize their distribution routes, which is to put them into daily distribution tasks safely and efficiently as soon as possible and to minimize the logistics costs associated through this new vehicle [12]. While drone research and development technology are advancing, the development of drone loading and unloading, ground transfer, airspace docking, and other related supporting facilities is still in its infancy. As a result, a mature drone distribution network cannot be formed, and little effort has been put into creating the drone logistics industry's "soft environment". The public has grown somewhat wary of adopting this new type of carrier for delivery tasks due to the ongoing influence of news about delivery trials and other tasks by drones [13,14]. While the drone delivery process requires the transmission of both personal information and goods, it is a new and rapidly evolving field of technology, so its corresponding targeted regulatory laws are comparatively lacking, while there is also concern that drone logistics activities will harm public safety, invade people's privacy, and result in other undesirable phenomena. In addition, the public is worried about the potential impact of drones on employment, which has led to opposition to the use of drones for daily express delivery work in some cities and nations [15]. Even for drone delivery, there is considerable opposition. The concept that the logistics sector intends to exploit this new kind of vehicle to widen its development route is not supported by this situation. Drone logistics is filling a void in the aviation logistics sector and is a crucial step in releasing the low-altitude field's resources to build a complete three-dimensional transportation network. The widespread promotion of drones, however, cannot be supported by the lower level of popular approval. It is critical to allay urban residents' current concerns about using new delivery tools and increase their acceptance of this effort if we want to launch extensive drone delivery trials soon or make future delivery missions using drones in cities the norm. A high percentage of residents living in cities with larger overall sizes and higher population densities have low acceptance of drones for delivery activities [16]. To more clearly explore the root causes of urban residents' concerns about drones for delivery, this study will take the residents of the Jinjiang District of Chengdu City, a city with a high degree of population modernization and a high density in China, as the research object. Based on the characteristics of empirical research, after combining the academic questionnaire survey on relevant topics for urban residents, the authors use statistical methods and systematic analysis means to analyze the data obtained, to determine the influencing factors and their inherent logical relationships that lead to the low acceptance of drones by current residents in the normalized distribution of the city, and to obtain the path of the management construction of the drones when they carry out the distribution operation in the urban area, to provide a certain theoretical solution for the management of drones when they are employed in normal distribution tasks in the future. --- Literature Review Unmanned aircraft technology, also known as UAV technology, is a broad term that encompasses unmanned aircraft systems, unmanned aircraft engineering, and other related applications [17,18]. UAV technology is widely employed in many different industries, including photography, surveying and mapping, and engineering operations. The application scenarios for UAV technology are now being expanded regularly. Drone operations, etc. have become a research direction in various industries and can be used in situations where people cannot reach or where labor costs are extremely high, effectively improving operational efficiency and reducing operational costs. To contribute to the realization of the normalization of urban drone delivery, the main scenario of this study is based on the analysis of the users' influence factors on the normalization of the use of drone delivery in the city. This study also examines the acceptance of the application of drone technology in logistics and distribution. Urban logistics mainly refers to the logistics that serve the city [19,20], realizing the flow, concentration, or dispersion of goods in the city, covering a variety of modes and system systems. Urban logistics emphasizes the point-to-point movement of commodities, which can be expressed in one of two ways: either by using logistics companies to express the form of realization or by hiring specialized personnel to express the directional movement of goods. There is another approach to implementing this type of logistics, though, and it makes use of drone technology. To support the promotion of the use of urban drone delivery technology, this study examines the intersection of urban logistics and drone delivery. The elements of the problem and their subfactors are examined in-depth from the perspective of residents' acceptance of drones in normalized urban delivery. The feeling that different types of customer needs have been met to a certain extent is referred to as consumer acceptance [21]. It will directly affect the development of the product or service. This study mainly focuses on users' acceptance of the normalization of urban drone delivery and analyzes the major factors influencing users' acceptance of the normalization of urban drone delivery. By studying these factors, we hope to encourage the normalization of urban drone delivery. Theoretically, the use of drones for cargo transportation can reduce logistics costs and carbon emissions compared to traditional transportation methods [22,23]. Some academics have focused their research on how to use intelligent algorithms to improve drone efficiency, reduce distribution costs, and reduce environmental impact. For example, Jeon et al. [24] used Mixed Integer Linear Programming and other heuristic algorithms to successfully reduce the number of empty flights of logistics UAVs in a logistics UAV test on Jeju Island, which in turn increased the UAV utilization rate. Hu et al. [25] discovered that using new logistics delivery methods with iterative heuristic algorithms could effectively increase the flight distance of drones in logistics processes during drone delivery experiments on the island. Choudhury et al. [26] proposed a phased approach to developing algorithms that shorten UAV flight time, save UAV flight miles through existing ground transportation networks, and thus improve UAV efficiency. Hassija et al. [27] increased UAV flight time through a cost-optimal UAV charging schedule algorithm, which in turn achieves increased UAV efficiency. These studies have theoretically proved the feasibility of using drones for material distribution, and its logistics optimization effect compared with the existing traditional distribution methods, has a higher distribution efficiency and can save more logistics costs. However, these conclusions are reached through experimental flights or simulations, if in the future the city regularizes drone courier delivery, there may be a deviation between theoretical and actual results due to the complexity and variability of the environment and the differences in the way of management of the drone distribution [12]. Given the characteristics of the current network structure of urban logistics and the awareness of the widespread use of drones by urban residents, some scholars have conducted a significant number of social surveys and trials to make the use of drones in urban logistics the norm as soon as possible in the future. However, they have discovered that the use of drones in urban logistics at this stage faces a significant number of challenges. Merkert [15] found that at this stage, urban Australians prefer postal delivery to drone delivery, unless it offers significant speed and cost advantages. In a study by Park et al. [27], it was found that drones were inefficient compared to other modes of transport when delivering to multiple destinations in the same area, and that only by effectively addressing this problem will it be possible to transform the means of delivery from cars to drones from an economic point of view for future drone urban delivery. Ren et al. [28] found that, in addition to the risks that drones may pose to residents for technical reasons, the loud noise generated by their rotating blades is off-putting to urban dwellers, and people are very concerned about the invasion of their privacy by videos taken by drone-based cameras. Grote et al. [29] found that a lack of regulation on the use of drones around the world may lead to further problems, which may make it difficult for people to accept the use of drones in logistics activities on a large scale if the problem is not well addressed. Kellermann et al. [30] claim that industrial drones may be camouflaged by unscrupulous elements and utilized for terrorist attacks and illegal activities, which will cause locals to be concerned about drones for daily deliveries to some level. According to the findings of these studies, to achieve the normalization of drone delivery, in addition to the need for further reform and innovation in drone technology, it is necessary to strengthen the management of drone applications, achieve increased drone efficiency from a management standpoint, and improve urban residents' acceptance of the widespread use of drones. Since drones cannot respond to emergencies promptly as human pilots can during flight, robust autonomous flight systems and safety control systems must be in place to ensure that drones can safely travel from takeoff to landing. At the present stage, the management of drones in countries all over the world is mostly limited to the restriction of the scope of drone activities , and the lack of effective management of drone application [31]. The lack of regulation has created great psychological concern about the use of this newfangled tool for social production. Cracknell AP [32] suggested that legislation on drone activities must be enacted as soon as possible to ensure that the lives and property of residents are not damaged by the massive use of drones. Menda et al. [33] argued that the operators of large drones for all types of industry must receive strict training and education and be informed of the relevant laws to avoid legal disputes and safety accidents arising from the work of professional drone operators. Khan et al. [34] analyzed the acceptance of drone delivery in Pakistan and found that residents of developing countries are concerned about the exposure of personal information in drone delivery, and the team called for the issue of privacy exposure to be effectively addressed in future drone operations. Sliusar et al. [35] argue that the current research on drone technology has far outstripped the research on drone management, that the management tools have failed to keep up with the technological upgrade, that more attention should be paid to the construction of the soft power of drones at this stage. This will allow for more targeted monitoring and legislation on the use of drones in such operations and maximize public acceptance of such operations. Lundin [36] pointed out that the use of drones to carry out operations should not be limited to the management of the aircraft, but should also take into account the nature of the current operations, operators, etc., to develop a comprehensive professional management program, which will enable more targeted supervision and legislation related to drone operations, to maximize the public's of the use of drones to carry out operations. In the research exploring how to use drones to make the distribution work more efficient, in addition to strengthening the way of technological upgrading, some scholars try to use comprehensive management tools to maximize the utilization rate of drone distribution. Gunaratne et al. [16], in their study on the distribution problem in lowand middle-income countries, found that utilizing a heterogeneous solution can be a more efficient way of accomplishing low-income country distribution tasks at the current stage than utilizing only drones for distribution. Kuru et al. [37] point out that the biggest economic problem with drones for distribution is that they are mostly empty during the return journey, which greatly wastes capacity, and suggest that cargo staging areas can be deployed in a scientifically optimized manner by region to reduce resource wastage due to empty loads. Perera et al. [38] proposed a new economic order lot model based on the nature of UAV work and the characteristics of local logistics warehouses, which can ensure that a certain number of UAVs can complete the regional distribution tasks within the specified working time. Goncharenko et al. [39] found through experiments that regularly carry out the necessary maintenance on mission UAVs, in addition to improving the service life of UAVs, can to a certain extent improve the efficiency of UAVs and reduce carbon emissions. Hossain et al. [40] found that, depending on the distance of the mission, using multi-stage UAV delivery has little impact on mission effectiveness but can significantly improve UAV usage time and result in cost savings. Currently, there have been some studies on the acceptance of drone usage in urban areas. This paper has collected the latest relevant research literature from the past five years and compiled it into Table 1. This body of literature demonstrates that much research is still being conducted on the topic of urban acceptance of the usage of drone logistics. Most of the literature only briefly describes the problems faced by urban drone delivery, generalizes the various factors affecting urban drone delivery, and tries to solve the problems by improving drone technology and optimizing drone delivery paths, and lacks analysis of the factors affecting the acceptance of urban drone delivery by residents as well as its inherent logical relationship, and there is no systematic and quantitative research. Based on these studies, this paper will investigate, analyze, and summarize further. It will first break down the major issues into five categories of research scope. Next, it will analyze the problem's constituent parts using survey data, determine the main issue factors based on an analysis of their significance, look into their intrinsic subfactors, and offer recommendations based on these subfactors. The study's identification of the management construction path can serve as a guide for policymakers as they develop policies, while also helping logistics providers prioritize their services to enhance customer satisfaction and minimize labor and resource waste. It will first break down the major issues into five categories of research scope. Next, it will analyze the problem's constituent parts using survey data, determine the main issue factors based on an analysis of their significance, look into their intrinsic subfactors, and offer recommendations based on these subfactors. The study's identification of the management construction path can serve as a guide for policymakers as they develop policies, while also helping logistics providers prioritize their services to enhance customer satisfaction and minimize labor and resource waste. --- Method --- Research Steps To shed light on the efficient management techniques that drones can adopt for urban delivery in the future and to comprehend the actual perceptions of urban residents towards this means of delivery at this stage, this paper will concentrate on the current acceptance of drone delivery activities by urban residents. First, based on the model paradigm, combined with relevant topic literature retrieval, research, and other empirical preliminary work, a set of scientific questionnaires that can effectively carry out statistical analysis of residents' acceptance was designed. After a large number of questionnaires were delivered to residents of target cities and effectively recovered, regression analysis of data was carried out using the binary logistic method. The factors that can effectively affect the current urban residents' acceptance of UAV express delivery activities were determined, and then the fuzzy interpretive structural model was used to deeply analyze the internal logical relationship of the subfactors of those factors related to the construction of UAV logistics. In addition, the impact of these factors on residents' acceptance from a deeper perspective was explored. This research lays a theoretical foundation for the final determination of the construction path of future urban drone delivery work. --- Current Analysis of Residents' Acceptance of Drones in Regular Urban Delivery In this paper, urban residents' acceptance of the normalization of drone delivery may be influenced by several factors mentioned earlier. However, ultimately, residents' evaluation of these factors will directly determine whether they accept the normalization of drone delivery. Therefore, we can regard this problem as a typical binary decision-making problem, i.e., the residents' attitudes may have only two endpoints: acceptance or nonacceptance. General studies frequently employ the Markov method, algebraic approach ordered binary decision diagrams, and other methods for analysis to address the binary decision problem. Given the design of the questionnaire and the volume of valid data obtained during the research for this work, using extremely complex methods for analysis may greatly increase the waste of mathematical power and make it impossible to achieve reliable conclusions. When paired with the binary logistic regression method, which can accurately predict whether an event will occur or not, and with comparatively simple calculation procedures, the final effective data volume of this study can meet the method's calculation volume requirements. Considering the complexity of the social phenomenon, this study also takes into account the various factors that may be connected to urban residents' current acceptance of the normalization of drone deliveries for express delivery. As a result, we may use the foundations of these two logics to create a model [45,46] that is generally quite self-consistent in logic, which will show the degree of influence of each factor on the acceptance more intuitively and provide a reference for subsequent in-depth analysis and scientific decision-making. --- Model Construction Based on logistic regression, a crucial instrument for probability estimation and classification prediction, binary logistic regression is a popular technique in statistical modeling analysis. It is frequently applied to forecast the likelihood of a "success-failure" occurrence. It is used to forecast categorically whether an event will occur or not on a "success-failure" issue. It is a technique that can aid with frequency variable prediction. It is a technique for forecasting the likelihood that a test taker will succeed or fail, or that they would respond to a question on the test with a yes or no answer. Numerous academic studies and business sectors, including marketing and analysis, investment analysis, financial risk analysis, etc., frequently employ this methodology. It is possible to make predictions with tiny sample sizes that are yet large enough to be studied efficiently by using binary logistic regression models to find the optimal parameters to fit the model. Compared to previous complex classification procedures, the solution is more effective, the model computes more quickly, and it allows for the evaluation of several elements' concurrent impacts. In the analysis of the study of urban residents' acceptance of drone delivery as the norm delivery method, the indicator of whether residents currently accept the use of drone delivery as the norm delivery method is set as the dependent variable, numbered D, under the properties of the binary logistic model [47,48]. D has a value of 1 if residents currently accept, and 0 if residents do not. The resulting binary logistic regression equation in this study is calculated as follows: LogitP = ln = β 0 + β 1 A 1 + β 2 A 2 + . . . + β n A n + ε In Equation , P is the probability that the current acceptance of routine delivery by drones by urban residents is acceptance, i.e., the probability of D = 1 occurrence. β 0 is the regression coefficient of the independent variable, β n is positive, indicating that the nth factor has a positive effect on acceptance, and β n is negative, indicating that the nth factor hurts acceptance. A n indicates the nth independent variable affecting acceptance and ε is the random error. Two basic assumptions are made for the model in terms of the nature of the dependent variable and the equations constructed: Hypothesis 1. Urban residents' acceptance of drone delivery routinization varies. Individual characteristics , monthly delivery volume, and other regularization factors are likely to influence whether residents choose to receive deliveries using drones in the future. Hypothesis 2. In this study, the main factors affecting the acceptance of residents range from individual characteristics of urban residents, habits of accessing couriers, evaluation of traditional courier delivery modes, knowledge of existing drone technology, and various perceptions of future drone technology. As a result of combining prior analysis and field research, the survey variables/ questionnaire design content of residents' opinions on drone delivery in urban areas in this study were identified, as indicated in Table 2. --- Data Sources In terms of the existing supporting conditions needed for drones to develop distribution activities in cities, large cities with a higher level of development and a larger population may have a better chance of adopting this technology to begin regular distribution activities sooner [49]. In terms of city layout and population distribution, Chengdu, China, has a well-developed infrastructure, a sizable city volume, a high population density, and a vast logistics network. In 2017, the first large-scale UAV feeder logistics transit project in China also landed in Chengdu. Therefore, this study chose to take the residents of Chengdu as the subject of the study. Given that urban residents in Chengdu may be more familiar with drone delivery-related activities than residents in other areas, and that the data obtained can more effectively reflect urban residents' attitudes toward accepting drone delivery, this study was conducted with urban residents in Jinjiang District, where drone delivery activities were carried out during the COVID-19 pandemic. After scientifically formulating the questionnaire for this study, the questionnaire was randomly distributed to residents of Jinjiang District, which is the most modernized district in Chengdu, and to residents of Taisheng Road, a community in Jinjiang District where drone delivery activities had been carried out, who went to the Qibao station to pick up goods during the peak period of the pickup period from 3 February to 7 February 2023, and the questionnaires were effectively collected as the raw data for the analysis of the residents' acceptance of drone delivery in the present study. It was used to identify the influencing factors related to the construction of drones with high impact. To maximize the validity of the questionnaire data, this study used offline distribution of the questionnaires and on-site collection of the questionnaires. Panelists met face-to-face with participants to answer as many concerns and questions as possible so that participants could accurately fill in the most desired option for each question. Considering that the sample size requirement of the binary logistic method is generally 10-15 times the number of independent variables [48], too much or too little data may cause bias in the analysis results, after consulting with statistical experts, the sample size required for this study was controlled by the team in the range of 200-300. In order to obtain valid questionnaires with 10-15 times the number of dependent variables and to ensure that the recovery rate of the questionnaires is above 80%, 50 questionnaires were distributed to each of the 5 sites in the test area, all questionnaires were filled out voluntarily and without any compensation by the site personnel, and 19 invalid questionnaires, such as those that were not filled out completely and those that were filled out with too many items were sorted out and sifted, and 231 valid questionnaires were returned . Furthermore, the data obtained could more accurately reflect urban residents' attitudes toward drone delivery of express delivery than those in regions that had not received related activities because the region had handled tasks relating to drone delivery of living materials during the prevention and control of the COVID-19 pandemic. In addition, the data analysis of the acceptance of regular drone delivery in the city, and the conclusions of the analysis of the binary logistic model are presented . --- Analysis of Intrinsic Subfactors of Factors That Have a Significant Impact on the Construction of Drone Logistics To better develop urban drone logistics management strategies, taking into account the subfactors that exist within each variable and the specific relationships between them, it is necessary to examine the logical relationships between these independent variables. The binary logistic analysis allows for visualizing which key independent variables have a significant impact on the dependent variable, but since the underlying model does not allow for any possible interactions between the respective variables, in this study, after identifying the pertinent subfactors, the fuzzy explanatory structural model approach [50,51] will be used to further analyze the subfactors inherent in the factors related to the construction of drone logistics after identifying the relevant subfactors. --- Model Construction The traditional Interpretative Structural Modeling Method , which was first proposed by John N. Warfield [52] in 1976 when he revealed the complexity problem, has now become one of the most widely used methods in system analysis after decades of intensive development. Traditional ISM is essentially a structural modeling technique that uses the mathematical logic underlying the existence of the research object. Through scientific topological operations on its conceptual system, traditional ISM eventually forms a highly streamlined and hierarchically directed topological diagram. The analyst can use the final topology diagram to determine the relevant order and overall focus of work in dealing with the existing problem of the research object and to find the optimal solution from a global perspective. However, the subjective judgment of the modeler may lead to inaccuracies [53,54]. It cannot, however, accurately indicate how strongly two objects are associated. The basic ISM lacks effective quantitative analysis to reflect the strength of the association between the objects; therefore, to address the issue of analyzing the strength of the association, it is necessary to further improve the basic ISM by the quantitative characteristics of ISM combined with other quantitative research methods, to further improve the model's accuracy, which may be hampered by subjective judgment. This study will combine the Delphi method to conduct thorough research and judgment on the influencing conditions, forming a fuzzy-ISM method to circumvent the result errors caused by individual subjective judgment errors as much as possible. The general procedure steps of this method are shown in Figure 1 to help explain how it works. Based on traditional ISM, the errors that may occur in the construction of a single evaluation adjacency matrix can be avoided through fuzzy mathematical processing of numerous evaluation data, and the basic idea is to utilize the precision unique to mathe- Based on traditional ISM, the errors that may occur in the construction of a single evaluation adjacency matrix can be avoided through fuzzy mathematical processing of numerous evaluation data, and the basic idea is to utilize the precision unique to mathematical means to quantitatively describe and model the fuzzy concepts, phenomena, and logical relationships that may exist in the research object. The fuzzy content is identified as an appropriate mathematical indicator to increase the quantitative nature of the research method. At this stage of research, the fuzzy mathematical method can be used for judgment, speculation, decision-making, evaluation, etc., and applies to the development of research in several fields. It is a method of effective integration of multiple viewpoints using mathematical logic, and in previous studies, the use of Fuzzy-ISM methods for effective research on decision-making in supply chain management and business management has been relatively mature [55,56], and the modeling idea of these studies is to build a fuzzy evaluation by synthesizing the correlation strength data viewpoints between many influencing factors of the research object, establishing a fuzzy evaluation, to get comprehensive evaluation data that combine multiple viewpoints in mathematical logic, and use this comprehensive data to scientifically analyze the research object to draw a final effective conclusion. This research is based on the theoretical steps of Fuzzy-ISM. Following the data collecting, processing, adjacency matrix, and reachable matrix solving processes, the final ISM is constructed, at which point the final logical relationships between the subfactors have been obtained and will be the basis for the conclusions of this study. --- Data Sources After reviewing the relevant literature and consulting with experts in drones and logistics, the team identified intrinsic subfactors for factors related to the construction of UAV logistics that have a large impact effect on the existence of the effect, then distributed the inter-factor interrelationship opinion request form to 21 professors of transportation and logistics related research directions at some universities located in Chengdu, on 10 February 2023, with complete instructions on the subfactor connotations and filling requirements. After the questionnaires were all retrieved validly on 17 February 2023, the analysis was carried out according to standard procedures, and the final ISM model was obtained . 3 displays an overview of the study's validly recovered data. According to the preliminary survey data, 81 respondents-representing 35.03 percent of the valid surveystemporarily reject the normalization of drone delivery in urban areas. This finding is consistent with the findings of previous studies [13,15,29], and the proportion of each component of other statistical indicators in the independent variable that are unrelated to drone delivery is also roughly in line with reality. According to the results of the statistical indicators related to drone delivery in the independent variables, the respondents generally believe that using drones for routine delivery tasks will cause many negative impacts. At the same time, a rather strange phenomenon emerged: the number of researchers who believed that drones could significantly improve the delivery environment but were more advantageous to the growth of the logistics industry was not obvious, specifically: 121 people, accounting for only 52.38% of the total survey, thought that delivery by drones could be accurately delivered to the designated location; 141 people, accounting for only 52.38% of the total survey, thought that delivery by drones could be accurately delivered to the designated location. This contradicts research and publications that claim drones can significantly help with the logistical "last mile" problem [3]. In the data analysis that follows, this study will also start a further scientific investigation into the origins of this occurrence. --- Descriptive Analysis --- Binary Logistic Conclusion Analysis In this study, the data obtained were used to conduct a binary logistic regression analysis using SPSS. The all-in method was used to analyze the factors influencing the current residents' acceptance of the normalization of drones in urban delivery, and the calculated results are shown in Table 3. With a Hosmer -Lemeshaw significance coefficient of 0.361 , a model chi-square value of 8.78, an Omnibus significance of less than 0.05, a model Cox-Snell R-squared value of 0.593, a Negoco R-squared value of 0.816, and a model -2 log-likelihood value of 91.642, the regression model corresponding to Table 4 is in a good fit state and can be used for the following analysis. From the regression results in Table 4, the factors with Sig. values less than 0.05 can significantly influence the acceptance of current residents, which are: whether they are exposed to drones in their life/work, the packaging specifications of products purchased online, the current delivery speed, the current delivery fee, whether they believe that delivery by drones will cause more safety problems, whether they are concerned that delivery by drones will not be able to deliver accurately to the designated location, whether they are concerned that delivery by drone will create more legal risks, whether the drone can be effectively regulated in the region where it is located, whether they mind the noise of drone flights, whether they think that the current drone delivery technology is immature, whether they think that drone delivery is conducive to protecting the environment, whether they think that the use of drone delivery will reduce the cost of logistics, and whether they think that the use of drone delivery will speed up the efficiency of delivery. According to the binary logistic model properties [50], if new methods can be explored to make residents' evaluation of the above factors improve in the future, this could theoretically lead to an increase in residents' acceptance of the normalization of drone delivery in cities. In the next section, based on the results of this part of the analysis, we will continue to carry out more in-depth research to determine the path that should be followed in the construction of the future management of drone courier delivery. --- Analysis of the Causes of Doubtful Statistics As discussed in the previous section, some of the data analyzed in the study from a proportional perspective led to conclusions that contradict the prevailing view in the existing literature and research that drones can significantly solve the logistics "last mile" problem. According to the research team, this occurrence might be directly tied to the surveyor's personal traits, courier habits, and assessment of current courier delivery. To determine whether there is any evidence to support the conjecture, this study will continue to use the three dubious values as the dependent variables and the nine factors relating to the surveyor's characteristics, the surveyor's courier habits, and the evaluation of current courier delivery as the independent variables. The distribution will also continue to be based on a binary logistic regression. The distribution of regression results for the three questionable value-derived models after the SPSS all-entry method is shown in Tables 567. Among them, the Hosmer-Lemeshaw significance coefficient for the regression model corresponding to Table 5 is 0.788 , the model chi-square value of 4.714, the Omnibus significance is less than 0.05, the model Cox-Snell R-square value of 0.089, Negoco R-square of 0.119, -2 log-likelihood value of 298.101. Table 6 corresponds to the regression model Hosmer-Lemeshaw The significance coefficient is 0.168 , the model chi-squared value is 11.636, the Omnibus significance is less than 0.05, and the model Cox-Snell R-squared value is 0.085, Negoelko R-squared is 0.113, and -2 log likelihood value is 299.201. Table 7 corresponds to the regression model Hosmer-Lemeshaw significance coefficient is 0.514 , the model chi-squared value of 7.211, the Omnibus significance is less than 0.05, the model Cox-Snell R-squared value of 0.155, Negoco R-squared of 0.211, -2 log-likelihood value of 269.894. From these data, these three derived models' data fit well, and consider that one can try to use these three derived models and related data to explain the causes of the strange phenomenon mentioned before. In the regression results in Table 5, the factors with Sig. values less than 0.05 were age, exposure to drones in life or work, and packaging specifications of products purchased online daily. The factors with Sig. values less than 0.05 in the regression results in Table 6 are age and whether life or work is exposed to drones. In the regression results in Table 7, the factors with Sig. values less than 0.05 are age, education, package size of daily online product purchases, and current delivery speed. Combining these three results, the two surveyors' evaluation factors of the current express delivery, namely the packaging specifications of daily online products and the current delivery speed, are influenced by consumer intentions, and the market environment, which are very difficult to change from the point of view of improving the logistics management methods of drones. The other influential factors of basic information about the surveyor have one thing in common: they all reflect the surveyor's experience with drones. According to the statistics, it does seem that the data is less suspect the more drone surveying expertise the surveyor has. It is expected that a significant portion of respondents is uninformed about recent advancements in drone technology, which accounts for the values' dubious reliability. Therefore, our team thinks that in the future, by stepping up efforts to educate the public about drone expertise and inform residents about drone activities, the misjudgment of residents about drone developments can be effectively improved. Our team also thinks that this outlier will vanish when survey respondents are very familiar with drone developments and drone activities. By using binary logistic model analysis, we were able to pinpoint the variables that directly influence how readily residents currently accept the normalization of drone delivery in urban areas. Theoretically, all that is required to increase residents' acceptance of the normalization of urban drone delivery is an improvement in their perception of these variables. To determine whether there is a deeper logical connection between these indicators, as well as to use scientific methods to determine the priority and focus of future UAV urban distribution construction. Subfactors for the underlying mechanisms of these factors were identified, and the results are shown in Figure 2 while these subfactors are numbered and succinctly described for the convenience of subsequent research . This was done based on the previous descriptive analysis, the team's prior research experience, and literature references [3,10,13,27,[57][58][59]. --- Data Processing As there may be some direct or indirect influence between the above subfactors, the fuzzy-ISM approach described in Section 3 can effectively determine the interrelationship between these subfactors. The Fuzzy-ISM established by multi-expert scoring can largely avoid the problems of over-subjectivity in individual evaluation; at the same time, the use of certain mathematical methods to combine the scores of multiple experts makes the constructed model highly accurate and logical, without the need to repeatedly adjust the final model as in the traditional ISM method [51]. The rating scale issued to the experts this time was divided into five options, indicating the extent to which a factor was evaluated against the comparison factors. After the rating scale was collected the evaluation text was converted into numerical scoring values and the criteria are shown in Table 9. A weighted average of the collected data was obtained based on the data characteristics and a primary matrix was generated using MATLAB as shown in Table 10, with the values in the table indicating the weighted average of the degree of influence that the corresponding vertical factor had on the horizontal factor. After obtaining the primary matrix, the ISM model properties and fuzzy mathematical principles are combined to find the correlation strength matrix, which is transformed into the following formula: C ij = C ij / where G ij is the i-th row and j-th column factor in the correlation strength matrix, C ij is the i-th row and j-th column factor in the initial matrix, C i. is the sum of the values of the i-th row factors in the initial matrix and C j. is the sum of the values of the j-th column factors in the initial matrix. The association strength matrix data generated using MATLAB is shown in Table 11. --- I11 --- Data Processing As there may be some direct or indirect influence between the above subfactors, t fuzzy-ISM approach described in Section 3 can effectively determine the interrelationsh between these subfactors. The Fuzzy-ISM established by multi-expert scoring can large avoid the problems of over-subjectivity in individual evaluation; at the same time, the u of certain mathematical methods to combine the scores of multiple experts makes the co structed model highly accurate and logical, without the need to repeatedly adjust the fin To facilitate the subsequent data analysis and ISM model-building work, after obtaining the correlation strength matrix by judging the correlation strength matrix value, the relationship between the set threshold value can be converted into the basic multi-order matrix model as shown in the traditional ISM. Through communication with experts and empirical judgment, the threshold value of 0.045 was chosen , and the formula for conversion to the adjacency matrix was: L ij = 1, G ij ≥0.045 0, G ij <0.045 where L ij is the value of the factor in row i and column j of the adjacency matrix. At this point, MATLAB was used to calculate the adjacency matrix for this study that could be used directly for subsequent ISM modeling: L =                                                               --- Building the Model Reachability Matrix Based on the properties of Boolean matrix operations on the adjacency matrix L and the unit matrix I to perform several power operations, when satisfied D = n = n+1 = n-1 to stop the calculation, at this time to find the reachable matrix D. In the numerical meaning of the reachable matrix, element 1 indicates that there is a strong logical relationship between the factors have reachable path; element 0 indicates that there is no strong logical connection between the two factors. Due to the complexity of the operation process and the large amount of data, MATLAB was used to program the calculation to ensure the accuracy of the results, and the reachable matrix of this study was obtained after four power operations. The hierarchy of the reachable matrix provides a more systematic and intuitive understanding of the logical relationships that exist between the subfactors. The set of subfactors influenced by Ii in the reachable matrix forms the reachable set P = , and the set of subfactors influencing Ii forms the prior set Q = ; the intersection of the reachable set and the prior set is performed, and the top subfactor is Ii when P = = P∩Q; a new reachable matrix can be formed by crossing out the row in which it is located; the above hierarchical decomposition steps can be repeated several times to divide the final model into layers and their corresponding subfactors. Repeating the above decomposition steps several times, the final model can be divided into different levels and their corresponding subfactors. The results of the hierarchical decomposition are shown in Table 12. The multi-level structure of the ISM is shown in Figure 3, which is based on the interactions between subfactors and other subfactors at each level. In addition, to further study the system, a multiplicative analysis of the number of subfactors influenced in the reachable matrix was performed to make a coordinate distribution of the subfactor cross-influence matrix multiplicative method , as shown in Figure 4. D =                                I 7 0 0 0 1 1 1 1 1 0 1 0 0 0 0 0 0 I 8 0 0 0 1 1 1 0 1 0 1 0 1 0 0 0 0 I 9 0 0 0 1 1 1 0 1 1 1 0 1 0 1 1 0 I 10 0 0 0 1 0 0 0 0 0 1 0 0 0 0 0 0 I 11 0 0 0 1 1 1 0 1 0 1 1 1 0 0 1 0 I 12 0 0 0 1 1 1 0 1 0 1 0 1 0 0 1 0 I 13 0 0 0 1 1 1 0 1 0 1 0 0 1 0 0 0 I 14 0 0 0 1 1 1 0 1 0 1 0 0 0 1 0 0 I 15 0 0 0 1 1 1 0 1 0 1 0 1 0 0 1 0 I 16 0 0 1 1 1 1 0 1 1 1 0 1 0 1 1 1                               4 --- Model Interpretation Based on the ISM analysis method [50], combined with the ISM multi-level concluded structure diagram and MICMAC coordinate diagram, the subfactors at the fourth and fifth levels possess strong drive and very low dependence, proving that these subfactors are the basis for building up the evaluation of urban residents' acceptance of the current normality of using drones for delivery, however, a single increase in the construction of this subfactor will not significantly increase the acceptance of drone delivery by the population in the future. To make the residents' acceptance reach a certain level, strict legal regulation, improved technology, precise determination of the delivery goods' characteristics, maintenance of the flying environment, and improved policy guidance must be established. From the position of these subfactors in the two figures, due to their low dependence on the influence of the underlying characteristics of the ISM [50], the level of construction of this part of the subfactor cannot be significantly re-enhanced in the case of the completion of a certain scale of construction, but these subfactors are the basis that constrains the formation of the acceptance of the residents and must be carefully implemented in any stage of the delivery carried out by the UAV, the only thing that can be considered in this part is to explore new methods to save construction costs while ensuring that the construction effect is not compromised. The subfactors located in the third tier are all in Zone III of the MICMAC coordinates and exhibit low dependence and low drive, proving that these subfactors are difficult to construct, but improving them is the most effective way to increase residents' acceptance of drones in urban delivery. The subfactors in this tier show the characteristics of expanding construction efforts but failing to enhance residents' acceptance more efficiently they are also the basis for the construction of the entire drone delivery activities. The construction of this tier of subfactors must be planned scientifically and rationally to ensure that the construction of this part of subfactors can achieve optimal cost performance. For this part of the subfactor, it is recommended that after scientific and effective planning, the construction should be focused on the initial stage of urban logistics construction, and in the future daily distribution work, it is only necessary to ensure that it can operate effectively under a certain scale. Among the subfactors in the first and second tiers, all of them are located in the MICMAC coordinate II area except for awareness education, which has a low-driven, high-dependence characteristic. The subfactor of publicity and education is located in the first tier but possesses low-driven and low-dependence characteristics, which is caused by the difficulty of short-term operation of this subfactor, the high investment, and slow effect [60], and also the characteristics of the MICMAC model further confirm the previous speculation on the causes of doubtful data, which require long-term construction to make the population aware that the use of drone delivery is effective. For other subfactors, it is required to build a lot after all basic activities and construction of UAV delivery are ready. How to control the cost, speed up the distribution speed, enhance the distribution area, and ensure the safety of the activity are considered in other studies as the primary problems of the current reform of the UAV distribution method [15,16]. For this part, this study argues that after all preparations for drone logistics activities are effectively completed, the focus should be on building the subfactors of these two levels, and only if the construction of these two subfactors can be effectively improved can the acceptance of drones in urban delivery by residents be significantly increased. --- Discussion Through the analysis in the earlier chapters, this study was able to identify the key variables that can have a significant influence on the current shifts in urban residents' acceptance of drone delivery and the logical relationships between the subfactors that exist between these variables. Concerning the results of these empirical analyses, effective suggestions for the future conduct of drone logistics construction can be provided for a series of management construction paths. From a general perspective, to improve residents' acceptance of drones for normalizing delivery activities in cities, focus on upgrading subfactors with high dependency characteristics based on completion of drone delivery construction, overall improvements must be made in terms of increasing publicity, improving delivery speed, reducing delivery fees, ensuring delivery safety, improving delivery accuracy, strengthening supervision, improving technology, and reducing noise, etc. However, considering that there are certain direct or indirect links between some of the constraints internally, to ensure the best results of future construction and management work, it is necessary to identify the intrinsic subfactors of these influencing factors and clarify their logical relationships, to determine the priority level of future work and the best practice for improving the acceptance of residents. As a result, through the empirical analysis in the previous section, for areas at different stages of construction, this study considers that two main types of work can be carried out. For countries or regions that have not yet started to build drone delivery systems and facilities: it is not urgent to immediately make this new type of activity acceptable to all residents but should formulate relevant promotion policies before construction, and plan for regulation, equipment, and task environment to ensure that future drone normalized delivery activities can be developed in an orderly and sustainable environment with sufficient hardware support at the time of delivery, to gradually improve the residents' acceptance of drones in the city's normalized delivery, we have made solid construction and preparation work. For countries or regions that already have some construction: Because of the special nature of drone logistics work, no country or region has yet been able to normalize drone express delivery, and all those in the pilot phase of drone delivery or short-term use of drones for special delivery activities are in this state of construction [61]. Through a large number of drone transportation experiments, this part of the world has gradually perfected the technical aspects of using drones for distribution and has theoretically confirmed the feasibility of using drones for distribution in the local area. According to the characteristics of this stage, this part of the region should focus on the test results back to the optimization of the operating environment, improve the current urban drone supervision and flying environment, and other aspects of improvement, to ensure that the future into the normal work phase can have good environmental support. The purpose of a large number of trials is to apply drones to daily delivery work as early as possible. The analysis of this study also points out that strengthening publicity and education, emergency plans, safety management level, improving delivery efficiency and logistics network area, and reducing delivery rates are the key practices to improve residents' acceptance of drones in the normalization of urban delivery. Meanwhile, the absolute low cost and absolute high efficiency have been confirmed in other studies as the main reasons why residents would choose to use drones for delivery. Safety issues arising from drone applications have also been identified as a key factor in residents' resistance to large numbers of drone operations [11][12][13][14]. In future in-depth experiments in areas at this stage, more surveys can be used to understand the real thoughts of residents in the test routes, to make timely improvements to existing problems and to supplement positive publicity, and to re-explore new methods and routes of transportation to reduce logistics rates and strengthen safety management, all of which can theoretically effectively improve the acceptance of residents. --- Conclusions The goal of this study was to investigate the fundamental causes of the low acceptability, to develop a focused and effective strategy to allay urban residents' existing fears about the use of drones for courier service, and to broaden public acceptance of this novel activity. A questionnaire survey of residents in Jinjiang District, Chengdu City, was conducted and a binary logistic model was used to identify the factors that can influence changes in residents' acceptance. The Fuzzy-ISM method was employed to find out the logical relationships between the subfactors inherent in these influencing factors. Significant factors affecting residents' acceptance of the normalization of urban drone delivery and the logical relationships between subfactors of these factors including publicity, delivery speed, and courier costs were found, and accordingly, the basic paths to improve the current acceptance of the normalization of urban drone delivery by residents were identified and continued to propose two management and construction ideas that should be carried out in response to the different levels of construction. This paper's relevance comes from its capacity to help governments decide what management policies should be implemented regarding drones, such as the need to develop and implement drone flight regulations and safety standards, to make sure that drone operations are coordinated with and safe for other air traffic and crowd activities, and to make sure that drone delivery activities are in line with the overall urban planning and sustainable development goals. This paper will also help relevant companies prioritize the enhancement of their logistical services, which can contribute to the early normalization of urban drone delivery activities. Although this study gives an executable management approach for UAV logistics construction under different construction states through empirical research methods, there are still some shortcomings in this study that need to be further improved in future research. First of all, due to time and manpower limitations on the part of the investigation team, the research for this paper is only based on one region, Jinjiang District. There is no investigation or research on other, more advanced regions with dense populations or other places of a similar nature, and there may be bias in the recommendations and policies made for those other regions. Second, this paper uses the Fuzzy-ISM method to determine the inter-logical relationships between the subfactors of the influence acceptance factors, but because some of the subfactors are subject to multiple influencing factors at the same time, this study has not yet found a suitable method to determine the strength of association between subfactors of the same level to determine the priority of the same level of implementation . We can expand current studies to solve the aforementioned flaws in future studies. To make the most use of time and resources, online questions can be introduced first. We advise performing comparative research at various levels in various regional and geographic contexts, such as comparing how well-liked employing drones for delivery is in urban vs. suburban locations. To achieve a more exact implementation path and guarantee that benefits are maximized, future research should pick more suitable methodologies to determine the strength of correlation between elements at the same level. Future research can explore the single factor for achieving the best effect of acceptance in depth separately and determine the actual improvement method. Institutional Review Board Statement: Ethical review and approval were waived for this study due to the fact that all the data used in this thesis were collected from the market by our research team, no other team from the university was involved, and the data is a shared market data from a non-research institution. Furthermore, our data is anonymized. Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. --- Data Availability Statement: Data sharing is not applicable. ---

The usage of drone delivery couriers has multiple benefits over conventional methods, and it is expected to play a big role in the development of urban intelligent logistics. Many courier companies are currently attempting to deliver express delivery using drones in the hopes that this new type of tool used for delivery tasks will become the norm as soon as possible. However, most urban residents are currently unwilling to accept the use of drones to deliver express delivery as normal. This study aims to find out the reasons for the low acceptance of the normalization of drone delivery by urban residents and formulate a more reasonable management plan for drone delivery so that the normalization of drone delivery can be realized as soon as possible. A research questionnaire was scientifically formulated which received effective feedback from 231 urban residents in Jinjiang District, Chengdu City. A binary logistic model was used to determine the factors that can significantly influence the acceptance of residents. In addition, the fuzzy interpretive structural model(Fuzzy-ISM) was used to find out the logical relationship between the subfactors inherent to these influencing factors. It was concluded that when the infrastructure is adequate, increasing public awareness and education, enhancing the emergency plan, lowering delivery costs, enhancing delivery efficiency and network coverage, and bolstering the level of safety management can significantly raise resident acceptance of unmanned aerial vehicle(UAV) delivery. Given the positional characteristics of the subfactors in the interpretive structural model(ISM) and matrices impacts croises-multiplication appliance classemen(MICMAC) in this study, we should first make sure that the drone delivery activities can be carried out in a safe and sustainable environment with all the necessary equipment, instead of focusing on increasing the residents' acceptance right away, in the future work of regularized drone urban delivery has not yet started the construction phase. There should be more effort put into building the links that will enable acceptance to be improved with higher efficiency, which will be helpful to the early realization of the normalization of drone urban delivery if there is already a certain construction foundation in the case where the drone delivery environment is up to standard and hardware conditions are abundant.

In contemporary Western Europe, popular attitudes towards established politics display a growing sense of cynicism and distrust. In recent elections in countries like France , the United Kingdom and the Netherlands , as well as in the European Parliament , anti-establishment parties have firmly installed themselves. The relative success of these parties reflects a broader trend of rising levels of distrust in established politics. These manifestations of political discontent cannot be fully understood with reference to the recent financial-economic crisis and the subsequent austerity policies. In fact, anti-establishment parties have been on the rise at least since the 1990s , and the debate on the decline in levels of trust in governments and politics finds its roots in the 1970s . To explain declining levels of trust, aggregate trust levels are generally related to historical processes and political or economic performance . In coming to terms with the origins of this apparent 'political disaffection' , however, the theories that have been formulated have not found empirical corroboration, especially when it comes to longitudinal changes. In a recent cross-national study, the hypothesis that trust levels vary with a country's economic performance, for instance, is rejected . At best, citizen's subjective evaluations of the economy matter . And since such 'objective factors' did not provide satisfactory answers, Van der Meer concludes, 'we should now attempt to understand the mechanisms of political trust at the micro-level through citizens' perceptions of the political system ' . This study makes such an attempt. More in particular, the aim of this study is to contribute to the understanding of how citizens turn away from established politics. We do so by focusing on the micro-level as suggested by Van der Meer. Taking an inductive approach, our research question is: How do citizens become politically discontented? --- Political discontents as deviant repertoires In the political-sociological tradition, political phenomena like nonvoting, support for antiestablishment parties and political distrust have been treated as 'exotic' phenomena in need of explanation. This can perhaps be understood through the fact that they appear to fit uneasily with dominant conceptions of representative liberal democracy and the role of established political parties therein. Nonparticipation in elections is, for instance, considered 'a major dilemma for representative democracy', of which the 'goal should be not just universal suffrage but universal or near-universal turnout' . Further, populist parties define themselves through their opposition to established political parties as well as by advocating radical change from those parties and politicians which are referred to as a 'corrupt elite' . Decreasing levels of trust in governments and political institutions have been interpreted as undermining democracy's stability . Almond and Verba's influential argument, for instance, holds that the stability of democracies relies on a combination of citizen activity and passivity and that this balance is only maintained if politics is 'mild ' and 'not intense' . As Vivien Hart notes: '[t]he assumption that the civic culture was the basis for stable democracy defined such criticism [political distrust, authors] from the public, accurate or not, as a destabilizing factor', rendering distrust 'misguided and anti-democratic'. In these academic accounts, political discontents are thus not merely considered exotic, but are also considered undesirable and deviant. This is indicated by the choice of terminology: political distrust has been described as a 'dysfunction of democracy' that threatens the governability of society . And while a more neutral approach is gaining ground , populism has been termed 'pathological' and 'not a promise continuous with one of the pillars of constitutional democracy, but [it] rather embodies a discontinuous degeneration of its democratic logic' . 1 Given this dominant perspective, it is not surprising that in much of the social-scientific literature these issues are not simply observed, but 'diagnosed'; they are consequently not merely phenomena in need of an explanation, but also in need of a 'remedy' . And with regard to nonvoting Putnam has taken this literally: 'Like a fever, electoral abstention is even more important as a sign of deeper trouble in the body politic than as a malady itself ' . Indeed, as Mudde ) argues when discussing radical right-wing populism, the dominant approach is to consider it 'a pathology . . . which has only limited support under normal consequences'. In sum, discontents towards established political parties and institutions have predominantly been interpreted as deviant phenomena -as aberrations of how things 'really' ought to be. The dominant explanations for widespread political discontents support this assumption that these are deviant social groups. It is claimed that those discontents can especially be found among the so-called 'losers of modernization' . Those 'losers' -conceptualized in terms of those with a weak labor-market position and low cultural capital -are said to suffer from feelings of confusion or resentment because of the consequences of globalization and are hence labeled as the disgruntled social bases of democracy's deviances . Lipset already argued that extremist movements appeal 'to the disgruntled and the psychologically homeless, to the personal failures, the socially isolated, the economically insecure, the uneducated, unsophisticated, and authoritarian personalities ' . And similar arguments have been made ever since, with an emphasis on the role modernization plays for the discontents among those social groups. In seeing these political discontents as cognitive errors resulting from an inability to deal with an increasingly complex modern society, this perspective shows its blind spot for the potential agency in how these people make sense of politics. The central tenet of this 'losers of modernization theory', in short, is that modern society's rapid developments produce insecurities among those who cannot adapt. --- 'Anti-establishment careers' The problem with both analyses -political discontents' supposed deviance and the alleged loserstatus of their social bases -is not that they depart from normative assumptions about citizenship and democracy, but mainly that they rely on an etic perspective on how these people turn away from established politics. This restricts the possibility of theory formation on how the thoughts and actions of the people that are generally considered politically deviant can be understood from their own respective positions . This is remarkable, particularly since the sociology of deviance has a long tradition of studies in which a micro-level perspective is found valuable to understand 'deviant behavior' without reproducing the associated labels. As Howard Becker contends: Discovering something that seems so bizarre and unintelligible that our only explanation is some form of 'They must be crazy' should alert us that we don't know enough about the behavior under study. It's better to assume that it makes some kind of sense and to look for the sense it makes. Deviance, from this perspective, may appear incomprehensible at first glance but becomes logical, intelligible and meaningful by taking into account the processes these individuals' 'deviant careers' go through. Such studies yielded valuable insights on how people develop these careers, and how they make sense of ideas, experiences and behaviors that are disqualified by dominant groups; it is 'an individual's movement through the deviant experience' . We expect that taking a similar approach is fruitful in uncovering how the 'political deviants' that this study focuses on came to reject established politics, and we therefore suggest to look for the sense this makes to them. Often relying on an inductive approach, this type of research focuses on individual biographies and the ways they are constructed. Not relying on statistical generalization, inductive research instead allows for inferences with regard to the necessary preconditions for a given type of behavior . Drawing from that tradition, we examine how Dutch citizens have become politically discontented. --- Recruiting respondents Becoming politically discontented is not something that happens in a fixed direction, i.e., not every person who turns away from established political parties will vote for a populist party. There are other options available as well. Rather than signifying very particular phenomena, political discontent is conceptualized here as a broad categorization that may encompass various manifestations of dissatisfaction with established politics. In doing so we follow Gamson, who was similarly concerned with phenomena like 'distrust, alienation, dissatisfaction, disaffection', which 'fall roughly under the rubric of "discontent" ' . To study the way ordinary citizens account for their disaffection with established politics means attending to the way they construct their motivations on their own terms. This makes it appropriate to utilize in-depth interviews. Since the aim of this study is to understand how discontented citizens have come to turn away from established politics, it makes sense to recruit respondents among categories of citizens that report the highest rates of distrust of politicians and political parties. A recent study by Statistics Netherlands reported that, analyzed by voting behavior, the highest levels of distrust of politics can be found among voters for Geert Wilders' right-wing populist Freedom Party and nonvoters. Therefore, we set out to recruit and conduct interviews with citizens who had either deliberately not voted in the elections, or had voted for the PVV. Respondents were recruited online or via intermediaries who heard of the research project and knew of potential respondents, and some respondents were recruited via snowball sampling. Our sample may thus represent the more outspoken part of the larger population of nonvoters and PVV voters. However, since it is exactly these people's reflections and ways of making sense of politics that will contribute to answering our research question, this is more an advantage than a limitation for this study. In total 18 respondents were interviewed, with interviews ranging in length from somewhat less than two to six hours. Two nonvoters are a couple and were interviewed together. Since one of the PVV-voting respondents and one of the nonvoters reported not to be discontented with established politics, these interviews have been left out of the present analysis. The interviews were loosely structured around respondents' voting motivations, their analyses of current political affairs, the role of the media and how they have changed their minds over these issues in the course of their lives. One part of the interview inquired into respondents' life histories. Here, the focus was on where they come from, how they grew up and what events, experiences or significant others had had a meaningful impact on them. This, in turn, allowed for the question of whether s/he has experienced any specific turning points . The majority of the interviews took place in respondents' homes, sometimes also with their partners or children present; their invitations to the first author to stay for dinner are indications of an atmosphere in which they felt free to speak their minds. A well-known problem of life history interviewing is that it is practically impossible to assess the truth of the respondents' accounts . 'Any person', Goffman notes on this, 'constructs an image of his life course -past, present and future -which selects, abstracts, and distorts in such a way as to provide him with a view of himself that he can usefully expound in current situations ' . Apart from that, respondents may choose to not talk about certain episodes of their lives, either with or without notifying the researcher. This problem also affects this study, but not as much as it does for historical research that aims to unravel fact from fiction. The purpose of the life histories in this study, after all, is to understand the meaning of politics for the respondent as well as their accounts of the changes therein, not to find out whether certain biographical events actually happened the way s/he reports. The interviews were conducted by the first author between September 2012 and January 2013. --- Becoming discontented To understand how our respondents came to reject established politics, we have reconstructed that process during the interviews. Their narratives are, of course, very diverse, both in content and in the time span they cover. Nevertheless, it is possible to analytically distinguish three ideal typical stages, through which these respondents 'progress' in what may be called their antiestablishment careers. The stages introduction, validation and consolidation structure the following sections and demonstrate that the process of becoming politically discontented involves a gradual shift in individuals' conceptions of politics. In this study we approach our sample of respondents as a diverse group of discontented citizens in whom we identify a general pattern of turning away from established politics. Even though the specific ways in which our respondents have become introduced into their particular anti-establishment narratives vary, these differences are classified as part of the first step of their anti-establishment careers. The analysis furthermore demonstrates some differences between PVV voters and nonvoters, but a systematic analysis of those differences is not the focus of the present article. 2 This approach resembles a 'social pattern analysis' ), in the sense that we disregard the specific content in favor of the general pattern. 3 --- Anti-establishment 101: Introduction The introduction stage is the stage in which individuals are first persuaded by, or generate themselves, objections to the then-current political situation. On the basis of our interviews, we distinguish three ways in which people are introduced to such ideas. These are meant as empirical illustrations of the more general introductory stage through which our respondents acquired their anti-establishment perspectives, rather than as an exhaustive list. First of all, some people were introduced into their anti-establishment careers by a 'political entrepreneur'. Among our respondents, this entrepreneur was the late populist politician Pim Fortuyn. 4 Maria , 5 for instance, states that 'Pim Fortuyn has made me politically more conscious'. And Carola , who is now an active follower and volunteer for the PVV, states that before Fortuyn took the stage, she had never even been interested in political affairs: I have to admit that I've never really been concerned with politics, it was kind of far off for me. That kind of fired up in the period with Pim. Nowadays, PVV meetings and all that, I visit them all. Volunteering with handing out flyers, I'm more engaged than I've ever been. I wasn't like that at all before Pim, I didn't even vote before that. Speaking of politics having been 'far off' and of Fortuyn as having brought 'consciousness', their introductions are like religious conversions or 'awakenings' more generally. Those who report on the pivotal influence of Fortuyn indicate that he has provided them with a wholly new perspective: in the period before, they did not vote and were not even politically interested. Willem also describes his introduction by referring to Fortuyn and particularly to the accuracy of the title of his most-read book: 'eight years of Purple was a big mess indeed, he was right about that. Because I didn't go out to vote in those years. Pim made me go back to vote again.' From a general lack of interest in politics, these respondents report that Fortuyn and, in his wake, Geert Wilders, have brought politics into focus for them through these politicians' abilities to address issues established parties had left unattended, using everyday discourse that ordinary people can understand. In other cases, however, respondents' 'awakenings' with regard to Dutch politics are not so much mobilized by a populist politician but through books or websites. These are individuals who were already interested in politics. Just three months before our interview, Mark , for instance, came across an awareness-raising website that 'uncovers' conspiracies in politics, business life and much more. He calls himself a socialist and has been active for the Labor and for the Socialist parties, but from this website he learned that political deals are already made at the Bilderberg conference and that such secret societies -as opposed to national parliament -are the ones who are really in power. This profoundly changed his view on politics and society: I don't exactly remember how I ended up on [the website] with all those articles. Then you go through all that and you read the comments and the reactions and you go further and further until you come to the conclusion that it would be outrageous to go out to vote! Wouldn't you be kidding yourself? That's the reason I didn't vote. . . . The people are being cheated before their eyes! Another respondent, Ben , had been a pastor all his life when, more than a decade ago, he read a book that fundamentally altered his view on Christianity. It was about the history of the Jewish people and Ben recounts that 'you don't finish that book dryeyed'. After reading it Ben became convinced that Christianity is more linked to Judaism than most Christians acknowledge. At about the same time, he was confronted with the fact that a mosque was being built in his home town, after which he found out 'how wrong Islam is'. This was how he began to reorient his position in relation to politics. A third category of respondents do not refer to insights received from politicians or media, but instead report that they began to ask fundamental existential questions about their lives, their worldviews and reality in general . These questions led them to a personal quest for answers. Judith , for instance, says she consciously rejected her Catholic beliefs after she experienced a 'hot summer in which I questioned everything' at the age of 24. From this summer, she 'came out as an atheist and an anarchist'. This notion of 'questioning everything' appears to be indicative of such a search, because other respondents mention similar experiences. Henry had a successful career, two cars and a happy marriage, until about 13 years ago, when he decided to throw the switch. Answering the question why he gave all that up, he says: What Henry describes is a sense of uneasiness with his life at that time. He decided, as he puts it, not to conform to expectations anymore and to only do things he felt good about, and those things turned out to be very different from the things he did before: 'I was able to associate with wholly different people.' Henry gave up his job and marriage for a better connection with his senses and emotions and could subsequently identify with the way Pim Fortuyn 'combined emotional intelligence with intellectual intelligence'. This resonated strongly with how he himself was changing his perspective, comparing the experience of Fortuyn's political entry as 'switching from a silent movie to color TV'. Whereas Judith and Henry experienced a sense of existential unease with their personal lives, others report a similar feeling, but in response to societal events. The emerging financial crisis around 2007 made Gerard ask himself some fundamental questions: 'There's a crisis and you get stuck in your usual way of thinking, because what you're experiencing doesn't make sense anymore. That's how you get an incentive to look at things differently.' When he started looking at things in that other way, he asked himself, 'why is it that politics is unable to establish the outcome it promises?' In the process of rejecting established politics, something obviously has to happen in order for people to start changing their minds. Our respondents were mobilized or transformed, or started an investigation for 'the real truth'. --- 'Things that are known cannot be unknown': Validating insights Having been introduced to their new insights, respondents delve into a world of new knowledge: they report immersing themselves in the available literature, Internet communities and other available resources. Though interrelated in practice, this process involves investigations, associating with likeminded people and learning, through their own or vicarious experience, about the role of political parties, media and other institutions. When it comes to respondents' efforts to expand their knowledge on their respective subject matters, Fortuynists mention reading the books that Pim and related Islam-critical authors published. Pastor Ben , who had learnt that religious institutions had distorted true faith, started reading the Bible in a different way, focused on practicing his faith in 'congregations as in [the Bible book of] Acts . . . cut off from all ecclesiastical misconceptions and deceptions'. During these investigations, respondents argue, they expanded their insights in depth and in breadth. They for instance not only come to recognize the exact ways in which established political parties and global elites are manipulating the people but they also learn, in a much more fundamental sense, that other institutions like the media, science and corporations are not neutral. As Chris aptly illustrates this part of his ongoing investigation: 'that's when you find out that the media are in the hands of those same main shareholders as the oil industry, the pharmaceuticals, you name it'. Wouter , after specifically studying the relation between Islam and Christianity, now firmly disagrees with 'the political conviction that Islam and Christianity are the same'. Scientific research, he argues, shows this is not the case. In 2008 Judith joined the Occupy movement, setting up her own local chapter with likeminded people. In their 'Occupy College', they invited speakers and did their own research and presentations. She generated many new insights on the neoliberal system, banking practices and the election law, which all validated her earlier rejection of party politics: 'in hindsight there are certain things I wouldn't have wanted to know, but things that are known cannot be unknown'. But she also learned about alternative systems, like sociocracy -a nonhierarchical system of self-government. Therefore, in this process respondents often turn from a specific political distrust towards a more generalized distrust that involves various institutions like media, education and capitalism. Dennis , a truck driver, mentions that he has even taken more than a year off to do research and he further explains how his fields of interest have expanded: 'Indeed, nutrition, technology, society, politics, it goes in many directions'. Respondents also started to associate with likeminded people on social media, in forums and meetings. When Ron became moved by Pim Fortuyn's appeals to bring back 'human proportions' into society, he volunteered for the campaign. He says that his and all other volunteers' enthusiasm for the campaign even intensified after the murder of Fortuyn: 'I have rarely witnessed such feelings of togetherness in the Netherlands'. Mark also found likeminded people on the website that 'opened his eyes'. In their online discussions, Mark and his newfound friends developed the idea of laminating their voting passes in plastic foil, rendering them invalid. During the interview he proudly presented his as a piece of nonvoting memorabilia. And after she first attended a PVV meeting, Carola started blogs on which she posted news on Wilders as well as ridiculing photos on Islam. In reaction, she started to receive threats. But this did not stop her: 'actually, it made me even more fanatic, because if you can't even post a little picture . . .'. These associations, both on-and offline, thus not only facilitate a sense of belonging , but also a form of 'affective mobilization' -a dynamic in which associating with likeminded others online furthers participants' enthusiasm . Through their investigations and their associations, respondents come to realize that the established political and media institutions are unresponsive to their concerns and therefore appear to be part of the problem, instead of the solution. The gap between them and these mainstream institutions gradually widens: they are becoming 'outsiders' . This becomes particularly apparent when they want to raise awareness for their concerns. In his aim to raise awareness about the threat Islam poses for western civilization, Wouter has had meetings with a Christian political party to organize a lecture by an Islam critic, but argues that 'they don't want to hear about it' and attributes that stance to their 'political correctness'. Respondents' contacts with the media were experienced as similarly disappointing. When Henry organized an event with international speakers that attracted quite some media attention, he learned that the role of the media consists of selection and manipulation: 'if you realize, of all the interviews I did back then, of all the footage that was shot, how much of that remained and how it was presented'. Judith has had similar experiences with what she calls the 'destructive role of the media'. Arguing that Occupy is much more than a protest movement, she says the media are not interested in the solutions they put forward, only in the size of the movement: Very concrete solutions have been proposed, but they are constantly ignored in the media. . . . I've talked to so many journalists who asked about that. [asking] Why don't you ask about what we're doing? [The journalist:] Yeah, but how many of you are there? Ben has contacted both public and commercial news media because of their 'outrageously one-sided' coverage on Israel. Not receiving a response, his interpretation is that . . . the mainstream media are in such a way controlled by the powerful, the financially powerful, that they're working towards that new world order in which everyone has to get along, because that's easier to control. Ben gained these insights in the decade since his 'turning point': 'I have always thought that what media publish in newspapers and on the radio is true. Well, in the past 10 years I have increasingly found out that they are also very able to lie.' The way mainstream politics and media deal with the problems pointed out by the respondents makes them conclude that they are 'either super naïve or just unwilling to see' , or there is a general problem of 'retardation' , which he considers the result of the media's profitdriven tendency to lower their intellectual standards to mass demand. Summarizing the validation stage, our respondents have further developed their newly acquired perspectives through investigations, associations and experiences. These validate their critical worldview and further propel their turning away from established politics. They come to realize 'that the institutions themselves may be the source of bias, and "throwing the rascals out" will have little effect if indeed it is even possible' . As Judith aptly concluded: 'Okay, that does it. Politics isn't the proper way to go, even if the manifesto says more or less the same things [as I think]. Then it still isn't the proper way.' --- 'Then I thought, now I know': Consolidating a new worldview In a recent discussion on the concept of careers Martiniello andRea note that 'experience learned over time by the actor reorients his or her plans and the goals he or she pursues'. Indeed, our respondents' introduction to, and subsequent validation of their new perspectives on the workings of politics and society, culminates in them drawing conclusions from the lessons they have learned. First of all, respondents argue that they have become very cautious in how they consume and interpret news from mainstream media outlets like television and newspapers. They have learned that -depending on their orientation -mainstream media is either leftist, governed by the power elite or only interested in making money at the cost of quality. Information in general, and news reports in particular, they have discovered, should therefore be treated with suspicion. Most of our respondents consequently report having developed strategies through which they assess the veracity of new information. These strategies however take on different shapes. Some employ the relatively uncomplicated strategy of taking into account the 'ideological color' of news producers. Willem , for instance, says he balances his news intake between the two popular newspapers Algemeen Dagblad and De Telegraaf, because 'to know the truth, you have to read both papers'. Ron has developed a more elaborate triangulation tactic. In evaluating news items, he considers: Who is writing it, which newspaper, which journalist? Once you know that, you know who's talking. Then you look at their antagonist and if the two reports roughly correspond, you can assume it's a new fact. That's a way of collecting objective information. Other respondents, however, have rejected mainstream media altogether. Annemieke says that 'we hardly watch television anymore. For us, it's just no fun anymore when we turn on the TV!' Judith similarly notes she has 'thrown the television out' because 'the kids were fed up with me commenting on every other item and the way it was depicted'. In the consolidation of a new perspective, not only the present takes on new meanings, but the past may be reinterpreted as well. Not unlike a religious conversion, 6 respondents shed new light on pre-'conversion' events and experiences; and some radically reinterpret them by explicitly constructing 'then I thought . . . but now I know' narratives . When asked whether his contention that politicians are only interested in party politics and their careers instead of solving problems only applies to present-day politics, Arthur argues that 'not much has changed, it has always been like this', 'I've seen my share of cabinets . . . it's all about power and I have the feeling I see through that a bit better than I used to do'. Daan also recounts how Pim Fortuyn's books have provided him with a frame of reference, enabling him to understand the subordinate role women had in the households of his former Moroccan However, not all respondents claim they look at the past from a wholly different perspective. Some narrate their pasts by claiming that they had always thought about things the way they currently do. They stress the continuity between the past and the present , tracing current dispositions back to traits they claim they already had in their childhoods. Chris says that as a child he 'was always asking "why this? Why that?" ' When his teacher was unable to provide the answers, he 'was already confronted with the fact that there are a lot of questions that remain unanswered'. Gerard also recounts his school life by emphasizing he has always been somewhat against the grain: 'I just couldn't help but question things and that wasn't always appreciated'. Similarly, Wouter says he has thought about Islam the way he does for as long as he can remember. On his way to secondary school he saw a mosque being built and 'had a feeling saying hey, this is not right [and] of "Islam is not a religion, but a political ideology"'. With their accounts of their relatively recent changes of perspective, these respondents -by pointing to traits they had as a child -construct a narrative of continuity between their present and past selves. Whether this continuity is 'really' there is practically impossible to ascertain, and for the present purposes it is also not relevant. Addressing these different narratives of self-change, people construct their biographies in 'accordance with the new or ascendant universe of discourse and its attendant grammar and vocabulary of motives' . Tom DeGloma's awakening narrative formula analytically outlined two 'vocabularies of liminality' of the ways in which people narrate their trajectories to an 'enlightened understanding' : either via a sudden epiphany experience, or through a more stepwise process. But this formula does not explain the use of one or the other vocabulary. Erin Johnston identified a rhetoric of continuity among converts to paganism and she theorizes that in order to understand the differences in narratives with which people construct their biographies, these should be related to their current beliefs and practices. This is informative in explaining the different 'introductions' we have identified. In our study sudden awakening narratives were employed by those who said to have played a relatively passive role in their reported self-change , while the more gradual continuity narrative was used by those who reported change through their own, selfinitiated investigations. --- Conclusion The rising salience of political discontents in western societies, as demonstrated by the rise of anti-establishment parties, nonvoting and political distrust, has been firmly established in the literature. A dominant interpretation holds that such discontents are pathological phenomena in need of repair that can especially be found among the 'losers of modernization' who are allegedly unable to adapt to the rapid economic and cultural changes in modern societies. Starting from this argument, we set out to assess how those political deviants -selected among nonvoters and PVV supporters -came to reject established politics. Our analysis demonstrates that our respondents' political discontent is the result of a process in which their conceptions of politics gradually changed -an anti-establishment career. We distinguished three analytical stages in that process -introduction, validation and consolidation -through which this change took place. Employing these three stages, we can thus assert that people who have rejected established politics have -more or less activelygenerated objections to the political establishment; have further developed these insights in depth and breadth through a combination of their own investigations, associations and experiences with establishment institutions; and have consolidated their insights by implementing changes in their media consumption patterns as well as in their respective interpretations of past experiences. All in all, this process involves a profound change of their ideas on, and subsequent evaluation of, the workings of politics and society. --- Discussion Fueled by the fact that discontented citizens' meanings and motivations are generally neglected, presuming less agency than they claim themselves, our findings give occasion for two interrelated conclusions that contribute to the debate on political discontents in the contemporary West. First of all, the passive conception of the discontented citizen disregards the fact that, as our 'validation stage' has demonstrated, these people have given form to their current conceptions of politics through their own investigations and experiences. From this perspective, then, they are not so much objects of abstract economic forces than they are reflexive citizens who make their own conscious decisions. The dominant macro-level perspective on political discontents with which the levels of political trust are studied has an inherent blind spot for such meaningful changes in people's stance towards politics. Not seldom informing 'cures' for political distrust, such an approach appears to be based on the assumption that these discontents are ephemeral and caused by feelings of insecurity or ignorance, making them easy targets for manipulation through policy interventions. Second, yet related to this, is the fact that our respondents narrate their 'career paths' as an awakening, while an analysis of politically discontented citizens as 'democracy's deviants' typically assumes its opposite. Their newly acquired insights were experienced as utterly meaningful or even enlightening -a path out of political apathy, as some noted -and many of them addressed their issues in public or towards institutions . In fact, in spite of the system's unresponsiveness to their claims, many continued to pursue their political ideals. In this effort, they practiced -albeit outside the mainstream -in large part the critical reflexivity that is generally thought to be essential for democratic citizenship. Whether conceived of as a sense of involvement in political issues, contacting politicians and institutions or as discussions with family and neighbors , these citizens practice the virtues of democratic civic participation, instead of opting out of it: their political consciousness was addressed and raised, they became interested, engaged and associated. 7 Whether -and if so, how -this three-stage model holds for other manifestations of change in political convictions, is a question for future research. We would however suggest that it particularly pertains to adherents of those ideologies that construct objections to the status quo and may therefore come to disqualify mainstream society, like, for example, anti-capitalism, feminism, anti-colonialism and radical Islamism. 8 Not attending to the meanings of these people impairs instead of facilitates possibilities for theoretical progress as well as for advancing policy interventions: 'If social research imposes definitions on subjects regardless of the meaning that their conduct has to them', Katz contends, 'it will risk perpetuating artificial stereotypes and supporting power relations ill-suited to effective policy making.' This therefore calls for a cultural sociological sensitivity in the conceptualization of citizens' political behavior. It is after all not through its deviance from a -ultimately arbitrary -hegemonic standard that social action should be described, but through the meanings it has for the participants in social life . Concepts such as disengagement, nonparticipation and demobilization may at first sight be accurate descriptions of declining political trust or nonvoting. However, when considering the respective citizens' own meanings of their actions, the terminology may just as well be reversed: mobilization when describing nonvoting or engagement when losing trust. Hence, such terms tend to refer to some institutionalized, hegemonic frame of reference that may, but also may not, have meaning for those concerned. --- Funding We wish to thank the Erasmus Trustfonds of Erasmus University Rotterdam for awarding the first author a travel grant that enabled presentation of the article at the 2015 Annual Meeting of the Eastern Sociological Society in New York, USA.

Popular political discontent has become increasingly salient in western countries in recent decades, as can be witnessed by the rise of populist anti-establishment parties, nonvoting and increasing distrust in politics. However, these phenomena have predominantly been treated as 'democracy's deviants', neglecting the perspectives of the people concerned. Taking an inductive approach, this article examines how ordinary citizens come to turn away from established politics. Drawing on in-depth interviews with politically discontented Dutch nonvoters and PVV voters, the article develops a three-stage 'anti-establishment career' -'introduction', 'validation' and 'consolidation' -through which their conceptions of politics gradually change. This deviant career model takes into account the dynamics and agency involved in the process, in contrast to conceptions of discontented citizens as utterly passive and anomic. The article concludes by arguing for more cultural-sociological sensitivity in the use of concepts referring to social-political action.

SYSTEMATIC REVIEWS --- Implications Practice: Mobile health interventions are an acceptable and potentially effective means to address the HIV prevention and treatment needs of gay, bisexual, and other men who have sex with men. Policy: Policy makers should consider mHealth HIV prevention and treatment options as an avenue to decrease HIV incidence and increase care among gay, bisexual, and other men who have sex with men. Research: Future research should assess the efficacy and mechanisms of mHealth interventions for HIV prevention and treatment among gay, bisexual, and other men who have sex with men. --- INTRODUCTION Gay, bisexual, and other men who have sex with men are disproportionately burdened by HIV [1,2]. Global increases in anti-gay legislation hinder human rights protections for GBMSM vulnerable to HIV and the global roll-out of pre-exposure prophylaxis for HIV prevention is slow [3]. HIVrelated disparities among GBMSM persist around the world, as high HIV prevalence among GBMSM exists in places as diverse as the Caribbean, Western and Central Europe, Thailand, parts of China, and several countries in Africa [1,2]. In the USA, data from the Centers for Disease Control and Prevention indicates that 70% of new diagnoses in 2017 were attributable to male-male sexual contact [4]. Further, sizeable proportions of GBMSM fall out of care along the HIV treatment continuum ], viral suppression) in the USA and other regions of the globe, including Central and Western Europe, Eastern Europe and Asia, and Africa [5,6]. Accordingly, adult GBMSM are the focus of special prevention efforts, including multiple, tailored HIV prevention interventions [7,8]. However, despite efforts at developing interventions tailored to both the unique health risks and culture of GBMSM, stable rates of HIV infection in this vulnerable population indicate prevention efforts are lagging [2,4,6]. The Internet and the HIV epidemic have long been intertwined among GBMSM, given early Internet adoption among GBMSM to seek sexual partners and find sexual health education [9]. For these reasons, researchers have tried to leverage technology to develop more effective HIV prevention [10][11][12][13]. Technologies offer platforms with incredible potential to reach and intervene with GBMSM. Technologybased interventions can increase accessibility, convenience, and privacy for vulnerable individuals, like GBMSM, leading to rapidly scalable prevention tools [12]. The international ubiquity of technology use is an added advantage [14][15][16]. However, the constantly evolving nature of the technology presents unique challenges for developing effective and acceptable technology-delivered interventions [17]. In recent years, mobile-based technologies, such as applications and text messaging, have exploded in popularity as a means of addressing health behaviors. Mobile technology has improved and proliferated within the USA and globally. Among countries with advanced economies , approximately 94% of adults own a mobile phone and 76% own a smartphone [18]. Further, even among countries with emerging economies , cellphone and smartphone ownership is growing rapidly, with approximately 83% of adults owning a mobile phone and 45% owning a smartphone [18]. As the spread of mobile technologies has increased substantially in the past decade, interest in the potential of technological interventions using mobile technology for health behavior change has correspondingly grown [17][18][19][20][21][22]. mHealth interventions have been developed for increasing physical activity, monitoring weight management, and medication adherence, among other health behavior concerns [23,24]. These interventions use mobile technology to intervene on behavior in real-time during high-opportunity moments or repeatedly in individuals' daily lives to increase the likelihood of behavior change. Many of these same mHealth strategies can be applied to behavioral targets in HIV treatment and prevention interventions [25][26][27]. Despite increasing interest and emerging HIVrelated mHealth intervention research, efforts to document the state of the science of mHealth approaches for GBMSM to prevent and treat HIV are few. Prior reviews are limited in several critical ways. Several focus generally on HIV treatment and prevention, rather than on specific populations at risk , limiting deeper discussion of how to tailor these types of mHealth interventions to GBMSM [11,[25][26][27][28][29]. Additionally, several combine various types of technological interventions , such as computer-based, along with mobile technology-delivered, without a specific focus on mHealth [11,25,27,29,30]. Others focus strictly on HIV prevention, without including interventions focused on improving HIV treatment [12,13,30]. Altogether, this creates several key gaps within the literature on mHealth interventions for the purpose of reducing risk of HIV via treatment or prevention among GBMSM. A review that adequately addresses these issues will identify the advances the field has made thus far, the stage of development of this science, and highlight remaining challenges. Thus, the purpose of the current paper is to systematically review the state of the science of mHealth interventions designed for GBMSM to enhance HIV treatment and prevention behaviors. These search terms were co-developed, piloted, and refined with a university librarian, then implemented in each of the three databases to identify the relevant published literature across diverse academic disciplines . The review identified a more advanced state of mHealth research with GBMSM compared to the other key populations and our protocol was amended to review mHealth interventions with GBMSM separately. Search protocol details are registered at . In brief, results from all three databases were deduplicated. Of the 1,636 total results, 881 unique titles and abstracts were screened, 142 focused on mHealth, HIV prevention or treatment, and GBMSM. The review team met weekly to discuss the inclusion and exclusion of each unique title, and consensus was used to clarify any coding discrepancies. This process resulted in 142 articles that were included in a full-text review . --- METHODS --- Search --- Eligibility Articles were included in the current review if they met the following eligibility criteria: published in a peer-reviewed journal before July 1, 2019, published in English, reported the primary results of an intervention, had primary outcomes that were an HIV prevention or treatment behavior , used mHealth to deliver the intervention , and enrolled exclusively cisgender GBMSM. We focus on studies of cisgender GBMSM because transgender and non-binary populations have unique interventions needs and tailoring interventions to those needs is likely to be more effective [31]. --- Data collection and synthesis Research assistants were trained in the coding scheme and supervised by research team members . This included weekly code review by the second author and a final code review by the first author to ensure coding agreement. Interrater reliability among coders was established using seven articles that were double-coded by research assistants. Interrater reliability was excellent, as evaluated by kappa . Data codes included study design reflecting the rigor of the intervention and potential risk of bias in published results, study characteristics , type of mHealth technology used, and HIV prevention and treatment behavioral targets. Results were descriptively summarized and compared by study design. The Cochrane Risk of Bias Tool for randomized controlled trials [32] was used to assess the methodologic rigor and risk of bias of the four pilot RCTs [33][34][35][36] and one fully powered RCT [37]. This tool highlights seven areas of bias, each rated as low, high, or unclear risk of bias. The areas include random sequence generation ; allocation concealment ; selective reporting ; blinding of participants and personnel ; blinding of outcome assessors ; incomplete outcome data ; or any other area of bias introduced by the study procedures. We chose not to formally evaluate bias in the single-arm pilot studies [38][39][40][41][42][43][44] and the public health campaigns with postassessment [45][46][47][48] because non-randomized intervention studies are inherently biased and would not benefit from bias analysis [49]. --- RESULTS --- Overview of included versus excluded articles We identified 1,636 articles through database searches . After removing duplicates, the first and second authors screened an initial group of 881 articles based on the title and abstract. Of those articles, 739 were excluded. Ineligible articles were typically excluded due to not testing interventions. For the remaining 142 articles, eligibility was assessed through a review of the full-text article. We resolved discrepancies through discussion among the first and second authors. This process resulted in the inclusion of 16 articles. The studies collectively report on the results of interventions with 20,922 participants. --- Included studies The 16 included studies were published in 2012-2019. Fifteen distinct interventions were tested. Most of the studies occurred in the USA . The remaining five were conducted in China , India , Spain , and Romania . --- Excluded studies Of the 126 excluded publications, over half were excluded due to being conference abstracts published in peer-reviewed journals. Other reasons were: not being an intervention study ; reporting that <100% of the sample were GBMSM ; not reporting an HIV prevention or treatment outcome ; not focusing on mHealth ; presenting secondary data analyses ; or not being peer-reviewed . Of note, due to our strict inclusion criteria, there are several mHealth studies that are not included that target HIV-related health behaviors among other populations or utilize non-mobile enabled websites . --- Methodologic status of the literature One study was a fully powered RCT [37]. The majority were pilot studies; four were pilot RCTs [33][34][35][36] and seven were single-arm pilots with pre-post assessments [38][39][40][41][42][43][44]. The remaining four were public health outreach campaigns with post-assessments [45][46][47][48]. The median number of participants across the studies was 111, with a range from 10 [39] to 15,932 participants [48]. The five studies conducted outside of the USA did not report race/ethnicity data [34,36,38,45,48]. The average percentage of the sample comprising people of color enrolled in the U.S. studies was 65%, with a range of 30% [39] to 100% [42,46]. Most studies enrolled only adults [33,34,36,37,[39][40][41][42][44][45][46][47][48]. Two studies included both adolescents and young adults and one study focused solely on adolescents [35]. Studies utilized a wide range of recruitment strategies. Most relied exclusively on online methods [33,35,41,[45][46][47][48]. Five exclusively used offline methods [34,39,[42][43][44]. The remaining four used both offline and online methods for recruitment [36][37][38]40]. Studies used a variety of mHealth technologies to facilitate their interventions. Seven developed a phone app [33,36,38,39,[41][42][43], five used text messaging [34,35,37,40,44], and four conducted public health outreach through either advertisements or interactions with participants on preexisting social-sexual phone apps [45][46][47][48]. Behavioral theories guide nine of the interventions [33,[35][36][37][39][40][41][42][43]. Specifically, four used the information-motivationbehavioral skills model [35,36,39,42], one used social cognitive theory [41], and one used a dual processing cognitive-emotional decision-making framework [33]. Three used a combination of theories. Specifically, two combined social support theory, the health belief model, and social cognitive theory [37,40]. The other one combined social cognitive theory, narrative communication theory, and the Fogg behavior model of persuasive technology [43]. Seven did not cite a specific behavioral theory [34,38,[44][45][46][47][48]. Most targeted HIV prevention outcomes [33][34][35][36][37][38][39][40][41][45][46][47][48]. Three targeted HIV treatment outcomes [42][43][44]. Among the 13 that targeted prevention outcomes, outcomes included encouragement of HIV testing [33,35,36,41], condom use [33][34][35][36][37][38]40], PrEP initiation and adherence [33,39,41], and injecting drugs [40]. One study assessed three outcomes [33]. Two studies assessed condom use and HIV testing [35,36]. One study assessed HIV testing and PrEP initiation [41]. One study assessed condom use and injecting drugs [40]. The remaining focused on only one HIV prevention outcome [34,[37][38][39][45][46][47][48]. For the three that targeted treatment outcomes, all targeted ART adherence [42][43][44]. --- Results of included prevention interventions --- Encouragement of HIV testing Of the eight studies that encouraged HIV testing, four were pilot studies [33,35,36,41] and the remaining four conducted public health outreach to encourage testing through either advertisements or interactions with participants on preexisting social-sexual phone apps [45][46][47][48]. Of the pilot studies, three were pilot RCTs [33,35,36] and one was a pre-post assessment [41]. Three of the pilot studies developed a phone app [33,36,41]. One pilot study developed a text messaging intervention [35]. All reported that the intervention approaches were feasible and acceptable. Among the three pilot RCTs, two found significant increases in HIV testing in the intervention groups compared to the control groups [35,36]. The one pre-post assessment also found a substantial increase in testing during the intervention [41]. The four public health outreach campaigns that used existing social-sexual networking apps had incredible reach and appeared to increase testing among individuals who may not have tested otherwise, but had substantial methodological limitations, including an inability to directly attribute perceived increases in testing to exposure to their particular public health campaigns [45][46][47][48]. --- Condom use Of the seven studies that targeted condom use, one was a fully powered RCT [37]. The remaining were pilot studies; four pilot RCTs [33][34][35][36] and two pre-post assessments [38,40]. One of the pre-post assessments was the pilot study [40] of the fully powered RCT [37]. Most were text messaging interventions. All reported that the intervention approaches were feasible and acceptable. The fully powered RCT compared two text messaging interventions to a text message-based control condition. Both intervention conditions had greater and sustained reductions in condomless anal intercourse with both main and anonymous male partners compared to the control condition. Of note, the text message intervention that did not have an interactive feature was slightly more effective compared to the text message intervention with an interactive feature [37]. Among the pilot RCTs, one found a significant decrease in condomless sex in the intervention group compared to the control group [34]. The remaining three found promising, but not statistically significant, trends in condom use [33,36] or no indication of effect [35]. Of the two pre-post assessments, one found significant decreases in condomless sex [40] and the other found a non-significant trend towards decreased condomless sex [38]. --- PrEP Of the three studies that encouraged PrEP initiation and adherence, one was a pilot RCT [33] and two were pre-post assessments [39,41]. All three developed a phone app and reported that the app was feasible and acceptable. The pilot RCT found a promising, but not statistically significant, trend indicating that those in the intervention were more likely to have initiated PrEP compared to those in the control [33]. One pre-post study found promising, but not significant, trends in the expected direction for PrEP knowledge and initiation that were attributed by the Table 1 | Continued participants to use the intervention app [41]. The remaining pre-post assessment was an intervention to increase PrEP adherence among PrEP users. This small study found that for individuals who were not already fully adherent, PrEP adherence increased at follow-up [39]. --- Injecting drugs The one study that assessed injection drug use was a pre-post assessment of a text messaging intervention for GBMSM who use methamphetamines [40]. This study found significantly fewer participants reported injecting methamphetamine at follow-up compared to baseline. --- Results of included treatment interventions ART adherence Of the three studies that targeted ART adherence, all three were pre-post assessments. Two developed a phone app [42,43] and one was a text messaging intervention [44]. All three interventions were found to be feasible and acceptable. Both phone app interventions reported increases in ART adherence measures. Specifically, one found improvements in both pill count and self-reported measures of adherence [42] and the other found improvements in self-reported ability to take ART as prescribed [43]. The text messaging intervention showed improvements in self-reported ART adherence, as well as biomarkers of adherence [44]. --- Summary of methodologic rigor and risk of bias of included RCTs The majority of RCTs were categorized as low risk of selection bias due to using adequate methods to generate a randomized sequence [33][34][35][36] and proper concealment of allocations prior to assignment [33][34][35][36]. The remaining study did not provide enough information to determine selection bias or proper allocation concealment [37]. All were evaluated as having a high risk of performance bias due to inadequate methods for blinding the participants to intervention allocation and unclear risk of detection bias due to none providing descriptions of outcome assessor blinding or assessment procedures [33][34][35][36][37]. All were determined to be low risk of reporting bias due to selective outcome reporting and unclear risk of any other possible biases that should be accounted for [33][34][35][36][37]. Finally, most of the studies appeared to be low risk [34][35][36] for attrition bias due to the amount, nature, or handling of incomplete outcome data, whereas the remaining two [33,37] did not provide enough information to determine their risk of attrition bias. --- DISCUSSION We conducted a systematic review of mHealth HIV prevention and treatment interventions for GBMSM. The first report of results from an mHealth intervention exclusively for GBMSM was in 2012 [40], and since that time the results of 15 additional GBMSM-tailored interventions have been reported [33][34][35][36][37][38][39][41][42][43][44][45][46][47][48]. Given that GBMSM continue to be disproportionately affected by HIV in the USA and globally [1,2,4], in combination with the finding that only one efficacy trial of a GBMSMfocused mHealth intervention has been reported [37], suggests that this area of study is still in its infancy. There is substantial room for growth both in the variation of GBMSM mHealth interventions that should be developed and tested, as well as the reach of interventions in regions where GBMSM disproportionately bear the burden of HIV and where sex between men is highly stigmatized [51,52]. This review found that one-third of the studies were conducted in non-USA countries, and none were conducted in African countries with a high rate of HIV among GBMSM [3]. Opportunities to develop and test mHealth interventions for GBMSM will require greater investment in large-scale trials that are powered to detect group differences. Mirroring other reviews of HIV-related eHealth interventions, the current review found only one fully powered efficacy trial of a GBMSMtailored mHealth interventions [37], far outnumbered by the number of published pilot studies and public health campaigns. Due to resource constraints, pilot studies, including those reviewed here, are often limited by both the extent of the follow-up period and the use of self-reported outcomes, rather than objective biological outcomes. This finding reflects the burgeoning nature of the field, which over time will mature. Perhaps more challenging is that this imbalance in the number of pilot versus efficacy trials may reflect a deeper disconnect between scientific rigor and optimizing the development and refinement process for mHealth technologies. Despite more recent advances in study designs , the RCT has long been considered the "gold standard" to assess intervention outcomes [54]. Conducting a large-scale RCT often takes years to complete and requires that the intervention is delivered with a high level of fidelity that does not allow for changes to the intervention during the study period. In contrast, apps and other mHealth technologies outside of research contexts are in a constant state of development and testing, allowing businesses to be responsive to user needs and desires. Developing and testing effective mHealth interventions for GBMSM will continue to require a high level of rigor, however, designs that also allow for refinement and testing within a trial may be needed to accelerate the timeline from conception to scale up. Mohr and colleagues proposed the Continuous Evaluation of Evolving Behavioral Intervention Technologies framework that allows for refinement of mHealth interventions while retaining a high level of scientific rigor [55]. This and yet-tobe-developed frameworks should be considered in order to meet the demand for tailored HIV-related mHealth prevention and treatment services among GBMSM in the USA and globally. Despite these challenges, HIV-related mHealth interventions to date show a high level of promise to meet the needs of GBMSM. All interventions reviewed here were shown to be feasible and acceptable across multiple formats and outcomes . Prior reviews of eHealth interventions for HIV also show high levels of feasibility and acceptability across populations and technologies [56][57][58]. As such, the science of mHealth interventions for GBMSM may be advanced by agreeing upon core features that have been demonstrated to be acceptable to GBMSM , and focus efforts instead on novel features that have not been assessed for their acceptability or those where consensus has not been reached. In this way, resources are not unnecessarily spent on demonstrating acceptability for intervention components that have already been shown to be acceptable and feasible. Our analyses of the scientific rigor and risk of bias showed some variability across domains assessed . This variability is likely not specific to mHealth interventions, rather is present in behavioral intervention RCT studies more broadly. For example, executing rigorous randomization procedures in behavioral interventions studies is relatively straightforward, and mHealth intervention studies easily take advantage of computer-based randomization programs that can automatically allocate participants to study condition. In contrast, it is less clear how to adequately blind participants to behavioral intervention study condition, and if and how blinding occurred are often under described or not described at all. Of note is the relatively low level of attrition reported across studies. This may reflect the relatively short follow-up periods in most pilot trials or may reflect high levels of engagement in mHealth studies among GBMSM. Questions related to participant retention will start to be answered as the results of efficacy trials of ongoing mHealth interventions for GBMSM are reported. This review has several important limitations that should be considered. Although every effort was made to identify and review all relevant mHealth interventions for GBMSM, likely some published intervention studies were missed. Relatedly, we did not include published eHealth interventions that were not specifically formatted for mHealth technologies. Thus, we excluded studies that used other technologies to deliver intervention and were shown to be efficacious . Because of this rapidly changing field, we also excluded some mHealth interventions for GBMSM that were published after July 1, 2019 , suggesting the need to continually monitor and update published literature in this area. mHealth intervention studies for transgender and gender non-binary individuals were also excluded. It is possible that some studies reviewed here may have not adequately assessed gender identity and include transgender men in their sample. Future reviews of HIV-related mHealth interventions for transgender persons is important to advance understanding in this area. Finally, we focused on mHealth interventions that delivered content directly to GBMSM participants. Other important intervention approaches to meet the HIV prevention and treatment needs of GBMSM include increasing provider knowledge of, and competency in, working with GBMSM and addressing structural factors that limit the availability and impact of interventions for this group. With these limitations in mind, the results of this review provide important areas for future research. First, demonstrating that mHealth interventions for GBMSM are not only feasible and acceptable, but also efficacious through demonstrating that they improve objective HIV prevention and treatment outcomes is critical. The ability for mHealth interventions to be widely disseminated and easily accessible has been touted as major advantages of technology-based interventions [25,61], but these advantages have not been realized in part because such interventions often lack evidence to justify scale up. Most of the studies reviewed here are pilot trials with self-reported outcomes. Second, the fact that there are relatively few published mHealth interventions for GBMSM, it is difficult to assess what components are most impactful or the conditions where different mHealth intervention approaches are most successful. Conducting such analyses is important since the results may be counterintuitive. For example, in the only efficacy trial found in this review, Reback and colleagues found that one-way, noninteractive text messages were more effective than interactive text messages [37], which has important implications for future programming. A more thorough reporting of study procedures of mHealth intervention studies for GBMSM is also needed to understand areas to improve scientific rigor and potential sources of bias in these studies. These are substantial challenges facing the field of mHealth interventions for GBMSM, but the published studies reviewed here suggest a promising future for such interventions. Advancing research and practice in this emerging area will require thoughtful coordination and effort to actualize the promise of mHealth interventions for GBMSM. --- Conflict of Interest: All authors declare that they have no conflicts of interest. Human Rights: This article does not contain any studies with human participants performed by any of the authors. Informed Consent: This study does not involve human participants and informed consent was therefore not required. Welfare of Animals: This article does not contain any studies with animals performed by any of the authors.

The use of mobile health (mHealth) technologies addressing HIV disparities among gay, bisexual, and other men who have sex with men (GBMSM) has increased. A systematic review of mHealth interventions for HIV prevention and treatment among GBMSM was conducted to summarize the current evidence and provide recommendations for future research. PRISMA guidelines were followed (PROSPERO ID: 148452). Studies identified via PubMed, PsychInfo, or Embase were included that (i) were in English, (ii) were published in a peer-reviewed journal prior to July 1, 2019, (iii) presented primary results, (iv) included only GBMSM, and (v) reported the results of an mHealth intervention (e.g., text message, phone/mobile application [app]) to improve HIV prevention or treatment outcomes. Of 1,636 identified abstracts, 16 published studies met inclusion criteria. Eleven studies were conducted in the United States. One study was a fully powered randomized controlled trial (RCT), seven were single-arm pilots with pre-post assessments, four were pilot RCTs, and four tested public health campaigns with post-assessments. Seven developed study-specific apps, five used text messaging, and four used existing social networking apps. Most (81%) targeted prevention outcomes. Nine cited a specific behavioral theory. All studies found that a mHealth approach was feasible and acceptable. All interventions provided evidence of preliminary efficacy or promising trends on primary outcomes. Although mHealth interventions for HIV prevention and treatment appear feasible and acceptable, most published studies are small pilot trials. Additional research assessing the efficacy and mechanisms of mHealth interventions is needed.

Introduction By the end of 2020, there were 1.053 million people living with human immunodeficiency virus in China, and the cumulative number of reported deaths was 351,000 [1]. Data extracted from 355 studies in China estimated the overall prevalence of HIV among men who have sex with men from 2001 to 2018 was 5.7% [95% confidence interval : 5.4% ~ 6.1%] [2]. MSM are a high-risk group for HIV infection and a growing public health challenge in China. Pre-exposure prophylaxis , a preventive measure to prevent HIV infection by taking antiviral drugs in people who are not yet infected but are at risk of infection, is one of the most important preventive measures for HIV [3]. World Health Organization [4] recommends oral PrEP as an additional prevention strategy for key populations , who are at high risk of HIV infection in 2012. In 2016, the Chinese Center for Disease Control and Prevention released the Guidelines for HIV Prevention Interventions in High-Risk Populations, which for the first time clarified the applicable population, medication regimen and follow-up for PrEP in MSM [5]. Expert Consensus on PrEP for HIV prevention in China was published in 2020 [6]. In the same year, Truvada was approved by the National Medical Products Administration of China in August in China [7]. Despite several policies emphasizing the importance of implementing PrEP among MSM in China, there are still no separate PrEP guidelines for MSM to directly refer to. Despite oral PrEP is safe and effective in MSM, the use of PrEP has been discouraging, especially in MSM [8][9][10]. The U.S. National AIDS Strategy reported that 13.2% of MSM used PrEP in 2017, which was far from the goal that 50% of PrEP-eligible MSM should use PrEP [11]. In the Italian snowball survey, only 7.5% of MSM had used PrEP [12]. A cross-sectional survey in China based on online questionnaires showed that 4.3% of MSM had used PrEP [13]. Therefore, the rate of PrEP uptake in MSM is low and there are no relevant studies showing the use of PrEP in high-risk MSM. In addition, barriers to PrEP among gay, bisexual, and other MSM have received substantial research attention, but less is known about what factors may be affecting PrEP use among high-risk MSM [14]. Therefore, a cross-sectional study was designed to obtain information on the use of PrEP in high-risk MSM and the factors influencing PrEP use, in order to provide a theoretical basis for future PrEP guidelines in China. --- Methods --- Study design A cross-sectional survey was conducted from January 2021 to April 2021 in six cities in China, including Beijing, Shenzhen, Chengdu, Changsha, Jinan and Nanjing. These six cities had high rates of new HIV infections in China [15]. Given the strong influence of social organizations for MSM among gay in China, this study relied on them to distribute an electronic questionnaire to eligible MSM and then recruited more participants through the snowballing method [16].The inclusion criteria for participants were as follows. completed informed consent; male 18 years of age or older; had sex with men; and HIV negative or unclear. --- Procedures First, the questionnaire was designed based on the literature review at home and abroad and consultation of experts. Second, a pre-survey was conducted in February 2021 on the "i Guardian" Platform. Relying on the People's Health Publishing House, the "i Guardian" platform is dedicated to building an authoritative information dissemination platform, including the service of conducting online questionnaires. Ten MSM completed the survey and the questionnaire was revised based on their feedback. Third, from January to February 2021, researchers contacted MSM social organizations in six cities that had worked with us on multiple HIV-related projects and had good project implementation experience. Each MSM social organization in the six cities chose one or two people to conduct the survey, and then the researchers taught them how to conduct this study and helped them understand each question. Fourth, the study launched from March 1 to April 30, 2021. The person in charge of the investigation sent the QR code of the questionnaire to the participants who came to the MSM social organization for consultation. After participants filled out the questionnaire anonymously on the "i Guardian" platform, they could share the QR code with qualified male companions around them via webpage, WeChat, QQ and other forms. Sample size was estimated by cross-sectional survey formula /d 2 ). Based on the PrEP utilization rate of 13.2% [17], 2526 people were needed. Considering the invalid response and other factors, the sample size was designed to be 2600. Finally, the researchers checked the questionnaire database to ensure the completeness of the information . --- Study variables The questionnaire included demographic characteristics ; basic knowledge of PrEP, willingness and use of PrEP; and sexual behavior . The primary outcome of this study was the rate of PrEP use among high-risk MSM. The secondary outcome of this study was the factors influencing the use of PrEP in highrisk MSM. Relevant definitions involving the outcome were shown below. PrEP use was measured with a question, "Have you used PrEP?". Answering "Yes" indicated that the participant had used PrEP. The willingness to use PrEP was measured with a question, "Do you want to use PrEP if you are about to have a high-risk HIV behavior?". Answering "Yes" indicated that the participant had the willingness to use PrEP. PrEP knowledge awareness was defined by four questions [18], including "What do you think is the function of HIV pre-exposure prophylaxis?"; "Who do you think needs HIV pre-exposure prophylaxis?"; "Do you know how to take pre-exposure prophylaxis?"; "Do you think it is necessary to use condoms when having sex while taking pre-exposure prophylaxis?" The correct answers to the four questions were "HIV prevention", "at risk for HIV infection", "take daily" and "take two days before and after high-risk sex", and "Yes". Correct responses to all four questions would be recorded as PrEP knowledge awareness. The definition of high-risk MSM included seven questions [19][20][21][22]. Number of male sexual partners in the past six months was 10 or more; Never used condoms when having sex with a male in the past six months; Had commercial sex with MSM in the past six months. Had male-to-male group sex frequently in the past 6 months ; Male sexual partner was HIV positive and had not received ART in the past 6 months; Used drugs in the past 6 months ; Having been diagnosed with an STD in the past 6 months. Meeting any of these conditions was considered as high risk MSM. --- Statistical analysis This study focused on the use of PrEP by high-risk MSM who had heard of PrEP. MSM who had not heard of PrEP were not required to answer PrEP-related questions, so only those who had heard of PrEP were selected for subsequent statistical analysis. First, descriptive analysis was performed to describe demographic characteristics, awareness and use of PrEP, and sexual behavior among high-risk MSM. Then, factors influencing the use of PrEP among high-risk MSM who had heard of PrEP were analyzed by univariate and multivariate logistic regression. All statistical tests were analyzed with R 4.1.0, and P-value < 0.05 was considered statistically significant. --- Results A total of 6147 questionnaires were collected. According to the inclusion criteria, invalid questionnaires were deleted, leaving 6035 valid questionnaires. The number of qualified questionnaires in the six cities of Beijing, Shenzhen, Chengdu, Changsha, Jinan and Nanjing were 2256, 809, 813, 408, 863 and 886, respectively. 4443 questionnaires were from WeChat, and the rest were filled in through other ways. --- High-risk MSM Among 3882 MSM had sex with men in the past six months, 6.2% had more than 10 male sexual partners, 7.4% never used condoms when having sex with a male, 7.4% had commercial sex with MSM, 1.3% had male-to-male group sex frequently, 1% of the most recent male sexual partner was HIV positive and had not received ART, 45.3% took drugs, and 7.6% had been diagnosed with STD . According to the definition of high-risk MSM, there were 2188 high-risk MSM in this study. Then, only 1865 high-risk MSM had heard of PrEP. --- Characteristics of high-risk MSM Among high-risk MSM who had heard of PrEP, median age was 32.2 years. 93.6% of high-risk MSM who had heard of PrEP were Han nationality, 54.8% were domiciled in the city or province other than the one they lived in, 76.2% had a diploma degree or above, 75.8% were unmarried, 77.2% had stable jobs, 62.2% had an average monthly income above 5000 RMB, 328 were bisexual, and 9.6% had never been tested for HIV in the past year . --- Knowledge awareness, willingness, uptake of PrEP among high-risk MSM --- Discussion Although PrEP is an important measure to HIV prevention in high-risk MSM, the rate of PrEP use was low . Because there were no studies in the literature on the use of PrEP in high-risk MSM, PrEP use was relatively high in high-risk MSM compared to MSM. For example, the rate was higher than a crosssectional survey of PrEP use among MSM in 34 cities in China [23] and a cohort study implemented in Harbin, China (0.7% of MSM used PrEP Table 1 The characteristic of high-risk sexual behavior among MSM a Refers to the time limit for these variables is within the last six months --- Variables Counts Percentage The at baseline survey) [24]. This was because high-risk MSM were more sexually active and had a greater need for PrEP and therefore used more of it. In addition, high-risk MSM had higher knowledge of the role, suitable crowd, dosing regimen of PrEP than non-high-risk MSM, and PrEP knowledge was a factor promoting PrEP use among high-risk MSM, considering that PrEP use also be higher among high-risk MSM due to better knowledge of PrEP. But, the rate of PrEP use among High-risk MSM was lower than a cross-sectional analysis of MSM who had problematic sexual behavior within the United Kingdom [25] and a descriptive analysis of MSM in the increase the knowledge and use of PrEP among high-risk MSM to meet their high willingness. Factors influencing PrEP use among high-risk MSM included age, education, job, number of HIV tests in the past year, knowledge awareness of PrEP, and whether or not consulted PrEP. The results showed that high-risk MSM with unstable jobs and higher education were more likely to use PrEP, which was consistent with the results of Siyan Yi et al. [27]. Since MSM with higher education might have easier access to health-related information [28]. Besides, the results of Guan Y [23] showed that subjective barriers to using PrEP included unemployment and objective barriers included high costs. In response to the unemployment issue, this study complemented that high-risk MSM without regular jobs used more PrEP than MSM with regular jobs, considering that MSM with unstable jobs had more frequent high-risk sexual behaviors. In addition, in order to deal with the issue of high costs being an objective barrier to the use of PrEP, this study had made a different finding. This study found that monthly income was not an influence on PrEP use in high-risk MSM, which was inconsistent with the study by Brooks, R. A. et al. [29]. The current price of PrEP drugs in China fluctuated greatly. Users only needed to take 4 pills in a course of PrEP for an average of 25-43 yuan . The low price made more MSM willing to use it. The THRIVE program provided PrEP to higher proportions of PrEP-eligible persons than current national estimates, however PrEP use disparities persist, suggesting a need to increase PrEP coverage [30]. It is suggested that improving the coverage of PrEP is one of the key issues to solve the differences in the use of PrEP. However, online services for selling PrEP drugs have flourished in China, with multiple online purchasing platforms available to purchase PrEP, further helping to increase PrEP accessibility and expand coverage. A systematic review of 23 studies showed that younger MSM were more likely to take PrEP [31], in contrast to the results of Yu Liu et al. [32] and our findings. Older high-risk MSM had more exposure to PrEP and might have better knowledge about PrEP. Combined with the results of the multivariate logistic regression analysis, knowledge awareness promoted PrEP use in high-risk MSM, so that older MSM had more use of PrEP. In addition, participants who had consulted PrEP were more likely to use PrEP. MSM who have consulted PrEP would know more information about PrEP, on the other hand, it might also be due to the fact that MSM who had consulted PrEP had a higher willingness to use PrEP. The accompanying measures and one-on-one counseling by a trained counselor could increase the effectiveness of this PrEP program [33]. Therefore, valid and accurate information from PrEP counselors is needed. The results showed that as the number of HIV tests increased, more high-risk MSM used PrEP, consistent with the findings of the other two studies [34,35]. Because patients seeking PrEP were screened for HIV before starting therapy as well as every 3 months after beginning treatment with PrEP [36]. In addition, highrisk MSM had more frequent high-risk sexual behavior, and going for frequent HIV testing reflected both the importance they placed on their health and the fear of HIV infection. Early testing can reduce complications of HIV infection and reduce the risk of transmission. It is estimated that 40% of new infections of HIV are transmitted by those who are not aware of their HIV diagnosis [37]. The day of HIV testing was the critical moment for people with high HIV exposure risk to start PrEP [38]. It was suggested that advertising PrEP during HIV testing or HIV self-testing was a very good way to increase the use of PrEP. MSM who do not test frequently for HIV are less likely to be aware of PrEP, test for sexually transmitted infections, or use condoms [32]. 6.3% of high-risk MSM thought that condom use was not required for sex while taking PrEP, consistent with the findings of Braksmajer. A. and Ahouada. C. [18,39]. Although the percentage was relatively small, this issue should not be ignored. After all, PrEP is not absolutely 100% effective in HIV prevention. Furthermore, in Brazil, MSM reported that learning about PrEP online positively influenced their willingness to use it [40]. And a web-based survey in Latin America, willingness to use PrEP was found to be high and directly related to PrEP awareness [41]. The results of these two studies suggested that MSM had higher acceptability when PrEP was promoted on the Web, so PrEP promotion can be enhanced on the Web, with particular emphasis on condom use when promoting PrEP. In this study, MSM were recruited through an MSM social organization in an online "snowballing" way where participants anonymously completed questionnaires and shared it with their eligible male peers. This "snowballing" method has the disadvantage of not being able to track the entire process, such as not knowing how many times it has been rolled, how many people were contacted each time and how many people responded, and only knowing the total number of questionnaires at the end. This shortage does not affect the quality of the questionnaire. Besides, through this online questionnaire sharing, MSM who were more interested in the topic would choose to answer. In addition, MSM had recalling bias when completing the questionnaire, but the researchers limited the questions to a certain period of time, such as "in the past six months" to reduce bias. --- Conclusion In conclusion, the rate of PrEP use in high-risk MSM was relatively low. And high-risk MSM showed high willingness to use PrEP, low knowledge awareness, and low usage. Therefore, government and health authorities should continue to strengthen MSM awareness of PrEP and condoms. How to reduce the gap between high willingness and low usage is the next step to be studied. PrEP was more used by high-risk MSM with unstable jobs, higher education, frequent HIV testing, and PrEP counseling. However, it is also worth considering whether these variables have a direct effect on PrEP use, or an indirect effect on PrEP use through knowledge of PrEP or other factors. • 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 biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? Choose BMC and benefit from: ? Choose BMC and benefit from: --- --- Author contributions GZ, HT and XW designed the research study. WK and TL collected the data. LC and MQ analyzed and interpreted the data. XY wrote the first draft of the paper. All authors read and approved the final manuscript. --- --- --- Competing interests The authors declare no competing interests. ---

Background Pre-exposure prophylaxis (PrEP) is a proven biomedical strategy to prevent HIV transmission among men who have sex with men (MSM). Despite oral PrEP is safe and effective in MSM, the use of PrEP has been discouraging, especially in high-risk MSM. And there are no relevant studies showing the use of PrEP in high-risk MSM. The purpose of this study was to get the rate of PrEP use and the factors influencing PrEP use among high-risk MSM. Methods A cross-sectional study was conducted through an electronic questionnaire on the "i guardian Platform", and "snowballing" method was used to recruit MSM in six cities in China, including Beijing, Shenzhen, Chengdu, Changsha, Jinan and Nanjing in China, from January to April 2021. Univariate and multivariate logistic regression analysis were used to analyze the factors associated with the use of PrEP among high-risk MSM who had heard about PrEP.Among the 1865 high-risk MSM who had heard of PrEP, the rates of those who were willing to use PrEP, had knowledge awareness of PrEP, and had used PrEP were 96.7%, 24.7%, and 22.4%, respectively. Multivariate logistic regression analysis of PrEP use in high-risk MSM showed that more PrEP was used by those who were 26 years or older (OR = 1.86, 95%CI 1.17 ~ 2.99), had master degree or above (OR = 2.37, 95% CI 1.21 ~ 4.72), had unstable work (OR = 1.86, 95% CI 1.16 ~ 2.96), had tested five or more HIV times in the past year (OR = 3.09, 95% CI 1.65 ~ 6.04), had consulted PrEP (OR = 22.05, 95% CI 14.87 ~ 33.91) and had PrEP knowledge awareness (OR = 1.90, 95% CI 1.41 ~ 2.55) (P < 0.05).The rate of PrEP use in high-risk MSM was relatively low. PrEP was used more by high-risk MSM with unstable jobs, higher education, frequent HIV testing, and PrEP counseling. Public education on PrEP for MSM should continue to be enhanced to help them use PrEP in a timely and accurate manner.

Background There are now approximately 32,000 men who have sex with men in the UK living with diagnosed HIV. [1] While the sexual behaviour of MSM living with diagnosed HIV has been the focus of research [2][3][4] and HIV sexual health promotion practice for many years, this has typically focussed on the HIV related risks they pose to their sexual partners . This notion of 'Positive Prevention' largely relates to encouraging and empowering people living with HIV to take precautionary measures to ensure they do not pass on HIV to their sexual partners. Such an approach has been criticised for placing the burden of responsibility for preventing infections on the shoulders of HIV-positive people. In recent years there has been increasing recognition that rewarding sex, good mental health and positive wellbeing for the person living with diagnosed HIV should be integral components of Positive Prevention. [7] Indeed, the turn of the decade has witnessed a reshaping of terminology that now promotes 'Positive Health, Dignity and Prevention'. [8] The primary goal of this approach is to support people living with HIV/AIDS to achieve health and well-being, including sexual health and wellbeing. In England, the CHAPS partnership of HIV health promotion organisations has recently published its revised strategic planning framework which, more than ever before, establishes the promotion of the best sexual health for MSM living with HIV as a goal of its activities. [9] A growing body of evidence suggests significant sexual ill-health and social isolation for individuals living with HIV. Previous authors [10] have reported experiences of stigma, rejection and significant mental ill-health amongst the group of gay identifying men living with HIV in England. Others have described sexual difficulties and an association with depression amongst HIVpositive gay men in Australia [11]. Sexually transmitted infection incidence and diagnosis data from the Health Protection Agency indicate significantly higher rates of syphilis and lymphogranuloma venereum transmission among MSM with diagnosed HIV. [12,13] A rising incidence of Hepatitis C among MSM with diagnosed HIV has been observed in several countries [14,15]. Previous survey research among people with diagnosed HIV in the UK found 51% of all respondents to have experienced a problem or problems with sex in the preceding 12 months [16]. The most commonly described problems were little or no sex, erectile dysfunction, HIV transmission anxiety and poor self-image. In the years since that study was published there has been a number of clinical, social and legal developments in the UK that have the potential to impact on the sexual behaviour of people with diagnosed HIV, including a trend toward criminal prosecutions for HIV transmissions [17] and continuing advances in anti-retroviral therapies and clinical outcomes for individuals on treatment. [18,19] Given this changing social, legal, and clinical environment, there is a need for more data relating to the current sexual health needs of this group. This paper explores: the problems that gay men with diagnosed HIV experience with regards to sex and how are these associated and; the ways in which these sexual problems might be alleviated. --- Methods Data from this paper are derived from What do you need? 2007-2008, a broad ranging needs assessment of people living with diagnosed HIV in the UK whose detailed methods have been published elsewhere. [20] The following outlines its key features. --- Sample recruitment The survey used a self-completion questionnaire with attached reply-paid envelope. Distribution occurred between 5 th June 2007 and 5 th January 2008. As there is no national sampling frame available, recruitment was by convenience. Booklet versions of the questionnaire were distributed by 107 different agencies across the UK, including charitable AIDS service organizations, genitourinary medicine or HIV out-patients clinics, and local authority agencies. Overall, 17815 booklets were requested by and sent out to these agencies. The HIV charity NAM also sent the booklet questionnaire by post to 4950 subscribers to their HIV treatments newsletter . An identical questionnaire was also available to complete online in both English and French. Its availability was promoted via the websites of eleven collaborating HIV health promotion agencies. --- Measures Twenty areas of need were chosen for inclusion in the survey. Seventeen of these were derived from an earlier version of the survey [16] while others were derived from discussions with HIV health and social care professionals in the field. This paper focuses only on responses to questions regarding sex. Respondents were asked: In the past 12 months have you had any problems with your sex life? Those who indicated 'yes' were asked to clarify what those problems were from a list of 10 problems derived from open-ended responses to the same question in a previous survey. [16] Respondents could also describe 'Other' problems. Those who had experienced one or more problems were asked whether they had sought help or support in relation to their problems. They were then asked: Compared to a year, ago have these problems got better, worse or gone away? Those who indicated their problems had got better, worse or had experienced no change were asked: With more help or support do you think you could reduce or overcome these problems? Those indicating 'yes' or 'don't know' were asked Realistically, what help do you think would make a difference to your sex life? with a freeresponse box. --- Analysis Descriptive quantitative analysis was undertaken with SPSS PC version 18.0. Chi-square and Student-t tests were used to establish sample differences according to age, time living with diagnosed HIV, and region or country of UK residence. The ten specific problems were correlated with each other to give a matrix which was then factor analysed using principal components analysis with Varimax rotation. Factors with loadings of 0.7 and above were considered and those items so loaded were used to interpret the factors. Qualitative responses to the question of what help and support for unresolved problems might look like were subjected to a thematic content analysis. The data were read and reread and initial codes were documented. These were then collated into relevant themes and all examples of each potential theme were recorded. After reviewing the themes to ensure they accurately represented the source material from which they came, they were labelled and described in narrative form. --- Ethics Information provided at the beginning of the survey outlined the motivations for, and protection of, the data. Consent was assumed by any subsequent completion of the survey. The study received approval from Oxford A Multi-centre Research Ethics Committee with confirmation that the research fell within the Department of Health's Supplementary Operational Guidelines for NHS Research Ethics Committees on Multi-Centre Research in the NHS. --- Results --- Response and sample characteristics Overall, we received 1929 questionnaires, including 1113 booklets and 816 online responses. Of these, 152 responses were excluded from further analysis because they did not live within the UK , and/or did not confirm they had diagnosed HIV and / or had previously taken part in the study . This left a final sample of 1777 unique individuals with diagnosed HIV resident in the UK. This paper reports responses from the 1217 male respondents who identified as gay or bisexual, or who specified a term for their sexuality that implied same-sex behavior. As a group, men who completed the booklet version of the survey had been diagnosed with HIV for longer compared to men who completed the online version . Those who completed the booklet version were significantly more likely to be on HIV antiretroviral therapy than those who completed the survey online . Men who had completed the survey online were as a group significantly younger than men who completed the booked version There were no significant differences between booklet and online recruited men according to ethnicity, level of educational attainment, region of residence or sexual identity. The difference between our sample and all men living in the UK with diagnosed homosexually acquired HIV was estimated by comparing sample demographics with the National Survey of Prevalent HIV Infections Diagnosed , conducted annually by the Health Protection Agency's Centre for Infections and Health Protection Scotland. [21] SOPHID 2007 data was used. Our sample over-represents men in Wales and Northern Ireland and under-represents men in Scotland. Across England, our sample over-represents men in the North West and West Midlands regions and under-represents those in East of England and East Midlands. The sample also over-represents men of white British ethnicity and under-represents men from all minority ethnic groups . --- Prevalence of problems with sex Overall, 70.5% of the MSM with diagnosed HIV reported one or more problems with sex within the previous 12 months. There was no significant difference in whether or not a problem was reported by age, time since diagnosis with HIV, or area of residence, although specific problems did show difference . The problems experienced are shown in Table 2. Among Other problems, respondents most commonly described sexual pleasure being undermined by illness, pain and/or treatment side-effects. Fatigue, problems with bowel or prostate, and skin disorders were also mentioned. The problems experienced varied by age but not all in the same direction. Men who had a problem with disclosing their HIV status to sexual partners were as a group significantly younger than men who did not have this problem . This was also true in relation to worries about passing HIV to a sexual partner and worries about prosecution if HIV is transmitted . Men who had a problem with poor self image or low self-confidence were, on the other hand, older . Several problems were more common among men not currently on anti-retroviral therapy. Compared to men on therapy, those not on therapy were more likely to have been worried about disclosing their HIV status to a sexual partner , to fear rejection from a sexual partner and to worry about transmitting HIV to a sexual partner . Men diagnosed within the preceding 5 years were more likely to be worried about disclosing their HIV status and about transmitting HIV to a sexual partner than men who had been diagnosed for over 5 years. --- Groupings of problems with sex In factor analysis, the first four components extracted accounted for 62.6% of the variance in the matrix, and were interpretable. Their loadings for the ten items are shown in Table 3. No other factor had a loading of 0.7 or above on any of the ten items. The first factor loaded at almost 0.7 and above on three items related to managing disclosure to sexual partners: worries about sexual rejection, worries about disclosure and worries about being prosecuted for passing on HIV following non-disclosure. Worries about passing on HIV also loaded heavily on this factor. The following three factors each loaded at 0.7 or over on one item onlyloss of libido, too little or no sex, and too much sex. --- Potential for resolution of sexual problems Men who had experienced a problem in relation to sex in the last year were asked whether their problems had been solved or gone away, gotten better, gotten worse or stayed the same. Only 1.2% felt that the problem had been solved or gone away, 14.1% said things had gotten better and for 34.4% things had gotten worse. 50.3% reported no change. Of those who indicated their problems had gotten better, worse or had not changed, 35.7% felt that further help or support could help them to reduce or overcome these problems, and a further 40.1% were unsure whether it could. --- Suggestions for support Four key themes emerged from the suggestions men made for what this support might realistically look like * 2007 SOPHID data for homosexually acquired HIV [21]. . These were: therapeutic support to increase self-esteem and confidence; tackling HIV-related stigma; clarity on criminalisation of HIV transmission; and help to achieve better quality of sexual life. Short descriptions of themes with indicative quotes from respondents now follow. --- Therapeutic support to increase self-esteem and confidence Over a third of responses related to a desire for therapeutic support, either group-based or one-to-one, to help address issues of low self-esteem or low self-confidence, which were having a negative impact on their ability to have sex they are happy with. Typical responses were "Feeling better about myself and not seeing myself as a dirty, infected bastard would help things" and "Continued counselling support to build confidence." Tackling HIV related stigma Around a quarter of respondents said that tackling HIVrelated stigma, or broadly educating other gay men and the general public about HIV would help to improve their sexual interactions and reduce the likelihood of rejection following disclosure. A typical response was "Finding that the level of public understanding was sufficiently improved that I felt more confident about disclosure to prospective partners without risking ostracisation or public humiliation." --- Clarity on criminalisation of HIV transmission Around a sixth of responses directly related to concerns about the criminalisation of HIV transmission and a desire for clearer guidance for men, their sexual partners, and health professionals about how and why such prosecutions operate. Most were critical of the use of the criminal law and the consequences for risk negotiation. A typical response was "Concern about transmission and criminalisation makes me anxious and depressed. . .a more reasoned discussion about criminalisation would help. Currently, all the pressure and responsibility is on ME. . .what happened to each person is responsible for their own sexual health?" Help to achieve higher quality of sexual life Around a quarter of respondents expressed a need for help achieving good quality sex, rather than simply a high frequency of sexual contact. They also wanted help to overcome issues with erectile dysfunction as well as a loss of libido, which were having a detrimental impact on their sex lives. Typical responses were "I want more than just sex that is easy to get but these days I want sex WITHIN a relationship not recreational sex" and "Safe treatment for erectile problems." --- Discussion Our survey has identified key areas for sexual health promotion among MSM with diagnosed HIV, although some shortcomings of the survey should be noted. By using multiple recruitment methods, we sought to reduce the biases of opportunistic recruitment. While a relatively small number of those whom came into contact with the survey actually completed it, the final sample represents 5% of MSM with diagnosed HIV seen for care in 2007. [21] The sample will not include people who do not have any contact with services, unless given a questionnaire by friends. It will also be skewed away from people who are not literate in English, worried about confidentiality or wary of social research. The sample likely over-represents men who are more comfortable both with their homosexuality and with their HIV status. In addition, the sample under-represents ethnic minority MSM with HIV, whose sexual health needs may have additional dimensions. Our findings highlight significant sexual health need among gay and bisexual men with diagnosed HIV. In terms of the groupings of problems HIV positive MSM experience , our analysis suggests a large and singularly coherent problem of managing status disclosure to potential sexual partners, with its attendant risks of rejection if disclosure occurs, and potential prosecution if disclosure does not occur . Previous qualitative research also reports sometimes harrowing cases of rejection by sexual partners following HIV status disclosure [22], which itself has an impact on self-confidence. A survey of 7461 gay and bisexual men with diagnosed HIV found that if faced with HIV status disclosure by a potential sexual partner, 51.9% of HIV negative or untested men would not wish to have sex at all. [23] However, similar research in 2006 found that 74.3% of gay and bisexual men expect potential sexual partners with diagnosed HIV to disclose their status prior to sex. [24] Uncertainty about their obligations to disclose under the criminal law, and a justifiable fear of rejection and its possible consequences, make it harder for men with diagnosed HIV to talk openly about their status and negotiate risk management strategies that are appropriate for their situation. Two separate and distinct sexual problem areas related to not having sex emerged from the analysis, these concerned loss of libido and not wanting sex , and wanting sex but not having opportunities to engage in it . Similar survey research with people with diagnosed HIV in Australia also reported that 57.6% of respondents felt having HIV had negatively impacted on their libido. [25] A significant number of men reported problems related to low self-esteem or low self-confidence. Such issues were represented in several other needs explored in the What do you need? survey. [20] A disproportionate burden of mental ill-health among sexual minorities more broadly, and people with diagnosed HIV specifically, has been well-documented [26][27][28], but the current data highlight the significant negative impact this can have on sexual happiness and sexual well-being. Collectively, these data emphasise a need for the maintenance and expansion of mental health services to meet the significant needs of people with diagnosed HIV, especially as these intersect with their ability to negotiate sex that is satisfying. Organisations working to improve the sexual health and well-being of men with diagnosed HIV always need to remain proactive in their approach highlighting the problems that many positive men face as a means of normalising them, and advertising the help they can provide to try and overcome them. People designing programs or policy initiatives should note that problems are not distributed evenly among men with diagnosed HIV. Rather problems with disclosure, and concerns relating to criminal prosecution if HIV is transmitted, seem particularly salient for younger men, while older men are more likely to have problems with poor self-image or low self-confidence. --- Conclusions Data collected as part of this study indicate that there is considerable unmet sexual health need among gay and bisexual men with diagnosed HIV, particularly as it relates to loss of libido, managing information about ones HIV status, and in terms of low self-esteem or self-confidence. Like all homosexually active men, those with diagnosed HIV have a right to the best sex with the least harm. Meeting their sexual needs, helping them to overcome issues of self-esteem or selfconfidence will help them have more rewarding sex lives, while empowering them to negotiate sex more effectively and addressing HIV-related stigma may also facilitate an environment in which onward transmission of HIV is less likely to occur. --- Competing interests The authors declare that they have no competing interests. Authors' contributions AB conducted principal data analysis and wrote the first draft of the manuscript. FH contributed additional statistical analysis and helped to conceptualise the focus of enquiry. PK, DR and PW participated in the design and execution of the study and helped to draft the manuscript. All authors read and approved the final manuscript.

Background: A significant research literature exists that details the sexual health and sexual behaviour of gay and bisexual men who have diagnosed HIV. However, much of this research has focussed on HIV transmission risk behaviours among this group, rather than seeking to understand their sexual health and sexual well-being more broadly. There have been growing calls for interventions to support people with diagnosed HIV to achieve health and well-being, including sexual health and well-being. A detailed understanding of the problems people in this group face, and how they might be overcome, is required to facilitate such interventions. Methods: One thousand two hundred and seventeen gay and bisexual men with diagnosed HIV were recruited by convenience sampling through charitable AIDS service organisations, genitourinary medicine clinics and local authority agencies to complete a survey of their health and social care needs. Respondents were asked to report any problems they had with regards to sex during the 12 months prior to survey completion. They were also asked to describe what support might help them to overcome any problems they experienced. Results: Overall, 70.5% of the gay and bisexual men with diagnosed HIV completing the survey reported one or more problems with sex within the previous 12 months. Most commonly reported problems include loss of libido (44.0%, n=540), poor self-image or low self confidence (43.9%, n=534), worries about passing HIV to potential sexual partners (37.3%, n=454), and fears of rejection from sexual partners (34.7%, n=422). Responses varied according to age, time since diagnosis, and whether or not the respondent was currently taking anti-retroviral therapy. Qualitative analysis of data relating to what support might help men overcome problems with sex indicate a need for therapeutic support to increase self esteem and confidence, clarity on criminalisation of HIV transmission, the tackling of HIV related stigma and help to achieve a higher quality (as opposed to quantity) of sex.The findings indicate a need for the maintenance and expansion of services to meet the significant needs of people with diagnosed HIV, especially as these intersect with their ability to negotiate sex that is satisfying.

Introduction The aim of this article is to analyze, from the point of view of health, assistance and education, three institutions built to shelter poor children in Goiás in the 20th century: the São Vicente de Paulo Asylum and the São José Orphanage , both still in operation1 , located in Goiás city, which was the state capital until 1937, and Afrânio de Azevedo Preventorium , which operated in Goiânia, capital since then. The São Vicente de Paulo Asylum focused on health, that is, it sheltered patients, regardless of age, or being male orphans; the São José Orphanage, in turn, prioritized assistance to poor orphans and, finally, the Afrânio de Azevedo Preventorium proposed the education of its inmates. The asylum and the orphanage are centuries-old institutions, while the preventorium ceased to exist and very few sparse documents remain. It would be presumptuous of us to propose a detailed analysis of the three institutions. However, our proposal will be to present them dialoguing with health, assistance, and education. In this sense, we will not cover the entire period, we will only address the first decades of each institution operations. If we take the Goiás historiography on childhood, unfortunately, few works were carried out. The first to break into this field was Diane Valdez's master's thesis, entitled Filhos do Pecado, Moleques e Curumins: Images of Childhood in the Lands of Goiás in the 19th Century. The term "Filhos do pecado" alludes to children born of concubinage, a practice that the Catholic Church condemned, and which was intensely practiced in Goiás in the 18th and 19th centuries , We consider that Valdez's study was the pioneer in trying to understand childhood in Goiás as a historical construction. In his path came other works that addressed childhood in other contexts, such as the dissertations by Lara Costa on the underprivileged orphans sheltered at São José Orphanage, and Kalyna Faria on the children of leprosy patients who were compulsorily housed in the Afrânio de Azevedo Preventorium, and Mauro Pires , who addressed the School of Apprentices and Artificers that emerged at the beginning of the 20th century and aimed the professional education in Goiás City. In addition to these, there are works that, although it is not the main object, it contemplates childhood, such as the study by Rildo Souza . In addition, the work of Sônia Magalhães and Elias Nazareno on the diseases that affected children in Goiás City in the 19th century should be noted. However, there is no reference in the work of Maria Luiza Marcílio about childhood in Goiás or about assistance establishments in the State, which leads us, once again, to emphasize the absence of research on this subject. Remembering that the author wrote her work in the 1990s, the same period that Danilo Rabelo wrote his dissertation on the behavior regulation in Goiás City, addressing the Isabel College, founded in the capital in 1876, considered the first internship school for "disabled" girls or orphans. Later, still in the Empire period, the Company of Military Apprentices of Goiás and the Blasiliana Colony were founded, with the purpose of sheltering poor orphans. The objective of the Company of Apprentices was to be used for military service while the Colônia Blasiliana was to train for agricultural service . We consider that there is still much to be researched about childhood in Goiás; it is a research field completely lacking new perspectives, new approaches and other readings of old and new documents. We hope that this article inspires other historians to invest their efforts in this theme. The research on a social history of childhood in Goiás needs to reach the fruitful debate that has been consolidated in Brazil since the publications of Maria Luiza Marcílio , Irene Rizzini , Mary Del Priore and Marcos Cezar Freitas . These works form the foundation for reflection on the theme, presenting us with the possibilities and limits for childhood as an analysis object. If the purpose of research about the childhood classics in Brazil was to locate the place that childhood occupied, these places were the result of medical and legal discourses that aimed to civilize the nation. The most recent publications, in turn, by Sônia Camara , and the two collections, one organized by Gisele Sanglard et al and the other by Luiz Otávio Ferreira, Gisele Sanglard and Renilda Barreto , highlight philanthropy and hygienism for understanding the social representations of childhood. It is about a narrowing of ties with medical discourse and assistance institutions in an attempt by some groups to moralize poor childhood. Thus, in the light of references of great importance to the history of childhood and to corroborate the situation of the discussions, we list the excerpts of philanthropy and hygiene in the three situations presented here. Unique institutions in their structure and foundation, but which have similarities in terms of their goals of assisting underprivileged children, composing the panorama built throughout the 20th century in Goiás City. --- Health: The São Vicente de Paulo Asylum The first institution we will analyze is the São Vicente de Paulo Asylum, inaugurated in 1909 and built with the efforts of the São Vicente de Paulo Society 2 in the Goiás City, capital of the captaincy, province, and State until 1937, when it lost its title for the newly built Goiânia City. Currently, São Vicente de Paulo Asylum is the only building outside the historic center, listed by the National Historic and Artistic Heritage Institute in the city that has been a World Heritage Site since 2001, according to the United Nations Educational, Scientific and Cultural Organization . With a frontage measuring 80 meters, it housed 20 to 40 inmates in average. Although insufficiently explored by historiography, the works that analyze Vincentians start from a very specific spatial perspective, as in the cases of Geraldo 2 Also known as the Vincentian Conference, it emerged in 1833, when it was created in Paris by the then student Frederico de Ozanam , with the purpose of being a lay Catholic assistance organization. It was named after the French saint Vincent de Paul , and its objective was to provide material assistance to the poor. In Brazil, which is currently the largest country in the world in terms of number of Vincentians, the SSVP arrived in 1872 and was consolidated during the First Republic. In Goiás, the first Conference was created in 1885 . Chizoti , who privileged the work of Vincentians in São Paulo; Ana Paula Magno Pinto , who analyzed the construction of the São Vicente de Paulo Hospital of Rio Pomba City in the Zona da Mata region of Minas Gerais; Rildo Bento de Souza , who studied the creation and consolidation of São Vicente de Paulo Asylum in Goiás; and, finally, Cláudia Neves da Silva , who deepened the relationship between the SSVP and the municipal government in Londrina, Paraná State countryside. In its first years of operation in Goiás City, the SSVP was committed to helping the poor with all their needs, which ranged from food, clothing, renting houses, sponsoring weddings and funerals, to notions of hygiene and behavior. However, the ever-increasing number of poor people compared to the reduced number of Vincentians conspired to make the project build a place where the poor could be assisted together. The idea arose in 1886, the year following the creation of the first Conference on Goiás soil, but its approval by the Central Council only occurred in 1888, and the works, in turn, began two years later. Its inauguration dates from July 26, 1909. The asylum was administered by the Administrative Board, composed of a president, a secretary, and a treasurer, elected from among the members of the São Vicente Society, and they did not receive salaries. Internal administration and the care for the residents, in turn, were the responsibility of the Dominican Sisters, who came directly from France to work in the institution. According to its Regulation, the primary objective of the institution was "to take in the indigent and keep them, giving them the necessary shelter, together with the consolation provided by the Catholic Religion" . Even based on the Christian charity discourse, the initial idea of the Asylum and its purposes can also be interpreted as an attempt to clean up and sanitize the public space that saw in the poor, beyond revulsion, a focus that radiates disease. This justifies the construction of the Asylum in a location far from downtown, as shown in Figure 1. According to the study by Souza , inmates were allocated to the institution without any criteria other than poverty and illness. Over time, the documentation revealed that a vacancy at the asylum was disputed: elderly people donated their homes on condition that they were welcomed and assisted; in the absence of an State Asylum, individuals with psychological problems from various cities were sent to the former capital; and in the absence of an orphanage, children were referred to the institution by local authorities . The register from O Livro de Registro de Entrada do Asilo São Vicente de Paulo Entry Book points out that between 1909 and 1946, 442 inmates were admitted, whose ages ranged from 1 to 115 years. Of this total, 281 were female and 161 were male. If we consider only interns aged up to 12 years, this number drops to 57 individuals, 31 female and 26 males, which corresponds to 13% of the total. With the apart of 1909, 1910, 1912, 1913, 1923 and 1925 years, in all the others, at least someone in this age group was gathered. In a study based on the institution's photographic records, Souza pointed out that the inmates, even children, were mostly black and had some type of mental illness. In relation to illnesses, among the total of 442 inmates, the document points to the existence of 44 types of illnesses . Among children aged 1 to 12 years, in turn, 12 illnesses were found, including contagious diseases such as syphilis, as shown in Table 1. .. . Based on Table 1, we can see the substantial number of inmates whose description of the illness was left blank in the entry register, which makes us assume that the individual did not have any apparent illness . Therefore, we believe that the notes in the document refer to the most evident characteristics in relation to the diseases, as a way, possibly, to better identify the inmate. Therefore, "disabled" and "crippled", which we can consider as the same problem, appear with two denominations. Furthermore, "[...] it would be premature to understand medicine at the level of science in this region. Empirical knowledge and accurate intuition were part of the physician's daily life, contributing to an appropriate diagnosis" . Still in relation to Table 1, the highest number, seventeen in all, refers to cretinism and idiocy. For Pedro Luiz Napoleão Chernoviz3 , idiots were those "[...] more or less completely deprived of intelligence from an early age" . Furthermore, the causes of this illness, "not always easy to determine", were credited to "moral affections, lively and painful during pregnancy the falls in which the child's head received shock, the fright, an inflammation of the brain, convulsions, can also be followed by the obliteration of intelligence". And once they become idiots, "[...] they are ordinarily in this state all their lives" . The cretins, in turn, would be those who were in one of the stages of idiocy, or its graduations. Imbeciles, for example, are "[...] idiots whose intellectual faculties are developed to a certain point" . That is, they are those that can be educated, as described by the author of the Popular Medicine Dictionary. We assume that "cretinism" and "idiocy" are synonyms, that they are distinguished by the stage of evolution of the disease. Because cretin "[...] is a designation for people retarded from birth, both mentally and physically. They also have facial disfigurement and can be deaf and mute." . Regarding the 57 inmates between 1 and 12 years old, 21 died in the institution; 18 were removed by family members or adopted and, finally, 18 appear without information. Children were sent to the Asylum by the judge behest, the delegate, or by doctor when their parents were in the public jail or at the São Pedro de Alcântara Hospital. Therefore, there are a large number that were withdrawn by family members. Regarding to orphans, from 1921 onwards, there was an intense mobilization among Vincentians for the construction of an orphanage, which would become reality the following year, enforcing a testamentary will of the Vincentian José Netto Campos Carneiro, as we will see in the next topic. Orphans who did not have any type of disease were sent to the São José Orphanage. And, finally, those who remained interned in the asylum were orphans and children with some type of illness and were under the responsibility of the Vincentians and the Dominican Sisters. --- Assistance: The São José Orphanage According to José Roberto do Amaral Lapa , who analyzed the condition of poor children in Brazil between 1850 and 1930, to be an orphan was to be "[...] housed in a shelter or under the protection of relatives, philanthropists , curatorship and guardianship legitimized by Justice or even wandering aimlessly". There are countless names of doctors who assume the mission of saving poor children, especially orphans, supported by hygienist ideas to civilize and transform Brazil. In the capital of Goiás at that time, the doctor who took on this disciplinary role was José Netto de Campos Carneiro, registering in his will the desire to create an establishment in his residence to care for orphaned children. Fulfilling his wish, the São José Orphanage was founded, a year after his death in 1922. José Netto was born on February 23 of 1855, the eldest son of an important family in the Catalão region, in the Goiás state southeast. Choosing medicine as a profession, he went to Bahia to study in 1876 and later specialized in France. He chose Goiás City to practice medicine and, over time, earned the nickname "father of the poor" by the locals. He treated and accompanied the underprivileged in their homes, justifying his proximity to the local population. Although he is remembered by writers, memoirists, journalists from Goiás as an important physician, he also acted as a politician. He was an important member of the SSVP, he helped in the construction of the asylum, as well as showing concern that there was no orphanage in the city to shelter underprivileged children. We recognize José Netto as a person of his time, who sought in that context an active presence and participation according to Christian principles. His Christian commitment accompanied him and extended to the desire to organize society in search of civility and progress, following the precepts of science and reason. Gisele Sanglard stated that the way in which philanthropic works took place in Brazil, especially during this period, was linked to the project of those who defended it. Leaders, especially doctors and law graduates, claimed that the charitable model was a system that would not bring progress and civility and, therefore, should be abandoned. This change occurred gradually and shared space with charitable works, although there was an effort to "[...] be perceived more as preventing misery than a way to alleviate it." . His death occurred in 1921, and as he was not married and did not leave direct heirs, the division of his assets occurred by testamentary will, in which he specified that part of the assets would go to his family and another to charity, including the donation of his professional instruments for São Pedro de Alcântara Charity Hospital and the federal public debt policies for the Diocesan Seminary . The remainder of its assets were used to build an establishment for orphans under the responsibility of the diocesan curia . The remainder mentioned in the will were 75 houses located in the city. The income collected from renting these properties would be used to maintain the orphanage and pay the two Dominican Sisters, who would be responsible for the institution. All assets left to his family would be for usufruct, that is, when they died, they would also be donated to the orphanage. Although he owned several properties in the city, the choice of the institution's headquarters was his house, which suggests an intentionality in linking his name to the orphanage. In the grant application documents, the description was of a place that met the hygiene precepts of the time. However, in 1957, a complaint in the local newspaper exposed the precariousness of the establishment, and at the request of the Trial Court Judge, the building underwent an extensive renovation, finally losing the characteristics of a family residence, and gaining forms of a philanthropic building, spacious and airy. Regarding the orphanage organization, the diocesan curia, designated as financially responsible, organized an administrative board composed of a provider, a treasurer, a procurator and two secretaries . For the internal direction, the Dominican Sisters were chosen, who already took care of São Vicente de Paulo Asylum and Santana College, in addition to helping at São Pedro de Alcântara Charity Hospital; their responsibility at the orphanage was almost similar to that of the asylum and included ensuring and taking care of the daily life, education and construction of the Internal Statute that included their attributions and remuneration, as well as the obligations of the residents . At the beginning, when they were admitted, they did not participate directly in the decisions of the Administrative Board, which changed in 1953. Of those Board positions, only the provider was chosen by the Diocesan Curia. In this sense, the composition of the positions was occupied by the Dominican Sisters in exercise, plus the position of ecclesiastical assistant, strengthening the commitment between the institution and the Catholic Church. When Jose Netto appointed the Diocesan Curia as the guardian of his heritage and post-death work, the doctor established the religious and moral principles that the orphanage would follow, as stated in its objectives "[...] for maintenance and moral education, religious and domestic life of poor orphans " . Admission would follow a criterion also established in the statute, which did not differ much from other orphanages. Orphanhood was confirmed by a death certificate and health conditions by a medical examination. The diligence verification of the living father or mother followed the religious rules, not being able, for example, to maintain relationships considered immoral, having to exercise an occupation and be Catholic. The second requirement, about the age, we emphasize that children under three years old and over 12 years were not admitted, although their permanence continued up to the limit of 18 years old. At Orphãs Asylum in Campinas, São Paulo, for example, admission followed the same pattern, however, it accepted children from zero to twelve years old, including babies. According to Ana Maria Melo Negrão, on the Misericórdia Orphans Retreat in Rio de Janeiro, the inmates "[...] were prepared to be mothers or domestic servants, with four hours of study and the remaining hours for manual and domestic work, room cleaning, washing clothes, knitting, meals and leisure time, under strict schedule" . The same happened, according to the author, at the Orphãs Asylum in Campinas , and in several other establishments of the same segment: the withdrawal, the discipline of female behavior and the protection of their "honor". In the subsidy requests from São José Orphanage sent to the municipality, there is a reference to medical and dental care, and "[...] a primary course in accordance with official regulations, with specialized teachers", the Dominican Sisters in this case . The specialized teachers would be the Dominican Sisters who worked in the orphanage, some of them being assigned -with the appropriate training -to teach the orphans to read, write and count. These three operations were part of the so-called primary education. An important data tool about the orphans from Goiás are the photographs found in the institution's documentation. These records can give us access to the heterogeneity of the orphans, in addition to allowing more detailed analyzes. As we can see in Figure 2, there are 49 children of different ages. This number varied depending on the length of stay and the financial situation, being relevant the indication of a person known by the administrative board and the final approval of the archbishop. As stated in the following record in the minutes, when "[...] approved the admission of an orphan of father and mother, underage established and presented by the pharmacist Dr. Elisio Campos. As it was decided, their permanent stay will depend on the authorization of the Dear sir. Archbishop" . Also noteworthy in the image are the white inmates and the black inmates . In addition, the orphans were not in uniform, but in light-colored dresses, most of which were very simple and without great details of lace, flounces, or ribbons. All are barefoot and look sad and even downcast. Everyone's hair is short, something quite common for such institutions. We can observe that physically there were no girls with "contagious or disgusting disease, or physical defect that makes them unfit for work" as stated in item "d" of the statute. Those who found themselves in these conditions went to the São Vicente de Paulo Asylum. In 1964, São José Orphanage changed its name to São José Housing, this change in no way changed the principles and objectives of the institution. It was only in the 1980s that a profound change took place: Dom Tomás Balduíno, bishop of Goiás, closed the institution after an analysis by a technical team they concluded that, [...] with the aim of sheltering orphaned poor and destitute children, until 1979 São José Housing carried out an essentially welfare practice. The admitted children were female. Prepared to work as maids, when they left the Orphanage, they were generally sent to elite families. This demonstrates the interconnection between the Entity and the high bourgeoisie and Paraense Orphelinat , "[...] the girls welcomed there were protected from poverty and ignorance and became useful women in Pará society" . The author states that the two institutions were also sought after by wealthy families to serve as domestic labor . The withdrawal of orphans from establishments such as São José Orphanage took place through an employment contract, as stated in the document . The process did not take place with the immediate withdrawal of the orphan, she was initially taken for domestic services at events or parties, and subsequently, with the family's interest in her placement. According to historian Carla Bassanezi Pinsky, in the first half of the 20th century, "[...] there seemed to be no doubt that women were, 'by their nature', destined for marriage and motherhood. Considering it an integral part of the feminine essence, this destiny appeared to be virtually indisputable." . However, this role seems even more reinforced when it comes to poor asylum girls, in which the institution represented "saving their honor and guaranteeing their destiny", within the moral precepts of the time, withdrawn from the social environment and isolated from what was considered dangerous. In the case of the Goiás institution, a new proposal was drawn up by the Human Rights program at the then Catholic University of Goiás, excluding the internment model that obeyed moral and religious rules. We observed that the orphanage established a welfare model based on the model of "educating" and "civilizing" the poorest groups, attending the domestic labor needs of a given social group. While Asilo São Vicente de Paulo took care of the sick, regardless of gender, and orphans, the orphanage only helped healthy orphans. In this sense, the objectives inherent to each childcare establishment were linked to the health condition of the orphan, thus determining their place of asylum. In Goiás, from the 1950s onwards, the children of leprosy patients, for example, were sent to the so-called "preventoriums". --- Education: The Afrânio de Azevedo Preventorium Prophylactic measures to combat leprosy in Brazil were precariously anchored in the institutional tripod composed of: "Dispensary", with the function of discovering, selecting, admitting patients, examining their contacts and educating the masses; "Leprosarium", which sought to isolate, assist -materially and morally -to treat and recover the sick, returning them to the social environment; and "Preventorium", which collected the healthy children of leprosy patients, both those born in leprosarium and those from the homes where the patients left. In the state of Goiás, in the 1920s, institutions for the isolation and assistance of leprosy patients used public health discourses to segregate lepers and their families, such as the Pró-Lázaros Charitable Association in Goiás City, the Macaúbas Leprosarium in Bananal island4 , the Helena Bernard Leprosarium in the city of Catalão and the São Vicente de Paula Leprosarium in the city of Anápolis. In the 1940s, welfare and isolation gained strength with the construction and inauguration of Santa Marta Colony and Afrânio de Azevedo Preventorium in Goiânia capital . In Brazil, "despite international recommendations which, since the 1920s, advised against isolation of the sick person, the prophylactic practice adopted was that of compulsory isolation", which contributed to spread prejudices in relation to the disease; whose stigma affected "[...] people who never had the disease, as was the case with healthy children born to leprosy patients", forcing them to be hospitalized in preventoriums in order to hide their situation . In this sense, preventories were characterized as institutions of support for children born to lepers who were hospitalized in colonies/lepers. With the creation of the Federation of Societies for Assistance to Lazarus and Defense Against Leprosy , the need to create preventoriums to shelter only the children of lepers came from the difficulty in finding any other institution to support children and the difficulty in finding an alternative to welcome healthy children made the parents or guardians of the children, who were sick, refuse to carry out the appropriate treatment or even remain in colonies/leprosarium where escapes in these cases were frequent. The preventorium/teaching establishments in Brazil had, among their obligations, to offer the inmates basic school education and the possibility of industrial or professional education through workshops designed from the demands of each State. The physical structure was similar in all buildings, with no concern for the privacy of the inmates. The good functioning of these institutions came from the imposition of order and discipline, even if this socially harmed the inmates . And the Regulation of Preventoriums for the Sons of Lazaros installed in Brazil defined and governed their operation. In a report by the Ministry of Education and Health in 1947, it was stated in Brazil that there were 27 preventoriums that were already in operation. For the reality of Goiânia, unfortunately, we were not able to obtain the documentation pertinent to the basic studies of the inmates in the first decade of operation of the establishment, that is, it is unknown if education was provided in the institution, or if the creation of the Eunice Wever state school was designed with the aim of providing "primary education". What is certain is that upon reaching the age required to supply the labor force for the consumer market, the inmates and those helpless due to orphanhood would be directed to a school for apprentices and craftsmen or similar institutions. The master key would be in expanding the range of action of hygiene and teaching to make the school fulfill the double desideratum of instructing and moralizing, to thus constitute one of the modalities of hygienic boarding schools with the motto that the modeled body and sanitized would enable a healthy mind . School and technical education, previously seen as a national problem, became during the Vargas Government and in subsequent governments a discourse component of building a modern society. An educated and disciplined body was what modern Brazil needed for the industrialization that Vargas implemented, and Goiânia, the new capital of Goiás, from 1937 onwards, would not escape its destiny of a healthy city and healthy citizens. With the support of the medical and modernizing discourse of the new capital of Goiás State, it was founded in 1949, with the support of the Liberdade Masonic Lodge and the Goiânia Union, the Abrigo de Menores Abandonados Foundation , which sheltered children with the aim of offer them professional education. The foundation sheltered children who were abandoned or who came from the Afrânio de Azevedo Preventorium in order to teach them a profession. The criteria for entering the association defined by the Internal Regulations stated that the institution would admit "[...] people, without distinction of race, sex, nationality, religious or political belief, in full enjoyment of their civil rights" . Each child and adolescent referred to FAMA should present identification documents and a responsible person; in the case of inmates at the preventorium, the director was responsible. Preventorium inmates were referred to the FAMA after completing primary education. At FAMA, they received teaching from gymnasium, high school and learning workshops. The School education in childhood underwent a reformulation that accompanied the changes of the new century, an example of these changes were the notions of modern pedagogy established by the New School since the 1920s. The New School, which according to Cunha disregarded the family teaching, based that education happened in the socialization of children and young people from the revelations of Psychology, Biology and Social Sciences. Teaching a trade, as happened at FAMA, was, even if at a slow pace, a way of promoting the professionalization of children and young people who lacked family support and resources to improve their skills. In addition to the organization of the classroom in a traditional model, the same currently used, a detail observed in Figure 3 is the didactic work of Ariosto Espinheira5 , Brazilian Childhood, an Escola Nova literature that was used in schools in the 1950s and 1960s. Still in relation to the image, the children are dressed in the institution's uniform, which consists of a white shirt in long or short sleeve versions, shorts or dark pants and black shoes. Formal education was based on the separation between the education of girls and boys. According to Marcilio , while the boys were welcomed by the master craftsmen to learn on the handicraft workshops, the girls had as one of the few options the profession of primary school teachers. The vocational education 6 was not aimed at children and adolescents with affluent financial situation, it was poor children and adolescents who learned the occupation. The interns at the preventorium and at FAMA fit the profile of individuals who, despite lacking family education, were seen as bodies to be disciplined, modeled and used as industrial labor. FAMA offered courses in locksmithing, laundry, agriculture, graphics, saddlery, among others. The courses aimed at training these children and their insertion in the labor market. In the analyzed iconographic records, we noticed the lack of safety and health in the workshops. Figure 4 shows a working day at the locksmith shop, where three boys learn the task and carry out activities with little or no safety equipment. The child in the background is even without shoes. The need to learn an occupation went beyond the Union's attempt to specialize the poor in labor. The permanence of inmates in preventoriums was defined by the regulation that defined the maximum age of 18 years for boys and 21 years for girls. Most of these young people did not have families that could take them in, either because of the compulsory hospitalization of their parents in the colonies that housed leprosy patients -in Goiânia it was in Santa Marta Colony -or because of relatives and other family members who denied contact, impregnated by the stigma and fear of the disease. Learning a profession meant survival for the children of Lázaros, who faced abandonment, lack of family reference and prejudice from society since their childhood. Having a profession was the alternative for many to build a "dignified" life in the face of an exclusionary society. The discipline preached and put into practice by institutions such as Afrânio de Azevedo Preventorium and Abrigo a Menores Abandonados Foundation, which covered study and work routines, was seen as a way of controlling and shaping these children and young people for the future, beyond from the walls of schools. It was believed that without a profession these young people would be doomed to an uncertain future. However, recent works consider the fact that Brazil is currently endemic in relation to leprosy "[...] demonstrates that the policy of compulsory isolation, also extended to the descendants or inmates, was ineffective for controlling the disease, in addition to in numerous psychosocial disorders to those affected by the disease and their families" . --- Final considerations As we stated at the beginning of this work, it would be presumptuous of us to propose an in-depth analysis of the three institutions; separately, each of them would yield interesting articles. However, by proposing this study with the three, even aware of our limitations, we aimed to understand the process of institutionalization of childhood in Goiás in the 20th century, presenting the asylum, the orphanage and the preventorium from the focus on health, assistance and education. There are several gaps to be filled in future studies. The São Vicente de Paulo Asylum represented, until the construction of the Orphanage, a space where the healthy and the sick were sheltered, regardless of age. To be welcomed, the individual only needed to be destitute, willing to be helped, and the main thing, to be Catholic. After the creation of the Orphanage, in 1922, the healthy girls left the asylum and were sent to the new institution. In the asylum, there were sick children and orphaned children who had no one to help them. Currently, the institution no longer receives children, only adults with mental problems; the more than 60 inmates, most of whom are elderly. There is no way to dissociate São José Orphanage from its creator, José Netto Campos Carneiro. The medicine and the fact that he was constantly involved with social issues in the city established the image of a "charitable man" for the doctor from Goiás, who we consider a philanthropist. This means realizing that José Netto allied his intention to be not forgotten by history, by leaving his own home for the Orphanage to operate, with his medical ideas. He transformed his heritage into a hygienist and moral standardizing project. Institutions such as São José Orphanage sheltered girls in a system of separation from the social environment, from the so-called "dangers of addiction" and from everything that was considered immoral, especially those included in legal and, mainly, religious norms, which is why they had the Dominican Sisters. The practices introduced at the Orphanage fulfilled the role of molding girls to follow the expected female behavior at the time. The Assistance, mainly in the Education field, from Afrânio de Azevedo Preventorium to the children of lepers from Goiás, compulsorily hospitalized in Colônia Santa Marta, provided minimum conditions, on the part of the State, so that these children could develop. However, the reception received, through an intense and severe formal education, excluded the lack of a family model. We assume that these children, although free of leprosy, were also victims of this process of stigmatization, of the disease and the patients. Separated from parents, ignored by family members, for many, the only thing left was the preventorium. We do not want, in any way, to romanticize this process, we know that such institutions of forced coexistence represented deprivation and suffering, with physical and/or psychological abuse. However, despite this, the children learned a professional trade, aiming at their reintegration into society when they reached the age of majority. For many, the suffering in the preventorium could have been avoided, since in the 1950s leprosy-hanseniase was already able to be controlled with medication and not by exclusion.

The aim of this article is to analyze, from the point of view of health, assistance and education, three institutions built to shelter children in needy in Goiás in the 20th century: the São Vicente de Paulo Asylum (1909) and the São José Orphanage (1922), both still in operation, located in Goiás city, which was the state capital until 1937, and Afrânio de Azevedo Preventorium (1943), which operated in Goiânia, capital since then. The São Vicente de Paulo Asylum focused on health, that is, it sheltered patients, regardless of age, or male orphans; the São José Orphanage, in turn, prioritized assistance to poor orphans and, finally, the Afrânio de Azevedo Preventorium proposed the education of its inmates.

INTRODUCTION International concerns persist about the state of men's health with the Global Burden of Disease Study 2010 showing that across the globe women have greater life expectancy than men. In addition to longevity, years spent free from illness or disease also show sex-differences: in 2010, global male healthy life expectancy was 59Á0 years and global female healthy life expectancy 63Á2 years . Within the UK, where the current study is situated, this life expectancy gap is closing but significant problems still remain for particular groups of men, specifically those living within areas of multiple disadvantage . The reasons for these differences are undoubtedly complex and contested with explanations including men's biological fragility, men's greater exposure to occupational health risks, men's greater engagement in individual risk taking behaviour and men's less efficient use of health services all said to play a part . These explanations are often linked to differing notions of 0 masculinity 0 which themselves are also often contested. Some present 'masculinity' itself as a public health problem with men being their 'own worst enemy' as their engagement in negative lifestyle practices, risk-taking and reluctance to access services-linked to socialized masculine ideals of men as; strong, invulnerable, in control, and risk-takers-subsequently leading to their poorer health status . Others suggest that trying to live up to these socialized masculine ideals, and often not being able to, causes the pressure and stress that makes men 'victims' in terms of the associated 'gender role strain' and negative health outcomes attached to this . Whilst there is not space here to fully consider the relationship of contemporary theories of masculinities to the health promotion field, it should be noted that such prior explanations have tended to be mainly replaced by more nuanced theoretical frameworks. These frameworks recognize masculinities as neither inherently 'good' or 'bad' but as fluid and diverse, and as heterogeneous, with different groups of men having varied experiences, demonstrating varied masculinity practices and having access to differing health resources and therefore health outcomes. We have written further on this complex relationship between masculinities and health elsewhere [blinded for peer review]. Despite these clear sex-differences in life expectancy, and possibly because of these contested explanations about the causes of these differences and the role of 'masculinity in these, sustained public health and policy responses have tended to be patchy and often slow to develop . Within this global context then men's health has been said to be the 'Cinderfella' of public health, being generally overlooked whilst simultaneously 'hidden in plain sight' . For those concerned with developing health promotion interventions, engaging men has been shown to be challenging with barriers to engagement focusing on a reluctance to break from masculine norms alongside practical barriers such as; GP opening hours, location of health facilities, unpredictable waiting times and the 'feminized' feel of many primary care services . However, empirical work also demonstrates that sexdifferences in help-seeking are more complex than often thought and that despite such barriers men are keen to engage with health care . Linked to this, numerous studies have demonstrated that, given the right context, engaging men in health promotion work is possible . Sensitive and innovative ways and approaches have therefore been shown to be required to successfully facilitate public health work with men and fathering has been highlighted as one way of legitimating such engagement . Fathering can be seen as an important juncture within the temporal horizon of adult life, a key transition point and one which can be a 'shift point' for men's consideration of health and health practices . The role of fathering in relation to men's health has become a site of academic interest as academics and practitioners seek to understand how becoming a father impacts and interplays with men's health practices and outcomes. Recent research suggests that men describe the notion of 'healthy fatherhood' as being important to them, demonstrating that fathering and health are increasingly being discussed as significant by men . There are also social trends towards entry into fathering representing a focal point for health discourses, with fathers now encountering social scrutiny around their health as they begin the journey into parenting in the way mothers previously have . This conceptualisation of health and fathering as linked can be seen as part of the broader narrative around 'new fathers' and 'intimate fatherhood' . Similarly, services are more frequently considering the need to engage with fathers for better child and maternal outcomes . Collectively then fathering is increasingly being viewed as a time of, and possible opportunity for, behaviour change. Fathering, within the wider family setting, therefore, has the potential to be important for health promotion. Although under-theorized and under-researched in relation to other settings such as schools, workplaces and prisons , there is capacity for the family setting to be harnessed to support the development of healthy children, families and societies . Traditional family structures are now being accompanied by structures that are more diverse and heterogeneous. Children may be raised by married parents, co-habiting parents, single parents, step-parents or same-sex parents and many children move in and out of these varied forms during their childhood years. Despite these changes, families remain situated within a wider social, economic and political climate. Efforts to address the health of families must therefore recognize these influencing determinants. Novilla et al. suggest that the 'ecological perspective serves as the unifying framework for defining family health ' and McLeroy et al.'s ecological model of health promotion, drawing prominently on the work of Bronfenbrenner , acknowledges that tackling health and health inequalities is relatively futile without acknowledging micro, meso and macro processes. While structural determinants of health are crucial factors in tackling health inequalities, the contributory role that family relationships and systems play in supporting health within this multi-level context is critical. However, it is arguable if the public health practice or policy has fully utilized or embraced families as a viable setting for health promotion interventions . One of the critiques of settings-based health promotion is the potential for such approaches to 'exclude' certain sub-sections of the population -unintentionally exacerbating inequalities . Within the family context, fathers may be one such group. Fathers have a significant impact on child health and development and yet a recent systematic review suggests that family interventions, such as parenting programmes, rarely target men, or make a dedicated effort to include them . This paper draws on data from a two-year evaluation of a fathers' project situated in an area of multiple deprivation in the North West of England. It focuses on the key constituents of the project, predominantly fathers and their children, but also on the women who were involved on the periphery of the project and on the project staff. The project aimed to improve the wellbeing of the men and their children and is described below. --- BACKGROUND In 2013, a social enterprise, based in the North West of England, pitched a social innovation project to a local clinical commissioning group . The aim was to investigate the links between fathers' and children's wellbeing with a view to improving these. Both commissioner and provider agreed this was an issue because of limited information about links between the two and a perceived imbalance between support for men's wellbeing compared to women's, throughout the life course. Rather than assess need with a view to delivering services, the proposed social innovation approach was based on the premise that the community itself could find and share its own wisdom to help build resilience and sustainability. The approach chosen was 'positive deviance' , a form of asset-based community development that aims to build on strengths using the existing skills and wisdom of the community. PD has a strong track record of success in countries worldwide and has been shown to build confidence and self-esteem on issues as diverse as female genital mutilation, re-integrating child soldiers back into communities and overcoming under-nutrition in Vietnamese children. It is based on the recognition that in every community there are certain individuals or groups whose uncommon behaviours and strategies enable them to find better solutions to problems than their peers, while having access to the same resources and facing similar challenges . The specific proposal to the CCG was that, with support and facilitation from the social enterprise, the community itself would identify fathers with uncommon behaviours and work with them to find ways to practice these behaviours father-to-father. The community would literally 'act itself into a new way of thinking' by changing men's current social practices. Within such work, progress is fed back regularly by the local people involved to the wider community enabling residents to follow and become part of the developmental journey. The work was based on the PD 4-step process , locally referred to as the '4Ds': • Define the problem for dads in this community • Determine common practices • Discover dads who have found successful ways of dealing with the problem • Design a means of sharing these successful ways. An action learning approach was agreed, with the overarching question being: 'If we improve the wellbeing of fathers by sharing the behaviours of successful fathers, will this improve their children's wellbeing too?' The next issue was to choose a community. One particular place, in the top 3% in the index of multiple deprivation, was identified as being of interest. Within this area, there were distinct variations in primary school performance, which may or may not be attributed to varying parental input. In addition, the area had not received much developmental input for some time and was often talked about negatively. Thus, finding ways that residents themselves could lead and deliver a step change would be more likely to attract attention and be recognized as significant. The town has a population of 17,000, spread over 5 quite distinct estates and served by a small district centre. The recent literature identifies that particular group of white British males are more likely to suffer multiple disadvantage and so although increasingly multi-racial, this town was also chosen because of the prominence of such men. Local people often were born, grew up and died without leaving the town. Early engagement provided the following reflections on the community. Generations lived in close proximity and family dysfunction was commonplace. Family structure was mainly matriarchal, with men commonly described as being untrustworthy and disposable. Service providers often described many 'tumbleweed moments'-engagement activities and events often ended in residents staying at home and workers sitting alone. Local workers liked the idea of using PD but doubted it would work in this town. Residents said such pessimism developed because the community had been alienated by years of 'box-ticking managers' who did not really care and let the community down when funding or initiatives ended -projects mainly came and went and lacked sustainability. Despite this somewhat bleak picture, the project team was welcomed. Local workers kept open minds throughout and proved willing to help and respond flexibly as the work developed. The importance of independently evaluating the work in a way that understood and shared the project values was recognized from the outset. --- METHODS The philosophy of the evaluation was consistent with the PD approach adopted within the project. This included establishing close working relationships with the team developing the work , with the fathers engaged, and adopting a 'participatory evaluation' approach to data gathering which recognized and respected community and stakeholder perspectives. The approach was therefore underpinned by collaborative dialogue and an emphasis on co-production -key tenets of participatory methods in health promotion evaluation . As an evaluation team, we regularly reflected on the collaborative dialogue and participatory processes and were conscious about the critique that such philosophies can be conceptualized as tokenistic or fail to fully represent the community, in this case fathers, by privileging dominant voices . The notion of 'triangulating' data sources, however, was central to help ensure a holistic and 'rounded' picture of the process and impact of the project. The overall approach drew on 'developmental evaluation' principles which are useful when innovative programmes are in their infancy . The focus of the evaluation was therefore on fostering and sharing learning to support the programme delivery . Evidence gathered was derived from four primary sources: 1. Project Manager's and Engagement Worker's reflective diary entries completed between August 2013 and May 2015. 2. Six in-depth interviews from fathers participating in the project. 3. Seven semi-structured interviews from women within the local community 4. A participatory workshop with thirteen children engaged in the project. The first three elements of this evaluation were led by and the children's work led by . All elements went through appropriate ethics review at their respective institutions. The interviews with fathers were conducted by the project manager. They were primarily completed in year one. As recognized in other research , and described in the background section, this community was wary of 'professional outsiders'. In discussion with the project team it was therefore deemed preferable not to disrupt the emerging relationships being forged by introducing additional 'professional outsiders'. This is in line with participatory evaluation approaches where there is a shared responsibility between the evaluator and participating stakeholders and the evaluator is recognized as a facilitator and critical friend rather than an expert leader . These interviews explored the men's experiences of involvement in the project and how this linked to the previous and present context of their lives. --- Evaluating fathers' and children's wellbeing in England Interviews with women from the community were completed in year two, by which time a level of trust had developed enabling the academic evaluators to complete these interviews. They were recruited via a Facebook post on the project website and through project workers. Attempts were made in sampling to ensure representation across a 'typology' of women that had been identified by the project team: 'fans of the project'; current partners of project members; former partners of project members and; 'critics of the project'. The academic team liaised and negotiated with the project team, the dads who had been most engaged during year one and the women themselves to agree on the timing and venue . The interviews explored the women's views of the project, the activities that were conducted, and changes they had seen within men they knew who attended and their children. A female researcher was engaged to conduct these interviews. Participatory methods with children and young people involved those aged between 18 months to 16 years of age. Recruitment and sampling was done opportunistically through a weekly father and child Saturday clubdata gathering was also done during one of these clubs. Thirteen children from six families took part, two were girls. The approach created a stimulating environment with varied activities which provided opportunities to contribute in a comfortable and facilitative setting. Data collection techniques involved those outlined in Table 1. Interviews with the fathers were transcribed. The reflective diary data along with the interview data from the fathers and the women were analysed thematically, looking for both semantic and latent elements and developing emergent themes . Initial coding, categorising and theme development was done by one member of the team. The wider research team then completed a process of iterative reading of interview transcripts to confirm and adjust categories and themes where necessary. For the children and young people, audio or videorecorded data were converted to text manually for framework analysis. The frame was constructed on fields of impact, context and mechanisms. For the purpose of this paper the above data analysis was then integrated and the following themes formed from this integration: Emotional openness; Offering alternatives; improved relationships; and sustainability. In presenting the findings identifying information has been omitted to help ensure anonymity. --- FINDINGS Findings are presented thematically to show crosscutting issues. Anonymized quotations are used to illustrate key thematic categories. --- EMOTIONAL OPENNESS 'I tell you what, I was very depressed when I first came to the group . . . that first day I've never seen a bunch of men open up so much and it was a sight to see' Issues of 'emotional openness' were brought up in many and different ways across the datasets. Dads themselves spoke about the problems that lack of emotional relationships with their own fathers had caused (some also --- Activity Description Individual and small group interviews Children and young people were offered the opportunity to talk individually or in sibling groups to a researcher. These discussions were audio-recorded. Other informal discussions occurred without recording but researchers made notes about these immediately afterwards. Video-diary booth Participants were allowed opportunity to paint on the walls of this small enclosure before offering a video-record of their thoughts to specific questions, phrased as required for different age groups. "Post-It" wall Post-it notes were available for participants to attach to a board with their thoughts and ideas. Contributors were then asked to prioritise the collection of comments. Play-and-say Younger children were encouraged to play while talking to a researcher in the simplest terms about their experience and perceptions. Post-card to the Research Team Participants were encouraged to write responses to simplified versions of the research questions on a large-scale post-card to be posted to a recognized figure involved in setting up the project. --- Wish tree Participants were able to write their responses on a paper leaf and hang them on the wish tree. spoke of positive experiences they wanted to emulate). The most numerous were descriptions of traditional breadwinning, distant fathers who, while commended for putting food on the table, provided little in the way of emotional support or advice. In contrast, they characterized a good father as one who could show emotion, affection, closeness and empathy; they recognized the need for emotional sensitivity in meeting their children's needs: 'You need to be sensitive when it comes to your children, you need to address their problems at the end of the day.' The women interviewed talked slightly differently often highlighting the benefits of the specifically male company for the men and recognising the opportunity thus created for sharing advice and experience. Some recognized that this often involved the interactions having a therapeutic element: For the project team, these issues were well recognized, noted in the project manager's reflective diary, and the question raised about whether 'emotional openness' is, in and of itself, a positive deviance behaviour for men in such communities. This seems an important question given that being emotionally restricted is linked to less mental health helpseeking for men and implicated as a risk factor in male suicide . Simultaneously, responsibility, particularly being an involved parent, allows men to position mental health helpseeking as a logical and rational action . The creation of a safe space for practical and emotional sharing engendered by the project generated strong bonds amongst many of the men and provided feelings of belonging and of being valued . As one woman states: 'I know they were all supporting each other, ringing asking how he was was . . . .I think it's part of feeling belonged and wanted.' This linking of enjoyment, sociability and the opportunities this creates for alternative ways of being , has been recognized as particularly important in health promotion work and mental health promotion work with men . --- OFFERING ALTERNATIVES The complex challenges faced by individual fathers , families and the wider community were factors identified early on by the project team when consulting with dads and community members during the 'defining the problem' stage of the PD approach. Men, and specifically men within areas of multiple disadvantage, are known to show more 'maladaptive coping' mechanisms especially during times of stress or emotional anxiety. The interviews with dads showed that many had previously used such negative coping mechanisms and had also often felt isolated and left dealing with problems alone. There were clear inhibitors for the fathers to become the parent that they wanted to be. Several had tried to access informal networks and statutory support services, either directly for parenting advice, or as a way of improving personal health and their capacity to engage as a father. During such encounters, the men commonly described support that was tailored to the needs and preferences of women. There were numerous examples where men had felt 'pushed out' of vital, informal, 'mothers' networks at school, and also from a range of statutory services -including maternity and post-natal services, and children's services in general: 'I'd interacted with midwives and hospitals, but it's so female orientated. . . obviously the focus has to be on the woman because she's pregnant. . .but there was just no dad and that made me feel that maybe I'm. . . I shouldn't even be here then! And it was just about the mum and baby, mum and baby. You pick up a book and its mum and baby. So I kind of felt pushed out in a way.' The project represented and created a male space where people would listen to, share and understand their problems. They felt they could be honest and open amongst other dads who were going through similar issues. This engendered trust and responsibility between and toward each other, providing validation that their experiences were common and that solutions to certain issues, or support to endure them, could be found. In this context, the men broke free from their isolation realising they were not alone: '. . . that day . . . every bloke stood up and said exactly the same thing as I did. They had exactly the same problem. So it wasn't just me, and that made me feel a whole lot better. Knowing that you're not on your own is massive. . . because you do start to isolate yourself and you think 'why is it just me?' You start to go into yourself.' Linked to the issue of 'emotional openness', the project offered alternatives to the maladaptive coping and marginalisation the men previously experienced. Involvement helped create alternative ways of coping and allowed them to share experiences and solutions with other men in the community. These more positive social practices were linked to an improved sense of self developed through involvement with the project: 'Once I started engaging I felt important for a huge amount of reasons; being talked to like I was human . . . I felt important when I was asked to do some judging [during a competition on what children value in their dads]. It's quite official, I loved that and to be asked was a massive thing for me.' These experiences facilitated increased responsibility and a concomitant sense of valued identity for many dads including motivating them to become involved in volunteering and employment opportunities that they previously would not have felt skilled or confident to do: '. . . all of a sudden I've got all of these opportunities that . . . and it's because I've gone with it [the project] and I'm doing these things . . . opportunities just keep opening for me that wasn't there before.' This change in confidence, and the practical changes of helping others and being more involved in the community, was also noted by the women interviewed 'the change in him is just . . . I don't know what to call it, it's like a miracle . . . it's changed his life'. To this extent, the project was often presented as filling a gap for these men in helping them deal positively with difficult life circumstances and shifting previously negative coping mechanisms 'There was a void there and I used [the project] as a ladder really.' Part of the nature of this 'alternative' offered was in creating a different, more salutogenic , space within the community for the men away from previously damaging friendships and settings, as one of the women puts it: 'They're not sitting at a pub they're not drinking all the time wasting their money. It's not costing them so they've still got a place they can go.' The children involved also seemed to value a dedicated, alternative space and time to be with their dad. Commenting on the weekly Saturday club one of the children suggested: The project had an impact then on a range of the men's intersubjective encounters; that is, on their relationships and the way they engaged with others. --- IMPROVED RELATIONSHIPS 'Now I spend more time with my dad, and it's special time just for me.' The positive impact of the project for the children was at the forefront of many of the men's and women's accounts and well recognized by the project team. Many women also pointed out the positive impact for themselves in terms of having new experiences that they could share as a couple or that the children could share on return from their involvement. They all noted the wider changes in the men's social practices discussed above and recognized some of the shared practical parenting skills gained through the project suggesting the PD approach of sharing good practice 'father-to-father' within the project was happening. As one man states: 'We're all parents, and that's what's important, we're all getting ideas. It was clear from the first meeting that we could learn skills off other people.' The women's narratives about changes they saw in the men's relationships with their children were also prevalent: '. . .It's good for children as well as the dads, the kids know that they've got a dad to go too; its two parents not just the one.' . . .and the data from the children even more compelling: 'Something changed between us. We weren't good together before. Our relationship is better now. We spend more time together; do more things together. It's the same at home and when we go out, too. It wasn't so good before.' The change in the amount of time spent with the children and the nature and quality of that time was clear. One effect of this was that new role-modelling and positive attitudes offered by the dads were mirrored within the children, as evident in this text sent to the project engagement worker: 'Both E and K riding bikes without stabilisers for the first time today! Confidence in myself is rubbing off on them. They never attempted it before. Very proud daddyJ' The impact on relations was very much apparent within the wider family context. All data sources suggested a more cooperative home and a community spirit that was clearly an 'over-spill' from the effects of the project. Many of the men had experienced difficult relationships with partners and ex-partners, especially in relation to having access to children. At worst, these difficulties generated or exacerbated the range of 'maladaptive coping' mechanisms mentioned earlier making situations worse for all involved. With the changed practices developed through the project these relationships often became less strained as the focus became increasingly child-centred: 'We talk a lot more now. . . In a way we are doing it for the kids. Before he'd come in and be like 'hi. . .', but now we are communicating more. That's one good thing. . . Considering we couldn't stand each other then, now it's 'let's all be friends'. So good.' In this way, the often negative experiences and views women had of men within the community were challenged and shifted. As two of the women note: 'Everybody should experience seeing a group of men acting in this responsible, mature, supportive way. Particularly women like myself who've not seen that growing up.' 'A couple of dads have a bad reputation, they've all had a bad reputation in a lot of women's eyes! But now you look at these dads and they're more approachable and not like all those dads we used to hear about.' Given that men, women and families live within sets of intersubjective relations it is clear that the impact on the men involved had benefit well beyond that directly experienced by them reiterating the point about the importance of recognising the potential of the family as a health promotion setting . The difficulty with many community projects though is sustaining them, especially in times of financial austerity. There have been conscious strategies by those involved in the project to avoid it being 'a service' delivered 'to' the men, or a 'support group' that serves only the relatively small group of men involved. Instead, there is on-going intent to maintain a focus on the programme as one owned by the community. This has not been easy, as the project manager notes: 'I'm clear that we are not trying to develop [the project] as a service but as part of the resilience of the community, but we are pressured by both services and residents to call it a 'service' and treat it as such, with the risk that residents will become passive not active.' Nevertheless, this strategy is in line with a PD approach and such community ownership is likely to engender sustainability as it is developed through local people's skills, commitment, and social networks which are recognized as vital resources for health . The project team has been committed to this endeavour though it was slow to develop through the first year: 'One dad asked if it would be ok to meet some dads on [local venue]. I was pleased, this was my first time as engagement worker where the dads started to take the lead and initiative to plan things for themselves. The fact he asked still shows me that the dads felt they didn't own it totally though.' Progress is encouraging with dads showed increasing control, confidence and sense of ownership of the work throughout the second year. Significantly, the dads became formally constituted at the end of year two. This is particularly encouraging in terms of community capacity for continuing the work as the social enterprise progress their plans to withdraw further from the work in line with PD principles. In taking increasing ownership the dads are continuing to develop a wider, external focus including making connections with numerous local partners. They are being approached with increasing regularity to talk about the work through various media outlets, including local press and radio, and at national events. Social media, particularly Facebook, continues to be used as a way to engage new local men in the project and is also being harnessed as a tool to build external alliances across the community. As well as the existing regular activity for dads alone and with their children, there are on-going 'ad hoc' family-oriented events that have helped ensure positive involvement from the women within the community. Building on this, there are new plans being pursued by the dads with minimal support now from the social enterprise. At the point of completing the year two evaluation an entry from the project manager's diary noted: This is not an insubstantial number, given the small size of the locality and the often stated difficulties of engaging men . However, this number does not account for the many other community members that engage in the ad hoc events, nor does it consider the significant impacts, outlined in sections above, that changes in just a few men's lives can have within a community. --- DISCUSSION This project has identified important links between fathers' and children's wellbeing and how improving one can act synergistically to improve both. Indeed, it goes beyond this in highlighting how community and family relations and wellbeing can be positively influenced through approaches which trust and draw upon the assets and strengths present within a community. This represents a key finding of the study: that in thinking about 'what works' in public health opportunities with men, working alongside them as valued, active project collaborators garners success. Men often report not being trusted, cared for or listened to by service providers, and not being able to find male-oriented services . This issue of 'trust' and 'identifying' seems to be worsening as the social gradient increases with certain communities no longer recognising themselves in those professional 'outsiders' brought in to deliver services leading to what Wilkinson and Pickett call the 'social evaluative threat'. In contrast, taking a strength-based approach to working alongside men, drawing on salutogenic models focusing on enhancing health rather than on identifying or treating disease, and recognising and valuing what men bring, has been shown here, as elsewhere , to be effective in promoting men's wellbeing and that of those connected to them. As others have noted , health promotion work with men is not something that happens independently of women and children. Understanding gender as being about sets of relations implies that engaging men in ways that alter health and social practices has public health impact beyond the individual level. The narratives here from the women and children are strong testament to this. Creating a safe space for men to interact in settings that are male positive but avoid the worst aspects of hegemonic masculinity provides opportunity for men to identify and engage in new or different social practices; often practices more conductive to wellbeing. The data here support previous research suggesting that such changes are not necessarily consciously thought through. Rather, this new environment introduces the men to new forms of social and cultural capital thereby expanding their repertoire of acceptable ways to 'be a man'. In doing so it increases the range of coping strategies available to them to deal with the significant issues they face and thereby impacts a range of daily relationships. It is important to recognize that such approaches are not a panacea for the health and wellbeing issues faced by men and others in such areas of multiple deprivation. They should not be seen as a replacement for addressing the 'upstream' public health policy approaches necessary to influence wider social determinants of health and wellbeing. We would suggest though that they could and should be used in preference to certain other approaches to promoting men's health. Lorenc et al. have identified that certain types of interventions act to increase health inequalities. Williams and Robertson suggest that individually focused health promotion initiatives likely act to increase inequalities as they mainly attract men of higher socioeconomic status whose health practices and outcomes are, on average, better than those of men from areas of multiple deprivation. They further suggest that to be effective for men, 'public health approaches need to be based on principles of collaboration, equity and participation' . The evaluation here certainly shows the effectiveness of putting such principles into action, including how adopting such asset-based, salutogenic models can improve sets of gender relations for the benefit of men, women and children. The findings offer insight into the conceptual and practical feasibility of recognising families as settings for health promotion in the same way that successful initiatives have been seen in schools, workplaces and prisons . It is axiomatic that taking an instrumental view of the family setting as a self-contained environment with 'target audiences' for intervention will not be sufficient . Findings here suggest a more nuanced view of health and its determinants is required -this was exemplified in this study where men and families were dealing not only with internal family dynamics but with the consequences of social and economic challenges, mainly poverty and unemployment. Indeed Dooris' advancement of settings theory , suggesting that settings must connect 'outwards' and 'upwards', is applicable to the notion of a health-promoting family setting. Connecting 'outwards' relates to all settings working in joined-up ways in order to appreciate the interconnectedness between the places that individuals live their lives and to embrace the complexity of health issues that do not respect physical boundaries. Fathers reported feeling pushed out of the statutory service provision and indeed there would be clearer dividends for schools, maternity services and other providers to work more closely with family units. Connecting 'upwards' is about ensuring that broader political, economic and social factors are being addressed through setting programmes effectively developing advocacy and lobbying roles . St Leger argues that when adopting a settings framework there is a requirement to always stay with 'the big picture'. As discussed, viewing the family in isolation without recognising socioeconomic determinants may not offer dividends for reducing inequalities or supporting the development of healthy children, families and societies. --- CONCLUSION It is apparent from this evaluation that when positive, salutogenic approaches are taken that value, and indeed rely on, the skills of those from within a community to define their own concerns, discover solutions to these and design locally appropriate ways to share these solutions, that significant change can result. The importance of working alongside men then as true collaborators rather than passive service recipients stands out here as of core importance. Discovering safe opportunities for men to share the substantial difficulties they are experiencing living in an area of multiple disadvantage helped them find alternative ways to deal with many of the challenges they faced. This improved their confidence and wellbeing and had a significant and positive impact on their relationships with their children and with significant others around them . There were clear links then between the fathers' wellbeing and that of their children. There is government commitment to generating policy that 'empowers individuals to make healthy choices' and also recognition it has not yet 'fully harnessed the renewable energy represented by patients and communities' . The evidence here suggests that people can be empowered in this way, through approaches that harness this energy utilising the skills and assets present within localities. However, the evidence also shows this is not an easy process and that it requires time, patience, and a commitment to trusting that communities can co-create their own solutions and generate sustainable success. It also requires salutogenic approaches that focus on strengths rather than ill-health deficits further suggesting that policy implementation requiring commissioning of services delivered 'to' people could be replaced, or at least heavily supplemented, by commissioning appropriate organisations to coconsider the requirements of particular localities and communities and co-create solutions to meet these requirements. In relation to promoting the health of men , we concur with others that, to be successful, such approaches should be placed within a wider policy framework that engenders collaboration and participation and is based firmly on the values of equity and social justice.

Although under-researched and under-theorized compared to other settings, there is potential for the family setting to be harnessed to support the development of healthy children and societies and to reduce health inequalities. Within this setting, the role of fathers as health facilitators has yet to be fully understood and considered within health promotion. This paper draws on a two year evaluation of a community embedded intervention for fathers and children in an area of multiple deprivation in North West England. The evaluation integrated a variety of qualitative methods within a participatory evaluation framework to help understand the development and impact of a programme of work co-created by a social enterprise and fathers from within the community. Findings suggest that allowing fathers to define their own concerns, discover solutions to these and design locally appropriate ways to share these solutions can result in significant change for them, their children and the wider community. The key to this process is the provision of alternative spaces where fathers feel safe to share the substantial difficulties they are experiencing. This improved their confidence and had a positive impact on their relationships with their children and with significant others around them. However, this process required patience, and a commitment to trusting that communities of men can co-create their own solutions and generate sustainable success. We suggest that commissioning of services delivered 'to' people could be replaced, or supplemented, by commissioning appropriate organisations to work with communities to co-create solutions to the needs they themselves have recognized.

INTRODUCTION Research can be conducted using either inductive or deductive approaches. While inductive research aims to develop a theory, deductive research focuses on testing an existing theory. Much of biomedical science research is conducted using the deductive approach through basic, applied, and in vitro or in vivo research and clinical trials. But what if the research aim was not to assess the relative efficacy and safety of new versus old treatments in a randomised controlled trial? What if the goal was, instead, to explore the reasons for rising tensions between the Emergency Department and General Internal Medicine physicians in a particular hospital? In such an instance, it would seem that methods such as randomisation and controlling for confounding factors might not be as appropriate for such a research question, as it deals with complex social phenomena rather than cells, tissues or pathogens. Instead, an inductive approach using qualitative research methods to explore processes, phenomena and settings would be more appropriate, as healthcare systems are, after all, complex social organisations where power, inequality, conflict, competition and collaboration exist. These realities do not lend themselves easily to deductive approaches measuring discrete variables, but they are important considerations, as social relations and interactions in healthcare organisations impact the outcome and cost of patient care. Similar to how a randomised controlled trial might assess the efficacy of a new drug, qualitative research can explicate social phenomena within healthcare settings that impact patients' quality of life, such as how palliative care teamwork might affect the quality of life of patients receiving palliative care. Qualitative research findings may challenge existing perspectives and, therefore, could offer healthcare professionals and managers new and valuable insights. For example, through qualitative inquiry, Carter et al discovered that healthcare quality collaboratives are not all about collaboration -free riding and competition also abound. Similarly, Knowles et al found that physical co-location of different HCPs does not automatically make them work together better or lead to better care. This review focuses on a qualitative methodology called institutional ethnography . It is meant for HCPs who are novice qualitative researchers interested in topics that include but are not limited to medical education and interprofessional collaboration. We cover what IE is, why it matters and how to apply it, using examples to illustrate key points. --- WHAT IS INSTITUTIONAL ETHNOGRAPHY? IE seeks to understand and capture, in detail, actual work processes performed by members of the organisation, and then trace how these work processes are coordinated at a higher level by policies, protocols, standards, competency frameworks and social norms. People may or may not be aware of these higherlevel influences on their work. Of interest to an IE researcher is the dissonance between what institutions think people ought to do and what individuals are actually doing on the ground. Being able to identify what has been lost when people try to translate policies and what could be done to rectify the situation is the unique value afforded by IE. IE is not simply ethnography or focused ethnography conducted in a social organisation such as a family, a school or a healthcare system. Similar to ethnography, IE is committed to 'careful descriptive research', a stance that is characteristic of ethnography. IE differs from ethnography in its goal. The overall goal of IE is to understand how the institutional arrangements of a society expressed in textual forms -such as government policies and organisational directives -affect the everyday work experiences of people. This goal is clearly different from that of ethnography, whose goal is to delineate the cultural context in which a specific social behaviour takes place and makes sense. For example, to understand the barriers to interprofessional collaboration in a healthcare practice, ethnographers examine what the term interprofessional collaboration means to different HCPs involved, how they define their roles in the collaboration vis-à-vis the roles of others, how they interact with others and how they interpret the actions of others. By contrast, institutional ethnographers start with a specific problem experienced by one group of HCPs in the course of collaboration with others . They then trace the causes of these problems to higher levels of institutional arrangements such as reporting structure and key performance indicators set for this group in the organisation that may impede effective interprofessional collaboration. As such, while ethnographic research starts with individual actors and ends its analysis at the individual level, institutional ethnographic research starts with individual actors but ends its analysis at the institutional level. Also, unlike ethnography, which does not have a unifying theme across studies of different cultures, each account of IE adds to a cumulative body of knowledge on how larger social institutions of a society enter into and shape the everyday work experiences of people in that society. For example, if one IE study reveals reporting structure and key performance indicators set by the organisation as two significant institutional forces hindering interprofessional collaboration, while another IE study teases out the influences of more extended dimensions of institutional arrangements such as national healthcare policies, the knowledge generated by each study helps to render more visible the institutional forces governing individual experiences of interprofessional collaboration. IE's focus on the everyday work experiences of people is a result of its theoretical affiliation with Marxist historical materialism, which argues that the most important social relationship is the relationship of production, which is work. What then defines work? It is useful to take a step back and note that IE's definition of work is broader than Marx's original definition of the concept as wage labour. Besides paid employment, institutional ethnographers also consider unofficial/unpaid activities as work, so long as individuals take time and effort to engage in them. Examples of IE-defined work include a mother attending school meetings to discuss her child's access to disability support, or the time patients spend waiting for test results at hospitals or clinics. Given IE's focus on everyday work processes, the research question does not arise from extant literature. Instead, it comes from the dissonance between what a researcher observes to be happening in real life and what authoritative knowledge claims is happening or should be happening. This dissonance is called a 'disjuncture' . When the disjuncture causes a problem from the 'standpoints' of particular individuals, it is called a 'problematic', which is equivalent to a conventional research problem. In essence, a problematic --- Table I. Glossary of technical terms used in institutional ethnography . --- IE term Explanation Disjuncture Disjuncture refers to the dissonance between people's experiences of the world and the authoritative representations of these experiences. Explicate To explicate is to describe the workings of a process that is hard to uncover or obscure. Problematic The term problematic points to problems, tensions and contradictions that arise in the relations between people and how society is organised. IE researchers identify a problematic only after they are immersed in the field and have talked with people about the social experiences that individuals find troubling or difficult. Ruling relations IE propounds that contemporary society is governed by institutions and organisations through texts. These texts spell out how individuals should work together . Standpoint Standpoint is a social position of a particular group of people. All IE studies begin from the standpoint of a particular group of people. Texts In IE, texts refer to documents in spoken, written or graphic forms. Smith propounds that much of contemporary life is organised by texts that mediate people's everyday activities at two levels. On a day-to-day basis, people activate local-level texts, such as healthcare staff writing notes about patients. In turn, these texts are regulated by higher-level extra-local texts, such as clinical guidelines set by health ministries. According to Smith, texts are not neutral statements of facts but are embedded in the power relations of a society. They are the medium for social institutions of administration, management or professional authorities to organise and regulate individual behaviours. She refers to this text-mediated macro-level regulation of micro-level individual behaviour as discourse. Work The conventional understanding of work refers to paid employment. However, IE's definition of work is broader than usual and also refers to unpaid activities. As long as individuals take time and effort to engage in these activities, it is considered work. points to the social experiences that people encounter as troubling or difficult. Once a problematic has been identified, IE researchers begin by iteratively collecting data describing the individuals' standpoint, before broadening data collection to include their colleagues and remote collaborators. Data collection methods include observations, interviews and focus group discussions , along with identification of 'local' and 'extralocal' texts that coordinate the individuals' work processes. The term 'texts' refers to documents in spoken, written or graphic forms, such as policies, protocols, standards and competency frameworks. Local texts refer to documents generated and used by individuals in their everyday work, for instance, healthcare staff writing notes about patients. Extra-local texts refer to documents disseminated from authorities, such as clinical guidelines set by the health ministry. Data analysis involves describing in detail the work processes of the individuals studied and tracing their everyday activities to extra-local texts to explicate the ruling relations that organise the work they do. To 'explicate' is to describe the workings of a process that is hard to uncover, while the phrase 'ruling relations' refers to how 'texts' spell out how people are supposed to work together. --- AN EXAMPLE OF INSTITUTIONAL ETHNOGRAPHY One IE study sought to understand a problematic arising from intra-professional tension between hospital physicians at the ED and GIM departments in Ontario, Canada, in the early 2010s. To understand the problematic -why the social relations were poor from the standpoint of the physicians -institutional ethnographers interviewed and shadowed the ED and GIM staff to understand their everyday work processes. They also identified and analysed local texts such as the physicians' notes on patients. IE researchers discovered that tension began when ED physicians started admitting many frail and elderly patients without concrete diagnoses. These patients were admitted from the ED for social reasons, as opposed to clearly defined medical reasons. These patients were admitted mostly to GIM wards, adding to the busy workload and exacerbating the existing shortage of beds in these wards. As there was no clear medical need to admit these patients, many GIM physicians felt that the extra patient load had wasted their time, and consequently, tension arose between them and their ED counterparts. Following IE methods, researchers identified and explicated how an extra-local text governed the ruling relations of the work processes for ED and GIM physicians. This text was a new government policy mandating shorter wait times at EDs, which led to ED physicians feeling compelled to admit or discharge patients quickly, thus resulting in a change in their patient admission behaviours. In the parlance of IE, this mandate, in the form of a text, coordinated the social relations between the ED and GIM physicians. --- WHY DOES INSTITUTIONAL ETHNOGRAPHY MATTER? IE asserts that the work processes of different groups of people on the ground are coordinated by extra-local texts that individuals might not be fully aware of. In the preceding example, the GIM physicians may or may not have been aware of the new government policy mandating shorter wait times in the ED. The GIM physicians only knew that they were experiencing a greater workload and felt resentment towards their ED counterparts for not making concrete diagnoses before admitting patients. The diminishing goodwill between the two groups of physicians thus formed the problematic of the IE study. It is also significant that the mandated shorter wait times in the ED did not address the underlying issue of patients being sent to hospitals for social rather than medical reasons; the government policy only moved the workload from the ED to the GIM department. This disjuncture marks the dissonance between the official understanding of an improved hospital experience and the actual work being done on the ground . As shown in this study, through understanding people's actual work processes on the ground, IE methods helped to uncover the link between the government mandate and the resulting dysfunctional work processes affecting the ED and GIM departments which, in turn, led to heightened intra-professional tension between both departments. In short, IE serves as a practical qualitative research methodology that helps to trace everyday work processes to higher-level coordinators such as institutional leadership and management. Through this, individuals can become aware of their position in the larger systems and potentially have the opportunity to enact change and bring about new approaches to their work. --- APPLICATION TO INTERPROFESSIONAL RESEARCH: A WORKED EXAMPLE IE is increasingly used in health services research but has yet to penetrate the realm of healthcare professionals. Given that healthcare professionals and scholars may be unfamiliar with IE and thus may find it challenging to employ, this section seeks to provide a worked example of how an IE study on interprofessional research was conducted. --- Study background The IE study to be analysed was conducted by Braaf et al. They focused on the time-out procedure recommended by the World Health Organization to counter the rise in avoidable surgical complications and adverse events due to suboptimal communication among interdisciplinary surgical teams. In essence, the time-out procedure is a brief pause taken before a surgery begins, wherein the whole interdisciplinary surgical team comprising the surgeon, nurse and anaesthetist are supposed to check the patient's identity, confirm the operative site and side by inspection, and ascertain the type of surgery to be performed. Step 1: Identifying the disjuncture and problematic IE studies begin with the identification of a disjunction, that is, the gap between what is actually happening and what authoritative knowledge claims is or should be happening. Braaf et al sought to understand why interdisciplinary surgical teams failed to adhere to the time-out checklist despite the fact that Australian hospitals had incorporated it into preoperative checklists as per the WHO's recommendations. This was an issue of research significance, because the disjuncture's resulting problematic was that surgical errors continued to occur despite time-out being implemented. From the perspective of research question formulation, IE is suitable for busy clinicians who want to address a problem they have observed or experienced in the workplace -specifically, problems that result when things that are officially supposed to be done do not happen in practice. One example would be how interprofessional education does not always lead to collaborative practice in clinical settings. IE would be useful to address such research problems, as there may be texts that could explicate ruling relations that do not encourage interprofessional teamwork. --- Step 2: Data collection methods The methods for data collection used by Braaf et al for their IE study included observations, interviews and FGDs. Braaf et al observed participants for 2-4 hours during mornings, afternoons, weekdays and weekends, totalling 350 hours. These observations were made at a distance to enable the informant's speech to be heard clearly, but not so close to be intrusive, cause disruption or contaminate sterile areas. The observer noted the extent to which different HCPs adhered to the time-out procedure that was supposed to be implemented before each operation. As a data collection method, observation is useful because it is common for individuals to say they are doing one thing when in reality they are doing something else, not necessarily because they are dishonest but because they may lack awareness or may be unable to articulate the subtleties of what goes on during their interactions with others. Observations place researchers at the centre of the action, where they can see as well as hear what goes on. Besides observations, Braaf et al also conducted interviews and facilitated FGDs. A total of 30 participants took part in the interviews or FGDs. Each interview or FGD lasted for about 40 minutes. Of these 30 participants, 12 also agreed to be observed for the purpose of data triangulation. Braaf et al did not provide demographic details of the interview and FGD participants. However, in general, interviews are useful, as this method of data collection helps researchers gain insight into individuals' experiences; in this case, their workplace experiences could explicate ruling relations, that is, the identification of remotely crafted texts such as policies and protocols that determine the actual day-to-day work that people have to do. FGD also helps in obtaining a detailed understanding of processes, in this instance, processes that govern participants' workplace relations. FGDs differ from interviews in that their additional group dynamics and interactions among the participants could presumably help researchers to appreciate the processes from a multiple-departmental perspective. Step 3: Data analysis method Braaf et al then explicated the ruling relations that undermined the effectiveness of the time-out procedure. By triangulating the data collected through observations, interviews and FGDs, they found that although the interdisciplinary surgical team attempted to activate the text on quality and safety, their attempt was overwhelmed by more powerful competing extra-local texts on productivity and efficiency, specifically the state's elective surgery access policy and a document spelling out the key organisational performance indicators to be accomplished. The researchers' knowledge of hospital administrative processes also enabled them to triangulate regular audits with interview data, which showed that most surgeons and anaesthetists found the time-out procedure time-consuming. This led them to avoid performing it, although it took less than a minute to perform. Out of 107 surgeries observed, the entire time-out procedure was performed only 11 times. It was not performed for five surgeries, and in the remaining 91 surgeries, the procedure was either abridged or incomplete, where members of the team did not participate. Step 4: Recommendations and conclusions useful for changing practice Based on the findings of their IE study, Braaf et al made the following recommendations to improve the implementation of time-out procedures. First, they proposed that hospital leadership should implement communication education programmes that seek to flatten extant hierarchies and promote tolerance for open questioning by co-workers. Second, they suggested that government departments crafting healthcare policies that determine hospital performance indicators must take into account the communication challenges faced by surgical teams for delivering safe patient care in constrained timeframes. IE is, thus, a useful problem-solving methodology to flag underlining issues. By capturing in detail how time-out was actually performed in busy operating theatre environments and tracing the extra-local texts that explicated the ruling relations coordinating the work processes of interdisciplinary teams, IE allowed Braaf et al to generate concrete evidence to support their recommendations. In the present era, where evidence-based approaches reign supreme, IE provides qualitative HCPs and researchers a useful tool to explicate relations and discuss change with key stakeholders. In this example, the findings of this IE study opened up new avenues for understanding and solving the time-out problem in operating theatres. Instead of following the official time-out guidelines and focusing on how to improve adherence to these guidelines, Braaf et al demonstrated the need for government agencies to consider the realities of interprofessional communication when defining key hospital performance indicators. Additionally, they showed that the deep-rooted power asymmetry and hierarchy between doctors and nurses in the hospitals was a factor that hindered the nurses from performing their expected role in successfully leading the time-out communication, even when time pressure was not an issue. These findings make it apparent that efforts to improve patient safety by highlighting the perceived importance of time-out among HCPs in the operating theatre are unlikely to be fruitful without dealing with power and hierarchy. The actionable insights revealed by IE render it more useful than other qualitative methodologies. Participants were asked to check whether the account was representative of their experience and to offer feedback. For example, at the end of each surgical procedure, the instrument or circulating nurse was asked to confirm when the time out was conducted, the individuals involved and the components checked during time out. --- Neutrality of evidence --- Objectivity Confirmability: how to control researcher bias Peer debriefing: discuss the research process and findings with fellow experts An external check of the investigation's credibility incorporated peer debriefings. Experienced, skilled and acclaimed peer reviewers explored the research process undertaken multiple times during the investigation. Reflexivity: to be transparent and declare the researcher's perspectives or biases that may impact how the data is collected and analysed Braaf et al explicitly stated that the background of the observer was that of a registered nurse with 20 years of hospital experience. This suggests that the observer has the requisite medical expertise and experience to make sense of what was observed. However, there was no comment on how the researchers' background influenced analysis. This could be because IE analysis is less dependent on researchers' perspectives and biases, as its main function is to identify texts that explicate ruling relations. --- OTHER CHALLENGES HCPs who intend to use IE may face some challenges. First, IE studies require significant resources and commitment to conduct, and the translation of findings also requires engagement with stakeholders such as hospital administration and policymakers. Second, as healthcare professionals are trained to consider randomised controlled trials as the gold standard for scientific research, IE studies, which have comparatively much smaller sample sizes, may be deemed as having limited reliability and generalisability. Another perceived limitation is that in IE studies, the researcher may collect data from participants and even analyse it. This practice may lead researchers who are unfamiliar with qualitative methodologies to think that the high degree of subjectivity and bias will render the findings invalid. However, as pointed out by Cristancho et al, qualitative research has its own set of quality criteria to ensure trustworthiness and rigor. Adapting Frambach et al's framework, we illustrate in Table II how IE studies, using the study by Braaf et al as an example, fulfil quality criteria. --- CONCLUSION IE is a useful qualitative methodology that enables healthcare professionals and researchers to trace everyday work processes to higher-level coordinators that individuals may or may not be aware of. Through such means, stakeholders could then adopt concrete, actionable improvements that will benefit institutions as well as individual healthcare professionals. --- About the First Author Dr Foo Yang Yann is an Assistant Professor at Academic Medicine Education Institute, Duke-NUS Medical School, Singapore. She has a PhD in education and uses different theoretical frameworks and qualitative methodologies to explore wicked problems in health professions education research. Some of her recent works include identifying interprofessional collaboration barriers and facilitators through the lens of networked ecological systems theory, and evaluating how faculty development programmes that are underpinned by frameworks such as transformative learning theory can catalyse practice change. Her research interests also extend to the study of using evidence-based, theoretically informed approaches to facilitate students' acceptance and use of feedback.

This review introduces a qualitative methodology called institutional ethnography (IE) to healthcare professionals interested in studying complex social healthcare systems. We provide the historical context in which IE was developed, and explain the principles and terminology in IE for the novice researcher. Through the use of worked examples, the reader will be able to appreciate how IE can be used to approach research questions in the healthcare system that other methods would be unable to answer. We show how IE and qualitative research methods maintain quality and rigour in research findings. We hope to demonstrate to healthcare professionals and researchers that healthcare systems can be analysed as social organisations, and IE may be used to identify and understand how higher-level processes and policies affect day-to-day clinical work. This understanding may allow the formulation and implementation of actionable improvements to solve problems on the ground.

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 post-Soviet Ukraine unfolds. We are in the opening scene of the Finnish-Estonian writer Sofi Oksanen's 2019 novel Dog Park . Written well before the Russian full-scale military invasion in Ukraine in February 2022, Oksanen's 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 well-off 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 novel's 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 post-Soviet 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 U.S.S.R., the family resettled in the father's town of birth Snizhne (Ukrainian: ) in the Donbas Region in Eastern Ukraine, driven by the father's 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 post-Soviet 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 post-Soviet 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 post-Soviet 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 1989/1991 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 Ukraine's 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 East-West axis . With the Fall of the Soviet Empire, and Poland's 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 late-20th-and early-21st-century 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 Olenka's 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 novel's representation and imagination of Europe's 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 post-Cold 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 cross-cultural 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", Finland's Soviet-friendly politics during the Cold War era, and as a vocal critic of Putin's Russia . In a talk on the topic of "Putin's 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 aunt's story served as an inspiration for the 2008 break-through novel Purge, which narrates the story of three generations of Estonian women subject to male sex violence and abuse. Oksanen's bestselling novel may as such be regarded as an important literary contribution to the international commemoration of Estonia's 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 neo-imperialism and the still more aggressive memory politics of the Kremlin regime with regard to the Baltic countries and other post-Soviet 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. Oksanen's 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. Oksanen's novels are usually women's 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, i.e., 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 Witt-Brattström has noted, an important strategy in Oksanen's 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 country's 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 post-communist countries . Do post-communist and post-Soviet 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 Russia's war on Ukraine. As a recent multi-country poll has shown, Russia's 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, Russia's war on Ukraine has mainly been seen as the return of a Cold War-type of bipolarity between West and East, between democracy and authoritarianism, citizens in non-Western 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 2004-2005, initiated its hybrid war against Ukrainian independence by supporting and staging Pro-Russian 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 sought-after 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 post-Soviet 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 post-Soviet Ukraine, but also a novel about the life of a well-off 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 Russian-Ukrainian 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 Oksanen's novel helps do away with such perceptions of Nordic exceptionalism or self-complacency 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 Olenka's life in Ukraine 1992-2010 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 Russian-Ukrainian war. Likewise, the choice of the dusty mine town of Snizhne (Ukrainian: ) as the setting for Olenka's 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 Russian-Ukrainian war. In July 2014, this place became the center of the world's attention, when a passenger flight from Malaysia Airlines was shot down by Russian-controlled forces while flying over the area, killing 283 passengers and 15 crew members. During the 2014 pro-Russian 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, Oksanen's novel reminds us of the fact that the Russian-Ukrainian 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. Russia's hybrid war against Ukrainian independence was initiated already in the mid-2000s through various kinds of interventions and efforts at Russification, including the staging of pro-Russian 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 full-scale Russian invasion of 2022, such as when Olenka, from her exile in Helsinki, observes the political developments in her home country: I'd 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 wasn't the only one. In such formulations one easily recognize the critical voice of Oksanen's 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 novel's psychological portrait of its protagonist, Olenka. The geographical and historical anchoring of Olenka's 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 Yi-Fu 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 place-naming, as the novel deliberately alternates between Russian and Ukrainian place-names . 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 Olenka's 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 novel's descriptions of the changing urban landscape in the city of Dnipro, where old communist and Russian tsarist monuments are removed, while the city's 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 well-trained 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 didn't point out that Comăneci was not from Ukraine but rather Ceaușescu's 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 one's 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 father's 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 Olenka's self-narration, 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 Russian-occupied 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 father's parents had lived. --- THE CALL OF THE NORTH Similar to the her break-through 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, Viktor's 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 agency's 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 right-hand 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 Toivonen's two daughters and a baby boy by the name of Oleh, which she sees as a happy omen for her own impending motherhood: "Ruslana's 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. Didn't 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 well-groomed 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 vis-à-vis the privileged position and well-groomed lifestyle of the Finnish family is evoked not least through the novel's 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 Oksanen's 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, Daria's 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: Daria's teeth were still white, and only her canines showed even the slightest hint of tobacco stains. Still, she couldn't afford to look down on my state of decline. Didn't she realize how she looked? Before, her cuticles had been healthy, her nails her own, without any ridges, their surfaces as flawless as a newborn's. 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 Daria's 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 woman's 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 Olenka's 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 second-class 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 Arcadia-like 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 post-human age. --- CONCLUSION Dog Park offers a reflection on the new geographies of post-Cold 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 post-Soviet 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 full-scale military invasion in February 2022, the novel offers an intriguing psychological and sociological account of some of the historical backgrounds to Russia's War on Ukraine, while also envisioning how they may relate to the life of a well-off 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 novel's representation of Europe's 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 East-West axis to an East-North 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 Olenka's urge toward the North, a utopian dream of family happiness and a comfortable Nordic lifestyle. This dream finds its spatial materialization in the Arcadia-like 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 post-communist 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 well-known topic from Oksanen's previous novels, where it has been used to visualize Russia's 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 Russian-Ukrainian relation to the relation between Ukraine and the West.

The article presents a discussion of Finnish-Estonian author Sofi Oksanen's 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 Oksanen's 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 Collaborative tasks have emerged as an integral component of higher education, transforming traditional classroom dynamics and fostering valuable skills among university students. By engaging in collaborative tasks, students are exposed to diverse perspectives, enabling them to develop teamwork, critical thinking, and problem-solving abilities [1,2]. These tasks often require students to work together in groups, encouraging them to share ideas, debate different viewpoints, and collectively tackle complex challenges [3]. In this way, one can argue that collaborative tasks provide a practical learning environment that mirrors real-world scenarios, preparing students for future professional endeavours where teamwork and collaboration are crucial. In line with our argument, [4] also posited that collaborative tasks promote active learning and student engagement; rather than passively absorbing information, students actively participate in the learning process by collaborating with their peers. This active engagement, in no doubt, fosters deeper understanding, as students are encouraged to articulate their thoughts, challenge assumptions, and defend their ideas [5]. Students can learn to navigate disagreements, negotiate compromises, and reach consensus through collaboration, developing important interpersonal and communication skills. However, collaborative tasks or learning processes often require students to draw upon their collective relationships toward knowledge construction and skill acquisition, which in another way enhance their problem-solving capabilities and prepare them to address complex, multifaceted challenges in their future careers [6]. However, the diverse nature of collaborative endeavours, encompassing a wide range of perspectives, cultural backgrounds, educational backgrounds, and individual preferences, can introduce potential conflicts that pose challenges to effective teamwork and jeopardise project outcomes. When students come together from different backgrounds, they bring with them unique experiences, values, and ways of approaching tasks. While this diversity can be a source of strength, it can also lead to clashes and misunderstandings if not properly managed. The argument here is that conflicts arising from diverse perspectives can hinder effective teamwork by impeding communication and creating barriers to collaboration. Miscommunication, misunderstandings, and/or differences in problemsolving approaches may arise [7], resulting in reduced productivity and coordination difficulties within the team. Additionally, conflicts stemming from cultural backgrounds and individual preferences may give rise to biases, stereotypes, or discrimination, further exacerbating tensions and impeding team cohesion [8]. Undoubtedly, such conflicts can undermine the synergy and shared commitment necessary for successful collaborative tasks among students. The researchers have observed that while diverse perspectives in a team setting can enrich the learning experience, they also have the potential to lead to conflicts that can hinder effective teamwork among undergraduate students. These conflicts, stemming from differences in communication styles, problem-solving approaches, cultural backgrounds, and individual preferences, often result in miscommunication, misunderstandings, and reduced productivity. Additionally, the researchers emphasise that unresolved conflicts could have detrimental effects on students' educational outcomes. To overcome these challenges, many studies have explored various means to prevent conflict among university stakeholders, including students. This includes fostering an inclusive and respectful environment that values and appreciates diversity [9,10]. Promoting open and transparent communication channels, active listening [11], and facilitating constructive dialogue can help mitigate conflicts [12]. Additionally, providing inclusive decision-making processes at the onset of collaborative tasks can also help prevent conflicts in the university system. Despite these tendentious solutions, no study seems to have explored the causes of and solutions to conflict arising among students during group or collaborative tasks, most especially among students, hence the need for this study. This study, therefore, addresses the identified gap by examining potential conflicts that arise during collaborative tasks among university undergraduate students and provides strategies to effectively mitigate these conflicts within a specific South African university context. By focusing on the uniqueness of the problem, the study shed light on the specific factors that contribute to conflicts in collaborative tasks among undergraduate students. Through an exploration of these conflicts and their underlying causes, the study proposed practical strategies and interventions that can be implemented within the university to foster a more inclusive and harmonious collaborative environment during collaborative tasks. Ultimately, the findings of this study contribute to enhancing the effectiveness of collaborative tasks, promoting better teamwork, and improving overall academic outcomes among university undergraduate students in South Africa. --- Research Questions Based on the study's focus, the following two research questions were raised to guide the study: --- • What are the main factors contributing to potential conflicts during collaborative tasks among undergraduate students in a South African university? --- • What are the most effective strategies to mitigate potential conflicts during collaborative tasks among undergraduate students in a South African university? --- Theoretical Framework: Social Identity Theory Social Identity Theory , as proposed by Henri Tajfel and John Turner in the 1970s, provides a framework for understanding how individuals' self-concepts are shaped by their membership in social groups [13]. This theory posits that people categorise themselves and others into groups, such as cultural, religious, or organisational affiliations. These categorisations form a social identity that influences attitudes and behaviours [14]. Individuals strive for a positive self-concept, often achieved through in-group favouritism, where members of a group prefer and value their in-group over out-groups [15]. SIT also explains intergroup conflicts, discord and tensions that arise between different social or identity groups, suggesting that discrimination and bias can ensue when group status and access to resources are threatened [16]. The theory has been widely applied in research across disciplines, including psychology, sociology, and organisational studies, to explain phenomena such as group cohesion, prejudice, and collective action [17]. SIT is a valuable framework for theorising the study because it posits that individuals derive their self-concept and social identity from the groups they belong to, which can influence their behaviours, attitudes, and interactions [18,19]. In the context of collaborative tasks, SIT helps explain how conflicts may arise due to differences in social identities, such as cultural backgrounds or group affiliations [20,21]. By adopting SIT, the study can explore how these social identities impact intergroup dynamics, biases, and prejudices that may contribute to conflicts within collaborative teams. Applying SIT to the study is particularly relevant because the country is known for its diverse cultural landscape and historical challenges, which can shape social identities and affect intergroup relations. SIT offers a lens to examine how students' social identities, rooted in their cultural backgrounds and group memberships, may intersect with their collaborative experiences. By understanding the impact of social identities on conflict dynamics, the study has the potential to identify strategies to foster a sense of shared identity and minimise conflicts stemming from group differences, ultimately promoting effective collaboration and positive intergroup relations. Moreover, SIT aligns with the goals of creating an inclusive and supportive environment within universities. By recognising the role of social identities in collaborative tasks, the study can explore ways to mitigate conflicts and promote a sense of belonging among diverse student populations. The insights derived from SIT inform our interventions aimed at reducing prejudices, and biases among group members , thereby fostering a more inclusive and equitable collaborative environment. By incorporating SIT, the study provides a comprehensive understanding of the interplay between social identities and potential conflicts during collaborative tasks, contributing to the development of strategies to enhance collaborative experiences among undergraduate students in South Africa. --- Methodology and Methods --- Research Paradigm The transformative paradigm serves as a valuable lens for this study. This paradigm focuses on understanding and addressing power dynamics, social inequalities, and promoting social change [22,23]. By adopting a transformative paradigm, the study acknowledges that conflicts during collaborative tasks are not solely individual or interpersonal issues but are deeply rooted in broader social structures and power dynamics. This perspective allows this study to explore how conflicts within collaborative teams may reflect and reinforce existing social inequalities or power imbalances. Furthermore, the transformative paradigm emphasises the importance of actively engaging participants in the research process, giving voice to marginalised groups, and working towards transformative solutions [24]. By adopting this paradigm, this study aligns with a broader goal of promoting social justice and transformation within the university context. --- Research Approach The study falls under a qualitative approach, which is well suited for the study. A qualitative approach allows for an in-depth exploration of participants' experiences, perceptions, and subjective interpretations of the situation [25]. It enables researchers to capture rich, contextual data [26] that can shed light on the underlying factors contributing to conflicts and the effectiveness of strategies for conflict mitigation. Through methods such as interviews, the study gathers detailed accounts of participants' experiences and perspectives, providing a holistic understanding of the phenomenon. By employing a qualitative approach, this study generated rich insights that informed the development of contextually relevant strategies to mitigate conflicts during collaborative tasks among undergraduate students in South Africa. --- Research Design This study adopts a participatory research design, which underscores the importance of involving participants as active collaborators in the research process. By engaging students as partners, the study recognises their expertise and insights, allowing them to shape the research agenda and outcomes [27]. The participatory research design empowers participants to contribute to the identification of research questions, the design of interventions or strategies, and the interpretation of findings [28,29]. This collaborative approach ensures that the study's recommendations are contextually grounded, relevant, and more likely to be embraced and implemented within the South African university setting. This design, therefore, aligns with the study's aims of promoting a sense of ownership, empowerment, and social change, facilitating a more inclusive and transformative research process. --- Research Methods In this study, a sample of ten undergraduate students who were involved in a compulsory group task within a selected module formed the participants. The module is one of the general modules offered by students from various disciplines within the Faculty of Education of the selected university. Among the tasks required to complete the module was a group assignment where the students were grouped, and each group consisted of a minimum of seven and a maximum of ten students. The task was meant to be performed in a group, and the students were mandated to meet either physically or virtually to plan, brainstorm, come up with ideas, harmonise their ideas, and come up with certain pages of a term paper to be submitted within a mandated time frame by the group leader. Most groups could not meet the deadlines, citing a lack of cooperation among group members and the inability to accommodate one another. The participants were chosen using the convenient sampling technique, which suggests that all students participated in the group task, which makes them qualified to be sampled using a convenient method. This method is appropriate because it enables researchers to use any member of the population that is convenient to reach since all members process the needed characteristics [30]. To gather data, this study employed semi-structured interviews as a data collection method. Semi-structured interviews allow for a flexible yet guided approach to elicit participants' perspectives, experiences, and insights regarding conflicts during collaborative tasks [31]. This method allows the researchers to have a predefined set of questions while also allowing for follow-up questions and probing to delve deeper into participants' responses [32]. Using semi-structured interviews enabled researchers to gather rich qualitative data that provide in-depth insights into the experiences and perceptions of the participants regarding potential conflicts during collaborative tasks. In analysing the collected data, the study employed thematic analysis. Thematic analysis is a qualitative analysis method that involves identifying patterns, themes, and categories within the data [33,34]. By systematically coding and categorising the interview data, the researchers identified the recurring themes and patterns related to potential factors of conflicts during collaborative tasks and possible mitigating strategies. Thematic analysis enabled the researchers to make sense of the qualitative data, identify key issues and factors influencing conflicts, and derive meaningful findings that can inform strategies for conflict mitigation. This method ensures a rigorous and systematic analysis of the data, contributing to the validity and reliability of the study's findings. --- Ethical Consideration Ethical considerations were carefully addressed throughout the study. Informed consent was obtained from all participants, ensuring they were fully aware of the study's purpose, procedures, potential risks, and benefits before participating. Confidentiality and anonymity were maintained by assigning participants pseudonyms and ensuring their personal information remained secure and undisclosed. In the analysis below, pseudonyms such as S1, S2, S3, S4, S5 to S10 were used to represent the participants. The study also adhered to principles of voluntary participation, allowing participants to withdraw from the study at any time without penalty or repercussion. The research design and data collection procedures were reviewed to ensure compliance with ethical guidelines to safeguard the rights and well-being of the participants. Throughout the study, respect for the participants' autonomy, privacy, and dignity were prioritised, and every effort was made to minimise any potential harm or discomfort associated with discussing conflicts. --- Presentation of Data These sections present the data analysis of the collected data. The data are presented thematically in response to the two research questions and their findings are also discussed along with the data presentation. Two themes were generated to respond to question 1, and two themes were generated to also respond to question 2. The table below defines the thematic representation of data. Table 1 presents the thematic representation of the data and discussion of findings in themes to respond to each research question. Two themes were made to respond to each research question. See the analysis below. The data collected to answer research question 1 showed that students in collaborative tasks lack a culture of open dialogue and effective communication systems to ensure peaceful and collaborative engagement among themselves. This is shown in the participants' statements below: S10: "During the discussion, some students feel marginalised or unheard, which always contributes to conflicts." S2: "There's a fear of conflict and confrontation among students. We need to create an environment where everyone feels comfortable speaking up and discussing their viewpoints without fear of judgment or backlash." S3: "Yhoo, our conversations are sometimes difficult, but that only allows conflicts to simmer beneath the surface. We did not encourage effective communication, which could provide opportunities for constructive discussions. In this case, our discussion sometimes is chaotic." S1: "I think one of the main factors is the lack of open dialogue culture. People are hesitant to express their opinions or concerns openly, which leads to misunderstandings and unresolved issues." S9: "We do not listen to one another, which usually hinders our understanding. Not understanding each other's perspectives opens up unnecessary arguments and conflicts." Participant S10 s statement highlights that some students feel marginalised or unheard during discussions, which contributes to conflicts. This suggests that power dynamics or communication barriers within the group may need to be addressed to create a more inclusive and equitable environment. Participant S2 mentions the fear of conflict and confrontation among students, emphasising the need to create an environment where everyone feels comfortable expressing their viewpoints without fear of judgment or backlash. This statement recognises the importance of psychological safety within the group, which can promote open dialogue and constructive discussions. Also, participant S3 acknowledges that their conversations sometimes become difficult and chaotic, leading to conflicts. This indicates a lack of effective communication within the group, where issues may remain unresolved or simmer beneath the surface. In the same vein, S1 identifies the lack of an open dialogue culture as a main factor contributing to conflicts. This aligns with other participants' statements and emphasises the importance of fostering an open environment where individuals feel encouraged and comfortable expressing their opinions and concerns. Participant S9 also points out the lack of listening to one another, which hinders understanding and leads to unnecessary arguments and conflicts. This highlights the significance of active listening in fostering better understanding, empathy, and collaboration within the group. These statements collectively show that there is a lack of inclusive and open communication culture where individuals feel empowered to speak up, actively listen to each other, and engage in constructive discussions. Finding: The analysis reveals that the lack of a culture of open dialogue contributes to conflicts during collaborative tasks among undergraduate students. This finding aligns with the existing empirical literature on collaborative tasks and conflict management, which emphasises the importance of open communication, psychological safety, active listening, and inclusive environments. [35] found that the lack of a culture of open dialogue contributes to conflicts during collaborative tasks among undergraduate students. In the same vein, [36] also found that lack of a culture of open dialogue contributes to conflicts during collaborative tasks among undergraduate students. Studies have shown that when students feel empowered to express their opinions, concerns, and perspectives openly, conflicts can be minimised [37][38][39]. Additionally, fostering a culture of openness by promoting effective communication practices enhances understanding, reduces misunderstandings, and prevents conflicts from escalating [40]. --- Question 1, Theme 2: Lack of Clear Guidelines and Expectations The data collected indicate that students lack clear guidelines and individual expectations during their collaborative engagement, which often facilitates conflicts that hinder the group outcomes. See the below statements: S6: "There is no clear guidelines, and when there are no clear guidelines, it's harder to hold people accountable. Some may take advantage or shirk their responsibilities, which creates tension within the team." S7: "Without clear guidelines, decision-making becomes chaotic. I can say our lecturers do not give us a clear and/or establish how decisions will be made and who has the final say." S6: "When there are no clear guidelines or expectations, it's easy for misunderstandings and conflicts to arise. Because each of us has different assumptions about our roles, responsibilities, and deadlines." S4: "We do not have a predetermined guideline to help us manage expectations and minimise conflicts. It sets the foundation for effective collaboration and ensures that everyone understands their roles and responsibilities." S8: "Unclear expectations also lead to frustration and conflicts with me. Because we need to ensure that everyone is on the same page regarding the project's objectives, deliverables, and timelines, but the reverse is the case sometimes." The participants' statements collectively highlight the significance of clear guidelines and expectations in mitigating conflicts during collaborative tasks. Participant S6 empha-sises that it becomes challenging to hold individuals accountable without clear guidelines, leading to tension within the team. Participant S7 echoes this sentiment, pointing out that without clear guidelines, decision making becomes chaotic, and there is ambiguity regarding decision-making authority. Participant S6 further emphasises that unclear guidelines or expectations can give rise to misunderstandings and conflicts, as team members may have different assumptions about roles, responsibilities, and deadlines. Participant S4 emphasises the need for predetermined guidelines to manage expectations and minimise conflicts, as clear guidelines establish the foundation for effective collaboration. Lastly, participant S8 highlights how unclear expectations lead to frustration and conflicts. Finding: The analysis of the participants' statements reveals a key finding: the lack of clear guidelines and expectations during collaborative tasks among undergraduate students. The participants emphasised that the absence of clear guidelines can lead to accountability issues, ambiguity in decision making, misunderstandings, and frustration, ultimately resulting in conflicts within the team. These findings align with the existing empirical literature on collaborative tasks, which highlights the significance of clear guidelines and expectations for effective teamwork and conflict management. Studies have shown that when roles, responsibilities, and decision-making processes are clearly defined, it reduces ambiguity, promotes accountability, and enhances communication and collaboration among team members [41,42]. Clear guidelines provide a shared understanding of expectations and help manage conflicts arising from differing assumptions or interpretations [43]. The study of [44] also confirmed that the lack of clear guidelines and expectations during collaborative tasks among undergraduate students is a problem. This is also supported by the argument of [45] that the way collaborative work is usually planned is not very effective among university students. Therefore, no implementation of clear guidelines promotes conflicts and establishes a foundation for ineffective collaboration, disintegrating team members against working towards shared objectives. --- Question 2, Theme 1: Promoting a Culture of Open Dialogue As indicated by the data, one of the most effective strategies to mitigate conflicts during collaborative tasks among undergraduate students in a South African university is promoting a culture of open dialogue. This is supported by the participants' statements below: S1: "Creating a culture of open dialogue is key. We should encourage active communication, where everyone feels comfortable expressing their thoughts and concerns openly." S10: "We should prioritise active listening and empathy. By truly understanding each other's viewpoints and validating them, we can prevent misunderstandings and conflicts." S2: "Effective communication is crucial for conflict mitigation. We need to improve our listening skills, truly understand each other's perspectives, and engage in respectful and constructive conversations." S3: "We need safe spaces where everyone feels valued and respected. It's important to encourage active participation and make sure everyone's voice is heard." S9: "Regular team meetings can enhance communication and build trust among team members. It provides an opportunity to share updates, address concerns, and collectively problem-solve." The participants' statements collectively highlight the importance of creating a culture of open dialogue, active communication, active listening, empathy, and safe spaces within collaborative tasks among undergraduate students. Participant S1 emphasises the need to encourage open dialogue where everyone feels comfortable expressing their thoughts and concerns openly. Participant S10 emphasises the importance of active listening and empathy to prevent misunderstandings and conflicts. Participant S2 underscores the crucial role of effective communication, improved listening skills, and understanding perspectives for conflict mitigation. Participant S3 highlights the significance of safe spaces where everyone feels valued, respected, and encouraged to actively participate and have their voices heard. On the side of participant S9, emphasis was laid on the value of regular team meetings in enhancing communication, building trust, and providing opportunities for addressing concerns and problem solving. These statements emphasise the role of open dialogue, active communication, listening skills, empathy, and creating a safe and inclusive environment in fostering effective collaboration, conflict resolution, and positive interpersonal relationships within teams. Finding: The analysis of the participants' statements reveals a significant finding regarding the importance of creating a culture of open dialogue, active communication, active listening, empathy, and safe spaces within collaborative tasks among undergraduate students. The participants emphasised that fostering an open environment where everyone feels comfortable expressing their thoughts and concerns, actively listening to each other, understanding different viewpoints, and creating safe spaces where all voices are valued and respected are essential for conflict mitigation and effective collaboration. These findings align with the existing empirical literature on collaborative tasks and communication in team settings. Studies have shown that promoting open dialogue and active communication contributes to better team understanding, trust building, and conflict resolution [46,47]. Active listening and empathy play crucial roles in preventing misunderstandings and conflicts while creating safe spaces, allowing for inclusive participation and valuing diverse perspectives [48]. Therefore, incorporating these strategies informed by empirical data can create an environment that fosters effective communication, enhances collaboration, and reduces conflicts, ultimately leading to better outcomes in collaborative tasks among undergraduate students. --- Question 2, Theme 2: Establishing Clear Guidelines and Expectations Based on the data, one of the most effective strategies to mitigate conflicts during collaborative tasks among undergraduate students is establishing clear guidelines and expectations. This is supported by the participants' statements below: S6: "Establishing a clear framework for conflict resolution will assist us to work well with one another. That when we have rules and guidelines on how conflicts will be addressed and resolved, will probably ensure fairness and avoids prolonged disputes." S7: "In every meeting, we need to set clear expectations to help manage everyone's assumptions and minimise misunderstandings. This will allow for a shared understanding of project objectives and fosters accountability." S6: "Establishing clear guidelines and expectations is vital. It helps ensure that everyone understands their roles, responsibilities, and deadlines, reducing the chances of conflicts arising." S4: "Regular check-ins and progress updates by the group leaders can help keep everyone aligned and accountable. That is, reporting progress and addressing any challenges can prevent conflicts from escalating because everyone will be made to participate." S8: "I think there is nothing bad if we have a well-defined decision-making process and a guideline on how decisions will be made and who holds decision-making. This I believe, can prevent conflicts related to decision-making disagreements." The participants' statements collectively argue the significance of establishing a clear framework for conflict resolution, setting clear expectations, establishing guidelines and expectations, regular check-ins, and a well-defined decision-making process in mitigating conflicts during collaborative tasks. The statement of Participant S6 emphasises the need for a clear framework for conflict resolution to ensure fairness and avoid prolonged disputes. Also, participant S7 supports the need to set clear expectations to manage assumptions and minimise misunderstandings, fostering accountability. Participant S6 reiterates the importance of clear guidelines and expectations in understanding roles, responsibilities, and deadlines, reducing conflicts. Participant S4 highlights the value of regular check-ins and progress updates to keep everyone aligned and accountable, preventing conflicts from escalating. Participant S8 suggests that a well-defined decision-making process and guidelines can prevent conflicts related to decision-making disagreements. These findings argue that incorporating these strategies, informed by empirical data, can contribute to a more harmonious and productive collaborative environment among university undergraduate students during collaborative engagement. Finding: The analysis of the participants' statements revealed the importance of establishing clear frameworks, guidelines, expectations, regular check-ins, and a well-defined decision-making process in mitigating conflicts during collaborative tasks. The participants emphasised that establishing clear guidelines and expectations promotes fairness and prevents prolonged disputes, while setting clear expectations fosters accountability and minimises misunderstandings. Additionally, clear guidelines and expectations regarding roles, responsibilities, and deadlines reduce the chances of conflicts arising. Regular check-ins and progress updates help keep everyone aligned and accountable, while a well-defined decision-making process and guidelines prevent conflicts related to decision-making disagreements. These findings align with the existing empirical literature on conflict management and effective teamwork. Research suggests that clear frameworks, guidelines, and expectations promote clarity, understanding, and accountability within teams, reducing conflicts and improving collaboration [49,50]. Moreover, regular communication and well-defined decision-making processes establish a shared understanding and facilitate smoother team interactions [51]. By incorporating these strategies informed by empirical data, universities can create an environment conducive to effective collaboration, conflict resolution, and positive team dynamics during collaborative tasks among university undergraduate students. --- Conclusions and Recommendations In conclusion, this study explored potential conflicts during collaborative tasks among university undergraduate students within a specific South African university context and presented strategies to effectively mitigate these conflicts. The findings of the study indicate that the absence of a culture of open dialogue and the lack of clear guidelines and expectations are significant contributing factors to conflicts during collaborative tasks. Conversely, the study also found that promoting a culture of open dialogue and establishing clear guidelines and expectations are effective strategies for conflict mitigation. These conclusions were derived from a participatory research design that aimed to transform collaborative group tasks among undergraduate students. The implications of the study's conclusion on Social Identity Theory suggest that by creating a culture of open dialogue and establishing clear guidelines, university undergraduate students can effectively manage conflicts during collaborative tasks while promoting positive social identities within the student population. This, in turn, can lead to enhanced teamwork, improved collaboration, and a more inclusive and supportive group environment that aligns with the principles of Social Identity Theory. Based on the conclusion, the following recommendations were made: --- • To minimize misunderstandings and conflicts in collaborative tasks, instructors, facilitators, and team leaders play a pivotal role. They should define specific roles and responsibilities for each team member, clearly state and agree upon deadlines, and outline the decision-making process. Regular check-ins and progress updates should be scheduled to reinforce guidelines and maintain alignment, providing a platform for accountability. These sessions allow team members to report on their progress, discuss challenges faced, and receive constructive feedback. --- • In terms of decision making, team leaders and decision-making authorities should implement a well-defined process to prevent conflicts arising from disagreements and ambiguity. Ensuring transparency and inclusivity in the decision-making process is crucial. Clear guidelines should be provided on decisions, specifying consensus, majority vote, or delegation to individuals or sub-groups. The authority for making final decisions should also be clearly established, designating a specific individual or group responsible for decisions when consensus cannot be reached. These structured guidelines ensure fairness and efficiency in the decision-making process, reducing the likelihood of conflicts and ensuring timely and informed decisions. --- Implications of the Theory This study concludes that conflicts during collaborative tasks among undergraduate students can be mitigated by promoting a culture of open dialogue and establishing clear guidelines and expectations. Social Identity Theory posits that individuals categorise themselves and others into various social groups, leading to the development of a social identity. This social identity influences an individual's behaviour and attitudes towards others, affecting group dynamics and potentially leading to intergroup conflicts. The implications of the study's conclusion on SIT suggest that fostering open communication and clear guidelines can lead to a more supportive and inclusive group environment, promoting positive social identities and reducing conflicts. By encouraging active communication, creating safe spaces for expression, establishing clear roles and responsibilities, and implementing well-defined decision-making processes, universities can create a framework that promotes positive social identities, reduces misunderstandings, and ultimately leads to enhanced collaboration and a harmonious environment. This aligns with the principles of SIT as it encourages the formation of positive social identities, promoting a sense of belonging and cooperation among group members, leading to improved teamwork and collaboration. Therefore, the recommendations made in this study are crucial for enhancing collaboration and minimising conflicts, as they directly address the underlying social dynamics that influence group interactions and contribute to the development of a supportive and inclusive group environment. --- Contribution to Knowledge The significance of the findings in this study, despite addressing well-known reasons for group conflicts, lies in its contextual specificity and practical applicability. Focusing on a South African university setting, the research provides tailored insights and strategies directly relevant to the unique cultural, social, and educational dynamics in this context. This ensures that the proposed interventions are not just generic recommendations but are grounded in the specific experiences and needs of the students involved. Furthermore, this study contributes to the existing body of knowledge by validating and reinforcing the importance of addressing group conflicts in collaborative tasks while offering a fresh perspective and localised solutions. In doing so, the research upholds the value of contextspecific studies. It demonstrates that even well-established concepts can benefit from re-examination and adaptation to settings, ultimately enhancing the effectiveness of collaborative learning and improving academic outcomes for undergraduate students in South Africa. --- Data Availability Statement: The supporting data for the findings of this research can be obtained upon request from the corresponding author. While the article does contain the mentioned data, adherence to ethical guidelines obtained for the study prohibits its public accessibility in order to uphold confidentiality between the author and participants. This approach ensures the protection of all communication during the study and maintains compliance with the established rules of engagement between the parties involved. --- Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. ---

This study addresses potential conflicts during collaborative tasks among university undergraduate students and presents strategies to mitigate such conflicts at a university in South Africa. Drawing on the unique context of South Africa, characterised by its rich cultural diversity and historical challenges, Social Identity Theory (SIT) was used to theorise the study within a transformative paradigm, qualitative approach and participatory research design. Ten undergraduate students were sampled and interviewed. Thematic analysis was employed to make sense of the data. The study found that a lack of a culture of open dialogue and clear guidelines and expectations leads to conflict, and the study also found that promoting a culture of open dialogue and establishing clear guidelines and expectations during collaborative projects can help prevent potential conflicts among university undergraduate students during collaborative engagement. The study concludes that promoting a culture of open dialogue and fostering establishing clear guidelines and expectations provide undergraduate students with the tools to manage group conflicts.

Introduction and Related Work Homophobic/Transphobic content on social media intends to harm Lesbian, Gay, Bi-sexual . It is a type of abuse that involves physical violence such as killing, maiming, beating, or explicit sexual violence such as rape, molestation, penetration, or an invasion of privacy by disclosing personal information. Some of the example phrases include "Gays deserve to be shot dead," "Someone should rape that lesbo to turn her into straight," "Gays should be stoned," "You lesbos, I know where you live, I will visit you tonight," "beat the fag out of him," "You should kill yourself". 1 https://github.com/Muskaan-Singh/ Homophobia-and-Transphobia-ACL-Submission. git Social media has provided the freedom to express their views and thoughts on anything , leading to unpleasant things on the internet . Online offensive language has been identified as a worldwide phenomenon diffused throughout social media platforms such as Facebook, YouTube, and Twitter during the last decade . It is even more distressing for Lesbian, Gay, Bisexual, Transgender, and other vulnerable individuals . Because of who they love, how they appear, or who they are, LGBT+ people all across the globe are subjected to violence and inequity, as well as torture and even execution . Sexual orientation and gender identity are essential components of our identities that should never be discriminated against or abused . However, in many countries, being identified as LGBT+ will cost lives, so the vulnerable individual goes to social media to get support or share their stories to find similar people . Identifying such information from social media would eliminate the severe societal problem and prevent formulating online platforms toxic unpleasant to LGBT+ people while also attempting to eliminate equality, diversity, and inclusion. There are many rules and regulations to protect LGB persons, but they omit protection based on gender identity or expression or transgender adolescent experiences . Lack of annotated data has restrained the research on homophobic and transphobic detection. find the linguistic behavior in LGBT+ for the Chinese language. The research experiments present the traditional system's failure for complex dimensions to detect the gender from the text. --- curated lexicons in --- Shared Task Description In the shared task, participants are provided with comments extracted from social media2 . The challenge was to predict whether or not it contains any form of homophobia/transphobia detection. The participants are provided with a seed data , sampled as in Table: 1 respectively. The comments are manually annotated to show whether the text contains homophobia/transphobia. We also did reports data distribution across Non-anti-LGBT+ content, Homophobic, Transphobic, for all the languages in Table 2. Some examples for the Non-anti-LGBT+ content, Homophobic, Transphobic comments are presented in Table 3. In addition, it also provided a baseline code with machine learning algorithms . --- Proposed Methodology This section presents the proposed methodology for classifying Non-anti-LGBT+ content, Homophobic, and Transphobic content from social media posts. Initially, we preprocess the comments for special characters, stopwords, emojis, and punctuation removal using NLTK library . Further, we extract the features, tokenize all the sentences and map the tokens to their word IDs. For every sentence in the dataset, we follow a series of steps tokenize the sentences prepend the [CLS] token to the start append the [SEP] token to the end map the token to their IDs pad or truncate the sentenced to max length mapping of attention masks for [PAD] tokens. We padded and truncated the max_length=30. The generated sequence sentences are passed for encoding with its attention mask . Afterward, we feed these embeddings for pretraining the XLM ROBERTA . It significantly aims at cross-lingual transfer tasks for pre-trained multilingual language models. The model performs exceptionally well on low resource languages at a scale. The empirical analysis presents positive transfer and capacity delusion. Further, the model also allows multilingual modeling without sacrificing per-language performance. It has shown competitive results with strong monolingual models on GLUE. After the pretraining, we fine-tune the model in the English language, and finally, we test on Tamil and Tamil-English languages. --- Experimental Setup We use V1 100 GPU with 53GB RAM alongside 8 CPU cores for the experimental setup. We divide the entire dataset in 90:10 for train and validation of 8 batches, with learning rate and Adam optimizer with epsilon . We feed a seed_val of 42. For calculating the training loss over all the batches, we use gradient descents with clipping the norm to 1.0 to avoid exploding gradient problem. --- Results We test our model for the dataset . The classification report for our proposed and the top-performing model over the test set can be seen in Table 7. The proposed model has proved itself remarkable by achieving 0.40, 0.85, 0.89 F-score with 1 st , 1 st ,8 th rank for Tamil and Tamil-English, English respectively on the leaderboardhttps://competitions. codalab.org/competitions/36394# learn_the_details-results. We also report, analysis of our results in Table : 6 corresponding to Non-anti-LGBT+ content, Homophobic, Transphobic labels. • For the English language, 0.94, 0.54 are the reported precision, and recall, which is relatively 0.01, 0.03 more than the average and 0.01, and 0.04 less than the best performing model respectively. The reported F1-Score is 0.40 of our proposed model which is 0.03 less than the average, and 0.21 less than the best-performing. • For the Tamil language, 0.94, 0.88, and 0.85 are the reported Precision, Recall, and F1score, relative, 0.09, 0.18, and 0.18 more than --- Preprocessing Feature Extraction the average. As we were the best-performing submission, we did not report the scores and differences from our submission. E [CLS] E 1 E 2 E N C T 1 T 2 T N Non-anti- LGBT+content XLM RoBERTa XLNI Transphobic Homophobic Fine tuning on English Language XLM RoBERTa XLNI E [CLS] E 1 E 2 E N C T 1 T 2 T N XLM RoBERTa XLNI E [CLS] E 1 E 2 E N C T 1 T 2 T N --- XLM • For the Tamil English language, 0.63, 0.60, and 0.61 are the reported Precision, Recall, and F1-score, relative, 0.09, 0.08, and 0.10 more than the average. As we were the bestperforming submission, we did not report the scores and differences from our submission. The qualitative analysis predicted results are in Table 6. The true instances, "Best movie and people not understand relationship feeling I miss my life" and "This is even among animals and many other species. What country are you talking abt.Just foolish!" are labeled as Non-anti-LGBT+content and Homophobic, respectively. Unlike the other instances, these statements have precise negative/positive phrases that can help detect the sentiments. While the cases, "gay culture does not suit the Indian culture. that's it." labeled as Non-anti- LGBT+content, but it is a homophobic comment on reading the sentence. It indicates that the model focused more on words such as "gay" and "suit" rather than the entire meaning of the statement. "Hormonal and psychological problem!!! Nothing more nothing less !!! Don't bring nature here and make it dirty !!! " instance is labeled as homophobic, but in our opinion, it is supporting the cause. It signifies that the model is more focused on the negative sentiments such as "fool" and "animals" rather than understanding the entire context of the comment. --- Conclusion In this paper, we present our classification system; given comments, it predicts whether or not it contains any form of homophobia/transphobia with a zero-shot learning framework. Our system submission achieved 0.40, 0.85, 0.89 F1-score for Tamil and Tamil-English, English with ranks respectively. We also performed a qualitative analysis. The system performs precisely on negative/positive phrases such as "fool" and "animals" rather than understanding the entire context of the comment. We intend to work on a multi-task learning framework to handle different kinds of homophobic/transphobic by capturing context in the future. We also aim to detect multilingual homophobic/transphobic comments in the code-mixing scenarios.

The increased expansion of abusive content on social media platforms negatively affects online users. Transphobic/homophobic content indicates hatred comments for lesbian, gay, transgender, or bisexual people. It leads to offensive speech and causes severe social problems that can make online platforms toxic and unpleasant to LGBT+people, endeavoring to eliminate equality, diversity, and inclusion. In this paper, we present our classification system; given comments, it predicts whether or not it contains any form of homophobia/transphobia with a Zero-Shot learning framework. Our system submission achieved 0.40, 0.85, 0.89 F1-score for Tamil and Tamil-English, English with (1 st , 1 st ,8 th ) ranks respectively. We release our codebase here 1 .

Introduction The COVID-19 pandemic brought significant changes, not only in the field of public health with the adoption of strict confinement and biosecurity measures, but also in the field of work and employment. The adoption of teleworking worldwide as the first option to continue operations and provide services, especially during the second quarter of 2020, was one of the most remarkable transformations regarding workplaces and working conditions [1,2]. Although teleworking as a working modality was not new, its adoption as a response to contain the spread of the pandemic enhanced the relevance of several challenges that must be addressed, not only by academics but by employers and policymakers. Among these challenges are the work organization, safety and occupational health, the rapid acquisition of competencies , and the simultaneous coexistence of the work and family spheres in the same physical space [3][4][5]. According to the International Labour Organization [6], before the COVID-19 pandemic, 7.9% of the global workforce had adopted teleworking as a working modality. However, the mobility restrictions derived from the pandemic significantly increased these numbers, especially in occupations that could be carried out with limited physical contact. Despite the limitations in measuring working from home during the pandemic, the ILO [6] estimated that during the second quarter of 2020, 17.4% of the world's workers worked from home, this proportion being higher in high-income countries than in upper-middle- or lower-middle-and low-income countries . The teleworking panorama in Latin America and the Caribbean was heterogeneous due to, among other factors, the access to the technologies necessary for this working modality and the socioeconomic differences between countries. During the second quarter of 2020, the proportion of workers working from home was higher in Argentina , Costa Rica , Chile , Peru , and Mexico . In contrast, Brazil and Ecuador reported lower proportions of workers who adopted teleworking; 10.7% and 10.6%, respectively. Due to the region's disparities, employees with higher education and who worked in professional, technical, administrative, or managerial occupations adopted teleworking in a greater proportion than informal or low-skilled young workers [6]. Due to the COVID-19 pandemic, the health emergency was declared in Ecuador on 16 March 2020 by Decree 1017 [7]. During March and the first days of April 2020, the healthcare system in Guayaquil exceeded its capacity. According to the Ecuadorian Civil Registry Office [8], the death toll in Guayaquil exceeded 400 people per week from March to May. As a result of the health emergency that the country, especially Guayaquil, was going through due to the rapid increase of COVID-19 positive cases, general quarantine and strict confinement measures were established. According to the Ecuadorian Ministry of Labour statistics [9,10], a total of 14 thousand workers had adopted teleworking as a working modality from its introduction in 2016 [11] until before the health emergency. At the beginning of the pandemic, more than 208 thousand workers adopted teleworking as their primary working modality [9], while at the end of the first quarter of 2020, the number of teleworkers increased by 56% , and by the end of July 2020, more than 433 thousand workers adopted this modality. Currently, a little more than 457 thousand workers [10], representing approximately 6% of employed workers, continue to telework. Before the pandemic, the Ecuadorian Ministry of Labour issued Ministerial Agreement No. MDT-2016-190 [11], which regulated teleworking in the private sector. Nevertheless, during the pandemic, several regulations regarding teleworking were developed by the Ministry of Labour [12,13] or approved by the National Assembly [14]. For example, the Ministerial Agreement No. MDT-2020-076 [12] established a general framework for applying teleworking during the health emergency declaration. In order to promote economic and productive reactivation, as well as the maintenance of employment conditions, the Organic Humanitarian Act [14] established that employers might reduce the working day by up to 50% for up to one year from the entry into force of the law, among other factors concerning to teleworking. In addition, following the provisions of the Organic Humanitarian Act, the Ministerial Agreement No. MDT-2020-181 [13] extended the current regulation regarding workers' rights under this working modality, the establishment of the right to disconnection, and the registration of workers under this modality. --- Work-Family Conflict Work-family conflict has been widely discussed in scholarly literature [15][16][17][18][19][20]; nevertheless, its relevance has increased during the last years [21]. Netemeyer et al. [22] conceived it as a two-way psychological phenomenon that includes the work-family conflict and family-work conflict. From this theoretical conception, work-family conflict can also be considered a type of role conflict [23]. A role conflict is the simultaneous presence of two or more sets of pressures so that the fulfilment of one role makes difficult the fulfilment of the others [24]. Even though an incompatibility might exist between work and family roles, it does not mean that they cannot support each other. Kahn et al. [25] mentioned a conflict between both roles because of their opposing characteristics. Hence, work-family conflict can be defined as an inter-role conflict that has three approaches: time-based conflict, strain-based conflict, and behavior-based conflict. Amstad et al. [26] pointed out that work-family conflict occurs when experiences and commitments at work interfere with family life. In contrast, family-work conflict arises when family responsibilities interfere with work obligations. Cifre and Salanova [27] established that family-work conflict influences a deterioration in parental function and enhances adverse outcomes such as irritation, anxiety, and depression, among others. For their part, Palmer et al. [28] mentioned that work-family conflict is associated with negative results such as physical tension, burnout, job dissatisfaction, poor job performance, and intention to leave work. Mansour and Tremblay [29] found that psychosocial safety climate is negatively related to work-family conflict, and family-supportive supervisor behavior mediates this relationship. According to the role conflict theory, work and family-related factors can boost role conflict [30]. The role conflict perspective is based on two premises. The first premise establishes that the demands derived from performing multiple simultaneous roles lead to the experience of role conflict [31] because individuals have limited time and energy. The second premise indicates that the experience of role conflict causes psychological distress and burnout, which reduce the sense of wellbeing [32]. Additionally, according to Bakker and Demerouti [33], the job demands-resources model suggests that job demands are precursors of a health damage process. Job resources are advocates of a motivational process. The JDR model specifies how demands and resources interact and predicts important organizational outcomes. Based on this approach, excessive job demands negatively affect work and family wellbeing, resulting in frustration and dissatisfaction [34]. Previous studies have shown that the JDR model can predict burnout when job demands are higher than job resources, and work engagement when job resources are higher than job demands [35,36]. --- Burnout Burnout is possibly one of the most studied topics in the field of occupational health and psychosocial risks. There is extensive literature [37][38][39] that has addressed various aspects, such as those shown by the subsequent meta-analyses: the higher prevalence of burnout syndrome among surgical/urgency residencies than in clinical specialties [40]; the association between physician burnout and patient safety [41]; the relationship between burnout, depression, and anxiety [42], among others. Moreover, numerous studies have analyzed several factors associated with burnout in recent years [43][44][45][46][47][48][49]. Guidetti et al. [43] proposed a theoretical framework to explain different types of burnout, taking into account the sense of guilt as a symptom. Ochoa [45] determined that the legal framework influences the burnout and organizational outcomes relation. For their part, Fiorilli et al. [47] and Duan et al. [46] determined that social support from different sources helps to reduce burnout. Duan et al. [46] highlighted that workplace violence promotes burnout syndrome among Chinese physicians. Based on the evidence from hospitality professionals, Koo et al. [48] identified that material rewards such as promotion and incentives reduce the perception of burnout. West et al. [50], in a systematic review and meta-analysis, determined that individual, structural, or organizational strategies can clinically reduce burnout among physicians. In addition, Mansour and Tremblay [51] explored that burnout mediates the relationship between psychosocial safety climate and safety workarounds. Their results concluded that burnout is negatively affected by psychosocial safety climate, and safety workarounds are positively influenced by burnout. More recent research during the COVID-19 pandemic highlights the importance of the study of burnout [52][53][54], since this pandemic brought with it adverse psychosocial effects such as stress, fear, and frustrations [55], without leaving aside the impact that the confinement and the pandemic itself has had on workplaces and working conditions [56,57]. In this line, Yıldırım and Solmaz [58] explored the relationship between COVID-19 stress and COVID-19 burnout mediated by resilience, determining a positive relationship between stress and burnout. Similar results regarding the association between stress, anxiety, depression, and burnout were found by Luceño-Montero et al. [52]. Another study that highlights the factors that influence burnout in the context of the COVID-19 pandemic is the one carried out by Giusti et al. [59], where, based on a sample of health professionals, it was confirmed that the fear of infection enhances the sense of emotional exhaustion and depersonalization. At the same time, friend support reduces burnout in all its dimensions. Regarding the relationship between work-family conflict and burnout, extensive literature analyzes this relationship in different contexts [37,[60][61][62][63][64][65][66][67][68][69], even in the COVID-19 pandemic [70]. Moreover, several factors, such as coping strategies [71], organizational support [63], or psychological capital [72], have been evaluated as mediating or moderating variables. Likewise, the literature that addresses the issue of work overload and burnout is extensive [73,74]. This article analyzes the relationship between work-family conflict and burnout, incorporating the effect of teleworking overload during the COVID-19 pandemic. There are several approaches to conceptualize and measure burnout, among which stand out the Maslach Burnout Inventory [75], the Questionnaire for the Evaluation of the Burnout Syndrome at Work [76,77], and the Shirom Burnout Scale [78]. In this study, burnout is considered as a response to chronic job stress that constitutes negative attitudes and feelings and is primarily characterized by the experience of physical fatigue, cognitive weariness, and emotional exhaustion. The first dimension Shirom [78] refers to is "physical fatigue" and refers to feelings of tiredness and low energy levels in carrying out daily tasks at work, such as getting up in the morning to go to work. The second dimension, "emotional exhaustion", refers to feeling too weak to display empathy to clients and coworkers and lacking the energy needed to invest in relationships with other people at work. Finally, the third dimension, "cognitive weariness", refers to feelings of slow thinking and reduced thinking agility. Each dimension of burnout covers the draining and depletion of energetic resources in a particular domain. --- Teleworking Telework is a polysemic term on which there is abundant literature [79][80][81][82]. It has evolved since its initial use by Nilles [83] in the 1970s, with the practice of working at home to avoid gasoline consumption in the United States due to the oil crisis of those years [83,84]. In a recent report dedicated to teleworking and its modalities, the ILO [85] has established that four concepts must be taken into account in the world of teleworking, such as "remote work", "telework", "work at home", and "home-based work". "Remote work" comprises situations where the work is fully or partly carried out on an alternative worksite other than the default place of work; it can also be performed in various possible locations. "Teleworking", according to the ILO definition, is a subcategory of the broader concept of remote work. It includes workers who use information and communications technology or landline telephones to work remotely. For its part, "work at home" refers to work that takes place fully or partly within the worker's residence. Finally, the ILO points out that "home-based work: is a subcategory of "work at home", and comprises the work carried at home, regardless of whether the worker's home could be considered the default place of work. There are various definitions of teleworking, with different approaches, of which we comment on some, by way of illustration of the variety and breadth of the concept. Garrett and Danziger [86] defined teleworking as "the work performed by those whose remote work is from the home or a satellite office, those whose telework is primarily in the field, and those whose work is 'networked' in such a way that they regularly work in a combination of home, work, and field contexts". Other definitions, such as those proposed by Fonner and Roloff [87] and Konradt et al. [88], emphasize technology's partiality and contribution to this working modality. Konradt et al. [88] defined teleworking as a form of work organization in which the work is partially or entirely done outside the conventional company workplace with information and telecommunication services. In Ecuador, according to the Organic Humanitarian Act [14], teleworking "consists of the performance of activities or the provision of services using the information and communication technologies as a support for the contact between the worker and the employer, without requiring his physical presence in a specific workplace . The workers under this modality will enjoy all individual and collective rights, as well as social benefits". In addition, since its approval, both the Labour Code and the Organic Public Service Act recognize four types of teleworkers . During the COVID-19 pandemic, some studies have been published on teleworking [2,89,90]. Belzunegui-Eraso and Erro-Garcés [89] analyzed the implementation of teleworking on a massive scale during the first months of the pandemic. They highlighted the main problems in implementing this working modality, such as the impossibility of facilitating and installing equipment for workers to work remotely, among others. Andrade and Petiz Lousã [90] explored the relationship between teleworking and work-family conflict moderated by supervisor and coworker support in a Portuguese multi-professional sample. For their part, Pulido-Martos et al. [2] found that working modality moderates the relationship between social support and vigor at work. According to their results, hybrid work modality and teleworking reduce the influence of social support on vigor at work, since teleworking could decline the quality of professional relations. In this study, we agree with the definition of teleworking proposed by Bailey and Kurland [84], who state that telework, also known as virtual work, involves the use of computer technology to work from home or another place outside the traditional office during a part of the week. In addition, we agree with the ILO [85] definition of teleworking, but with the nuance that the modality was not voluntary but required by biosafety measures during the pandemic. --- Teleworking Overload Effects on Work-Family Conflict and Burnout The ILO [3] mentions that the appearance of teleworking as a more recurrent work modality during the last years generates greater attention towards the study of the relationship between work-family conflict and teleworking. Struggles in work and family spheres management occur almost daily and have consequences for professional activities and personal life [91]. The usual approach of studying the relationship between these two variables is to explore the nature of interactions between work and family activities [92]. However, researchers highlight the importance of examining how this relationship varies when teleworking is applied outside regular office hours [93,94], when there is a change in its frequency [95], or when dedication is considered [96,97]. Other studies have focused on studying work-family conflict and teleworking [98], considering the context and organizational support [99], the working conditions [100], and the personal and family characteristics of the teleworker when doing their activities [100][101][102][103], among other factors. Different results arose, depending on the particularities and the context of the analysis. Despite all those previous findings, the work environment that brought the COVID-19 pandemic generates great interest in exploring the relationship between these variables, especially when teleworking increased family-work conflict work-family conflict at the same time. Work overload is the perception of having too much to do [104,105] and can impact negatively on productivity [106], reduce organizational commitment, and increase absenteeism due to illness [107]. Various studies [106, [108][109][110][111][112][113][114][115][116] have associated work overload with high levels of work-family conflict [117]. People who are often working from home change their working hours and experience an increased likelihood of interruptions and distractions because of the presence of their family, especially during the COVID-19 pandemic [118]. The teleworking context during the COVID-19 pandemic gives the impression that employees save commutation time; therefore, that saved time could be used to extend the working hours [119]. There is also the point of view that working hours can be easily extended given that the employee is at home. For this reason, employees have experienced an increase in the working hours and the job demands [2,120,121]. Considering that work and family responsibilities increased during the confinement due to the COVID-19 pandemic [3], it would be assumed that teleworking overload affects the relationship between work-family conflict and burnout. As mentioned before, extensive literature addresses the relationship between workfamily conflict and burnout [60][61][62][63][64][65][66][67][68][69]71]. Nevertheless, when this relationship is tested in the context of teleworking modality, the literature is diverse. It gives us broad concerns that were magnified by the COVID-19 pandemic, such as the work intensification [122], the increase of job-related worries [123], and the promotion of role ambiguity [124], among others. The existing literature raises the advantages of teleworking [125,126], but several negative impacts on workers' health should be considered [62,124,125]. --- Research Objective and Hypotheses Based on the literature mentioned above, this study tested the research model shown in Figure 1. overload with high levels of work-family conflict [117]. People who are often working from home change their working hours and experience an increased likelihood of interruptions and distractions because of the presence of their family, especially during the COVID-19 pandemic [118]. The teleworking context during the COVID-19 pandemic gives the impression that employees save commutation time; therefore, that saved time could be used to extend the working hours [119]. There is also the point of view that working hours can be easily extended given that the employee is at home. For this reason, employees have experienced an increase in the working hours and the job demands [2,120,121]. Considering that work and family responsibilities increased during the confinement due to the COVID-19 pandemic [3], it would be assumed that teleworking overload affects the relationship between work-family conflict and burnout. As mentioned before, extensive literature addresses the relationship between workfamily conflict and burnout [60][61][62][63][64][65][66][67][68][69]71]. Nevertheless, when this relationship is tested in the context of teleworking modality, the literature is diverse. It gives us broad concerns that were magnified by the COVID-19 pandemic, such as the work intensification [122], the increase of job-related worries [123], and the promotion of role ambiguity [124], among others. The existing literature raises the advantages of teleworking [125,126], but several negative impacts on workers' health should be considered [62,124,125]. --- Research Objective and Hypotheses Based on the literature mentioned above, this study tested the research model shown in Figure 1. The objective of this article was to study the impact of work-family conflict on burnout, considering work overload, in teleworkers during the COVID-19 pandemic. Hence, the following research hypotheses were formulated: The objective of this article was to study the impact of work-family conflict on burnout, considering work overload, in teleworkers during the COVID-19 pandemic. Hence, the following research hypotheses were formulated: Hypothesis 1a . Work interference with family is positively related to the physical fatigue dimension of burnout during the COVID-19 pandemic. --- Hypothesis 1a . Work interference with family is positively related to the physical fatigue dimension of burnout during the COVID-19 pandemic. --- Hypothesis 1b . Family interference with work is positively related to the physical fatigue dimension of burnout during the COVID-19 pandemic. --- Hypothesis 2a . Work interference with family is positively related to the cognitive weariness dimension of burnout during the COVID-19 pandemic. --- Hypothesis 2b . Family interference with work is positively related to the cognitive weariness dimension of burnout during the COVID-19 pandemic. --- Hypothesis 1b . Family interference with work is positively related to the physical fatigue dimension of burnout during the COVID-19 pandemic. --- Hypothesis 2a . Work interference with family is positively related to the cognitive weariness dimension of burnout during the COVID-19 pandemic. --- Hypothesis 2b . Family interference with work is positively related to the cognitive weariness dimension of burnout during the COVID-19 pandemic. --- Hypothesis 3a . Work interference with family is positively related to the emotional exhaustion dimension of burnout during the COVID-19 pandemic. --- Hypothesis 3b . Family interference with work is positively related to the emotional exhaustion dimension of burnout during the COVID-19 pandemic. --- Hypothesis 4 . The presence of teleworking overload affects the relationships between workfamily conflict and burnout dimensions during the COVID-19 pandemic. To evaluate the hypotheses, we used data collected during the last week of July 2020 using an online survey. Work-family conflict and burnout were measured using the Gutek et al. [127] and Shirom [78] scales. We first conducted confirmatory factor analysis using the maximum likelihood estimation method to validate the dimensionality of the different constructs included in this study. After that, we tested the hypotheses using a structural equation model . Both dimensions of work-family conflict were considered as first-order independent variables. The three dimensions of burnout were the dependent variables. As in the CFA, we estimated SEM specifications using the maximum likelihood estimation method. We tested the effect of teleworking overload using a multigroup analysis. This study is innovative for several reasons. First, the research reveals the psychosocial consequences of a new modality of work overload and teleworking during the COVID-19 pandemic. Second, this article is one of the few in Latin America that addresses workfamily conflict and burnout and the influence of teleworking overload during the pandemic. Finally, the study highlights the importance of the economic and regulatory conditions and contingencies that have surrounded the modality of teleworking during the pandemic in Ecuador, which may have impacted consequences such as the normalization of a factor of high occupational risk, e.g., as work overload. The article is organized as follows. Section 2 describes the materials and methods, discussing how the data was collected and analyzed. Results and a discussion are presented in Sections 3 and 4, respectively. Finally, Section 5 highlights the conclusions along with the research limitations and perspectives. --- Materials and Methods --- Participants and Data Collection Procedure The study design was cross-sectional, and a convenience sample was used. Data was collected during the last week of July 2020. At the time of the data collection, a returnto-work plan due to the COVID-19 pandemic had started in Guayaquil, which allowed workers to adopt total or partial teleworking modalities. Participants were recruited mainly through word-of-mouth and social networks. They received an invitation with an anonymous link allowing them to fill in an online survey. Participation was voluntary. All participants were asked to indicate that they agreed to participate in the study with an online informed consent form. In addition, participants were informed about the importance and objectives of the research and its confidentiality nature. We obtained 1240 responses from workers located in Guayaquil, Ecuador. After dropping those who did not fully answer the questionnaire, a total of 1044 valid surveys were considered. Out of the 1044 respondents, 45% were male, and 55% were female. Regarding marital status, 60.6% of the participants were single, while 27.1% were married, 6.2% were in free union, 5% were divorced, and 1.1% were widowed. Most of the surveyed workers were millennials and had completed an academic degree . The average work experience of the participants was ten years . Concerning the job positions of the respondents, 71.8% worked in operational roles, while 28.2% worked in supervisory roles. In all, 72.8% of the participants worked in private enterprises and 27.2% in public institutions. Regarding the industry where participants work, 65.3% indicated they worked in the services industry and the commerce industry . In comparison, 34.7% indicated they worked in other industries . Concerning teleworking, 30.8% of the respondents worked in this modality more than 8 h a day, while 69.2% indicated they teleworked 8 h or less a day. --- Measures Work-family conflict: This construct was measured using the eight-item scale developed by Gutek et al. [127], which defines that work-family conflict is composed of two dimensions: work interference with family, and family interference with work. The items were scored on a five-point Likert scale ranging from "strongly disagree" to "strongly agree" . Example items were, for work interference with family dimension, "After work, I come home too tired to do some of the things I'd like to do", and for family interference with work dimension, "I'm often too tired at work because of the things I have to do at home". Burnout: Shirom's [78] 14-item scale was used to measure burnout. This scale comprises three dimensions: physical fatigue, cognitive weariness, and emotional exhaustion. The items were scored on a five-point Likert scale ranging from "strongly disagree" to "strongly agree" . Example items were, for physical fatigue dimension, "I feel tired", for cognitive weariness dimension, "My thinking process is slow", and for emotional exhaustion dimension, "I feel I am unable to be sensitive to the needs of coworkers and customers". Teleworking overload: A single item was used to measure teleworking overload: "How many hours do you telework a day?". --- Data Analysis To validate the dimensionality of the constructs included in this study, we conducted a confirmatory factor analysis using the maximum likelihood estimation method. First, we conducted a CFA for the work-family conflict and burnout constructs. The CFA specifications were tested using the overall sample data as well as two subsamples. The first group reported that they teleworked eight or fewer hours, while the second group teleworked more than eight hours. Second, we estimated a measurement model to verify if all constructs were correlated with each other [128]. We removed items with factor loadings of <0.5 from the CFA specifications to ensure adequate convergent validity levels [129,130]. Given that the chi-square to degrees of freedom ratio is sensitive to sample size, the comparative fit index , the goodness-of-fit index , the normed fit index , the Tucker-Lewis index , the root mean square error of approximation , and the standardized root mean square residual were used to evaluate the goodness of fit of the specifications to the data. Internal consistency of the dimensions of both constructs was assessed using the McDonald's omega composite reliability coefficient rather than the Cronbach's alpha coefficient in order not to underestimate reliability when there is considerable variation in factor loadings [130][131][132][133][134]. Once we evaluated the construct validity, we tested the hypotheses using a structural equation model where both dimensions of work-family conflict were considered independent variables. The three dimensions of burnout were the dependent variables. As in the CFA, we estimated SEM specifications using the maximum likelihood estimation method considering specific analysis for the overall sample and subsamples . In this study, we tested the effect of teleworking overload using a multigroup analysis. Based on this, the equivalence of the hypothesized causal structure was evaluated using progressively restrictive nested models [135][136][137]. If the equivalence is demonstrated, then the effect of teleworking overload will be confirmed. Specifically, we estimated six nested specifications . First, we estimated a baseline model for both groups . This specification allowed measurement and structural loadings, intercepts, and residuals to be estimated freely. Afterwards, we incorporated constraints to the different parameters to be estimated to test the equivalence across both groups . We assessed the goodness-of-fit of each of the specifications using a variety of indices and following the cutoffs suggested by Chen [138] . All models were estimated using IBM AMOS Version 24.0 for Windows. --- Results --- Descriptive Analysis Table 1 shows the mean and standard deviation of the dimensions of burnout and work-family conflict . We computed factor scores following non-refined methods [139]. Each indicator that comprises the dimension was multiplied by its corresponding factor loading, then we summed the resulting scores and divided them by the sum of the factor loadings. This computation yielded weighted mean factor scores where higher scores represent higher burnout and work-family conflict, respectively. Regarding the overall sample, burnout dimensions showed medium scores in physical fatigue , cognitive weariness , and emotional exhaustion . The work-family conflict dimensions also showed medium scores. The participants indicated that the work interference with family is higher than the family interference with work . When comparing these dimensions between G 1 and G 2 , some differences arose. Regarding burnout dimensions, physical fatigue scores were higher in G 2 than in G 1 , cognitive weariness scores were similar in G 1 and G 2 , and emotional exhaustion scores were higher in G 1 than in G 2 . We did not find statistically significant differences in these three dimensions among both groups. Regarding work-family conflict dimensions, work interference with family scores were higher in G 2 than in G 1 , and family interference with work scores were higher in G 1 than in G 2 . A statistically significant difference was determined in work interference with family scores between G 1 and G 2 . --- Confirmatory Factor Analysis and Reliability We conducted various CFAs to validate the dimensionality of the constructs included in this study. Burnout was evaluated using a three-intercorrelated-factor structure . At the same time, work-family conflict was assessed using a two-intercorrelated-factor specification . According to the results for the overall sample, the goodness-of-fit indices for the burnout scale ; SRMR = 0.028) as well as for the work-family conflict scale ; SRMR = 0.038) were adequate. For the G 1 subsample, the goodness-of-fit indices were appropriate for the burnout scale ; SRMR = 0.026) and for the work-family conflict scale ; SRMR = 0.037). In addition, fit indices were satisfactory for the G 2 subsample when evaluating burnout ; SRMR = 0.046) and work-family conflict ; SRMR = 0.043) scales factorial structure. As shown in Table 2, all factor loadings were statistically significant and over the cutoff value of 0.5 for both constructs considering the overall sample and G 1 and G 2 subsamples, which ensured adequate levels of internal consistency [130]. McDonald's omega coefficient estimates for evaluating reliability were satisfactory for each dimension of burnout and work-family conflict . For the burnout scale, ω values ranged from 0.882 to 0.945 for the overall sample, from 0.885 to 0.943 for the G 1 subsample, and from 0.880 to 0.964 for the G 2 subsample. Concerning the work-family conflict scale, ω estimates for the work interference with family and family interference with work dimensions for the overall sample were 0.861 and 0.839, respectively; 0.835 and 0.830 for G 1 ; and 0.893 and 0.859 for G 2 . Once we validated the factorial structure of burnout and work-family conflict, we estimated a measurement model to identify if the dimensions of both constructs were intercorrelated. The goodness-of-fit indices of the five-intercorrelated-factor model were adequate ; SRMR = 0.040). Convergent and discriminant validity were evaluated following the Fornell and Larcker [131] criterion. The average variance extracted values for the three dimensions of burnout and both dimensions of work-family conflict were over the suggested cutoff of 0.50, which ensured adequate convergent validity. Regarding discriminant validity, we compared the square root of the AVE of each latent variable to its correlation with the other latent variables included in the measurement model. As shown in Table 4, the square root of the AVE of each dimension was greater than its correlation with the other dimensions; hence, discriminant validity was confirmed. --- Test of Hypotheses To evaluate the proposed hypotheses about the influence of work-family conflict on burnout, we estimated a structural equation modeling specification using the overall sample as well as the G 1 and G 2 subsamples. For the overall sample, the results from these analyses revealed that the work interference with family dimension has a positive and statistically significant association with physical fatigue , cognitive weariness , and emotional exhaustion , supporting H1a, H2a, and H3a. In addition, evidence showed that the family interference with work dimension has a positive and statistically significant association with physical fatigue , cognitive weariness , and emotional exhaustion . Hence, we confirmed H1b, H2b, and H3b. The goodness-of-fit indices of this specification were satisfactory ; SRMR = 0.066). Path coefficients estimates are presented in Table 5 and Figure 2. analyses revealed that the work interference with family dimension has a positive and statistically significant association with physical fatigue , cognitive weariness , and emotional exhaustion , supporting H1a, H2a, and H3a. In addition, evidence showed that the family interference with work dimension has a positive and statistically significant association with physical fatigue , cognitive weariness , and emotional exhaustion . Hence, we confirmed H1b, H2b, and H3b. The goodness-of-fit indices of this specification were satisfactory ; SRMR = 0.066). Path coefficients estimates are presented in Table 5 and Figure 2. To further understand the effect of teleworking overload, the estimation of the structural equation modeling specification using G1 and G2 subsamples showed some notable disparities. In both subsamples, the three dimensions of work-family conflict were positive and statistically significant related to both burnout dimensions. When comparing the G1 and G2 subsamples, we found a stronger relationship in the G2 subsample than in the G1 subsample between the work interference with family dimension and physical fatigue , cognitive weariness , and emotional exhaustion . On the contrary, we found a greater association in the G1 subsample than in the G2 subsample between the family interference with work dimension physical fatigue , cognitive weariness , and emotional exhaustion . The goodness-of-fit indices were CFI = 0.946; GFI = 0.899; NFI = 0.933; TLI = 0.935; RMSEA = 0.073 ; and SRMR = 0.053 in the case of the G1 subsample; and CFI = 0.927; GFI = 0.847; NFI = 0.901; TLI = 0.912; RMSEA To further understand the effect of teleworking overload, the estimation of the structural equation modeling specification using G 1 and G 2 subsamples showed some notable disparities. In both subsamples, the three dimensions of work-family conflict were positive and statistically significant related to both burnout dimensions. When comparing the G 1 and G 2 subsamples, we found a stronger relationship in the G 2 subsample than in the G 1 subsample between the work interference with family dimension and physical fatigue , cognitive weariness , and emotional exhaustion . On the contrary, we found a greater association in the G 1 subsample than in the G 2 subsample between the family interference with work dimension physical fatigue , cognitive weariness , and emotional exhaustion . The goodness-of-fit indices were CFI = 0.946; GFI = 0.899; NFI = 0.933; TLI = 0.935; RMSEA = 0.073 ; and SRMR = 0.053 in the case of the G1 subsample; and CFI = 0.927; GFI = 0.847; NFI = 0.901; TLI = 0.912; RMSEA = 0.089 ; and SRMR = 0.092 in the G 2 subsample. Thus, H1a, H1b, H2a, H2b, H3a, and H3b were supported in both subsamples. Path coefficients estimates for the G 1 and G 2 subsamples are presented in Table 6 and Figure 3. = 0.089 ; and SRMR = 0.092 in the G2 subsample. Thus, H1a, H1b, H2a, H2b, H3a, and H3b were supported in both subsamples. Path coefficients estimates for the G1 and G2 subsamples are presented in Table 6 and Figure 3. Although some differences arose from comparing the path coefficients between the G1 and G2 subsample, the multigroup analysis for testing the effect of teleworking Although some differences arose from comparing the path coefficients between the G 1 and G 2 subsample, the multigroup analysis for testing the effect of teleworking overload did not support H4. In Table 7, we report the goodness-of-fit indices for each of the estimated models. The baseline model for testing configural invariance showed an acceptable fit to the data. In addition, these indices were adequate for M 2, and the changes in RMSEA and the CFI index were not large enough to reject the factor loadings invariance hypothesis . Concerning M 3 fit indices, RMSEA and CFI did not show variations compared to M 2 , supporting the equal direct effect hypothesis between the G 1 and G 2 subsamples. When comparing model M 4 to M 3 , M 5 to M 4 , and M 6 to M 5 , we observed a nonsignificant deterioration of fit, supporting that the teleworking overload did not affect the relationship between the work-family conflict and burnout dimensions. --- Discussion The three main findings of the study were the following: first, there were high levels of work-family conflict in the surveyed group; second, there was a positive relationship between work-family conflict and family-work conflict and all the dimensions of burnout, and the impact of the work-family conflict manifested primarily in greater exhaustion; third, there was no effect of teleworking overload in the work-family conflict and burnout relationship. In general, participants reported high scores in both work-family conflict dimensions; however, those who teleworked more than eight hours per day experimented higher levels of work-family conflict. Among other factors, this is explained by the inclusion of greater responsibilities in two vital dimensions, such as work and even school, in the family context on a global level. During the first months of the pandemic, when the data was collected, teleworking was not voluntary and implied a greater intensity of tasks and responsibilities for workers [3]. In addition, for some, teleworking meant saving time in commuting, but on its negative side, this translated into additional time to work, increasing discomfort and conflict between home and work responsibilities [119]. Another factor that should be considered is blurring the boundaries between home and office responsibilities; work emergencies can be omnipresent in the family environment. Finally, to all these concerns due to teleworking was added the anguish about one's own health, the family wellbeing, the community itself, the global environment, and the uncertainty experienced in a process of continuous change, both in behaviors and habits. The validation of hypotheses H1a, H1b, H2a, H2b, H3a, and H3b confirmed the negative consequences of teleworking during confinement. There was a positive relationship between the two dimensions of the work-family conflict and the three dimensions of burnout . Hypotheses 1a, 1b, 3a, and 3b results, which showed the impact of work-family conflict on physical fatigue and emotional exhaustion, are consistent with the existing literature [64,140] that supports that both dimensions of work-family conflict are positively related to the emotional exhaustion and cynicism dimensions. The dimensions of cognitive weariness and emotional exhaustion were the most affected as a result of several factors such as the new working conditions during the pandemic [141], the uncertainty, anguish, and anxiety experienced for months due to the fear of infection [59], the new demands of teleworking [2,142], the pressure due to the duality of responsibilities, the operational continuity of businesses, and the new modality of relationships within work teams now mediated by technology [143]. In the case of hypotheses 2a and 2b, the impact on cognitive weariness coincides with the literature on factors such as intensification [122], and it is also explained by factors such as the process of acquiring new work patterns, adaptation to digital processes, and uncertainty about the personal and work future during the pandemic. Regarding the positive relationship between the work-family conflict dimensions and burnout, some theoretical frameworks such as the job demands-resources model [33] and the role conflict model [95] explain the study results. First, there was an increase in job demands with the teleworking modality. Among those demands, the intensification of family emotional responsibilities, the responsibilities to avoid infection and stay healthy, the economic-related responsibilities, the emerging changes that businesses had to implement to maintain their operations, and the new skills that had to be acquired rapidly stand out. Second, a role conflict was generated due to the loss of the boundaries between the family and work spheres. This meddling of the work dynamics was translated into a dilemma evidenced in this study [123,124]. Concerning hypothesis 4, the non-effect of teleworking overload in the relationship between work-family conflict and burnout during the COVID-19 pandemic contrasted with previous studies [75,144]. This non-effect may be due to contextual factors since, in Ecuador, there was a contingent and regulatory framework for companies that arose during the pandemic. The government regulation that allowed the reduction of working hours and salaries due to pandemic reasons may have impacted the psychological normalization of work overload as a distinguishing factor of teleworking, together with the need for job stability and searching for continuous commitment [145]. A multiplicity of factors could explain the finding of the greatest impact of the workfamily conflict on burnout, three of which stand out specifically: role ambiguity [124], the non-willfulness of taking work home during the COVID-19 pandemic, and the loss of limits between home and work [120]. --- Conclusions The consequences on occupational health and the increase of psychosocial risks due to teleworking during the pandemic are continuously growing. On the one hand, the increase in job demands and work intensification manifests itself in a context saturated by two spheres that coexist in the same physical environment for workers working from home due to the COVID-19 pandemic. This reality translates into high levels of work-family conflict and burnout. In addition, role conflict is experienced, job demands increase, and job and personal resources to deal with those demands are put to the test. On the other hand, the continuation of the pandemic, non-voluntariness, and a context of economic crisis intensifies the decision to work longer hours, causing a panorama of contradictions in which the worker suffers the illusion of being at home but with the weight of the increase in job responsibilities. According to the study results, this scenario translates into a direct relationship between both dimensions of the work-family conflict and the three dimensions of burnout. It is necessary to deepen the advantages of teleworking, such as spending more time with the family, saving time when commuting, and autonomy. In work experience, it is essential to analyze the impact of working conditions, social climate, assessment of colleagues and supervisors, and essential aspects as the feeling of a satisfactory experience with the responses to job demands. Overwork generates experiences of dissatisfaction or discomfort that translate into the sense of lack of time, not completing everything adequately, and permanent urgency, among others [146]. Work overload is a psychosocial risk that, despite not having a significant effect on the relationship explored in this study, has an essential role in occupational health, especially in the context of the COVID-19 pandemic. --- Limitations and Strengths The study has some limitations and strengths. Regarding its limitations, the design was cross-sectional, self-reported scales were used to measure the variables of interest, and the sample was incidental. In addition, one of the most important limitations is how work overload was measured since the working hours were used as an indicator of this variable. It could cause distortions in measuring work overload, especially in a multiprofessional sample such as the one used in this study. Although the length of the working day could be considered an indicator of overload, teleworking brings the combination of family and work spheres and flexibility schemes to fulfil work activities, which would imply a challenge for measuring work overload. Further research should include other metrics to measure work overload in the context of teleworking, especially during the COVID-19 pandemic. Among its strengths, what stands out, to our best knowledge, is that this study is one of the few that addresses the psychosocial consequences of a new modality of work overload and teleworking during the COVID-19 pandemic. Second, the study highlights the importance of the economic and regulatory conditions and contingencies that have surrounded the modality of teleworking during the pandemic in Ecuador, which may have impacted consequences such as the normalization of a factor of high occupational risk, such as work overload. Third, the use of an extensive multiprofessional sample, and fourth, the psychometric validation of the scales used to collect the data. --- Implications for Theory and Practice The problems arising from the adoption of teleworking due to the COVID-19 pandemic allow discussion of the theoretical constructs that underlie this new reality of work. In addition, their adjustment to working modalities as emergency teleworking and psychosocial risks as the overload derived from the pandemic should be included in this discussion. In this study, work overload was measured through working hours, which produced limitations when showing its effect on the relationship between work-family conflict and burnout. However, we believe this is a new era for work design [121] since teleworking in confinement, teleworking itself, social distancing, and hybrid work models are part of our new reality. Much of the theoretical framework and empirical findings are pre-COVID-19, so it is necessary to generate new analyses that reflect people's and organizations' realities in contexts such as the COVID-19 pandemic. From a practical approach, the results of studies such as this are helpful as a starting point for designing policies at various levels. From an organizational perspective, our results should be considered as input for designing psychosocial risks prevention programs and diagnostics on the impact of new work modalities on workers' health. Regarding public policies, several Latin American countries have incorporated teleworking into their legislation [5,147]; however, this is not enough for its proper implementation. It must be guaranteed that all workers are informed of their health and safety rights and responsibilities, as indicated by the ILO [3]. In particular, there is a gap in public policies regarding supporting workers with minor children, single-parent families, and immigrants, who face greater limitations when entering the labor market and adopting teleworking as a primary working modality. --- Data Availability Statement: The data presented in this study are available on request to the corresponding authors. The data are not publicly available due to privacy concerns. ---

If there is any field that has experienced changes as a result of the COVID-19 pandemic, it is work, primarily due to the implementation of teleworking and the effort made by workers and families to face new responsibilities. In this context, the study aims to analyze the impact of work-family conflict on burnout, considering work overload, in teleworkers during the COVID-19 pandemic. To evaluate the hypotheses, we used data collected during the last week of July 2020 using an online survey. Work-family conflict and burnout were measured using the Gutek et al. (1991) and Shirom (1989) scales. We tested the hypotheses using a structural equation model (SEM). The results indicated, between other findings, that there was a positive relationship between work-family conflict and family-work conflict and all the dimensions of burnout. However, there was no effect of teleworking overload in the work-family conflict and burnout relationship. This article is innovative because it highlights the importance of the economic and regulatory conditions that have surrounded the modality of teleworking during the pandemic, and their influence on wellbeing and psychosocial risks in workers.

The Mediating Role of Project Citizenship Behavior in the --- Relationship between Organizational Justice Dimensions and Project Success Introduction Project success is probably the most extensively deliberated topic in project management literature. A vast amount of factors has been identified which potentially enhance or improve the performance of projectssome of them are more generally applicable such as tools, practices and support whereas others are focused on specific regions or industries such as software or public-private partnership projects . However, project performance issues are continuing, and large amounts of money are wasted on a daily basis due to poor performance and issues such as overspend, scope creep, time overrun and non-achievement of goals . PMI's recent Pulse of the Profession study found that worldwide over 11% of every Dollar spent on projects is in fact lost . Interestingly, it was also found that 65% of organizations see the development of leadership skills of their project professionals as a high priority to improve this situation and it was recognized that project managers won't get far without people skills . This indicates that people and psychosocial aspects are gaining importance in addressing the challenges of weak project performance . Nevertheless, there has been little empirical attention on the psychosocial relationships and more importantly on the effect of these relationships on project success . One approach which has shown promising results in this area is organizational justice . Organizational justice focuses on how individuals perceive fairness in the workplace and recognizes that the way employees are treated has an impact on their behavior at work. Meta-analyses of Cohen-Charash and Spector , Colquitt et al. and Viswesvaran and Ones have established that organizational justice positively influences both employees as well as organizations with the employee's organizational citizenship behavior being one of the key benefits . OCBs are defined as behaviors displayed by employees that go beyond the contractual requirements and are above and beyond what organizations can formally demand . They have been recognized as being critical to the survival of organizations due to the ever-increasing competitive business environment. Projects are also generally regarded as competitive business environments with particular pressures due to their temporary nature . Project team members are required to work under limiting budget and time constraints, which often require them to go "the extra mile" and put more personal effort into a project than they are formally required to do by contract. On the project level this phenomenon has been defined as project citizenship behavior . With our research, we propose to investigate the four-dimensional organizational justice construct and its relationship to project success including the mediating role of PCB. This is of relevance as Colquitt, J. and Jackson highlight the context sensitive nature of organizational justice and suggest that it is perceived differently in different social and organizational contexts. Currently, we do not know if the strong support for organizational justice and OCB relationship that has been found in classic organizations holds true in the significantly different context of projects. Projects are complex social constructs, which are viewed as a temporary organizational systems that are distinct from permanent organizations in four key aspects: time, which is limited in temporary organizations; task, which is the reason the project is launched; team, which focuses on the interpersonal relationships and the interplay with the permanent organization and transition, which is about the requirement to achieve transformation as a result of the temporary organization . Unterhitzenberger and Bryde utilized a simplified three-dimensional construct for organizational justice, which proposed an impact on project performance, but has limitations as it does not account for a nuanced investigation of the more detailed four dimensions of organizational justice. Furthermore, extra role behavioror PCBwas not considered as a mediator and hence, this relationship remains unknown. Hence, we aim to answer the following research questions: 1) How do the different organizational justice dimensions impact project success? 2) Is the relationship between dimensions of organizational justice and project success mediated by project citizenship behavior? We conducted a large-scale time-lagged quantitative study with 314 participants and performed the analysis via partial least square structural equation modeling . Our findings revealed that all four organizational justice dimensions positively impact project success and that this impact is mediated through PCB. We therefore contribute to project management literature in two-fold. First, we enrich the project management literature by empirically investigating the impact of organizational justice dimensions on project success directly and indirectly through the mediating role of PCB. Second, we also provide recommendations for project leaders and managers to stimulate the exhibition of citizenship behavior in project teams and thus, contribute towards project success. In the next section, we will provide the theoretical background for our hypotheses, then we will consider methodological aspects, present our findings and discuss the results. Finally, the theoretical & managerial implications and limitations of our study will be presented. --- Theory and Hypotheses --- Organizational Justice Organizational justice has traditionally been defined as the degree to which an aspect of the organizational environment is perceived as fair following certain rules or standards . The concept is known to be subjective -as being "in the eye of the beholder" and viewed as a phenomenon which is complex and multifaceted "as individuals are concerned about fairness for several reasons, judge the fairness of several aspects of decision events, and use fairness perceptions to guide a wide range of key attitudes and behaviors" . Initially, a differentiation between three different types of justice was made namely: 1) Distributive justice focuses on the fair allocation of outcomes; 2) Procedural justice focuses on the fairness of the processes used to determine outcome distributions or allocations 3) Interactional justice focuses on communicating the outcomes and processes. However, it has also been recognized that for a more differentiated understanding of interactional justice a distinction should be made between interpersonal and informational justice, whereas interpersonal justice means the quality of interaction and the treatment received and informational justice is concerned with the accuracy, truthfulness and timeliness of the information shared . For our work we will adopt this four-dimensional organizational justice construct, consisting of distributive, procedural, interpersonal and informational justice, for which no empirical investigation has been conducted in the project context as the only previous study by Unterhitzenberger and Bryde used the three-dimensional construct. For decades research on organizational justice has suggested that it contributes positively to how individuals engage at work, e.g. by predicting higher levels of job performance and OCB as well as better work attitudes and behaviors . In particular, research has proposed consistently strong support for organizational justice as a predictor of OCB . This association is often discussed using the theoretical lens of social exchange theory . Social exchange theory assumes that social lifeincluding working lifeconsists of a series of transactions between different parties . These transactions comprise of actions which are conditional on the rewarding actions of others and therefore create a process of reciprocity . Unlike economic exchanges, social exchange relationships are characterized by the exchange of less tangible, sometimes symbolic resources with the exchange being governed by certain rules such as reciprocity . This means that it is assumed that individuals respond to fair treatment from their supervisor by putting extra effort into their work and going beyond their contractual duties and hence, engage in OCB which is beneficial to their supervisor and their organization . Utilizing SET as a theoretical lens we aim to investigate the association of organizational justice dimensions with OCB in the project setting. The setting in which justice relationships are investigated is critical as Colquitt, J. and Jackson highlighted the context sensitivity of justice rules. They suggest that justice is perceived differently in different settings, as different aspects of justice are more important in certain contexts whereas others are more important in others. However, their context was limited to a comparison of individual vs. team perception and team characteristics of size and diversity. Also, Fortin considers only team environment, culture and power as context, whereas team environment does not consider the unique characteristics of projects. Research on projects as temporary organizations shows that they are distinct from permanent organizations and this distinction is based not only on the temporariness of projects but also on the other unique characteristics of team , task and transition . Hence, the project context with temporary teams working on specific tasks towards the achievement of a transition or transformation is a context which has only been scarcely addressed in organizational justice research . Our work will therefore contribute to closing this gap. --- Project Citizenship Behavior The individual's behavior at work which goes beyond contractual arrangements has gained much attention over the past decades with OCB being at the core of many investigations . Generally, OCB is referred to as the voluntary behavior by workers, which is neither expected nor formally required by the job description but has been recognized to carry immense significance for the effective functioning of firms . Examples of OCB are when individuals perform tasks efficiently to achieve the organization's objectives, proactively propose novel solutions to improve the work or assist a co-worker without expecting any favor in return. However, it has been recognized that OCB cannot simply be transferred to the project setting due to its unique characteristics of time, task, teams and transactions . According to Braun et al. , project citizenship behavior consists of four dimensions which are related to but not identical with the seven dimensions of OCB. Firstly, there is helping behavior, which relates to helping another individual or team from a different organization working on the same project. Secondly, project loyalty is introduced as a cross-organizational point of reference in addition to the employment organization. Thirdly, project compliance is concerned with the compliance to formal and informal rules and regulations established for the project and fourthly, proactive behavior relates to the individual initiatives project team members from different organizations demonstrate and their civic virtue towards the project. These findings highlight the importance of a project context investigation of citizenship behavior and we will adopt Braun et al. concept of PCB to examine its association with organizational justice and project success. --- Project Success As stated earlier, project success has been addressed widely in the academic literature and consequently, there is a broad diversity of views on what constitutes project success. The only overarching agreement is that project success has moved on from simply considering the iron triangle of cost, time and quality to a more holistic view of success which incorporates different perspectives . However, this has led to a situation where there is the danger of "comparing apples and oranges discussing project success" due to a lack of commonly agreed success criteria. It has been recognized that project success or failure might depend on the individual stakeholders' interpretation of the success criteria which indicates that a more nuanced view is required. Albert et al. concluded from a comprehensive literature review that a differentiation between hard and soft criteria is necessary with hard criteria being aspects such as cost, time, performance, quality and economic success and soft criteria representing different stakeholder perspectives. For this study we determined that the aspects of time, cost, performance, client use, satisfaction and effectiveness are suitable criteria to define project success following Aga et al. . Effectiveness in this context is defined as the extent to which a project meets its objectives. These criteria represent a mix of hard and soft aspects , which are captured according to the stakeholders' perception, and therefore allow for the integration of different stakeholder perspectives . This follows the recommendations by Albert et al. and Davis and will allow us a nuanced assessment of project success. --- Hypotheses Findings from previous studies suggest that organizational justice positively impacts various facets of performance and success: Mahajan and Benson found that organizational justice positively impacts on firm success, Swalhi et al. demonstrate an association of organizational justice and job performance and Unterhitzenberger and Bryde showed some relationship with project performance. Hence, a general positive association between the overall concept of organizational justice and project success can be assumed. However, the more nuanced relationships with different organizational justice dimensions remain to be better understood. A number of studies have established that procedural justice impacts task performance of individuals and the importance of procedural justice in the context of performance has been widely accepted . On the other hand, the association between distributive justice and job performance is less clear as some studies have found support for it whereas others failed to do so . The picture is similarly contradicting for the association between interpersonal justice and task performance as some studies found significant support for the relationship whereas others didn't . Informational justice has only rarely been investigated in relation to performance , however the combined dimension of interactional justice has shown promising support for a positive relationship with task performance . This shows that whilst various studies have consistently found support for the overall relationship between organizational justice and performance , the impact of the individual dimensions is less clear. Therefore, we argue that the relationships between the individual dimensions and project success need to be investigated and clarified. Based on the overall positive impact of organizational justice on performance, we assume that this support is also present through the individual dimensions. This assumption is grounded in the supportive findings outlined above which provide us with sufficient theoretical underpinning to investigate these relationships in more detail. We therefore hypothesize that the individual dimensions of organizational justice significantly and positively affect project success: H1a: Distributive justice positively impacts project success. H1b: Procedural justice positively impacts project success. H1c: Interpersonal justice positively impacts project success. H1d: Informational justice positively impacts project success. We have outlined above that organizational justice is one of OCB's strong predictors . The meta-analysis by Colquitt et al. examined 493 independent samples and identified a positive association between each dimension of organizational justice and OCB : interpersonal justice , informational justice , procedural justice , and distributive justice . This provides strong support to hypothesize a positive association between the different organizational justice dimensions and OCB, however we do not know if this relationship holds true in the project context. This is especially the case, as OCB cannot simply be transferred to the project context, but needs to be adapted and is characterized by four unique dimensions . Whilst Lim and Loosemore attempt to investigate this relationship, they do not consider the project context sufficiently and simply use traditional OCB definitions, which is inappropriate according to Braun et al. . Therefore, we see the need to investigate this relationship in the project context. Utilizing the rationale of SET we assume that individuals who are treated fairly in projects will engage in reciprocal transactions by putting extra effort into their work and going beyond contractual duties . Based on this evidence, we propose that the organizational justice dimensions are positively linked with PCB: OCB has been recognized as being critical to the survival of organizations and leading to sustainable organizational effectiveness, for instance high productivity, improved coordination, high performance, enhanced capability to respond to the changes in environment and so on . Additionally, it has been found that it increases an individual's task performance as well as the performance of work groups . This linkage has also been examined in the project setting and a recent research carried out by Wang et al. established the positive effect of OCB on the performance of megaprojects. This suggests that there is evidence for a link between OCB and different aspects of performance. In line with this, PCB has demonstrated its impact on the effectiveness of projects by predicting success criteria such as the iron triangle or the achievement of project objectives . Hence, we have established that the different organizational justice dimensions are some of the most robust predictors of OCB and that OCB impacts on different aspects of performance . Following this, one may expect that PCB can help to clarify the nature of the linkage between the different organizational justice dimensions and success in the project context. Thus, we hypothesize that the demonstration of citizenship behavior by project team members due to perceived organizational justice supports the achievement of project success: H3a: The relationship between distributive justice and project success is mediated by PCB. --- H3b: The relationship between procedural justice and project success is mediated by PCB. --- H3c: The relationship between interpersonal justice and project success is mediated by PCB. --- H3d: The relationship between informational justice and project success is mediated by PCB. We have illustrated the hypothesized relationships in Figure 1. In addition to the hypotheses, we control for potentially confounding variables that we need to account for, but which do not drive our theory . Our control variables are focused on demographic characteristics of the participants and include gender, marital status, age, position and experience. These are variables which could potentially have an influence on the relationship between the dependent and independent variables, but which are not the focus of our study. --- Methodology --- Population, Sampling and Data Collection The research design of our present study was quantitative in nature adopting a positivist research philosophy with a deductive approach. This allowed us to remain neutral and independent during the investigation whilst using a large sample to test hypotheses developed from existing theories . The participants in our study had to fulfill the following criteria: 1) experience of at least one year of working in or leading projects and 2) worked in or led at least one completed project with knowledge about the results of that project. A convenient sampling technique was used. They belong to various sectors such as engineering and construction, healthcare, education and I.T. Access to the participants was gained through professional contacts of the study authors. Respondents participated voluntarily in the survey and their informed consent was obtained. All respondents were assured of the data confidentiality and anonymity. A time-lagged self-reported questionnaire was used to collect data which was administered in three waves. The independent variables i.e. all dimensions of organizational justice were collected in Time 1, mediating variable i.e. project citizenship behavior was collected in Time 2 and dependent variable i.e. project success was collected at Time 3. Each of the time intervals was three weeks apart. The purpose of time lags was to overcome common method bias and selfserving bias issues . Codes were assigned to respondents in order to maintain their privacy and for the purpose of matching the responses of same respondents from T1, T2 and T3. This helped to contact the same respondents with their consent in T2 & T3 accordingly. At T1, we received 363 usable responses out of the 400 questionnaires we distributed . At T2, questionnaires were sent to those respondents only, who responded in T1, and 314 usable questionnaires were returned . At T3, the same process was followed with a total of 233 usable questionnaires returned, which were then considered for statistical analysis . There were 82.4% male respondents and 17.6% females. Most of the respondents were aged between 18-40. 43.8% of our respondents were single and 56.2% were married. Nearly half the participants worked in a managerial position . 54.5% of the respondents had 1-5 years of experience, 27.5% ranging between 6-10, 16.7% between 11-20 years and only 1.3% between 21-30 years. None of the respondents had +30 years' experience. --- Measures A 5-point Likert scale was used to assess responses for all variables, where 1 refers to strongly disagree and 5 refers to strongly agree. The detailed items with identifiers are presented in Appendix 1, whereas an overview of the measures and sample items are provided below: --- Organizational Justice To measure Organizational Justice the 20-item scale developed by Colquitt was used. It utilizes the four-dimensional construct measuring distributive, procedural, interpersonal and informational justice: Procedural Justice Procedural justice was measured using a seven-item scale. One sample item was "Have you been able to express your views and feelings during those procedures?" The Cronbach's alpha of the instrument was .713. --- Distributive Justice A four-item scale was adopted to measure distributive justice. One item of this scale was "Does your reflect the effort you have put into your work?" The Cronbach's alpha of distributive justice was .643. --- Interpersonal Justice Interpersonal justice was measured using a four-item scale. One item of this scale was "Has treated you in a polite manner?". The Cronbach's alpha of the instrument was .578. --- Informational Justice Informational justice was measured using a five-item scale. One sample item was "Has been candid in communications with you?" The Cronbach's alpha of the scale was .805. --- Project Citizenship Behavior To measure project citizenship behavior, the 16-item scale developed by Braun et al. was used. One sample item was "I have made innovative suggestions to improve the project work". The alpha reliability of the scale was .790. --- Project Success For measuring project success, the 12-item scale developed by Aga et al. was used. One sample item was "The project was completed on time". The Cronbach's alpha of the instrument was .898. --- Data Analysis Structural equation modelling is a statistical analysis method which is commonly used to test structural relationships by combining factor analysis and multiple regression analysis. According to Kline , SEM is used to specify, identify, estimate, test and modify a measurement and structural model. Thus, in the present study we used the partial least squares method to perform confirmatory factor analysis through SmartPLS 3.0 to verify the fitness of our model with the data. For the structural model the direct and indirect effect was determined through Process Macro presented by Hayes . The analysis was done by using the model 4 from the manual provided by Hayes as it is the classical model of mediation. --- Results --- Control Variables One Way ANOVA was performed to explore the impact of the control variables. Table 1 depicts that there is a significant difference caused in project success across marital status of respondents therefore, marital status was controlled for in the regression analysis. We currently do not know for certain, why marital status caused this significant difference. One reason might be that priorities and commitment to the job change after marriage, but this needs to be explored in more depth in a separate study. It was also found that there was no significant difference in project success across other demographics of respondents i.e. gender, age, position and experience. --- Descriptive Statistics and Correlation The mean values, standard deviations and correlation analysis are presented in Table 2. It indicates that distributive justice , procedural justice , interpersonal justice and informational justice are positively associated with project success thus, giving preliminary support to our hypotheses. It furthermore shows that project citizenship behavior is positively associated with project success . Since all the correlation coefficient values lie within the range of .3 to .7 there is no problem of multicollinearity in our data. --- Tests of the Measurement Model To justify the measurement model, confirmatory factor analysis was performed which consisted of six latent variables: distributive justice , procedural justice , interpersonal justice , informational justice , project citizenship behavior and project success . As per the results of the measurement model all the indicators with factor loadings < .5 were dropped including one item of interpersonal justice , seven items of project citizenship behavior and one item of project success because the elimination of these items improved the validity of our measurement model . Figure 2 shows the measurement model after removal of the items. We would like to note that PCB14, for which the outer loading was slightly lower than .5, was included because that the validity of the measurement model was not compromised and the item loading was very close to .5. The convergent validity was assessed through internal consistency, CR and AVE. For an adequate convergent validity of the scale, a minimum threshold of AVE is .50. However, convergent validity will be sufficient to measure any concept with an AVE < .50 if the composite reliability is > .60 . Thus, convergent validity is established according to the results reported in Table 3. After verification of the convergent validity, the discriminant validity was evaluated. Discriminant validity determines whether a construct is distinct from other constructs by empirical standards, hence if it is not highly correlated with other constructs. Table 4 indicates that the values on the diagonal exceed all the preceding values in rows and columns of the matrix. That means that the square root of each construct's AVE is greater than its correlation with other constructs thus, it suggests that discriminant validity is established . --- Hypothesis Testing We used the process macro by Hayes to determine the direct and indirect effects. Table 5 shows that distributive justice positively impacts project success and project citizenship behavior thus, H1a and H2a are supported. Moreover, the indirect effect of project citizenship behavior between distributive justice and project success is significant with 95% confidence interval. Project citizenship behavior partially mediates the relationship between distributive justice and project success, thus, H3a is supported. Table 6 depicts that procedural justice positively impacts project success (β = .561, p< .001) and project citizenship behavior thus, H1b and H2b are supported. Moreover, Table 6 indicates the significant indirect effect of project citizenship behavior between procedural justice and project success with a 95% confidence interval. Project citizenship behavior partially mediates the relationship between procedural justice and project success, therefore, H3b is supported. Table 7 indicates that interpersonal justice positively impacts project success (β = .519, p< .001) and project citizenship behavior thus, H1c and H2c are supported. In addition, Table 7 shows that the indirect effect of project citizenship behavior between interpersonal justice and project success is significant with a 95% confidence interval. Project citizenship behavior partially mediates the relationship between interpersonal justice and project success, hence, H3c is supported. Table 8 depicts that informational justice positively impacts project success (β = .685, p< .001) and project citizenship behavior , thus, H1d and H2d are supported. Moreover, Table 8 demonstrates the significant indirect effect of project citizenship behavior between informational justice and project success with a 95% confidence interval. Project citizenship behavior partially mediates the relationship between informational justice and project success, thus, H3d is supported. --- Discussion The present study provides new insights into how the four organizational justice dimensions impact project success through mediation of project citizenship behavior . The results of our research supported all the hypothesized relationships, and we will discuss them in more detail below to develop an enhanced understanding of the underlying mechanisms. Altogether, these findings improve our understanding of the importance of organizational justice and PCB and their contribution to project success. Firstly, we found evidence that all four organizational justice dimensions i.e. distributive, procedural, interpersonal and informational justice are positively associated with project success . Interestingly, all four dimensions have about the same impact with informational justice showing a slightly stronger relationship than the other dimensions. Unterhitzenberger and Bryde found that procedural justice was the most influential factor, with distributive and interactional justice having a significantly weaker impact. Despite the differences in the strength of relationships the findings of our study confirm Unterhitzenberger and Bryde findings that all organizational justice dimensions demonstrate a positive association with project success. This suggests that the implementation of fair principles and processes throughout the project and across different aspects is critical. Making decisions about the distribution of resources should be guided by the principles of need, equity and equality to align with justice rules in order to encourage project team members to reciprocate the behavior and engage in the social exchange of beneficial actions . The implementation of fair procedures and principles by the project manager strongly influence the project success because the project team members then use fairness perceptions as heuristic to evaluate if they can swiftly trust the management and the quality of their relationship with the project manager is strengthened when they perceive that the project related decisions are taken in a reliable and transparent manner . Our study also reveals that the treatment of and communication with the project team members is significant in regard to its impact on project success. When project team members are treated with politeness, dignity and respect following interpersonal justice rules they reciprocate to uphold their ethical beliefs by delivering project tasks effectively . Similarly, when the project team members are provided with reasonable justifications for decisions and when the communication of these decisions happens in a truthful way, they develop a strong identity with the project. Thus, they respond by performing high and contributing to project success due to perceived informational justice. This is also the dimension we have found to be most influential which suggests that a truthful and justified sharing of information is very important for project team members. This is unique to the project context and might be grounded in the fact that projects are often characterized by a high degree of uncertainty and that truthful and justified communication reduces this uncertainty for project team members who subsequently use this information to make more informed decisions to the benefit of the project. Overall, this suggests that the basic principles of organizational justice are applicable in the project context and that despite the context sensitivity of the concept significant benefits can be realized in the projects . It also highlights the relevance of social exchange theory as a theoretical lens as it demonstrates that actions by the project manager in terms of fair treatment create reciprocal actions by the project team members which subsequently contribute to enhance project success. We therefore advocate that all four dimensions of organizational justice are crucial and should be present to facilitate project success. Thus, it is the responsibility of project managers and/or sponsors to make sure that all aspects of organizational justice are addressed throughout the life cycle of a project. This ranges from appropriate governance arrangements to realistic planning assumptions to day-to-day communications. At this stage it is not about defining specific tasks for the sponsor and the project manager, it is rather about raising awareness of justice rules and adopting these rules as underlying principles of all action throughout the project Secondly, and perhaps most importantly we demonstrated that all four organizational justice dimensions i.e. distributive, procedural, interpersonal and informational justice are positively associated with project citizenship behavior . This illustrates that the association between organizational justice and OCB is not only significant in permanent organizations , but that organizational justice is also a predictor of PCB in the context of temporary organizations. This is an important new finding as PCB is related to, but not identical with OCB . Furthermore, unlike Lim and Loosemore , who utilized traditional OCB measures in the project context, our study made use of the adapted and context adjusted PCB measures. Through this we are able to establish that the use of context-specific measures matter as Lim and Loosemore only found a significant association between interpersonal justice and OCB, but not with any of the other dimensions which contradicts broadly accepted knowledge . Our study however was able to demonstrate that organizational justice is indeed a predictor of OCB in the project context, i.e. PCB, if the appropriate measures are utilized. This is due to the fact that OCB measures do not actually account for the context specific characteristics of projects and hence, consider aspects such as general helping behavior, organizational loyalty or organizational compliance, which do not appear to be impacted by justice perceptions in the project as they are related to the permanent organization the project team member is working for. In contrast to this, PCB measures such as project-specific helping behavior, project loyalty and project compliance directly relate to the temporary organization and hence, are impacted by justice perceptions in the project. We also found that PCB mediates the relationship of all four organizational justice dimensions with project success . Despite the fact that there is strong theoretical underpinning for these hypothesized relationships, this is the first study that explicitly examined how PCB mediates the relationship between organizational justice dimensions and project success. Previous studies have proven that organizational justice is a robust predictor of OCB and OCB has also been recognized as a survival factor for organizations , but we are the first to establish this relationship in the project context. Having established that all four organizational justice dimensions have a positive impact on project success, we are able to explain this relationship through the mediation of PCB. PCB is the extra-role behavior that project team members demonstrate voluntarily in an inter-organizational project environment, i.e. across the boundaries of permanent organizations . Our findings determine that PCB is encouraged by the implementation of fair processes and principles in projects as is OCB in permanent organizations. Through its adapted dimensions of project-specific helping behavior, project loyalty, project compliance and project-specific proactive behavior it encourages individuals to go their contractual duties. And again, we contribute to the literature on project behavior by further establishing the need for dedicated concepts such as PCB to be explored and utilized. --- Practical Implications Findings of this study also provide some valuable managerial implications that can potentially alter the ways in which projects are being managed currently. In order to enhance project success, this study gives a different perspective to the present approaches of project management. The present study highlights new areas of responsibility for project sponsors and/or project managers as they should be familiar with the significance of justice rules, processes and decisions in projects due to their significant impact on success of project. The project managers need to take fairness into account throughout the project life cycle. Some practical actions can be taken in initial phases of the project for instance the design of fair procedures and principles for decision making, the fair distribution of resources among participants based on need, equity and equality, the truthful and justified sharing of sufficient information with project participants and the communication of these procedures to participants with respect and dignity. Our findings suggest that along with the implementation of organizational justice the project managers should also encourage project team members to exhibit project citizenship behavior for effective execution of project tasks. Rewards either intrinsic i.e. job autonomy, growth or extrinsic such as salary raise, bonus, allowances etc. should be given to those project team members who show extra role behavior during the course of project delivery. In particular, the findings of our study can be used to highlight the importance of establishing and practicing fair and impartial practices during the execution of any project. --- Limitations and Future Directions Along with the fruitful insights, the study has a few limitations that should be addressed in future research. First, self-reported measures were used for data collection and therefore, common method bias cannot be ruled out. Future researchers should move toward the use of multisource data collection through dyadic relationships in projects between project team members and project managers. Second, we collected data from employees working on projects situated in Islamabad, Pakistan. So, there are limitations to the generalizability beyond the specific cultural context. Various cultures have different interpretations and perceptions about organizational justice, consequently, the findings may only be applicable in the Pakistani context. Future studies must be carried out in other cultures, for instance Middle East, Asia or Europe to further look at the impact of cultural variations on the linkage between organizational justice, project citizenship behavior and project success. --- Conclusion Despite the extensive deliberations in project management literature, there is a lack of scientific research focusing on psychosocial factors in project-based organizations and their impact on project success except few promising attempts. Thus, our study contributes to body of knowledge by providing evidence that all four dimensions of organizational justice have a significant impact on project success both directly and through mediation of project citizenship behavior . Altogether, these findings enhance our understanding of the importance of organizational justice and PCB and their contribution to project success. Findings of our study provide valuable managerial implications for project leaders and project managers by advocating that project team member's perceptions about all four dimensions of organizational justice are crucial and should not be ignored throughout the life cycle of a project to facilitate project success. Findings also suggest that project leaders and project managers should provide an environment that encourages project team members to go the extra mile or beyond the formal obligations through fair treatment in order to enhance the likelihood of effective project delivery. --- Project Citizenship Behavior ) PCB1 I have made innovative suggestions to improve the project work. --- PCB2 I have outlined chances and potentials that could arise in the course of the project. --- PCB3 I have proposed my own ideas and suggestions in the operative project work, even when it was not explicitly requested. --- PCB4 I have kept informed about developments within the project, also outside my field of duty. --- PCB5 I have followed strictly the rules and instructions that applied to the project PCB6 I have strictly complied with the rules which that were set during the kick off meeting PCB7 I have conformed to all contractual obligations I had in the project with great care PCB8 I have immediately informed the respective supervisor, if I could not meet deadlines PCB9 I have made the necessary improvements, if the critique of my performance was justified PCB10 I have defended the project when it was criticized from the outside PCB11 I have been strongly committed to the project PCB12 I have described the project positively, if someone outside asked me PCB13 I have done everything necessary so that the project objectives were achieved. --- PS1 This project has come in on schedule --- PS2 This project has come in on budget PS3 The project that has been developed worked --- PS4 The project has been used by its intended clients PS5 This project has directly benefited the intended users through either increasing efficiency or employee effectiveness PS6 Given the problem for which it was developed, it was the best choice among the set of alternatives PS7 Important clients, directly affected by this project, had made use of it PS8 I was satisfied with the process by which this project was completed PS9 Non-technical startup problems were minimal, because the project was readily accepted by its intended users PS10 Use of this project has lead directly to improved or more effective decision making or performance for the clients PS11 This project had a positive impact on those who made use of it PS12 The results of this project represented a definite improvement in performance over the way clients used to perform these activities --- the extra mile, be more effective and productive and subsequently facilitates project success. Thus, we have contributed to existing literature by providing insights on how project citizenship behavior influences project success along with implications for project leaders and project managers to encourage project team members to go the extra mile or beyond the formal obligations for effective project delivery. --- Implications --- Theoretical Implications From a theoretical perspective our study makes three contributions to the literature: Firstly, we establish that the four-dimensional organizational justice construct significantly impacts project success and that the implementation of fair processes and principles in the project context facilitates project success. By doing so we contribute to the literature on project success through strengthening the support for psychosocial relationships as success factors. Secondly, we demonstrate that organizational justice is a reliable predictor of extra-role behavior in the project context if the appropriate project-related measures are used. This is an important finding as it aligns the findings in regard to the linkage of organizational justice and OCB from the project literature with the literature on permanent organizations. Through this we contribute to the literature on project behavior and respond to the call for more integration of organizational behavior aspects into project studies . And thirdly, we are able to partly explain the impact of organizational justice on project success through PCB. This is relevant as it highlights the significance of the voluntary behavior of project team members that goes beyond --- Appendix 1 -List of Items Used For Each Construct --- Construct Items Organizational Justice ) --- PJ1 Have you been able to express your views and feelings during those procedures? --- PJ2 Have you had influence over the arrived at by those procedures? --- PJ3 Have those procedures been applied consistently? --- PJ4 Have those procedures been free of bias? --- PJ5 Have those procedures been based on accurate information? --- PJ6 Have you been able to appeal the arrived at by those procedures? PJ7 Have those procedures upheld ethical and moral standards?

The impact of behavioral aspects on project success remains an area which requires more attention. Drawing on the social exchange theory (SET), our study tested the mediating role of project citizenship behavior (PCB) in the relationship of all four organizational justice dimensions (i.e. procedural, distributive, informational and interpersonal justice) with project success. A time lagged survey of project team members (n = 233) was conducted and analyzed through SEM. The results indicate that all four organizational justice dimensions are positively associated with project success, whereas informational justice appears to be the most influential dimension, and that PCB mediates all of these relationships. Project managers/sponsors should enact organizational justice and enhance project citizenship to achieve project success.

Background Antibiotics are used to treat many community-and hospital-acquired bacterial infections. They are considered cornerstones of modern medicine in that they are needed to prevent and treat infections associated with, inter alia, cancer and burn treatment, chronic diseases, device surgery, transplantations and neonatal care [1]. Antibiotic resistance is a form of drug resistance where bacteria can survive exposure to antibiotics. It is an inevitable process, which is speeded up due to human behavior, as the mere usage of antibiotics enriches and selects for resistance in humans, animals, and the environment. The World Health Organization regards the rapid development of multidrug resistant bacteria as one of the most significant threats to public health globally, as it severely restricts the possibility of treating infectious diseases [2]. To curb AR, a strategic objective is to improve public awareness and understanding, WHO says. Other strategic objectives are to strengthen the knowledge and evidence base, to reduce the incidence of infection, to optimize the use of antimicrobial medicines in human and animal health, and to develop the economic case for sustainable investment [2]. Improving public awareness and understanding depends on effective communication, education and training. Studies suggest that improved understanding of antibiotics may make people feel and act more responsibly [3], but, although being a prerequisite for judicious behavior, information-giving in itself might be insufficient to change behavior [4]. Investigating the perceptions, beliefs and, ultimately, the public health behavior influencing AR is crucial to identify where and how to intervene in health education and health promotion [5]. Containment of AR requires both local and global strategies to improve public awareness and understanding. We work from the premises that local strategies can benefit from the investigation of the beliefs and perceptions that influence AR and that such investigations should be sensitive to context and culture. Possible solutions which may help reducing AR in a country or population may have limited effects in others. Nonetheless, the knowledge generated can of course still be of use in other contexts. To explore antibiotics-related beliefs and perceptions in a country , where the public have some knowledge of AR and comparatively use antibiotics more responsibly, might increase the understanding of factors behind judicious and non-judicious approaches to antibiotics. In Europe, AR varies widely and is generally higher in southern and south-eastern Europe than in the north. In Sweden, consumption of oral antibiotics is lower than in other European states and the population knows comparatively more about AR and use antibiotics more judiciously [6]. Local and national cooperation characterizes Swedish work on containment of AR and since 1989 there are County Medical Officers for communicable disease control. The Swedish Strategic Program against Antibiotic Resistance , whose overall aim is to preserve antibiotics effectiveness, has worked at regional and national levels since 1994. Starting in 2000 , a plan for coordinated work towards the containment of antibiotic resistance and healthcare-associated diseases is jointly run by the National Board of Health and Welfare and the Swedish Board of Agriculture. As a result of such early commitments to curb AR, antibiotic consumption started to decrease already in the 90s [7]. The present study aimed to explore Swedes' beliefs about and perceptions of antibiotics, in order to find which factors promote or hinder a judicious approach to antibiotics. To our knowledge, while a few studies have quantitatively investigated the Swedish population [8,9], and Swedish travelers qualitatively [10,11], no previous qualitative research has been done on public perception and belief affecting antibiotics-related health behavior. --- Methods --- Design A qualitative and explorative design was used to collect data through focus group discussions . FGDs provide insight into behavior by generating a process that helps participants to self-disclose [12,13]. The Health Belief Model was used for developing the interview guide, in the data analysis and the discussion of the results. HBM is a psychological, theoretical model extensively used to explain changes in and maintenance of health-related behavior, not least for infectious disease studies [14,15]. According to the HBM, personal demographic and psychological characteristics influence how people perceive the seriousness of and susceptibility to a disease, as well as barriers to and benefits of treatment. Each of these tenets can contribute to an explanation of health behavior. By weighing these health beliefs against possible cues for action and the individual's perceived self-efficacy, an understanding of health behavior can be achieved [16,17]. Table 1 describes how HBM constructs were applied to this study. The interview guide was structured according to state of the art guidelines for focus groups [12]. The guide was developed by the authors for this study and it was based on a review of the existing literature investigating antimicrobial-related awareness, knowledge, attitudes, beliefs, and behavior. The structure and themes of the interview were the following: A) Opening question ; B) Introductory question ; C) Transition question ; D) Key questions ; E) Ending question . Follow-up and probing questions were used for clarification and elaboration. The research team thoroughly discussed the interview guide, and after a pilot study, a few questions were eliminated to reduce participants' fatigue while key questions were arranged in a more consequent order. --- Sampling, recruitment & data collection Participants were recruited from the general population. Inclusion criteria: aged over 18 years and proficient in Swedish. Exclusion criteria: individuals with relevant healthcare education or professional status. The decision to exclude these individuals was taken in order to minimize any individual's authority affecting the group dynamics. Participants were recruited by MA in August-September 2016 through an area-based approach and purposive sampling, aiming for as heterogeneous groups as possible regarding gender, age, and education level [18]. Participants received a gift card of approximately EUR 25 after participating. The FGDs were held in a meeting room at Uppsala University during October-November 2016. A female and a male senior lecturer, TG and SE, conducted the FGDs in Swedish and SE took notes. Participants were informed about the topic of the discussion. They had no prior relationship with the interviewers. The FGDs lasted between 90 and 120 min, including a break. After 30-40 min, participants watched a short video presenting basic facts on AR [19]. Data saturation was reached after three FGDs. The interviews were audio recorded and transcribed verbatim. No dropouts occurred. --- Data analysis Data were analyzed using a directed approach to qualitative content analysis [20], in QSR International's NVivo 11 Software. The HBM key constructs were used for the analysis . MA and TG analyzed the transcripts independently, compared outcomes and discussed inconsistencies. All authors discussed the results critically in frequent debriefing sessions and the study was also subjected to peer scrutiny and an audit trail. The Consolidated criteria for reporting qualitative studies was adhered to [21]. --- Results Twenty-three members of the general public participated in four FGDs . All participants were recruited from Uppsala city and areas nearby. The results are presented according to the HBM. Quotes in Table 3 are used to provide evidence of authors' interpretations, to offer readers greater depth of understanding, and to give research participants a voice. They are abbreviated as Q1, Q2 etc. in the text below. --- Perceived seriousness of and susceptibility to AR-related health issues All particpants identified AR as a far-reaching health problem which could have terrible future consequences. Participants abundantly resorted to metaphors and analogies to describe the AR problem. An often recurring simile was climate change, compared with regard to the likelihood of being affected and its seriousness . Although all participants acknowledged the threat, a kind of individual detachment was sometimes detected, as if only other people could be affected. Moreover, the doubt was sometimes voiced that individual judicious behavior might be futile. Participants harbored the idea that living in Sweden made it less likely that they would be affected by MDR bacteria . Accordingly, the perceived susceptibility was greater in relation to visiting countries with severe antibiotic resistance records; most mentioned was Thailand, which is a Swedish favorite holiday destination. Food, typically meat, was probably the most feared source of MDR bacteria, and often the dichotomy between Swedish and imported food was brought up . Respondents frequently framed their fears in terms of possible suffering because of AR and that they may go untreated in the future because of extreme measures that could be taken to preserve antibiotic efficacy . --- Perceived benefits and barriers The most important benefit of engaging in judicious use of antibiotics was the preservation of antibiotic effectiveness, both for the individual and the public. This concern also extended to future generations. This positive view of antibiotics comes with a risk that people get "spoiled" and demand antibiotics to great quantities or when it is not really necessary, the respondents pointed out . Many participants identified compliance with prescriptions and restricting personal use of antibiotics as important measures that would benefit individuals. This would lower the risk of there being no available treatment in the future and prompt the body's immune system to respond, thus helping to withstand infections. Using fewer antibiotics, refraining from asking for antibiotics, and compliance with prescriptions, would also place "society first". If one engages in judicious behavior, one can still use antibiotics when it is necessary, without feeling guilty about it . In the same way, one should take care to get vaccinated when traveling to countries with high AR records . Considering the barriers, judicious behavior when e.g. consuming or travelling can conflict with individual interests as it can involve both individual efforts and costs . Other barriers were a perceived lack of international commitment to the fight against AR and overgenerous prescribing . Participants reported they had been able to easily obtain antibiotics while abroad and many viewed Sweden as being isolated in trying to act more judiciously . --- Self-efficacy in engaging in judicious behavior and potential cues to engagement Participants expressed their willingness to engage in judicious behavior. They often gave altruistic reasons and believed that they had duties as individuals to so act . They reported good levels of perceived self-efficacy to engage in judicious behavior but still thought that it might become difficult . Such engagement was deemed appropriate only up to the point where life was threatened. As to cues to action, participants stated that they would be more encouraged if their efforts would be part of a broader, international plan . It was also a general opinion that it would be beneficial to involve the public and that public awareness could be improved. Participants were quite aware of AR and of the fact that one should not misuse antibiotics, but were also markedly insecure about AR mechanisms, potential sources of MDR bacteria, and had many questions concerning antibiotics use. It was agreed that more communication from health authorities is needed, but there were contrasting opinions on the form it should take. A few participants stated that information about AR should be frightening , but the majority felt that a more neutral form of communication would be more productive. Respondents trusted their physicians but had misgivings about communicating with healthcare personnel. They valued being informed as it is empowering; one can more easily make informed choices and also be more accepting when physicians do not prescribe antibiotics . --- Discussion The most striking results were the prevalent description of AR as a slowly emerging problem that is somehow creeping up on us; the presence of a distinct tension between individual and collective interests; and the perceived need for empowerment through good health communication. --- A global problem sneaking up on us The likelihood of being personally affected by AR was not perceived as high, yet participants were scared by the prospect of a future without effective antibiotics. This discrepancy between perceived seriousness of and perceived susceptibility to AR has previously been reported [11,22]. Research in risk perception indicates that lay people consider the severity of materialized risks as more important than the likelihood of being affected because they perceive risks differently from experts: They have a broader notion of risk, incorporating considerations such as uncertainty, dread, and future generations [23]. Such regards might possibly be affected by the manner in which the situation is framed, as that influences how people understand risk [24]. The particular framing favored by the participants was climate change: a serious threat whose presence is not widely noticed but which is nonetheless progressing until it may be too late to remedy, a 'slowly emerging disaster'. It has been observed that apocalyptic narratives to describe the AR problem would be unsuitable for giving information about AR to the general public [25,26]. Viens and Littmann [26] list some problematic issues and we found, in effect, support for these in the FGDs. Firstly, because of the proliferation of disaster language, its use could induce 'disaster fatigue' in the public, rendering the communication less effective. Secondly, talk of disasters can evoke ideas of the extraordinary use of severe restrictive measures on antibiotics. Thirdly, there is a risk that discursive overbidding about AR might induce fatalism or fears, which could stifle behavioral change. Moreover, when the public needs to consider uncertain, future situations, disaster framing can induce responses such as a refusal to believe and misbehavior Q3: "I've thought of this as a reason to just buy Swedish meat because it feels like it's more controlled and it's more certain that there are no drugs left." --- G1, M1 Perceived benefits Q6: "To use them right when they really need to use them, that they don't do it unnecessarily so they don't get any type of anxiety or kind of negative feelings when it's right to do it." --- G2, M1 Q7: "Yes, it feels like a good compromise. I go abroad but I vaccinate first. Everyone is happy." G2, W3 Perceived barriers Q5: "... then one pumps up antibiotics more and more when it may be possible to cure in another way, but because it works so well, one takes antibiotics and it has become natural to take them on many occasions ... and therefore it has become overused, actually. It has become something negative for something that has been very good." --- G1, W1 Q8: "To put society's best before oneself becomes harder and harder." G1, M3 Q9: "…too easy to take, from the perspective of being too easy for both a doctor who is a bit fed up with his job and the patient who wants to recover quickly." G1, W2 Q10: "[M]y basic problem with antibiotics, it's still that no one in the world takes responsibility right now, it seems, and then it doesn't matter how much we do in Sweden ... well, a little bit but it's kind of minimal." --- G3, W3 Perceived self-efficacy Q11: "But if you have such responsibility, it kind of includes some kind of sacrifice… For example, Thailand is a very popular destination now at Christmas. But Thailand is one of the premier sources of antibiotic resistance in the world; you should not really go there if one takes this somewhat seriously." --- G4, M1 Q12: "It is difficult to be the one who refrains or stands by the one who refrains, but that ... yes, it is absolutely necessary." --- G1, M3 Cues to action Q13: "...some global agreement, because then you get more encouraged. […] Feeling that it does matter the little I do…" G1, W2 Q14: "Then we of course should… like you state, discipline ourselves in society not to demand… to the same extent ask for antibiotics as soon we get nauseous or get a cold and so on. So I believe we are obliged to, as you say, enlightment, to inform, influence people. You can influence in many ways, not just through repetitive TV commercials, but maybe in many other informative ways." --- G3, M2 Quotes are labelled with G and 1-4 for the group number, W or M for the gender and 1-4 for the participant's numerical code perpetuation [27]. Indeed, the participants expressed uneasiness about the vagueness of the threat and the uncertainty of when the disaster would become concrete. In contrast, the perception of the likelihood of being affected by AR increased when they discussed traveling and food, as the link between actions and potentially harmful consequences was easier to detect and more tangible. Also from this perspective, then, giving suitable information proves important. --- Individual and collective interests at odds The participants were not purely self-interested. However, tension between expected individual gains and society's needs emerged from the analysis of the benefits of and barriers to engaging in judicious behavior. It is known that antibiotics are thought of in extremely positive terms [28], so it is not surprising that the main drivers of participants' overuse and misuse of antibiotics were the positive aspects of their use. Another major, individualistic barrier to better behavior among participants was financial: To stay sick at home longer without resorting to antibiotics, or buying more expensive meat, entails an economic loss, which was discouraging for some participants. In Sweden, patients try to recover as soon as possible from illness and go back to work [29], and parents encourage their children to do the same [30]. Welfare policies, such as a more generous temporary parental benefit, could help to overcome these types of economic barriers [29]. Furthermore, we need to strengthen individual duties that could override such economic concerns. In the FGDs, values and norms supporting such obligations were found. There was a consensus in the FGDs that individual responsibility for public health provides a fundamental reason to modify non-judicious behavior. This was also expressed in moral terms. This finding of individual responsibility diverged from observations of other empirical studies, where the responsibility for tackling AR was largely or exclusively attributed to others, typically healthcare staff and authorities [22,31]. However, it is consistent with the Swedish public health program where individual behavior and choice goes together with solidarity and the notion that people depend on one another [32]. Conceptually, it is useful to distinguish between egoistic and altruistic reasons for judicious behavior. As egoistic reasons, participants noted possible individual benefits such as a stronger immune system and reduction of the 'no available treatment' risk. Engaging in judicious behavior would also entail benefits such as being aware of contributing to the collective good and being protected against the shame of being responsible for non-judicious behavior. Research in fields such as HIV prevention and cancer clinical trials has highlighted the important role played by altruistic motivations [33,34], but altruism is deficiently accounted for in the HBM as it rests on the assumption that health-related behavior should result from one's own health concerns. However, previous studies confirm our finding, particularly those on Fig. 1 Results concerning AR and antibiotics use mapped through the HBM willingness to vaccinate [35,36], which have shown that individuals can engage in positive health behavior because of altruistic beliefs about a health threat to others. --- Health communication should empower One particularly interesting and encouraging finding is that the partakers largely agreed on the need for multi-stakeholder involvement and responsibility. Not only do statutory bodies and clinicians carry duties to improve the situation; individuals have them too. The FGD participants stressed that the public should be involved and play a role. Therefore, the public should be further informed about AR and get involved in the work to counteract it. These findings are consistent with the Special Eurobarometer 2013 in which 85% of the Swedish population agreed that everyone has a role to play to reduce the risk for human health derived from antimicrobial resistance, compared to the EU average of 79% [6]. Individual responsibility involves patients understanding what to ask for when seeing the physician or other healthcare professionals, as pushy patients are often said to negatively influence prescribers' behavior [4,37]. While previous studies have shown that patients who obtain prescriptions for antibiotics tend to interpret these as representing quality of healthcare or concern for the patient [38], the FGD participants described overgenerous prescribing primarily as another barrier. Patients do want to act responsibly, but need support from 'the system' to become aware of what they should do. A reason for overgenerous prescribing could be that family physicians give patients what they want, i.e. antibiotics, because they are worried about losing their patients to their colleagues [28,38]. Despite the efforts carried out in Sweden since the 90s, FGD participants felt that more information is needed. Previous quantitative studies on the Swedish population confirm good levels of public awareness, but also found common confusion about antibiotics use and AR mechanisms and spread [8,9]. A study on Swedish travelers found that low level of knowledge of antibioticresistant bacteria and the spread of resistance influenced travelers' behavior and risk-taking, resulting in unaware exposure to risk situations [10]. The main focus of the FGDs was the need for accurate AR information from family physicians. Receiving accurate information would further individuals' perception of self-efficacy and thereby empower patients to do the right thing, it was believed. This is in accordance with the literature, where there is substantial evidence for the association between effective communication, self-efficacy, and health behavior [39]. Interestingly, participants stressed how demotivating it was for them to think about countries without antibiotic control strategies and a lack of international coordination. What they read and hear seems to downplay what is actually achieved on an international level and emphasizes the problems abroad. Initiatives such as the EU One Health Action Plan against antimicrobial resistance, the global action plan against AR which was endorsed at the Sixty-eighth World Health Assembly in May 2015 [2], or that Sweden itself hosts the European Centre for Disease Prevention and Control and also is the base of ReAct [40, 41] largely go unnoticed. The key lesson here is that this lack of awareness of what is done to counteract AR seems to work as a powerful barrier to individual action, and any educational program should be careful to point to cooperative initiatives and give examples of successful programs. This would potentially work as an important cue to action. --- Limitations This study has some limitations. The small sample was relatively homogeneous with mostly Swedish-speaking middle class from an urban area. Thus, the results might not be transferable to other populations and contexts, particularly those in a rural community or those with other cultural or ethnic diversity or social class. Therefore, we welcome more studies that attempt to replicate our study in a different setting or context. --- Conclusions While lay people strongly and immediately perceive the severity of AR-related health issues, the way the AR problem is framed can influence perceived susceptibility negatively and hinder judicious behavior in relation to antibiotics use and AR. In communicating or engaging with the public, it should therefore be emphasized that AR is a significant public health issue that is already present and is getting worse. To think of it as some kind of future dilemma could lessen individual responsibility, which may reflect negatively on individuals and society. In addition, giving positive examples of ongoing international efforts to curb AR could be an important cue to engage in judicious behavior, as much as the lack of such examples could be a substantial barrier. People need to know that such international endeavor exists and feel that their contribution matter. People already trust their physicians and rely heavily on information received from them. This means that if people could trust their physicians to diligently prescribe antibiotics, to explain why they do what they do, as well as inform them on how to act against AR, being aware of doing well for themselves and others could work as a powerful cue to action. --- --- Additional file Additional file 1: Interview guide. Structure and contents of the interview guide. Abbreviations AB: Antibiotics; AR: Antibiotic resistance; COREQ: Consolidated criteria for reporting qualitative studies; FGD: Focus group discussion; HBM: Health Belief Model; HIV: Human immunodeficiency virus; MDR: Multidrug resistant; WHO: World Health Organization --- --- --- --- Competing interests The authors declare that they have no competing interests. ---

Background: High consumption of antibiotics has been identified as an important driver for the increasing antibiotic resistance, considered to be one of the greatest threats to public health globally. Simply informing the public about this consequence is insufficient to induce behavioral change. This study explored beliefs and perceptions among Swedes, with the aim of identifying factors promoting and hindering a judicious approach to antibiotics use. The study focused primarily on the medical use of antibiotics, also considering other aspects connected with antibiotic resistance, such as travelling and food consumption. Methods: Data were collected through focus group discussions at the end of 2016. Twenty-three Swedes were recruited using an area-based approach and purposive sampling, aiming for as heterogeneous groups as possible regarding gender (13 women, 10 men), age (range 20-81, mean 38), and education level. Interview transcripts were analyzed using qualitative content analysis. The Health Belief Model was used as a theoretical framework. Results: Antibiotic resistance was identified by participants as a health threat with the potential for terrible consequences. The severity of the problem was perceived more strongly than the actual likelihood of being affected by it. Metaphors such as climate change were abundantly employed to describe antibiotic resistance as a slowly emerging problem. There was a tension between individual (egoistic) and collective (altruistic) reasons for engaging in judicious behavior. The individual effort needed and antibiotics overprescribing were considered major barriers to such behavior. In their discussions, participants stressed the need for empowerment, achieved through good health communication from authorities and family physicians. Conclusions: Knowledge about antibiotic consumption and resistance, as well as values such as altruism and trust in the health care system, has significant influence on both perceptions of individual responsibility and on behavior. This suggests that these factors should be emphasized in health education and health promotion. To instead frame antibiotic resistance as a slowly emerging disaster, risks diminish the public perception of being susceptible to it.

Introduction Many sectors need to be identified, given importance, and rendered appropriate services and interventions, and one of those groups of a specific population of interest is the solo parents. Solo/single parents have undergone various circumstances why they are important in rearing their child/children. They, too, may experience discrimination and challenges that test their patience and sense of responsibility in raising their child/children. They depict greater accountability, especially in nurturing their children. Being left single-handedly with a father's and a mother's accountability may perplex them. Thus, these solo parents should be appreciated and render interventions and services for them to be helped in the situation that they are in. Parenting is challenging enough, even under the best conditions. More so, with one parent, the challenges are multi-faceted. One of the articles entitled, "The Challenges Faced by Single Parent Families " states that being a parent is itself quite a difficult job, but being a single parent could be even more tedious and stressful. A single parent can be compared to a weighing scale constantly trying to maintain the balance between varieties of tasks. The problems faced by single parents and their children are numerous. Some of these are financial problems -single parents often face many financial issues. They find it difficult to make ends meet since the single parents have to pay for all the expenses; and sense of loss and feeling of loneliness -the feeling of a sense of loss and feeling of loneliness is experienced both by the single parent and the children, whatever the reason for single parent status, divorce, death or abandonment. A single parent might feel they are carrying the weight of all the responsibilities, but the children are equally burdened owing to the new and drastically changed life. The Organization for Economic Cooperation and Development stated that seventeen percent of the population of children aged 0-14 years old are living in single-parent households around the globe. In 2016/17, the proportion of children living in a single-parent household varied between 6% and 28% in the different OECD countries, with an OECD country average of 17%. It was lowest in Turkey , Greece , Croatia , and Poland , while it was highest in France , the United Kingdom , Belgium , Lithuania , United States and Latvia . It was 19% in Ireland and Canada. Internationally, one-quarter to one-third of all families are headed by single mothers, calling into question the normativeness of couple-headed families. Developed countries, particularly, are experiencing an increase in single-parent families as divorce becomes more common. In addition, the DSWD under the Pantawid Pamilyang Pilipino Program record shows that some of the one hundred seventy thousand recipients are solo parents. In the Philippines, the Federation of Solo Parents Luzvimin estimated that around 15 million Filipino solo parents are struggling hard to support their families and raise their children alone. These are just a few of the literature that would tell that solo parenting is not happening in two or three countries but is happening in almost all of the countries. Solo parenting is now a worldwide concern. In the Philippines, while it is the policy of the state to promote the family as the foundation of the nation, strengthen its solidarity and ensure its total development, there is a law that provides privileges to solo parents and it is known as Republic Act 8972 of 2000. This law has been approved last November 7, 2000 and took effect on November 28, 2000. It aims to develop a comprehensive package of social development and welfare services for solo parents and their children to be carried out by the Department of Social Welfare and Development , as the lead agency. Its implementing rules and regulations was approved in April 2002. The comprehensive package of programs/services for solo parents includes livelihood, self-employment and skills development, employment-related benefits, psychosocial, educational, health and housing services. Moreover, Republic Act 11861, known as the Expanded Solo Parents Welfare Act, solo parents earning a minimum wage or below will receive a monthly cash subsidy of P1,000 from their respective local government units, provided that they are not a beneficiary of any other cash assistance program of the government. Solo parents who are earning less than P250,000 annually are also entitled to a ten percent discount and exemption from the value-added tax on their child's milk, food, micronutrient supplements, sanitary diapers, duly prescribed medicines, vaccines, and other medical supplements from the birth of the child until they turn six years old; will also be prioritized in low-cost housing projects through the National Housing Authority; automatic coverage under PhilHealth's National Health Insurance program; and access to scholarships and other educational programs of the Department of Education, Commission on Higher Education, and Technical Education and Skills Development Authority. Thus, these solo parents should be valued and render interventions and services for them to be helped in the situation that they are into. With the increasing number of solo parents in the country, the Department of Social Welfare and Development appealed for more support for some 14 million single or solo parents in the country, who single-handedly raise their children. DSWD said that solo parents were among the most vulnerable sectors of the society . Solo parents have their own ways of disabling their struggles as an individual and as a parent. Apart from it, they still need a helping hand to assist them in trying to become a good parent to their children thus, this sector needs to be identified, given importance and rendered appropriate services and interventions applicable to them. In this light, the researcher conducted research regarding the awareness and availment of services as provided in R.A. 8972 since it is now over two decades after the approval of the law and an increasing number of this sector was noted. Also, the researcher would want to know if this sector could have government services as part of its support system. Thus, the researcher would like to know if solo parents received comprehensive packages and interventions from the local government units and other service providers especially there is an expanded law for solo parents. --- Statement of the Problem This study determined the awareness and availment of services of solo parents as provided in the Republic Act 8972. Specifically, the study answered the following questions: --- Research Hypothesis There is a significant difference in the level of awareness and extent of availment in the services provided to solo parents across areas --- Research Design and Methodology The study used the concurrent-mixed method of research. This mixed method of research is characterized by collection and analysis of quantitative data along with collection and analysis of qualitative data to accurately define the relationships among variables of interest for the purpose of confirmation, corroboration or cross-validation within a single study. The descriptive method was used to determine the level of awareness along Criteria for Support, Qualification Of Solo Parents And Comprehensive Package And Development Welfare Services and extent of availment of services along Livelihood, Counseling, Parent Effectiveness, Critical Stress Debriefing, Education, Housing And Medical Assistance. The comparative method was used to determine the significant differences along the level of awareness and extent of availment The quantitative method was employed in determining the level of awareness of solo parents as to the services provided in the Republic Act No. 8972. The researcher employed a questionnaire adopted from the republic act. The qualitative method was used to discuss the benefits and challenges encountered by the respondent in the availment of the services along the identified areas. The qualitative data needed for the study was primarily gathered through the conduct of a focused-group discussion . Furthermore, the result of the findings of the study serves as the basis for crafting the intervention plan to enhance the level of awareness and extent of availment of services. --- Respondents of the Study The respondents of this research study were selected through a simple random sampling technique They are the solo parents who are duly registered at the City and Municipal Social Welfare and Development Offices in the five municipalities namely Tiwi, Malinao, Malilipot, Bacacay and Sto. Domingo and city of Tabaco in the 1 st District of Albay. A total of three hundred eighteen respondents participated in this research study, wherein 11 were from Tiwi, 46 from Malinao, 35 from Malilipot, 104 from Bacacay, 81 from Sto.Domingo and 41 from Tabaco City. Out of three hundred eighteen respondents, two-hundred one of them belongs to the age bracket of thirty-five to sixty-five years old and comprises the highest percentage of 63.2% of the respondents and only four from over sixty-five years old has the lowest percentage of 1.3% of the over-all respondents. Among them, two hundred eighty-nine are female and has a percentage of 90.9%, while the remaining percentage of 9.1% with a frequency of 29 respondents are male. On the economic condition aspect, it was based on the monthly income of the respondents which were enumerated in the table. It shows that solo parent with a monthly earning of Php 1,000 to Php 5,000 a month made up the highest percentage of 77.0% of the total participants, while the lowest percentage of 1.3% consist of solo parent with a monthly income of Php 20,001.00 and above. Income bracket from Php 5,000 -10,000.00 has 16.4% with 52 respondents; Php 10,001-15,000.00 has 2.2% with 7 respondents and Php 15,001-20,000 has 6 respondents or 1.9%. With this data, majority of solo parent families belong to low income family as per NEDA income classification, that those earning less than Php 11, 600.00 a month is considered poor, that is less than official poverty threshold PSA , Making use of Thresholds from Albert Et Al . The daily life of poor children tends to be very difficult from that of children whose families are more affluent. This is because of the quality of their home, school neighborhood environment as well as access to material and social resources. Any solo parent whose income falls below the poverty threshold as set by the National Economic and Development Authority and subject to the assessment of the DSWD worker in the area shall be eligible for assistance. A solo parent can directly inquire from the Health Services , Educational Services , Housing , and Parental Leave . The number of children in a household being headed by a solo parent was identified as well, having two hundred twenty-three participants with children under one to three years old with the highest percentage of 70.1%, and the lowest percentage of 1.3% which corresponds to four participants with children ranging from ten to twelve years old. Small family size especially for solo parents presents more advantages than disadvantages. According to fairstartmovement.org, there are numerous social and emotional benefits in having small family size. Smaller families tend to have fair start in terms of decision making authority having less persons to consider and to be consulted. Greater sense of well-being among the family members is being looked after together with the sense of community. Smaller families tend to result also in a more equal distribution of parental responsibility. Since solo parenting already poses challenges to parents especially in terms of their financial resources, having smaller families helped them to manage their resources and yet the most important consideration is that parents can provide more time, attention and investment in each child. The last characteristic which is the number of years as a solo parent was determined having 42.8% as the highest percentage with one hundred thirty-six participants being a solo parent for one to five years. The least respondents with 2.2% as the lowest percentage with seven participants have been a solo parent for twenty-one years and up. The characteristic with highest percentage of 38.7%, with one hundred twenty-three respondents were classified as solo parent after their spouses died, and the lowest percentage of 0.9% with only three participants were identified as solo parent after their spouses were admitted in an institution for mental impairment certified by a public health practitioner. The respondents who were involved in the focus-group discussion has a total number of one hundred fifty-eight across the six locale of the study. Their time availability was considered in their involvement and participant in the FGD. --- Data-Gathering Instrument and Procedure The researcher performed necessary steps to ensure that time, efforts and resources were safeguarded against unnecessary and untimely actions. The data gathering procedure started after the panel approved the respective research study together with its research instrument. After which the researcher asked permission from the Dean to conduct the study. Then, the researcher requested assistance from the respective Municipal and City Social Welfare and Development Officers for the conduct of the study together with the list and identification of the respondents. The researcher tapped an expert to translate the interview guide into vernacular language. An administration of a pre-test was also put in place to check the instrument before the actual administration of it to the respective respondents. The researcher personally distributed the questionnaire. Personal conduct of interview and Focus -Group discussion were the main strategies in gathering the needed data. The researcher asked assistance from the Municipal and City Social Welfare and Development Offices to help her in administering the distribution, survey and retrieval of the questionnaires. Concerted effort was made to ensure adequate presentation of each category of respondents. The respondents were given instructions and were guided in answering the questionnaires. After finishing the gathering of data, all the information was organized, summarized, analyzed and interpreted. Then all the information was reviewed to make sure that everything is clear and all needed data are gathered. --- Ethical Considerations To protect both the respondents, researcher and the institution, ethical considerations were put in place. This was to ensure the quality and integrity of the research study as well protecting the confidentiality and anonymity of the respondents. The principle of beneficence was given utmost importance too.An Informed Consent Form was accomplished by the respondents before the administration of the questionnaire. This warrant that they participated voluntarily in the conduct of the research while allowing the researcher to gather only relevant information. --- Presentation, Analysis and Interpretation of Data The statistical tools used includes mean and ranking. Mean and ranking were used to determine the respondent's level of awareness and extent of availment of services of solo parents as provided in Republic Act. The Analysis of Variance or F-test through Statistical Package for Social Sciences version was utilized to determine the significant differences between the ratings given by the respondents to different indicators along level of awareness and extent of availment. For the benefits and challenges experienced by the solo parents in the availment of the benefits the researcher conducted a focus-group discussion. Their answer was based on the personal experiences and they were given a chance to explain their responses by elaborating further and providing situations associated with their experiences. The results revealed that among the three indicators, indicator qualifications of solo parents got the highest mean of 2.99 and interpreted as high, followed by criteria for As for the indicators along the level of awareness, indicator qualification of solo parent got the highest mean while indicator comprehensive package of social development and welfare services got the lowest with 1.59 mean. The result relates the finding of Orbeta and Paqueo . According to them, that for decades, government programs that were supposed to help the poor, especially those in farflung areas, failed to reach them. And if they did, they were often ineffective or inadequate. As they became hopeless and disaffected with the government, many were driven to participate in political destabilization, armed rebellion and other forms of violence. Arguably, such participation was motivated by a desire to bring about a brighter future for their children, if not for their own selves. This is relevant to the result of the recent study in terms of failure to reach the target beneficiaries thus the awareness falls into poor. --- Table 2. Summary Table of Extent of Availment of Services of Solo Parents along Livelihood Development, Counseling Services, Parent Effectiveness, Critical Incidence Stress Debriefing, Flexible Work Schedule, Educational Benefits, Housing Benefits and Medical Assistance Legend: 1:00-1.75-very low; 1.76-2.5 low; 2.51-3.25-high; 3.26-4.00 very high The respondents' rating has a 1.09 mean and described as very low. The services include livelihood, counseling, parent effectiveness, critical incidence stress debriefing, flexible work schedule, education, housing and medical assistance. The top 3 services that got the highest mean were as follows: flexible work schedule with 1.18 as its mean followed by educational benefits with 1.13 mean and lastly the medical assistance with 1.11 as its mean. The flexible work schedule was conferred by some of the employed solo parents. Accordingly, during the focus group discussions, not all employed solo parents were accorded with the flexible work arrangement as it depends on the executive or management level. The solo parents on the other hand, as they shared, they do not have the courage to assert their privilege with the fear of losing their job which may cause them more problems. --- INDICATORS On the other hand, the group was in agreement that if their sector is active and with strong-willed leaders they might be able to assert their privileges. Educational benefits came second with highest rating. The educational benefits as shared by the respondents were the scholarship for their children especially in tertiary level. Their children were not granted as solo parents' dependent or exclusive scholarship for solo parents' dependents but the national and local government program for education. They just ascribed it to the solo parents' act as their children were given priority in terms of educational assistance. Meanwhile, the medical assistance was assessed with 1.11 mean. The same with the educational assistance, the attribution of the availment of medical and health related services as discussed during the focus-group discussion was mainly on the prioritization level. Discounts and other benefits are yet to be availed. While the bottom three indicators were parent effectiveness, critical incidence stress debriefing and housing benefits. The parent effectiveness services got a mean of 1.05, critical incidence stress debriefing with 1.04 and housing benefits with 1.01 as its mean. These findings as discussed in their respective tabular and narrative discussions depicts that the solo parent as claim-holder of the republic act were not given the benefits due to them. This supported the findings of MacClune and McGinn in their study entitled "Design, Monitoring, Evaluation and Learning for Climate Resilience: A guidance Paper for the Philippines" that monitoring represents day to day of gathering of reporting of critical information, together with a snapshot analysis, usually of an immediate and practical matters at hand. That monitoring represents an opportunity to flag issues or problems whether-external or internal -that may be influencing smooth implementation or highlight that changes in strategy, targets or personnel may be necessary. From the result, it can be depicted that there is a connection between the level of awareness and the extent of availment. One of the factors shared by the respondent was that they were not properly introduced to the services they may/can avail of as duly registered solo parents. Further, should they have known it, they would not discard the opportunity to avail as it is a big help for them as sole earners and single handedly raising and keeping their family. The services as described were as comprehensive as it was; however, it was of no use since none of them benefited from such. It can be suggested here to utilize the 'sandwich method'. In layman's concept, it is a top-bottom and bottom-up approach to check on something. The worker and the beneficiaries may join hands and exercise responsibility to keep abreast of the services they must share with the beneficiaries. Likewise, the beneficiaries to check upon themselves the services they can avail. Further, it can be concluded that coordination, human resource, and networking, and linkaging between and among the parties involved are essential to ensure a certain program, project or activity be implemented successfully and effectively. Also the monitoring and evaluation should also be considered to exercise the check and balance principle between and among the concerned social welfare agencies. Similarly, learning the best practices of the other local government units and social welfare agencies can be replicated or scaled up to promote the advancement of the solo parents as the clientele group. It shows the difference among aspects of livelihood development, counseling services, parent effectiveness, critical incidence stress debriefing, flexible work schedule and educational benefits across areas. The difference across areas was found to be significant at significance level of 0.000. The results indicate that the level of awareness of solo parents to the republic act directly affects the extent of their availment of those services. There is no significant difference on the extent of availment among the different aspects as provided in the RA 8972 namely the livelihood development, counseling services, parent effectiveness, critical incidence stress debriefing, flexible work schedule, educational benefits, housing benefits and medical assistance. This finding was supported by the results in the different indicators in the extent of availment parameter wherein along the livelihood development services it was noted it a very low availment, the same goes to counseling services with a very low availment. The parent effectiveness services and critical incidence stress debriefing services also have a very low availment as rated by the respondents. Along with flexible work schedules, educational benefits, and medical assistance, respondents rated this with a very low availment also. Based on the data gathered, the primary reason for such very low availment of the services as stipulated in RA 8972 was that the solo parents were not aware of these benefits thus they were not able to avail such. It was noted during the focus group discussion that the reason for not being aware were attributed to the fact that they are not fully oriented about the salient features of the law. They submit forms applying for solo parents, undergo an interview process for assessment for their identification card. On the other hand, organization factor such as functional structure and active leader were being considered as one of those factors that can be capitalized to enhance their extent of availment. --- Benefits and Challenges along the Availment of the Services Based on the collated and collective data during the focus-group discussion, the benefits availed by the solo parents includes the emotional support as one respondent shared that "Igwa ako na naging barkada na kapareho ko single parent na nasasabihan ko kan sakong pinag-aagihan tapos nagkaka intindihan kami ta pareho ang samung estado. Su may kaistoryahan ka na pareho kamung lebel, maray siya ta nakakagian nin pamati , . Livelihood training invitation, participation to team and capacity building activities and improvement on social relationship were among the highlights of the benefits solo parents' received. On the other hand, the challenges encountered by the respondents in availing the services for solo parents comprises discrimination, financial constraints, inactive solo parents' organization and lack of communication and inadequate support of government. The collective response of the respondents as to the areas of the different duty-bearers that needs improvement so they can access and benefit from the privileges that is due to them includes the level of prioritization along program planning that they should be accorded with what the republic act is all about. "Gusto mi na magkaigwa na meeting na yaon ang mga representate kna gabos na imbuelto na ahensya para magkahuron asin malatag ang mga program kung igwa mananggad ", Participant, 71, 2019). Apart from the meeting, the respondents shared that the government must improve on how they are implementing programs to different sectors, that it must be inclusive. Other respondents observed that the implementing agencies lack in coordination and information dissemination mechanisms, they lack support to the solo parents group, they are not prepared with the set of programs, lack of funding and the political orientation and affiliation. These observations of the respondents boil down to the organizational, communication and information-dissemination as well as capacity of the workers. In this, respondents collectively shared that the staffs assigned to them during the process of application were only familiar with the process of ID application, apart from that, they no longer know how the solo parents can avail of the services specified in the law. This is the main reason why the solo parents in the 1 st District of Albay were not fully aware of the services hence they were not able to avail such. An intervention plan is crafted to help the different stakeholders to come up with activities, projects and program that would enhance the level of awareness and extent of availing of services of solo as provided in the Republic Act 8972. The intervention plan's general objectives includes a) to provide recommendations and suggestions on how to enhance the awareness and availment of services of solo parents to Republic Act 8972; b) to present and propose a doable and realistic activities aimed to address the challenges experienced by the solo parents along with awareness of the Republic Act and extent of availment of services and c) identify the needed resources, persons involved, time frame and the expected output and outcome for the proposed intervention to be realized. The activity/strategy falls into a) advocacy and communication campaigns; b) capacity building; c) linking networking and d) team building. For advocacy and communication campaign, it aims to increase the level of awareness of solo parents with regards to the qualifications of solo parents, criteria for support and comprehensive package of social development and welfare services. Activities under this includes conduct of comprehensive orientation of RA 8972 along with the salient features of RA 11861, printing and distribution of information and education campaign materials translated Bikol dialect for easy understanding, organization of solo parent group for each barangay and conduct of regular session/meeting for the organization. Capacity building aims to equip the key persons in the local social welfare and development offices regarding the solo parents. Activities under this strategy includes conduct of live-in and inclusive trainings, seminars and workshop to solo parents, provision of technical and capital assistance to solo parents who completed the series of training, seminars and workshop. Strategy in linkaging/networking aims to implement a cost-effective and efficient services to solo parents that includes activities as to planning and budgeting workshop to be integrated with persons with disabilities, senior citizens and gender and development concerns and forging od memorandum of agreement or understanding with key government offices to carry out the intervention. For team building strategy, it carries to help the solo parents to develop further their social and interpersonal skills and to create a support system between and among groups of solo parents. This will be carried out through conduct of leadership training, cornerstone training, proposal crafting and interpersonal enhancement training. --- Conclusions The level of awareness was interpreted as poor. This came from the indicators: criteria for support as poor, qualifications of solo parent as high and the comprehensive package of social development and welfare services as very poor; 2) extent of availment of services was interpreted as very low. These indicators are the livelihood development, counseling services, parent effectiveness services, flexible work schedule, educational benefits, housing benefits and medical assistance were all interpreted as very low; 3) there is a significant difference in the level of awareness and extent of availment across areas; 4) benefits solo parents experienced were the emotional support they gained from their fellow solo parents, livelihood training invitation, participation in capacity and team building activities and improvement on social relationships. The challenges they encountered includes discrimination, financial constraints, inactive organization, lack of communication and inadequate support of the government. --- Acknowledgement The researcher would like to extend her heartfelt gratitude and appreciation to the following persons who had made significant contribution and guidance in the preparation of this research. To the Almighty God for the strength and faith to go on, for the answered prayer and courage to continue the journey of completing this study. To Dr. Cesar C. San Jose, Dean of Graduate School, for sharing his expertise, precious time and words of encouragement not just in the completion of this study but throughout the graduate journey. To Dr. Maria Teresa B. Javier, her thesis adviser, her boundless appreciation for the encouragement and for believing that she can accomplish the study. To the panel members: Dr. Nathalie C. Ranin, Dr. Sandy C. Lasa, Dr. Randy P. Bacares and Dr. Virginia C. Reyes for substantially and constructively critiquing the researcher's manuscript and sharing their expertise in the improvement of the study. To the Head of City and Municipal Social Welfare and Development Office, Mesdames Cristina Bonagua of Tabaco CSWDO, Cristy Candolea of Tiwi MSWDO, Cecilia Regalado of Malinao MSWDO, Shierlina Gonzaga of Malilipot MSWDO, Ma.Salome Villanueva of Sto. Domingo MSWDO and Aurea Barrameda of Bacacay MSWDO together with their staffs for allowing the researcher to conduct the study while providing her the necessary data about the solo parents in their respective offices. The researcher is beyond grateful. To the valued respondents, for the cooperation and making themselves available during the conduct of the interview and focus-group discussions. The researcher would like to thank her mentors, Prof. Maricel V. Abrigo and Prof. Shiela Bustamante, Prof. Malou Tango together with Ms. Nelbenjie Noleal for the constant reminder and encouragement and for the genuine friendship that help her endure the journey. Special mention to Ma'am Lydia Montero USI Graduate School staff and Ms. April Aspe, student assistant, for the warm welcome and assistance while the researcher is pursuing her degree; to Mesdames Gloria C. Abuque and Mayette N. Regidor, for their patience in taking down the comments, suggestions and recommendations made by the panel members. To Ayessa, Ate Ivy, Marj, and JABZ for their support, help and for always being there as a support system during this journey. To Missie, Marissa, Janet, Jayson, Myralyn, Jassel, Maria, Rowena, Rizza, Arjay, Eloisa, Joice, for helping the researcher in mobilizing the respondents. To Dr. Froilan D. Mobo, Editor-in-Chief of the International Journal of Multidisciplinary: Applied Business and Education Research , for the opportunity, guidance and support to publish this research study. To the researcher's family and relatives and to those who were not cited but have contributions in one way or another in the completion of this study, thank you for being part of the researcher's journey towards success.

This research study was purposely conducted to determine the Level of Awareness and Extent of Availment of Services of Solo Parents as Provided in the Republic Act 8972. The concurrent-mixed method of research was utilized in the conduct of this study. From the results and findings of the study, the following conclusions were drawn: a) the level of awareness was interpreted as poor. This conclusion came from the following indicators: criteria for support as poor, qualifications of solo parent as high and the comprehensive package of social development and welfare services as very poor; b) extent of availment of services was interpreted as very low as the following indicators were assessed by the respondents as very low at all. These indicators are the livelihood development, counseling services, parent effectiveness services, flexible work schedule, educational benefits, housing benefits and medical assistance were all interpreted as very low; c) the difference in level of awareness and extent of availment among aspects across areas is significant. Proposed Intervention Plan was crafted to help the local government units particularly the City and Municipal Social Welfare and Development Offices enhance the level of awareness and extent of availment of benefits of solo parents.

Paying for college is harder than it used to be. As tuition and fees have increased at universities across the country, students and their parents have made much greater sacrifices to pay for higher education . As of 2018, Americans have amassed $1.5 trillion in student loans, surpassing credit cards and auto loans to become the second-highest debt category, behind only mortgages . Although rising college costs have affected all college students, data suggest that students of color-and especially Black students-have been disproportionately impacted. Compared to their White peers, Black students have higher debt balances, higher interest rates, and are more likely to default on their loans . Social scientists have investigated many causes of Black-White differences in college funding and outcomes, such as race differences in the type and quality of post-secondary institutions attended . In this article, we assess one factor that has received comparatively less attention, especially since the beginning of the student debt crisis: parental college savings. In many ways, parental college savings is a product of historical and contemporary racial disadvantages that have already played a role in shaping families' finances by the time their children begin to think about college. Parents' ability to save for their children's college education is a product of many factors, including not only income but also wealth, which differs substantially by race and compounds across generations . Aside from race, gender is a key factor that may shape parental college savings. Girls have better academic performance than boys throughout the K-12 years, and women are more likely than men to earn bachelor's degrees . White women's rates of B.A. completion surpassed White men's beginning with cohorts born after 1960, and Black women have outpaced Black men in this regard since as early as the 1930 birth cohorts . At the same time, theories of parental investment suggest that parents might invest more resources in boys' education, given that social and economic opportunity structures continue to advantage men . This evidence suggests that parental college savings is likely to vary by gender-whether due to parents' beliefs about their children's abilities, or broader attitudes toward gender socialization. In this article, we take a quantitative, intersectional approach to the study of parental college savings. Drawing on the perspective that race and gender have multiplicative effects on numerous dimensions of life chances , we contend that both race and gender are likely to affect whether parents save for their children's college education, as well as how much they save. We use theories of parental investment to make this argument, as well as empirical findings that point to persistent race and gender differences in how students pay for college. To investigate these dynamics, we use data from the High School Longitudinal Study of 2009 , a survey conducted by the National Center for Education Statistics . The HSLS is the most recent nationally representative survey with rich data on parental college savings and pre-college social and academic experiences, making it an ideal dataset for our study. In addition to the main analyses that assess parental college savings among 11 th graders, we also examine the other funding sources that parents anticipate using to pay for college. Depending on whether these funding sources must be repaid-not to mention their interest rates, repayment schedules, and who is responsible for repaying them-these anticipated funding sources can have long-term implications for financial well-being across race-gender groups. In total, our findings reiterate the idea that college funding is a mechanism through which higher education reproduces inequality. We show that these inequalities emerge at the nexus of race, gender, and pre-college achievement-a combination of factors that has been under-examined in the literature on funding for higher education. --- RACE, GENDER, AND PARENTAL COLLEGE SAVINGS Although research on college funding remains nascent, several recent studies have considered how students pay for college , and how these funding arrangements differ by race . Most of this research focuses on student loan debt-and rightly so, given that racial differences in student loans are large and have persistent effects throughout the life course. Black college students accrue substantially more educational debt than White students . Although these gaps in student loans emerge during college, they continue to grow after students leave, as Black students face more barriers in making loan payments , and their loans carry higher interest rates than that of their White peers . We therefore focus on Black-White comparisons in this article, as have many other scholars, but other racial groups warrant investigation in future work. Less research has focused on gender differences in borrowing, but recent estimates indicate that women graduate with more debt than men. The average woman graduates with about $21,000 in student loans, versus about $19,500 for men . There is also evidence that men and women respond to debt differently. Both men and women have diminished chances of graduating when they have high debt balances, but men tend to drop out at lower debt levels than women, suggesting that women have a higher tolerance for indebtedness . Despite this growing emphasis on student loan debt in the social science literature, relatively little research has considered the issue of parental college savings . Even less research has focused on race and gender differences in parental college savings-and we are aware of no research that takes an intersectional approach to this topic. In some ways, this scholarly focus on debt rather than parental savings is justified, given that disparities in parental savings frequently morph into disparities in student loan debt as students seek to cover their unmet financial need . Yet, saving for college is a distinct social process that is shaped not only by parents' ability to pay for college , but also parents' forecasting of their children's academic potential for college, as discussed in detail in the next section. Research on parental college savings, therefore, provides additional insight into family decision-making and historical and contemporary racial inequality and that is related to, but distinct from, the issue of student loans. A handful of studies have considered racial differences in parental college savings using data on earlier cohorts of students. Steelman and Powell use data from High School and Beyond and NELS:88 to show that Black parents invest just as much in college than White parents once background characteristics are controlled for. Others have similarly used NELS:88 data to show that Black-White differences in social class account for racial gaps in parental savings and, in turn, college attendance . These studies provide key insight into race and parental college savings, but the data used in these analyses are now more than 30 years old. Many demographic changes have occurred in the intervening period-including, but not limited to, the reversal of the gender gap in college completion among Whites , and Black women continuing to grow their advantage in college completion over Black men . This warrants an updated investigation into parental college savings that emphasizes both race and gender. --- ASSESSING ECONOMIC AND ACADEMIC FACTORS Drawing on theories of parental investment and prior empirical findings, we contend that two main sets of factors are responsible for shaping patterns of parental college savings in the United States. The first is economic and family factors, which encompass opportunities and constraints that affect parents' ability to save for their children's college education. The second is academic factors, which reflect the student's academic preparation for college. Parents may use these academic indicators to make an educated guess about their children's likelihood of attending college, which, in turn, may affect parents' tendency to save. Below, we outline these two sets of factors and discuss how they may vary by both race and gender in shaping parental savings for college. --- Economic/Family Factors and Parental College Savings Generally speaking, parents in higher socioeconomic status groups provide children with more college funding than those in lower SES groups. Of course, there are some exceptions to this rule, such as affluent parents who would prefer their children work their way through college in order to have some "skin in the game" . However, research typically observes a positive relationship between parental SES and their spending on children's college education . Studies suggest also that family configuration plays a role when it comes to children's receipt of economic resources for college. According to resource dilution theories of parental investment, as the number of children in a family increases, the amount of parental investment that can be provided to any one child decreases . Higher education is especially prone to resource dilution because it is so challenging for parents to pay for multiple children to attend college. Gender composition of sibship also matters: some research shows that children's resources for college are most diluted when they have multiple brothers , presumably because parents are more motivated to provide college funding for sons than daughters . Although both race and gender are linked to constraints on parental college savings, race typically is considered a more salient factor because race is strongly linked with economic status. A long line of research shows that Black families are disadvantaged relative to White families across multiple economic indicators, including income, wealth, and educational attainment. These disparities are a reflection of historical and contemporary processes of racism and discrimination in the labor market, housing, access to credit, and other linked institutions ). There is also evidence to suggest that racial differences in parental college savings vary across the economic spectrum. For example, research shows that Black-White differences in student loan debt are largest at the highest levels of parental wealth, in part because high-wealth White families have exponentially more assets than their Black counterparts . This pattern implies that we would also observe a racial gap in parental college savings among the most advantaged families. By comparison, less research has focused on race differences in parental college savings among the least advantaged families. In contrast to trends among the most affluent, we might expect Black parents to have an advantage here, in light of prior research showing that Black parents save more than White parents once background characteristics are controlled for . It may be that the Black advantage in parental college savings found in previous work is driven by relatively high savings in lower-income Black families. In this article, we further tease apart differences in parental college savings by considering how savings varies across the economic spectrum-thus showing how race and gender are associated with college savings for those with many and also few economic resources. --- Academic Factors and Parental College Savings Aside from economic factors as predictors of parental college savings, students' academic qualifications also play a key role. Here it is important to acknowledge that students' academic achievement is highly correlated with their family's economic circumstances, such that students from higher-SES families generally have much stronger academic credentials than their lower-SES peers -although the relationship between parental SES and student outcomes is stronger for Whites than for Blacks . Notwithstanding these relationships, academic factors are fundamental to the study of parental college savings because parents use academic information to project their children's chances of college success-a process that generations of social scientists have considered . Scholars in the human capital tradition have long posited that high achievers receive more parental resources than low achievers because they are more likely to succeed in college and, eventually, the workforce . In this theoretical perspective, parents may see high-achieving children as "safe bets" who are likely to yield a high return on investment. The status attainment model similarly predicts a positive relationship between children's academic performance and parental investment . It follows, then, that parents may save additional resources for children with strong academic credentials, over and above what their economic resources would normally dictate. In particular, recent research has highlighted the relationship between gender and academics. Throughout the K-12 years, girls and women generally have stronger academic performance than boys and men . If parents are motivated to reinforce strong academic performance when setting aside resources for college, then it follows that girls should have more savings than boys on average. But at the same time, social and economic opportunity structures continue to advantage men in the U.S. . This dynamic could encourage parents to designate additional resources for boys, if parents are motivated to support children who will experience fewer obstacles in adulthood . We expect that the intersection of race and gender is particularly important in the case of academics. As noted above, research shows that gender gaps in college completion are outsized among Black students. Of the bachelor's degrees conferred to Black students in 2016-17, more than 64 percent were conferred to women . Therefore, despite having fewer economic resources on average than their White peers, Black women achieve relatively high rates of college completion, and thus they out-perform what would normally be projected for students with their economic profiles. This may put Black girls in a challenging situation, however, when it comes to parental college savings. Even if parents of Black girls are adjusting their college savings upward to be in line with their daughters' academic performance, as human capital theories would predict, these adjustments may eventually hit the ceiling of Black parents' economic circumstances. As a result, Black girlsand especially high-achieving Black girls-would disproportionately bear the brunt of any average racial differences in parental college savings. If this is the case, then Black girls may face acute economic challenges in funding higher education that can potentially have broader consequences, such as suppressing their college completion rate and deepening racial inequalities in debt and assets. --- The Current Study To reiterate, this article assesses race and gender differences in parental college savings. To account for the fact that students have different chances of attending college-and parents theoretically calibrate their savings to reflect those differential chances-our models incorporate students' chances of attending college as determined by both economic/family factors and academic factors. In addition to the main analyses that examine parental college savings in students' 11 th grade year, we also investigate the additional funding sources parents anticipate using to pay for their children's college. These analyses investigate race-gender differences in students' chances of using a range of financial instruments, including liquid earnings and savings; grants and scholarships; and government-backed and private loans . We devote less space to these analyses in this literature review because we focus mostly on the issue of parental college savings. However, depending on whether these other funding sources must be repaid-not to mention who is responsible for repaying themthese anticipated funding sources can have lasting implications for economic well-being across race-gender groups. --- DATA & METHODS --- Data We use data from the High School Longitudinal Study of 2009, the most recent nationally representative survey with information on parental college savings and pre-college social and academic experiences . HSLS is a survey sponsored by the National Center for Education Statistics that focuses on students' pathways through high school and post-secondary education.1 Respondents were first recruited in fall 2009, and follow-up interviews were conducted in 2012, 2013 , and 2016. An additional follow-up is planned for 2025. Most of the variables we use come from the first student and parent follow-up surveys, conducted in 2012, when most students were juniors in high school. HSLS is unique among NCES surveys because of its focus on students' interest and experiences in STEM . Although our primary interest is not STEM, the survey's focus on STEM has implications for some of the items we used . The main limitation of the HSLS dataset for our purposes is that it does not contain information on parental wealth -we discuss this limitation more throughout. The sample is limited to students who identify as either White or Black, given that most research on race, debt, and assets addresses the Black-White divide, and we focus on squaring these findings with research on gender differences in college completion among Blacks and Whites. 2 The sample is smaller than that for other studies using HSLS data because the item about parental college savings was administered to a random sample of respondent parents. Once we account for this element of the survey design , item non-response in the HSLS is low, and we lose only 418 cases to missing data on the covariates. The final sample of 3,895 consists of students who are either White or Black, with complete data on all outcomes and covariates. Table 1 shows descriptive statistics for the variables, separated by our race-gender groups of interest. --- Parent-Reported College Savings The main dependent variable is parental college savings, which parents reported in the 2012 follow-up, when most students were in the spring of their 11 th grade year. This measure represents the financial resources explicitly reserved for college at a time when many students are starting to make concrete plans for their education beyond high school. We use this variable in two forms: First, we examine whether any money is saved for the child's college education . Second, we examine the amount of money saved among those who have saved for their child's college education, which removes the large number of respondents who reported zero savings. 3 College savings is reported categorically in HSLS. We assigned each respondent the median value for their category, and top-coded this variable as 1.5 times the top category for those who reported savings in the highest range. Some parents may have made errors when reporting the amount they have saved, as is sometimes the case for 2 Although some students identify as more than one race, the dataset does not indicate which races are included under the category of "multi-racial," so these students are excluded. 3 Results are consistent when respondents who reported zero savings are included in these models. financial measures that are commonly included in surveys, such as household income. Assuming classical measurement error, the results we present below should be considered conservative estimates of differences between our groups of interest. Despite the possibility of measurement error here, the parent-reported data included in the HSLS are far preferable to student estimates of their parents' college savings, which are reported in some surveys. --- Funding Sources Parents Expect to Use for College We also examine whether parents expect to use each of six funding sources to pay for their children's college, as measured in the 11 th grade parent survey. These funding sources are listed in the bottom section of Table 1. Parents' or relatives' earnings/savings and student's earnings/savings reflect the economic resources available to parents and students. Scholarships or grants are typically either need-based or merit-based, and do not need to be repaid. Federal or state loans eventually do need to be repaid, but their interest rates and repayment plans are more forgiving than private loans in the parent's name or private loans in the student's name . Each of these funding sources was measured as a binary variable, where "1" indicates that the family plans to use the funding source, regardless of the amount they intend to use. Although we do not have information on how much the parents anticipate drawing from each of these sources, a parent's engagement with each of these funding sources is an indicator of their financial opportunities and constraints, as well as their broader approach toward parental investment. Importantly, these outcomes are not mutually exclusive, as families must often piece together multiple funding sources to pay for higher education. --- Independent Variables As discussed earlier, prior research has conceptualized parental college savings as a function of the child's chances of attending college. These chances are largely determined by the parents' ability to pay and the child's pre-college academic performance. To quantify these two dimensions, we adapt a method used by Brand and Xie to estimate each student's predicted probability of enrolling in college. Specifically, we take an outcome measured in a future round of the HSLS survey-whether the student was enrolled in college full-time in fall 2013-and estimate each student's predicted probability of achieving that outcome. 4 This method allows us to model the student's chances of attending college , while also allowing us to combine multiple predictors into more succinct measures of economic and academic background. We separate Brand and Xie's predictors into two models, representing the two separate dimensions we have theorized throughout. As listed in Table 1, Economic/family factors include: family income; the highest level of education completed by either parent; whether the respondent parent is married or partnered; number of siblings; and whether the student's high school is located in an urban area. Academic factors include: the student's score on an NCESadministered math test; whether the student took at least one AP course; and whether the student believes "all" their friends plan to attend a four-year college. We use these two sets of variables as predictors, with future college enrollment as the outcome, to generate two separate measures: students' predicted probability of attending college as determined by economic/family factors and academic factors, which we use separately in the analyses. Most of our predictors are the same as those used in Brand and Xie , but there are some differences and omissions because we rely on different datasets-we compare our variables with Brand and Xie's in Appendix A in the online supplement. Of course, economic/family and academic factors are highly interrelated, and we recognize that it is not possible to isolate the effects of one of these sets of factors without also introducing aspects of the other. Yet, we use these factors separately in models to understand to what extent they are related to parental college savings independently. Figure 1 shows the distributions of each of these predicted probabilities for our four racegender groups of interest: White boys, White girls, Black boys, and Black girls. Predicted probabilities of attending college based on economic/family factors are shown in the left column, and predicted probabilities based on academic factors are shown in the right column. These distributions show a clear divide between White and Black students. White boys and girls generally have higher predicted probabilities of attending college than their Black peers. Black boys' probabilities are perhaps the closest to normally distributed, with many students having moderate predicted probabilities of attending college. Black girls' probabilities, in the bottom row, tend to be normally distributed when we consider economic/family factors, reflecting their moderate economic circumstances. At the same time, Black girls' probabilities are more negatively skewed when we consider academic factors, reflecting their strong academic qualifications. This apparent contradiction between the economic and academic circumstances of Black girls is an important dynamic that we will consider further throughout the analyses. In addition to the predictors described above, the models account for the type of college the parent expects the student to attend in the fall after high school graduation, if any . We control for this measure because different types of colleges are generally linked to different costs of attendance, and parental savings could be dialed either up or down depending on what parents expect to pay . --- Analytic Strategy We begin by assessing basic differences in parental college savings. Here we consider how race, gender, and their intersections, along with the other predictor variables of interest, are associated with parental college savings. Then we incorporate our predicted probability measures to determine how students' chances of attending college, as dictated by economic/family and academic factors, are related to college savings. As a final component, we examine how students' predicted probabilities of enrolling in college are associated with the funding sources parents expect to use to pay for college. We assess how these anticipated funding sources differ at various probabilities of college enrollment , and across race-gender groups. --- RESULTS --- Race, Gender, and Patterns of College Savings We begin by assessing mean differences in parental college savings for White boys, White girls, Black boys, and Black girls. Before turning to the multivariable models that account for sociodemographic controls, the descriptive statistics in Table 1 show average parental college savings across race-gender groups. As indicated in Table 1, saving for college is by no means universal among parents. Fifty-six percent of parents of White boys have saved anything by their child's 11 th grade year, versus 54 percent of parents of White girls. This figure drops to 34 percent and 38 percent for parents of Black boys and Black girls, respectively . 5Table 1 also reveals significant race-gender differences in the amount parents have saved for college, conditional on having saved. Parents of White boys report saving an average of $24,810, compared to $21,693 for White girls . Parents of Black boys and Black girls report saving substantially less than parents of White boys . The multivariable models in Table 2 assess the extent to which these significant mean differences diminish once other control variables are accounted for. Model 1 examines whether parents have saved anything for college, using logistic regression. Here we see that the significant race-gender gaps dissipate once other control variables are included in the modelparticularly economic and family factors such as family income and the child's number of siblings. Model 2 is a linear regression that gauges parents' amount saved, conditional on having saved. The difference between White boys and girls again dissipates, but here we observe a gap between White boys and Black boys and girls. When we include controls-including a control for Black students' substantial family income disadvantage relative to White boys-Black students continue to face a savings disadvantage, equal to approximately $5,000 for both Black boys and Black girls . To summarize, then, after accounting for a comprehensive set of economic, family, and academic factors, parents of students in all four race-gender groups are equally likely to have put away at least some money for college-but even these extensive controls do not account for the disparities in the amount saved between race-gender groups, with race emerging as the main stratifying factor. --- Accounting for Predicted Probability of Enrollment These initial models are important for understanding how parental college savings is associated with race, gender, and other factors on average. But how are these processes further complicated by students' chances of attending college? Prior research has posited that parents save for college in accordance with their child's realistic chances of actually attending college, as determined by their ability to pay and the child's academic performance. Accordingly, we assess parental college savings for White boys, White girls, Black boys, and Black girls along those two dimensions. Figure 2 shows parents' chances of having saved anything for college, over the range of students' predicted probabilities of enrollment. 6 The top panels illustrate how students' predicted probability of enrolling in college, as determined by economic/family factors, is related to their parents' chances of having saved. The trendlines for White boys and girls show a clear positive relationship between chances of enrollment, based on family circumstances, and savings. As students' economic and family circumstances are more favorable, and their chances of enrollment increase in turn, their parents' chances of having saved also increase substantially. This is also the case for Black boys, although their positive slope is muted by comparison. Black girls have the flattest trend line: we observe no difference in the probability of having saved between Black girls with highest chances of college enrollment, versus those with the lowest chances of enrollment . This pattern suggests that Black girls experience null returns to their economic and family circumstances when it comes to having a college savings account, which is not the case for any of the other three race-gender groups. As a result, we observe clear differences in parents' chances of saving between Black girls and students in other race-gender groups who have equal economic probabilities of attending college. To give just one example, among those whose economic circumstances make them almost certain to attend college , Black girls have just over a .50 probability of having any money saved, compared to nearly .75 for White girls. We also observe racial differences among girls at both the top and bottom of the distribution. At the top of the distribution , parents of White girls are more likely to have saved. But at the bottom of the distribution, parents of . --- Girls family circumstances and college savings. Students with more favorable economic and family circumstances generally have higher balances in their college savings accounts, conditional on having savings. Yet, the amount saved differs substantially by race. Toward the top of the distribution, parents of White boys and girls have saved substantially more than their Black counterparts, with an especially large gap of about $24,000 between White boys and Black boys. At the bottom of the distribution, Black boys and girls both experience a savings advantage. Thus, among those with few economic resources, Black parents tend to make greater investments in their children's college education than White parents. The bottom panels show estimates over the range of students' probability of enrollment, as predicted by academic factors. As White boys and Black boys have stronger academic records, and their chances of college enrollment increase in turn, their parents tend to save more for college . At the same time, parents of White boys save significantly more than parents of Black boys. This pattern also generally holds for White girls in the right panel. Yet, this is clearly not the case for Black girls. In terms of the amount of parental college savings, the most academically successful Black girls are virtually no different than the least academically successful Black girls. As a result, White girls at the top of the distribution have more than double the college savings of equally qualified Black girls . 7 Why is it that Black students' chances of enrolling in college often have a null relationship with their parents' chances of saving or the amount saved? One possible explanation is that Black students with a high academic probability of college enrollment have relatively low 7 Supplementary analyses show that results are consistent when we use the natural log of income as the outcome; see Appendix C in the online supplement. college savings because they are disadvantaged in terms of economic and family factors. To investigate this dynamic, we compared the economic and family circumstances of students in different race-gender groups at various levels of predicted college enrollment. Results from this supplemental analysis are shown in Table 3. Cell sizes would normally be too small to produce reliable descriptive statistics for each race-gender group, and especially to conduct significance tests across groups. To navigate this issue, we used regressions to estimate predicted values for each of our economic/family predictors for students at different academic probabilities of attending college-i.e., academic probabilities of . 30, .70, and .95. 8 These regressions use the full sample of respondents to make estimates at the academic percentiles of interest, essentially producing estimates that are more stable than if we were to use data from only those students in a given probability band. 9 The results in Table 3 help explain why Black boys, and especially Black girls, tend to receive less college savings than White boys and girls with similar academic qualifications. In each of these panels, Black students experience more economic and family constraints than their White peers. Specifically, in each probability band, Black girls : are the most likely to be in the bottom quintile, and least likely to be in the top quintile of parental income; are the most likely to have parents with only a high school diploma, and least likely to have parents with advanced degrees; 8 These probabilities correspond to about the 5 th percentile, the 50 th percentile, and the 95 th percentile, but our conclusions were consistent regardless of the exact probabilities we used. 9 Specifically, we used each of the economic/family variables as the outcome and used the race-gender groups and an interaction between the race-gender groups and students' academic probability of enrolling in college as predictors. Estimates for the economic/family variables are generated by holding the academic probability at specified values . For a discussion of similar methods, see Bassok and colleagues and Reardon . are the least likely to have married parents; and are raised in households with the largest number of siblings. These constraints are perhaps most pronounced in the bottom panel, which shows estimates for students with a .95 academic probability of attending college. Substantively, one can think of these students as some of the most academically qualified 11 th graders in this nationally representative sample. Here we see that the most academically qualified Black students come from families that are much less well-off than comparable White students, and Black girls are again particularly disadvantaged-including relative to equally high-achieving Black boys. The modal White boy, White girl, and Black boy in this probability band comes from a family in the top income quintile. Meanwhile, the modal Black girl comes from a family in the third income quintile, which clearly demonstrates the exceptionality of high-achieving Black girls compared to their peers in other race-gender groups. Taken together, for Black students, academic credentials may only take them so far when it comes to their college savings accounts. Even when they are among the most highly qualified from an academic standpoint, Black students-and particularly Black girls-may have relatively little college savings because they have far fewer economic advantages, and face far more family constraints, than their White peers. --- How do Parents Anticipate Paying for College? As a final component of the analysis, we assessed how race, gender, and students' chances of attending college are associated with the funding sources parents plan to use to cover their children's college costs. As discussed earlier, we use data on six funding sources: parents' earnings/savings; student's earnings/savings; scholarships or grants; federal or state loans; private loans in the student's name; and private loans in the parents' names. These anticipated funding sources reflect financial opportunities and constraints across race-gender groups, as well as parents' broader approaches toward parental investment. Table 4 shows parents' anticipated funding sources stratified by students' economic/family probability of enrollment-in other words, how parents plan to pay for their children's college costs at three levels of economic advantage and constraint. 10 The top section shows predictions for parents who face considerable economic constraints. In general, these parents have similar plans for paying for higher education across race-gender groups. In one notable exception, parents of Black boys and Blacks girls are more likely than parents of White boys to anticipate using a parent's earnings or savings. This finding is consistent with our earlier observation that the most financially disadvantaged Black students tend to receive more college savings than their White counterparts. The bottom section of Table 4 shows parents' anticipated funding sources among the most economically advantaged families. Although these families are virtually guaranteed to send their children to college as dictated by their economic and family circumstances, we see distinct differences in funding sources across race-gender groups. Most notably, nearly all parents of White students expect to pay for at least part of college with their own earnings or savings-but this is not the case for parents of Black students . This pattern is consistent with our earlier results regarding lack of college savings among affluent Black parents. Notably, parents of Black students are more likely than parents of White boys to expect scholarships or grants . This pattern is suggestive of two potential causal mechanisms-either Black parents are hopeful that their children will receive scholarships to make up for their lack of 10 The underlying regressions for Table 4 are shown in Appendix D in the online supplement. Note: Logistic regressions; predicted probabilities reported. Models include control for type of college the respondent parent anticipates the child will attend in the fall . Sample sizes are: 3,833 ; 3,836 ; 3,833 ; 3,834 ; 3,831 ; 3,837 . * p < .05 for comparison of race/gender group to white boys; † p < .05 for comparison between boys and girls within race groups. More detailed p-values are included in the main text where applicable. savings; or Black parents have been less intentional about saving because they are enthusiastic about their children's academic performance and are optimistic they will receive scholarships. In addition, parents of Black boys are less likely than parents of White boys to expect students to contribute their own earnings or savings . Perhaps Black boys have few personal resources to draw on at the time of college enrollment, or their parents would prefer to pay for college through other sources that impose less of a personal burden. Finally, we find that compared to parents of White boys, parents of White girls , Black boys , and Black girls are more likely to anticipate use of government loans. Thus, among students from relatively affluent families, White boys may be least often affected by the burdens of educational debt. Table 5 shows parents' anticipated funding sources, this time stratified by the student's academic probability of enrollment. 11 The top section of the table shows anticipated funding sources for students with among the weakest academic credentials. Among parents of these less qualified students, most anticipated funding sources are comparable across race-gender groups, with the exception of scholarships. Compared to parents of White boys, parents of White girls, Black boys, and Black girls are more likely to indicate they will pay for at least part of college with a scholarship or grant. The bottom section of Table 5 shows parents' anticipated funding sources for students with the strongest academic credentials. Here we see clear Black-White differences in parents' plans for college funding and, in particular, distinct patterns of college funding for highlyqualified Black girls. Parents of Black girls are considerably less likely than others to anticipate paying for college with their own earnings or savings-with a predicted probability of only .54. The rest of the table gives some clues as to how parents of highly-qualified Black girls plan to make up for their lack of parental funding. Compared to parents of White boys, parents of Black girls are more likely to anticipate scholarships . We also find that parents of highly-qualified Black girls are more likely than parents of White boys to anticipate use of a private loan in the parent's name . This is a troubling pattern, considering that private loans tend to have much higher interest rates than government-backed 11 The underlying regressions for Table 5 are shown in Appendix E in the online supplement. loans, and cost much more over the life of repayment . Overall, then, parents of highly-qualified Black girls are in the unique situation of having little earnings or savings to contribute for college. As a consequence of their lack of savings, these parents may turn to high-cost loans-a situation that may contribute to their own household's economic insecurity, as well as threaten their ability to assist their daughters financially in later years. --- CONCLUSION By all accounts, paying for college is harder than it used to be. A growing body of research has demonstrated inequalities, particularly by race, in educational debt's impacts on long-run economic returns to college completion. Yet, less is known about parental college savings among recent cohorts of students, particularly using an intersectional framework. Drawing on theories of parental investment, as well as research that points to persistent race and gender inequalities in economic resources and educational attainment, this article has assessed how parental college savings differs across race-gender groups. We used models that accounted for students' chances of college enrollment, considered separately by economic/family factors and academic credentials, to parse out race and gender differences in savings across these spectrums. The analyses pointed to stark differences in parental college savings between White boys, White girls, Black boys, and Black girls, as well as differences in the funding sources parents anticipate using to supplement their savings. Perhaps the most striking patterns we find pertain to Black girls-and in particular, a distinct lack of parental college savings for Black girls with the strongest academic credentials. For White boys, White girls, and Black boys, we find a positive relationship between students' academic credentials and parental college savings. But for Black girls, parental college savings is virtually unresponsive to their academic qualifications. To investigate why this happens, we compared economic resources across race-gender groups for students with different academic profiles. These analyses suggest that highly-qualified Black students, and especially highlyqualified Black girls, come from families that are considerably less well-off than their White peers. Because most parents generally save in accordance with their ability to save, highly-qualified Black girls may end up with less savings by virtue of coming from relatively disadvantaged families. This finding is consistent with prior research showing that Black girls are particularly resilient when it comes to academics, as they tend to enroll in and complete college even in the face of challenging economic circumstances . We show that, as a potential consequences of Black girls over-indexing in terms of academic performance, Black girls may enroll in college with little parental savings to draw on-even if they have among the strongest academic credentials. This pattern underscores the idea that college funding is a mechanism through which higher education reproduces inequalities on account of race, gender, and class. Families of high-achieving Black girls are positioned to save relatively little, and to take on loans that are relatively high-risk, thus resulting in funding schemas that disadvantage Black girls and their families across generations. Although Black girls tend to over-index in terms of academic performance, our findings demonstrate that Black girls face continued challenges in achieving economic mobility through higher education. Other factors are likely to play a role in this story as well. Although we find clear economic differences between highly-qualified Black girls and those in other racegender groups, there may be other explanations for these distinct patterns of savings among parents of Black girls. This is not just a race effect, as we see key differences between parents of Black girls and boys; and this is not just a gender effect, as we see key differences between parents of Black girls and White girls. Rather, parental college savings is an intersectional issue at its core, and thus it requires intersectional explanations. It may be that parents of Black girls are more optimistic than other parents about their child's ability to receive a sizeable college scholarship-large enough to cover all or nearly all of their child's tuition and fees. We find that parents of highly-qualified Black girls and boys are equally likely to expect to pay for at least part of college with a grant or scholarship, but the size of the expected grant might differ . Future research also can assess the extent to which family configuration explains Black girls' savings disadvantage . All of this is to say that other factors are likely driving at least part of this lack of college savings among highachieving Black girls, and additional work is needed to shed light on this issue. Our data do, however, make clear the long-term economic implications for parents of highly-qualified Black girls. To counter the lack of earnings or savings earmarked for their children's college education, these parents are more likely than those in other race-gender groups to anticipate using a private loan in their name. Private loans tend to have higher interest rates and less forgiving repayment schedules than government-backed loans, and thus they are considered a risky financial tool. This may make parents of Black girls vulnerable to economic insecurity in the long run. Besides their parents, these patterns also have negative implications for the financial circumstances of Black girls themselves, as well as their families, should they choose to form them . If parents of highly-qualified Black girls are using their resources to service these private loans, then their children stand to benefit even less from any subsequent potential intergenerational wealth transfers or gifts. Of course, research consistently shows that, when attempting to make these types of transfers, Blacks start from a much smaller pool than otherwise economically similar Whites to begin with . For these reasons, the racially unequal economic constraints that prevent parents from saving for college may have economic implications that affect multiple generations. In addition, we find that among those with few economic resources, Black parents tend to make greater investments in their children's college education than White parents. This pattern holds for both boys and girls, and echoes research on racial differences in parental college savings using earlier cohorts of students. Prior studies show that Black parents invest just as much in college than White parents once background characteristics are controlled for , and our findings update this research by showing that this effect is concentrated among less advantaged families. At the top of the economic distribution, we find a clear savings advantage for Whites, likely driven by high-income Whites having greater average net worth than similarly high-income Blacks . Our estimates are likely conservative here, given that the HSLS captures savings accounts that are specifically earmarked for higher education, but high-income Whites tend to have additional resources that can be used for college if needed . Our findings also have implications for debates about the "match" between students' academic credentials and the characteristics of the college they attend. This debate often centers on high-ability Black students who are potential beneficiaries of race-based affirmative action for admission to selective colleges. One side of this debate argues that Black students are better off attending colleges where most students are at or below their level of academic ability, and that those who shoot too high are "mismatched" to their institutions and may have negative experiences and outcomes, such as low grades or dropout. The balance of scholarly evidence refutes this claim, demonstrating that Black students benefit from attending selective institutions, Avery 2012). Thus, while we consider parental college savings to be a reasonable proxy for these constructs, this measure is imperfect. Second, the HSLS does not include information on parental net worth. This is an important omission, not only because net worth differs so dramatically across Black and White families, but also because wealth has been shown to affect college attendance net of income . It is reasonable to assume that some aspects of wealth are captured in the dependent variable, as college savings accounts often include investments that are not classified as yearly income. But future research can incorporate data on other types of assets to understand further how race and gender shape college funding and exposure to its multigenerational implications. --- RESEARCH ETHICS The --- in terms of outcomes such as college completion and eventual earnings . Our results further inform this debate by calling attention to the interplay between institutional characteristics and intersectionally varying linkages between students' academic profiles and family economic circumstances. At a given level of high school academic successsuch as among high achievers who may have the option to attend a highly selective college-Black students, on average, come from much less affluent families than equally qualified White students. Thus, to the extent that elite colleges' institutional resources allow them to offer more financial aid and/or fewer loans , there may be multigenerational financial advantages for high-achieving Black students when they attend one of these elite colleges. Further, our intersectional lens has allowed us to demonstrate that highability Black girls, in particular, are the race-gender group that potentially stands to benefit most from institutional selectivity, to the extent selectivity is correlated with financial support. Although the data provide clear evidence of parental college savings differences across race-gender groups, we should also emphasize two main data limitations. First, as we have noted previously, parental college savings is an imperfect measure of both parental economic resources and parents' expectations for their children's college attendance. Some parents might save less than others in similar economic circumstances because they work for a university where their child will receive a tuition benefit. Others might dial down their savings because they expect their child to receive a merit-based scholarship, or they anticipate receiving financial aid because they believe their child will attend a prestigious college and they will receive a generous aid package (although this is probably not common, given research showing that the population of highly-qualified low-income students applying to selective colleges is quite small; Hoxby and

Although some prior studies have investigated race differences in parental college savings, none have taken an intersectional approach, and most of these studies were conducted with cohorts of students who pre-date key demographic changes among U.S. college-goers (such as the reversal of the gender gap in college completion). Drawing on theories of parental investment and data from the High School Longitudinal Study of 2009 (HSLS:09), we show that both race and gender are associated with whether parents save for college, as well as how much they save. Both Black boys and Black girls experience savings disadvantages relative to their White peers. However, particularly striking disparities face Black girls: Black girls with the strongest academic credentials receive savings equivalent to those with the weakest academic credentials. Results suggest that this in due, at least in part, to the fact that high-achieving Black girls tend to come from families that are much less well-off than high achievers in other race-gender groups. As a result, parents of Black girls frequently rely on funding sources other than their own earnings or savings to pay for their children's college. These include private loans that may pose financial challenges for Black girls and their families across generations, thus deepening inequalities along the lines of gender, race, and class. These findings demonstrate the power of taking an intersectional approach to the study of higher education in general and college funding in particular.

Introduction H IV and intimate partner violence are sig- nificant intersecting threats to women's health, as reflected by President Obama's creation in 2012 of an interagency Federal Working Group to explore the intersection of HIV/ AIDS, violence against women and girls, and gender-related health disparities. 1 Women in violent relationships have few feasible risk reduction options because traditional prevention methods, including female-controlled methods , are largely dependent on a partner's cooperation. Oral pre-exposure prophylaxis , approved by the FDA in 2012, holds considerable promise to overcome many of the barriers of traditional HIV prevention methods for women experiencing IPV. Current federal guidelines recommend that PrEP be considered for individuals who are both HIV negative and at high risk of contracting HIV, including heterosexual women in serodiscordant relationships, women engaging in condomless sex with a partner of unknown status who is at high risk of HIV infection , injection drug users, and sex workers. 2 There are, however, no guidelines for PrEP provision to women in violent relationships. The purpose of this narrative review is to explore potential benefits and drawbacks of PrEP use that are specific to women in the United States experiencing IPV in their heterosexual relationships. We begin by reviewing the intersection of IPV and HIV risk, as well as obstacles to the use of typical female-controlled HIV risk reduction strategies for women in violent relationships. We discuss possible benefits of PrEP use in this population, including its potential to increase women's control over HIV prevention. We then consider barriers to oral PrEP uptake and adherence among women experiencing IPV and discuss how gendered power relations might interfere with the effective use of PrEP. We conclude with recommendations for future research, public health interventions, and clinical practice. --- HIV and IPV: Intersecting Public Health Epidemics HIV continues to be an important health risk for women living in the United States, particularly women of color. In 2014, women comprised 19% of new HIV infections, the vast majority of which were acquired through heterosexual sex . 3 By the end of 2013, 24% of those living with HIV in the United States were women. 3 Black women are disproportionately affected by HIV; they account for over 60% of women living with HIV in the United States 3 and are newly diagnosed at rates *20 and 5 times higher than white or Hispanic women, respectively. 4 Finally, HIV is a leading cause of death for black women, ages 20-54, in the United States. 5 IPV also poses a significant risk to women living in the United States. The 2010 National Intimate Partner and Sexual Violence Survey found that *36% of women living in the United States had experienced physical violence, rape, or stalking by an intimate partner in their lifetimes. 6 Other forms of abuse, such as emotional abuse and coercive control , often accompany physical and sexual violence. 7 The NISVS found that *40% of women had experienced verbal aggression from an intimate partner during their lifetime, while 41% had experienced some form of coercive control by an intimate partner. 6 IPV has been associated with increased risk of sexually transmitted infections , including HIV, 8,9 and the rate of IPV among HIV-positive women in the United States is double that of the general population. 10 Abuse may directly increase HIV risk through forced intercourse with an HIVpositive partner, and physical trauma to the genitals that may occur during sexual partner violence can directly facilitate HIV infection. 11 Women in violent relationships are also less likely than nonabused women to refuse sex or use condoms during intercourse. [12][13][14] Women's reluctance to use condoms may stem from fear of physical or sexual violence. 12 In addition, the psychological sequelae of partner violence as well as substance abuse, which is associated with IPV victimization, have been shown to increase sexual risk taking and thus contribute to HIV infection. 15,16 Women's risks are compounded by the fact that perpetrators of IPV are themselves at higher risk of HIV infection, being more likely than nonperpetrators to engage in HIV risk behaviors, such as partner concurrency and transactional sex, [17][18][19] and to be diagnosed with a STI/HIV. 18,20 Violent partners are also more likely to refuse condom use. 17 Gendered power inequalities place women at a disadvantage in regard to safer sex negotiation and refusal of unwanted sexual activity and thus contribute to women's increased vulnerability to the intersecting harms of IPV and HIV. Wingood and DiClemente, adapting Connell's theory of gender and power, 21 suggest that the sexual division of labor, gendered power inequalities, and social norms regarding gender, sexuality, and HIV prevention increase women's HIV risk. 22 For example, the sexual division of labor results in women taking on a majority of childrearing and domestic tasks, which often leads to increased financial dependence on male partners. Furthermore, gendered social scripts regarding male control of sexual interactions and female sexual passivity can contribute to a reluctance to protect oneself against HIV as efforts to do so require a degree of sexual autonomy and agency. [23][24][25] Men may view violations of these sexual and relationship norms as a threat to their masculinity and may respond with violence. 25 Studies also suggest that women may view male sexual and relationship dominance as typical or acceptable aspects of heterosexual relationships. 23,24 While experiences of gendered power inequalities are not limited to women in violent relationships, violence may render women more vulnerable to these inequalities as well as increase the harmful consequences resulting from a breach of gendered sexual norms. --- Disadvantages of Existing Female-Controlled HIV Prevention Methods In principle, female-controlled risk reduction methods may facilitate safer sex among women who lack power in their sexual relationships. [26][27][28] Uptake and acceptability of such methods, however, remain low, 29 and partner violence may make it difficult for women to utilize female-controlled methods in practice. For example, the use of female condoms requires partner consent because female condoms are easily detectable. Female condoms may not be feasible or acceptable in the face of partner antagonism toward, or disinterest in, this method of HIV prevention. 30,31 Other existing female-controlled methods have limited efficacy in regard to HIV prevention. 32,33 Thus, there is a need to identify acceptable, feasible, and effective female-controlled HIV risk reduction methods for women in violent relationships as well as address potential barriers to uptake and adherence of these methods. PrEP: An Effective HIV Risk Reduction Method for Women --- Efficacy PrEP use has been shown to significantly reduce HIV acquisition rates among men who have sex with men if taken consistently, 34 although randomized trials of PrEP involving women have demonstrated mixed results. Two clinical trials, Partners PrEP [35][36][37] and the Bangkok Tenofovir Study, 38 demonstrated a 66-79% reduction in HIV acquisition among women. Overall, the TDF2 study found a 62% reduction in HIV acquisition among heterosexuals, although the authors were not able to draw separate conclusions for men and women due to low statistical power. 39 In all trials, efficacy was positively associated with medication adherence, increasing to ‡85% for those who had detectable drug levels in blood samples. 40 Two studies of oral PrEP among women living in Sub-Saharan Africa, Fem-PREP 41 and the oral tenofovir arm of VOICE, 42 however, did not demonstrate efficacy due to low adherence and were closed for futility. 40 Adherence may be especially important for women because more consistent dosing is required to achieve effective drug levels in vaginal tissue compared with rectal tissue. 40 Thus, there is evidence that PrEP reduces the risk of HIV infection among women when adherence is high, but additional research is needed to identify and address barriers to adherence. --- Safety PrEP has been shown to be generally safe, although there are small, but significant, risks of decreased kidney function as well as reports of bone mineral density loss. 43 Loss of bone mineral density may be more significant among women than men, particularly women taking long-acting contraceptives, although more research in this area is needed. 44 Regarding reproductive health, PrEP and hormonal contraception have not been shown to interfere with each other. 43 Although there is little research on the effects of PrEP on a fetus if a woman takes it while pregnant, data from the Partners PrEP and VOICE trials indicated no significant differences in pregnancy loss or adverse outcomes in infants in women taking PrEP compared with women taking a placebo. 43 Nonetheless, the Centers for Disease Control and Prevention recommend that women take a pregnancy test before initiating PrEP and women who are pregnant consult with their doctor about potential risks. Thus, there appear to be few safety concerns specific to women taking PrEP, although it is yet unknown as to whether women who experience partner violence have specific contraindications to PrEP use . --- Acceptability Although PrEP uptake among women living in the United States has been slow, 45 evidence suggests that PrEP is at least hypothetically acceptable among women, including women experiencing IPV. [46][47][48] A recent focus group study of women in six US cities found that although almost none of the participants had heard of PrEP before the study took place, many said they would use PrEP if available. 46 In a study assessing attitudes toward PrEP uptake and adherence, young adult women who experienced IPV reported greater willingness to take PrEP than those who had not. Furthermore, younger women who had experienced IPV were less embarrassed to ask healthcare providers for PrEP than younger women who had not experienced IPV. 48 These findings indicate that women in violent relationships may consider PrEP a feasible option for HIV prevention. --- Advantages of PrEP for Women in Violent Relationships Although alternative PrEP formulations are currently under development, these are not yet available in the United States. Therefore, oral PrEP is the only biomedical, femalecontrolled HIV prevention method currently available to women in violent relationships living in the United States. While there are a number of benefits to PrEP use for all women , PrEP has several critical advantages over other female-controlled HIV prevention methods for women in violent relationships. These include the potential for covert or autonomous use, coital independence, dual protection against sexual and injection HIV risk, and facilitated connections to social services. --- Covert or autonomous use One advantage of PrEP is that it provides protection from HIV that is not partner dependent; that is, women can use PrEP without their partners' active involvement, knowledge, or consent. Thus, PrEP protects against HIV even when a partner refuses to use a condom. Furthermore, women experiencing IPV relationships often do not request condom use due to fear of violence; covert use obviates this difficulty. In regard to covert PrEP use, oral PrEP has an advantage over alternative PrEP formulations such as topical gels. Women may be able to use oral PrEP more discreetly than topical gels as partners may notice the extra lubrication that gels provide. [49][50][51] Although little research on covert use of vaginal microbicides has been conducted in the United States, one focus group study of black women found that women were concerned that their partner would be able to tell when they had used vaginal gel due to increased lubrication. 47 As in the case with the female condom, preventive measures that produce immediate physical indicators of their use may make covert usage difficult for women in violent relationships; thus, oral PrEP may be preferable to the use of microbicide gel in this population. --- Coital independence A second advantage of PrEP is that it does not need to be taken at the time of the sexual encounter , which may be important for women in violent relationships who may not have control over when or how sexual activity takes place. Taking PrEP independent of sexual activity, therefore, may allow for consistent dosing and improved medication adherence. Furthermore, coital independence may make covert use easier because women can take it on their own schedule and in a location that is inaccessible to an abusive partner. --- Dual protection against sexual and injection risk PrEP is unique in terms of HIV prevention because it protects against HIV transmitted through both sexual contact and injection drug use; other HIV prevention options protect women only from sexually transmitted HIV or from HIV transmitted through shared injection equipment . Violence , HIV/AIDS, and substance use frequently co-occur [i.e., SAVA syndemic]. 15 When the co-occurring substance use involves injection drug use, women may additionally be at risk of HIV through shared needles. Studies have demonstrated that women experiencing partner violence are more likely to inject drugs than women who do not experience partner violence, 14 and women who inject drugs are more likely to engage in sex with partners who inject drugs. 14,52,53 IPV perpetration by male injection drug users is common. 54,55 Furthermore, abusive partners may control women's access to drugs and injection equipment. 56,57 Women's HIV risk may increase if sexual compliance is required in exchange for drug access. Beyond sexual risk, however, women experiencing IPV may incur additional injection-related HIV risk. Even in the absence of IPV, gendered power relationships help to structure women's HIV risk from injection drug use. Women who share needles are most likely to do so with intimate others such as sexual partners [58][59][60][61] as well as those who they inject or who inject them, 59 and women are frequently injected by their sexual partners. 62,63 When women share syringes with their partners, the male partner is generally the one who injects first. 56 Scholars have suggested that partner violence may increase the likelihood of injecting with a syringe that had been previously used by someone else. 64 Although further research is needed to assess how widespread such practices are, syringe sharing is another potential source of HIV risk for women experiencing IPV. PrEP may protect against such risks in ways that other HIV risk reduction methods cannot. --- Facilitated connection to social services A fourth advantage of PrEP use for women in violent relationships is the opportunity for connection to social services, particularly those relating to partner violence. Recommendations for PrEP include quarterly medical appointments for HIV testing and monitoring for health problems and side effects. 2 Although women in violent relationships could face barriers to attending such frequent appointments , PrEP providers may be well positioned to screen for and identify IPV among their patients, as well as assist them in mitigating the harms associated with violent relationships. Given the aforementioned co-occurrence of violence, HIV/AIDS, and substance use, such providers can also make connections to additional social services . The capacity to screen, identify, and provide service referrals to women in violent relationships might depend on clinic type ; nevertheless, the PrEP consultation could provide a unique opportunity for outreach and assistance for women experiencing IPV. --- Barriers to PrEP Use Among Women in Violent Relationships Although PrEP may reduce the risk of HIV infection for women in violent relationships and has several advantages over other currently available female-controlled HIV risk reduction methods, women in violent relationships still face barriers to PrEP uptake and adherence, including partner resistance, cost, gendered norms regarding sexuality, and stigma. These barriers need to be addressed for PrEP to become a useful HIV prevention option for women in violent relationships. --- Partner resistance If men become aware of their partner's use of PrEP, they may discourage its use or even react with physical violence. As with other HIV risk reduction methods, male partners may oppose PrEP use because they think it suggests infidelity, dishonesty, or a casual attitude toward one's partner, 51,[65][66][67][68] which may exacerbate violence for women in abusive relationships. Jealousy and anxiety about potential infidelity are precursors to IPV and have been associated with IPV-related injuries among women. 69 Furthermore, the use of femalecontrolled HIV prevention methods such as PrEP may indicate a woman's control over her own body , which may in turn incur a violent backlash. 70 --- Difficulties with covert use Women who fear partner resistance or violence in response to PrEP may value the possibility of covert use. Little is known, however, about whether or not women in violent relationships would choose to use PrEP covertly in practice. Although many women express favorable attitudes toward other covert HIV prevention methods, [71][72][73] these attitudes do not guarantee that women will keep their use of such methods secret from their partners. Little research has been conducted on this topic in the United States. In a qualitative study of microbicides for HIV prevention, the majority of men and women reported that a woman should always tell her partner about microbicide use, although women were less likely to endorse this view as the seriousness of the relationship declined. Despite voicing a number of barriers to revealing microbicide use to a casual partner, including the fear of violence, many women reported that they would tell partners they were using microbicides even in casual relationships. 74 Internationally, a study in Uganda found that although most women reported that covert use was a major advantage of female-controlled methods, less than 40% covertly used a female-controlled product after 1 week and only 22% used the products without their partner's knowledge after 10 weeks. 71 Another study of women living in South Africa, Tanzania, Uganda, and Zambia found that a major reason for disclosure of microbicide gel use was the fear of violence if covert use was discovered. 50 Covert use of oral PrEP may likewise not be practical due to the effort required to prevent detection, and continued stress incurred by fear of detection could make covert PrEP use undesirable. Concealing PrEP storage as well as taking a daily pill unobserved may be difficult. Arranging to take PrEP away from home or storing the medication at the home of a friend or family member may prevent partner discovery, but may not be practical, particularly for women whose partners restrict or monitor their movements outside the home. Furthermore, although studies have found that the short-term side effects of PrEP tend to be relatively mild and infrequent, 43 noticeable side effects could raise a partner's suspicions. Finally, it is recommended that individuals who are taking PrEP visit a medical provider every 3 months to be retested for HIV and to be monitored for potential health problems and side effects associated with PrEP. 2 Women in abusive relationships who are restricted in their movements may find such frequent follow-up difficult, 75 especially with covert use. Several studies have shown that women experiencing IPV may in fact receive more preventive services, particularly those related to sexual health than those not experiencing IPV. [76][77][78] Given the relatively frequent follow-up required for PrEP, however, it is unclear as to whether these findings are applicable in this context. --- Cost Financial barriers may limit PrEP use among women experiencing IPV. In many abusive relationships, the male partner maintains control over household finances and/or prevents women's economic independence by limiting their ability to gain employment or education. 79 This may make it difficult for women to pay for PrEP, which is estimated to cost between $8000 and $14,000 per year without health insurance. 80 Many insurance programs, including Medicaid, cover some or all of the cost of PrEP; however, women who are covered under their partners' insurance plan may not be able to utilize insurance coverage if they wish to use PrEP covertly . 81 Although medication assistance programs may relieve some of the cost of PrEP for economically disadvantaged women or those without insurance, these resources may not be available for women whose household income is above the maximum allowable qualifying amount. --- Gendered norms regarding sexuality Social norms regarding gender and sexuality may affect the likelihood of PrEP uptake and adherence among women in violent relationships. For example, PrEP use is stigmatized because people associate its use with having multiple partners. 82,83 Gendered norms regarding female sexuality, such as a sexual double standard that dictates fidelity or chastity for women while encouraging male promiscuity, 23 may heighten this stigma among heterosexual women. The consequences of PrEP-associated stigma may be greater for women in violent relationships as it may increase partner violence in reaction to discovery of PrEP use. In addition, PrEP stigma may lead to negative reactions from friends and family as the sexual double standard also suggests that women who adhere to this norm are more worthy of respect and protection compared with those who do not. 23 The potential loss of external social supports due to PrEP use may be particularly problematic for women experiencing IPV because partners who are violent often attempt to isolate their partners from such supports. [84][85][86] --- Discussion Women in violent relationships, who are at increased risk of HIV infection, are in need of female-controlled HIV prevention methods. PrEP may be a useful female-controlled risk reduction option in this population. Despite the benefits of PrEP, women in violent relationships face barriers to PrEP uptake and adherence, including partner resistance, difficulties with covert use, cost, and gendered norms regarding sexuality. Many of these barriers are similar to barriers associated with other female-controlled risk reduction methods, illustrating women's difficulties in becoming empowered to take control of their sexual health. Nevertheless, PrEP has several advantages for women experiencing IPV, including its ability to be used without partner involvement or consent, coital independence, protection against multiple routes of HIV transmission, and facilitated connections with social services. --- Future research PrEP has the potential to transform the risk reduction landscape for women in violent relationships. However, additional research is necessary before PrEP's potential for women in violent relationships can be realized. First, research is needed to explore women's perspectives on and experiences with PrEP to identify potential additional barriers to PrEP uptake and adherence and to describe methods to overcome barriers to PrEP usage among women in violent relationships. Future research is also needed to assess the efficacy, acceptability, and long-term safety of alternative means of PrEP delivery that would facilitate ease of use for women in violent relationships. Some of the barriers identified in this article, particularly those associated with covert PrEP use, may be overcome with alternative formulations, such as long-acting injectables . --- Implications for public health interventions Intervention research may identify promising behavioral interventions that focus on the reduction of IPV and HIV incidence, incorporating PrEP as a vital component. Although biomedical interventions may address women's immediate prevention needs, they do not address social constructions of gender that increase women's HIV risk; 87 thus, behavioral interventions might also encourage critical reflection on gender and sexual norms, gendered power inequalities, and the ways that these contribute to IPV and HIV risk. Integrating structural components into behavioral interventions that include PrEP use may increase instrumental and affective support for women's choices, which could reduce barriers to care and increase PrEP uptake and adherence. For example, efforts toward making PrEP more financially ac-cessible for women experiencing IPV might include health insurance policies that maximize privacy for dependents, ensuring that women experiencing IPV can confidentially access healthcare. Furthermore, medication assistance programs should be available to women who may not be able to access insurance due to fears of violence. Ideally, integrated biomedical, behavioral, and structural interventions would not only reduce the risk of acquiring HIV but would also facilitate empowerment on multiple levels, potentially reducing women's vulnerability to violence and helping them to lead healthier and more fulfilling lives. --- Implications for clinical practice The potential use of PrEP for women in violent relationships raises several important considerations for clinical practice. Provider-initiated conversations regarding PrEP may be warranted with women in abusive relationships who are not able to protect themselves through other means , particularly if they fall into a highrisk category. Before this can take place, however, providers must be able to routinely screen for IPV as part of HIV prevention screening. Routine screening for IPV can be difficult in the absence of guidelines that allow providers to identify IPV and assess its relationship to a woman's risk of acquiring HIV. Even where guidelines are in place, however, provider adherence to those guidelines may be challenging. For example, in a survey of providers at HIV counseling and testing sites in New York State, where IPV screening of individuals testing positive for HIV was mandated in 2001, screening was unstandardized and sporadic, despite providers' awareness of screening requirements. 88 In addition to absent or poorly implemented guidelines for providers, barriers to IPV screening can include overburdened staff, lack of private screening space, lack of reimbursement for services, and lack of adequate staff training. 89,90 There is a strong need to develop clinical protocols and provider education regarding PrEP and the intersection of HIV and IPV, as well as clinic policies that enable IPV screening provision during HIV counseling and testing. --- Limitations The purpose of this article was to discuss the potential utility of PrEP to reduce HIV risk for women in violent relationships. We note several caveats to our work. First, this article is not a systematic review of PrEP barriers and use among women in violent relationships; therefore, there may be additional studies that shed light on potential barriers and benefits of PrEP use among women experiencing IPV. Second, this article exclusively focused on women experiencing IPV. MSM in violent relationships may also benefit from PrEP use. However, MSM may face different barriers to PrEP use than heterosexual women ; 91 therefore, we believe a separate discussion of PrEP for MSM in violent relationships is warranted. Finally, our review was limited, in that there is little available evidence specific to the intersection of IPV and PrEP. While we drew on evidence related to other female-controlled methods to speculate on issues that might be related to feasibility and acceptability of PrEP use among women in violent relationships, these might not be directly comparable. Furthermore, little research has been conducted regarding partner resistance and covert use of femalecontrolled HIV prevention methods among women living in high-income countries . Although we drew on evidence from the global South to suggest potential difficulties related to these issues, women in these countries may possess different levels of social and political agencies, making comparisons inadvisable. We hope, however, that this review provides a useful starting point for considering PrEP use in this vulnerable population. --- Conclusions Women who experience IPV are at increased risk of acquiring HIV. 8,9 Female-controlled risk reduction methods, although initially hailed as a means of sexual empowerment for women with limited HIV risk reduction options, are problematic in regard to feasibility, effectiveness, and acceptability. Although PrEP has advantages over other female-controlled risk reduction methods for women in violent relationships, factors that increase abused women's risk for HIV such as gendered power inequalities are also impediments to the adoption of PrEP. To realize its potential for women in violent relationships, it will be necessary to incorporate PrEP into behavioral and structural interventions that encourage uptake, facilitate adherence, ensure women's safety, and challenge existing gender norms. Such comprehensive approaches will be vital to reducing HIV risk among women in violent relationships. --- Author Disclosure Statement No competing financial interests exist.

HIV and intimate partner violence (IPV) are significant intersecting threats to women's health. Women in violent relationships have few feasible HIV risk reduction options as traditional prevention methods are largely dependent on a partner's cooperation. The purpose of this review is to explore potential benefits and drawbacks of pre-exposure prophylaxis (PrEP) use among women in the United States experiencing IPV. Advantages of PrEP use in this population include the potential for covert or autonomous use, coital independence, dual protection against sexual and injection risk, and facilitated connections to social services. A number of barriers, however, may interfere with the effective use of PrEP, including partner resistance, cost, frequent medical visits, gendered norms regarding sexuality, and stigma. To realize its potential for women in violent relationships, it will be necessary to incorporate PrEP into behavioral and structural interventions that encourage uptake, facilitate adherence, ensure women's safety, and challenge existing gender norms.

Introduction --- Background Health information-seeking behavior is a complex construct that refers to the ways in which individuals seek information about health, illnesses, and health choices [1]. Armed with more knowledge, patients can participate more in their health care management, which has been shown to improve the effectiveness and efficiency of health care services and clinical outcomes [2,3]. Traditionally, health information is primarily communicated directly by health care providers to patients. Over time, information dissemination has transitioned from solely patient-provider interactions to obtaining information through Google searches, web-based communities, and one's social groups [4]. The predictors of HISB can be both contextual and personal, such as the environment, sociodemographic variables, or internal beliefs [5]. The advent of technologies including the internet, smartphones, and social media has prompted a drastic change in how people seek and access health information. Understanding how people seek health information in the digital age is a critical step in developing optimal health information delivery. While digital health information provides a new landscape for HISB, clinical providers remain one of the most credible sources of health information, especially when it concerns major illnesses [6,7]. This is true irrespective of age or sex [6,7]. The relationship between the patient and provider is mediated by trust, which could be influenced by a patient's past experiences with their physicians and their perception of quality of care [8]. In addition, those with health insurance are more likely to communicate in-person with health care providers than those who are uninsured; one cause may be the inability to afford visits owing to high out-of-pocket expenses [9]. While clinical providers remain at the forefront of trustworthiness, the internet has emerged as the most frequently used source of health information [8]. Younger people, those with higher education, those with health insurance, being female, and people of color are more likely to use the internet to obtain health information than older people, those with lower education, the uninsured, being male, and White people [9,10]. Ease of access, anonymity, and busy schedules may be motivating factors to seek health information on the internet [10]. Health information from the internet also functions to supplement or cross-reference health information obtained elsewhere, such as from providers, especially in older adults as compared with younger adults [11]. Individuals also rely on the internet to stay abreast of new information in real time, with social media being one of the primary sources to stay informed in this manner. Social media use is most prevalent among millennials and Gen Z as a conduit of social support, communication, and obtaining and sharing all kinds of information, including health information [12,13]. The demographics of users on social media are similar to other web-based HISBs, in that being female, younger people, having higher levels of education, and people of color are using social media more than being male, older people, having lower levels of education, and White people [12,13]. In addition, social media's use of images, videos, and infographics provides information in a comprehensible and visually appealing manner [12]. Instagram, Snapchat, Facebook, and YouTube are popular platforms for seeking health information [12]. --- Health Information Seeking While the younger generations are attuned to seeking health information on the web, the older generation maintains some habit of obtaining health information through traditionally printed materials such as books, newspapers, and magazines [13,14]. People who are older, have lower socioeconomic status, and have low digital literacy may rely on traditional media for health information [14]. Some studies show that non-English speakers were found to favor printed materials, which may be due to their availability in multiple languages [15]. This can pose a problem as health care providers are transitioning to web-based systems to disperse health information, rendering print sources as an antiquated form of health information dissemination [16]. Furthermore, research also shows that individuals with acute and episodic illnesses may also actively seek health information from friends and family [17]. However, when requiring information that is more specialized, such as with serious conditions such as cancer, stroke, and heart disease, friends and family are less frequently consulted [18]. Studies have shown mixed results with friends and family as both a frequent and infrequent source of health information [17,19]. Although friends and family may influence decision-making and provide social support, their role in HISB remains inconsistent. The numerous methods of acquiring health information have also led to an increase in the breadth of information available. Both accurate and inaccurate information coexist, and there is no overarching regulation to ensure the validity or reliability of information. A study assessing the validity of the search terms "vaccine safety" and "vaccine danger" found that 55% of search results contained inaccurate information within the first 2 pages [19]. Another study on the accuracy of reproductive health information on the internet revealed that it took an average of 4 searches on a search engine to find relevant topics within the mass of media available on the web, indicating an inefficiency in finding health information [20]. The wealth of social media platforms has only exacerbated this inefficiency. Although social media is a powerful medium for health information, individuals are now faced with information overload, uncertainty about the validity of their findings, misinformation, disinformation, and often conflicting information [21]. In this manner, information overload can cause stress and confusion for those experiencing it and can reduce their accuracy in health-related decision-making [21]. In the context of the COVID-19 pandemic, these stressors in HISB have been exacerbated by an onslaught of new and ever-evolving information from multiple scientific and nonscientific sources. The global scale and frequent evolution of COVID-19 has led to an infodemic or an overabundance of information [22]. The breadth and spread of misinformation within this context can sometimes lead to dangerous health consequences as misinformation is circulated and absorbed at a faster rate than accurate information [22], changing both people's understanding of COVID-19 as well as their potentially risky behaviors [23]. A lack of understanding of information related to COVID-19 has been associated with numerous negative health outcomes, including poor mental health, unwillingness to be vaccinated, and discontinuation of healthy preventive behaviors [24]. Although digital media often becomes the primary source of information during global health crises, the availability of many platforms and people's differential access and abilities in using these media are important factors in developing successful communication strategies to mitigate the risk of misinformation [25]. Digital health equity, including access to digital health information and language barriers, should also be considered when analyzing HISB [26]. Vulnerable populations that may not know how to access this information may require special attention and communication [25,26], as challenges associated with an individual's low health literacy and structural inequities can be exacerbated [27]. The proliferation and communication of health information during the pandemic has demonstrated the importance of the concept of HL by Nutbeam [28] as an important aspect in successfully combating information overload and correctly using health information [29]. --- Health Literacy and Health Information-Seeking Behaviors The concept of HL has broadened over time, from a definition of understanding words and numbers in a medical context to the communication, understanding, and use of health knowledge in an interconnected manner [30]. Researchers agree that people should possess several competencies to find, understand, and use health information, including verbal, oral, decision-making, and numeracy skills [28]. Nutbeam [28] categorizes HL into 3 contexts: functional, interactive, and critical. Functional literacy is the ability to read and write, interactive literacy involves the application of health information to everyday circumstances, and critical literacy skills allow for the use of this information to exert control over life events [31]. Nutbeam [28] affirms the importance of distinguishing between these types of literacy and their practical applications. This ternary model of HL is used in several HL studies to map the development of HL competencies beyond the accumulation of basic health knowledge. This model has been used to develop competencies in a wide range of HL studies, including nutrition, patient decision-making, and children's HL practices [32][33][34]. Chin et al [35] promote a model of HL that encompasses processing capacity , general knowledge , and specific health knowledge. This model, while structured differently than the model by Nutbeam [28], also emphasizes how these contexts are central to the overall accumulation of HL. Manganello [36] has expanded upon the model by Nutbeam [28] to include media literacy, which is defined as the ability to critically evaluate media messages. Zarcadoolas et al [37] also affirmed the importance of multilevel domains in understanding HL. While their model includes the constructs of fundamental literacy, civic literacy, science literacy, and cultural literacy, they posit that developing the public's HL needs to come from a multifaceted perspective [37]. With the rapid development of digital media, eHealth literacy has emerged as the use of information and communication technology to improve access to health care and health information [38]. eHealth literacy expands upon the traditional concept of HL and is associated with similar variables, such as age, education, income, culture, and experience using digital media [39]. Several studies and reviews have found that there is great potential for eHealth and eHealth tools as a manner of patient care and communication [38,[40][41][42]. However, several challenges hinder its efficiency, including the type of technology used, the social environment, its evolving definition and measurements, and a lack of theoretical grounding in developing interventions [40]. In addition, the concept of eHealth literacy is significantly associated with an individual's level of overall HL, with higher overall HL positively correlated with greater eHealth literacy [38]. As such, while eHealth literacy is a topical and dynamic field, it is important to first evaluate the overall HL in a population as an antecedent to eHealth literacy. The Health Literacy Questionnaire measures multidimensional, psychometric aspects of HL. By more than simply measuring whether an individual can read and write, the HLQ measures people's lived experiences of HL using self-reported experiences [43]. The HLQ comprises 9 scales that report patient-centered outcomes so that practitioners may be able to improve their interventions [43]. Studies in different samples from different populations have shown the HLQ to be an appropriate and strong measure of HL from a patient perspective [44][45][46], demonstrating strong internal consistency. Furthermore, the HLQ has been proven to allow for clinicians to better understand a patient's HL from their perspective and enable better communication and engagement between the patient and provider, leading to better health outcomes [46]. In addition, the HLQ scales can be organized into 3 categories in the Nutbeam model of HL [43]. Categorizing the HLQ scales into organizational schema in the Nutbeam model highlights how interventions for a specific domain under a scale can influence a broader concept of HL. Of great importance in how people obtain and use information is how organizations provide health information. Organizational HL plays an important role in information acquisition. OHL is the extent to which an organization's provision of health information is at a level where individuals can read, understand, and use it to make decisions about their health [47]. Successful OHL practices can lead to increased perceived quality and satisfaction of care for patients, ultimately leading to better clinical health outcomes [47,48]. Several guidelines provide evidence-based recommendations for OHL. Many interventions attempt to measure and develop individual HL, but it is of equal or greater significance that organizations include and measure HL in their overall planning for quality of care [49]. Lower levels of HL may deter patient participation in care and can worsen the relationship between the patient and provider [48]. The ultimate purpose of this patient-centered approach is to support patients with their navigation of the health care system and access to, understanding of, and use of health information. HL and HISB are inextricably linked, as the ability to seek, use, and comprehend health information requires a certain level of HL. In this way, adequate HL is a precursor to positive HISB [50]. Although significant correlations have been found between higher levels of HL and increased HISB, studies suggest that the link between HISB and HL is moderated by other factors, such as social networks, socioeconomic factors, and motivation to seek information [51]. Knowledge transfer within families and communities, social capital, and social engagement in the community contribute to an individual's level of both HL and HISB [40]. Age and sex are well-known factors that affect HL and HISB. Younger people and being female tend to have higher levels of HL, and their HISB differs significantly from those of older people and being male, respectively [13,16]. Being female and younger people are likely to find information more easily as compared with being male and older people [52]. HL has also been shown to decline with age and can lead to negative health outcomes, including increased mortality [53], although being female was associated with higher HL than being male in older age [40]. Individuals with higher levels of education are more likely to seek health information from a variety of sources [18] whereas those with lower levels of HL are less likely to do so [18]. In addition, those with lower levels of HL are more likely to need multiple sources of health information to be able to digest health knowledge and apply it [54]. Some studies show that individual characteristics, such as lower levels of income and lack of access to care associated with low HL are generally concentrated in rural areas, whereas those with higher levels of HL tend to reside in more urban areas [52]. However, these differences between urban and rural HL levels tend to disappear once factors such as age, sex, education, and income are accounted for [55]. As people in urban areas can also have low levels of HL, social and financial capital may be more strongly associated with HISB than HL itself [56]. Possible risk factors that may contribute to differences in urban and rural HL levels could be lack of employment, male sex, and language [57]. However, no single factor has been identified as significantly correlated with HL, and the differences between urban and rural levels of HL remain misunderstood. Significant associations have been found between urbanicity and HL and subsequent health outcomes, as those with higher levels of HL in urban areas are more likely to adopt healthy lifestyles [58]. Those characteristics of urbanicity associated with lower levels of HL are also correlated with HISB [59]. Urbanicity is also found to interact with HL to predict HISB. Chen et al [59] found that among rural residents, limited HL was associated with lower odds of access to health information, while among urban residents, HL was not associated with access to health information. --- Study Context Health disparities are exacerbated by macrosocial and microsocial factors, such as lack of health care access, low reading skills, health care costs, and geography. People living in the rural southern United States have higher rates of morbidity and mortality compared with their urban counterparts and those in other rural areas, with people of color experiencing higher rates of death and disease as compared with their White counterparts [60]. Most of these states have low rates of health care insurance, even with the expansion of Medicaid under the Affordable Care Act, leading to poorer health outcomes. In states that have chosen not to expand Medicaid, Texas, Georgia, and Florida account for half of the uninsured population [61]. Our study focused on a sample in Georgia, which ranks poorly for a variety of factors that influence HISB, including socioeconomic factors, health behaviors, and chronic disease [62]. Low-income and ethnic minorities are more likely to have poorer health outcomes such as heart conditions, cancer, stroke, and obesity than their White counterparts with higher income, exacerbating their negative health outcomes as they are unable to access health information in the traditional sense [62,63]. Understanding the structural and individual factors that influence health disparities in Georgia will allow us to understand the variables that influence HISB in this population as an essential first step in developing effective and accessible health information. --- Goal of This Study In this study, we examined the relationship between HL and HISB considering different demographic factors, such as age, sex, highest level of educational attainment, health insurance status, and county type as rural or urban. The HLQ was used to examine the lived HL experiences of individuals in a southern US state in terms of understanding, accessing, and using health information and health services as a measure of patient-reported outcomes. The purpose of this study was to examine HL and HISBs among a representative sample of adults in a southern US state by answering the following research questions: • What are the average scores on the HISB scales? • Are demographics related to the HISB scales? --- Methods --- Recruitment Participants who lived in Georgia and were aged ≥18 years were recruited using Qualtrics Research Services and stratified to match statewide demographic characteristics of geography and race . Recruitment was conducted through email invitations or prompt survey platform prompts. Participants had individual incentive agreements with Qualtrics Research Services that included cash, gift cards, or retail store miles. --- Measures Demographic information on age, sex, race, highest level of educational attainment, health insurance status, and zip code was also collected. We assessed the frequency of sources of health information for printed materials, the internet, social media, physicians, and family and friends. We used the HLQ to collect different aspects of lived HL experiences related to accessing, understanding, and using health information: HSI, CA of health information, FHI, and UHI. All scales contain 4 to 6 items scored on a Likert-type scale; HSI and CA scales 1 to 4 have four response options , and FHI and UHI scales 5 to 9 have five response options . --- Statistical Analysis We used SPSS for the analysis. Descriptive statistics included means, SDs, frequencies, and chi-square calculations. A 2-step cluster analysis was performed using the 4 HL scales. --- Ethics Approval The study was approved by the institutional review board of Georgia State University under the approval number H21522. --- Results --- Recruitment Out of those who responded to the survey, 57.4% met all the criteria and completed the survey. Table 1 presents the demographic characteristics of the participants. The mean age was 36.3 years. Racial categories matched state stratification rates. Educational attainment was split evenly between less than high school diploma, some college education, and college degree. Health insurance status showed that 72.6% of the participants answered yes. Out of 520 respondents, 264 were urban county dwellers, which is similar to state demographics. --- Statistical Analysis To address the first research question, "What are the average scores on the 5 health information-seeking behavior scales?" means, SDs, and range values of the HISB scales are presented in Table 2. The scores ranged from 1 to 4 . To address the second research question, "Are demographics related to the HISB scales?" Spearman rank correlations between demographics and the 5 HISB scales are shown in Table 3. Of note, sex was significantly associated with the physician HISB scale , such that being female was more likely to be associated with seeking health information from physicians. Age was significantly negatively associated with the internet , social media , and family and friends HISB scales. This indicates that as age increases, individuals are less likely to seek health information from the internet, social media, and family and friends. There were no significant associations between educational level and county with any of the HISB scales ?" a series of multiple regression analyses were conducted using SPSS. We ran 4 regression analyses, which included all HISB scales predicting each HL outcome . Before running the regression analyses, we dummy coded the 5 HISB scales. For each scale, 2 dummy codes were created and the "a lot" response served as the reference group: none or little and some . We chose to dummy code the variables as the scale was ordinal and only ranged from 1 to 4 . We considered these ordinal variables as categorical variables, which requires dummy coding. We collapsed the "none" and "little" groups into 1 group owing to low responses in these categories. As we were most interested in the comparison with the "a lot" group, we used it as the reference. These analyses helped us determine which HISB scales were most important for each HL outcome. For all 4 regression analyses, at least one dummy code for printed materials, internet, and physician HISB scales was uniquely predictive of all HL outcomes . Social media and family and friends HISB scales were not uniquely predictive of any of our HL outcomes. The HISB scales accounted for 0.223 to 0.331 of the variances in our 4 HL outcomes. To address the fourth research question, "Are there distinct clusters of participants based on HISB responses? Do these clusters differ by HL outcomes and participant demographics?" we conducted a 2-step cluster analysis using SPSS with the 5 HISB scales . The results indicated that there were 2 distinct HISB clusters based on the 5 scales . We have descriptively labeled the clusters as "high HISB" and "low HISB" . The pattern of responses to the HISB scales was similar across the 2 clusters; however, the high HISB cluster had more uniform and stable responses, with the exception of social media, which had the lowest reported health-seeking behavior . The low HISB cluster had printed materials followed by social media as their least frequent sources of health information . We used chi-square difference tests to examine whether the clusters were differentiated based on 3 categorical demographics , and no significant differences were found . We used a 2-tailed t test to examine whether the clusters differed based on age, and there was no significant difference . Finally, we conducted a series of 2-tailed t tests to examine whether the clusters differed based on our HL scales . There were significant mean differences for all 5 HL scales, such that the high HISB cluster had significantly higher means across all scales than the low HISB cluster . HISB physicians 0.274 1 - - - - - - - r <.001 - - - - - - - - P value --- HISB family and friends 1 - - - - - - - - r - - - - - - - - - P value a The sample size ranges from 497 to 520. To interpret the direction of the correlations for dichotomous demographic variables, being female, some college or more, and rural county were all coded higher. b Not applicable. --- Discussion --- Principal Findings Our study highlights several important links between HISB and HL: as age increases, people are less likely to seek health information from the internet and social media; seeking health information from social media is not predictive of HL outcomes and is the least-used source of health information for people with high and low HL levels; and people with high HL consistently exhibit more HISBs across multiple sources than those with low HL. Although internet use has significantly increased in the past few years, disparities remain owing to age, gender, race, and socioeconomic status, which may persist in the digital gap between generations and among populations [65]. Studies show that people of all ages may prefer more traditional, printed medium or health care professionals for health information yet also seek corroboration, new information, or different perspectives from web-based HISBs [66]. Among those who use the internet, 79% have looked for health information of one kind or another, and 55% of these online diagnosers have spoken with a clinician about what they have found on the web [67]. Health information available on the web might be especially important for those with sensitive or stigmatized health issues such as drug use, unplanned pregnancies, and sexually transmitted diseases [68]. Older adults who may not have digital skills or digital access may not be able to access important health information, participate in decision-making with their health providers, reach provider websites to access patient portals, or participate in social support networks [69,70]. In addition, among older adults, those with higher cognitive skills are more likely to seek health information on the web than those with lower cognitive skills [68]. Other studies indicate an increase in internet use in older age groups; however, age was still not considered a predictor of HISB [70]. Although older adults may be heavy users of health services owing to increasing age-related and comorbid illnesses, they tend to be the lowest category of internet and other web-based health service users [71,72]. While these findings are specific to adults in Georgia, they are similar to other findings across the United States and the globe. Social media allows users to quickly create and share content and participate in broad information sharing and consumption; different theoretical models propose that individuals are looking for action-oriented information, assessment of risk perception and responses, and more broadly, general information gathering [73]. In our study, the use of social media was not predictive of HL outcomes such as HSI, being able to critically appraise health information, FHI, or UHI. In addition, social media was the least used source of health information for individuals with both high and low HL in Georgia. Thus, although social media is a widely used platform for information dissemination, we found that it is not a significant source of health information nor does it appear to be related to HL outcomes. Some studies on information seeking of COVID-19 information, indicate that social media exposure may result in a significant overload of information that could lead to information anxiety and avoidance, thus having a negative impact on both HISB and HL outcomes [74]. Although this study was conducted during the pandemic, it did not focus on COVID-19 health information; rather, questions were asked about general HISBs. Using cluster analysis, we were able to ascertain a high HISB and a low HISB cluster . The high HISB cluster used all 5 sources of health information significantly more than the low HISB cluster in all HISB categories, and social media was used the least by both clusters. The high and low clusters were not differentiated by sex, educational level, county, or age. Interestingly, both clusters used social media the least as a health information source. Wang et al [75] posit that although social media networks are widely used and may facilitate HISB, they are also the perfect environment for spreading rumors and accurate information, and it is difficult for social media users to ascertain between the two. The lack of control over who can post information on the web has placed additional difficulty on discerning accurate scientific data from misinformation [20]. Social media content also changes quickly; users' cognitive limits may be maximized, which can lead to information overload, vulnerability, uncertainty, and self-isolation [76]. Therefore, individuals may avoid social media channels when searching for health information. The high HISB cluster exhibited higher HL across all 4 scales . This is consistent with prior studies that indicate that having higher HL may influence a preference for information seeking over and above demographic variables [77,78]. This may not be causal; that is, individuals who seek health information may improve their HL owing to motivation for or better access to information in the same way that individuals with higher HL are more confident in seeking health information [77][78][79]. Studies indicate that patients who have higher HL may also have better patient engagement, have high self-advocacy, participate more in shared decision-making, and have better health outcomes [80][81][82]. Those patients with low HL may not have the capacity to seek health information from multiple sources because of their lower socioeconomic status, language barriers, and educational differences. Often, as compared with those with higher HL, those with lower HL are more likely to rely on health care providers' recommendations for their clinical course of action without seeking further information, signifying overlap between HISB and HL in socio-cognitive predictors such as perceived self-efficacy to obtain health information. In these cases, strategies should be implemented to increase patients' motivation to be informed on how to access, understand, and use health information from other sources. Health education practices targeting these populations may facilitate a greater understanding of clinical information and lead to healthier clinical outcomes [77,83,84]. --- Limitations While this study sample mirrored the demographics of the state, we were only able to reach individuals who have computer access. Thus, we have reported findings only for individuals who have digital access and at least a minimum of digital literacy skills. As the recruitment was performed using web-based channels, sampling bias is a potential limitation of this study, as those who had difficulties in using these channels could be excluded from recruitment. Another limitation is that we were only able to survey participants in 1 southern US state. We stratified the sample to match the statewide demographic characteristics of geography and race but learned after data collection that sex and age distributions are largely skewed. Future studies should construct more complex stratification to account for this skewness in the data. Although we believe the findings are generalizable among Georgia residents, they may not be generalizable across other states. --- Conclusions Age and sex were significantly associated with HISBs. As older adults are more likely to use health services, they may benefit from having web-based resources to update them on their health status in real time and to provide accessible social support networks. Thus, there is a need to improve HISB skills of and interventions for older adults. Higher levels of HL are associated with greater HISB. Those with lower levels of HL may benefit from targeted strategies to improve their understanding of health information and how to access, understand, and use it, as greater understanding of health information is associated with healthier clinical outcomes. Further studies are needed, specifically those focused on HL, urbanicity, and access to health information. --- Conflicts of Interest None declared. ©Nikita Rao, Elizabeth L Tighe, Iris Feinberg. Originally published in JMIR Formative Research , 15.06.2022. This is an open-access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright and license information must be included. --- Abbreviations

The transmission of health information from in-person communication to web-based sources has changed over time. Patients can find, understand, and use their health information without meeting a health care provider and are able to participate more in their health care management. In recent years, the internet has emerged as the primary source of health information, although clinical providers remain the most credible source. The ease of access, anonymity, and busy schedules may be motivating factors to seek health information on the web. Social media has surfaced as a popular source of health information, as it can provide news in real time. The increase in the breadth and depth of health information available on the web has also led to a plethora of misinformation, and individuals are often unable to discern facts from fiction. Competencies in health literacy (HL) can help individuals better understand health information and enhance patient decision-making, as adequate HL is a precursor to positive health information-seeking behaviors (HISBs). Several factors such as age, sex, and socioeconomic status are known to moderate the association between HL and HISBs. Objective: In this study, we aimed to examine the relationship between HL and HISBs in individuals living in a southern state in the United States by considering different demographic factors. Methods: Participants aged ≥18 years were recruited using Qualtrics Research Services and stratified to match the statewide demographic characteristics of race and age. Demographics and source and frequency of health information were collected. The Health Literacy Questionnaire was used to collect self-reported HL experiences. SPSS (version 27; IBM Corp) was used for the analysis. Results: A total of 520 participants met the criteria and completed the survey (mean age 36.3, SD 12.79 years). The internet was cited as the most used source of health information (mean 2.41, SD 0.93). Females are more likely to seek health information from physicians than males (r=0.121; P=.006). Older individuals are less likely to seek health information from the internet (r=-0.108; P=.02), social media (r=-0.225; P<.001), and friends (r=-0.090; P=.045) than younger individuals. Cluster analysis demonstrated that individuals with higher levels of HISBs were more likely to seek information from multiple sources than those with lower levels of HISBs (mean range 3.05-4.09, SD range 0.57-0.66; P<.001). Conclusions: Age and sex are significantly associated with HISB. Older adults may benefit from web-based resources to monitor their health conditions. Higher levels of HL are significantly associated with greater HISB. Targeted strategies to improve HISB among individuals with lower levels of HL may improve their access, understanding, and use of health information.

Background Along with an increasing ageing population, the number of childless older people in China has also increased. It was estimated that there were 3.52 million childless older people in 2005 [1]. In addition, >30 years of the One-Child Policy has also led to a new 'childless' older people phenomenon. Over 1 million families lost their only child in 2010 [2], and this is expected to reach 10 million by 2035 [3]. Three reasons for childlessness in old age have been identified: involuntary childlessness , voluntary childlessness and those which result from the death of one or more children [4,5]. Childlessness may affect a person's health status through different mechanisms. From a sociological and economic perspective, involuntary and voluntary childlessness could have positive effects on peoples' health status if individuals have enjoyed a higher personal consumption and less pressure to earn an income due to not devoting a significant portion of their income to support children, and avoiding stressors or health issues associated with parenting [6]. Childless persons may also have more assets and a higher disposable income, which allows them to afford better health care and health insurance, and can more easily pay for household services in old age than their counterparts with children [7,8]. From an intergenerational support perspective, children can provide social support to older parents; they can monitor their parents' health, and this could result in older parents having better health than their childless counterparts [8]. In addition, childless older people have been found to have worse health behaviours than parents [8]. On the other hand, the death of a child is a traumatic event which could have a long-term effect on older people [9], particularly for those whose children have all died, as they have to cope with health problems by themselves and may have to endure psychological suffering [10,11]. Therefore, physical and mental health may be different among older people according to different pathways into childlessness. In traditional China, having no children is generally believed to be an 'undesirable' status [5]. It is considered to be a personal tragedy to die without a surviving child in China due to the belief that life after death holds no comfort if one remains heirless [5,12]. In addition, older people who have no living children could lose their main social support in later life. Although childless older people could receive some institutional support in China, the state welfare provision for older people, including those without children, cannot cover all those in need [5,13]. Even though China has achieved nearly universal coverage in social security for older people, inequity among different types of insurances still exists and the formal benefits which older persons actually receive are minimal [14,15]. Combined with having no social support from children, experiencing inequality within the social security system, witnessing a traumatic event and psychological suffering from losing a child, and being marginalised and sometimes ignored by society, childless people who have lost their child could hold a more vulnerable position in society. The aims of this study are to explore the association between childlessness and health outcomes, and whether childless older people in China are in a more vulnerable position than older people with children. --- Data and methods --- Data This study uses the 2012 China Family Panel Study , which is a national multistage probability sample of Chinese families. There were 35,719 respondents aged 16 and above within 13,281 households [16]. People aged 50 and above were selected for this study. The final sample includes a total of 13,171 respondents for the analysis . --- Health outcomes measures Three health outcomes were considered: difficulty with Instrumental Activities of Daily Living , self-rated health and depression, representing both physical and mental health outcomes. Difficulty with IADLs is commonly used to gauge older people's daily performance and includes seven items: outdoor activities, eating, kitchen activities, taking public transportation, shopping, cleaning and doing laundry. A binary variable was constructed for IADLs, with 1 representing difficulty with any of the seven IADLs, and 0 representing 'no' difficulty with any of the seven IADLs. SRH is a subjective measure of health which has been found to be a sensitive and reliable indicator of current health status for older people [17]. There are three categories: 'Good' , 'Fair' and 'Poor' . In terms of the report of depression, this study uses 20 questions of the Centre for Epidemiological Studies Depression Scale to measure how often the respondents felt depressed in the last month which could reflect their psychological distress. For each question, respondents rated the frequency of each symptom of distress using a scale from 1 to 4 . The scale of depression was constructed by summing up the unweighted numbers in response to 20 questions. --- Childlessness situation Childlessness is the key variable. The CFPS questionnaire allows respondents to provide information about up to 10 children. If the respondents provided a valid current age and reported that a child is 'alive', this child was treated as being alive in 2012; the number of all living children was then summarised for each respondent, ranging from 1 to 10. Among this group, the analysis further separated those who reported that at least one child had 'died'. Therefore, there are two groups in the analysis: those with 'all children alive' and those who had living children but 'had lost at least one child'. For those who have no living children, the paper distinguished between those whose 'child have all died' and those who were childless for other reasons . The distribution across the four types of childlessness is presented in Table 1. There were 9,039 people with all their child still alive, 228 people whose children have all died, 3,611 older people who were classified as other childlessness and 296 people who have lost a child but still have at least one living child. --- Covariates Although the focus of this research is on the effects of childlessness on health, it is important to control for other factors so that the effects are reliable. Demographic, socio-economic and social security characteristics are used, including age, gender, urban/rural residence, education, total personal income, marital status, access to different types of old-age insurance and access to different types of medical insurance as control variables following previous reports . --- Methods Considering the number of response categories in the three health outcomes, a binomial logistic regression is used to examine the effect of childlessness on difficulty with IADLs; a multinomial logistic regression examines the effect of childlessness on SRH; and an ordinary least squares model examines the effect of childlessness on depression. The first model includes only the respondents' childlessness status in order to explore its direct effect on health outcomes, while Model 2 adds the demographic, socio-economic and social security variables to investigate whether the effects of childlessness on health outcomes are mediated by these factors. --- Results --- Descriptive findings Table 1 presents descriptive statistics for health outcomes by different childlessness statuses. Most of the older people reported no difficulty with IADLs , and around half reported good SRH. The mean score of depression was 34. Older people whose children have all died and those who have lost a child but still have at least one living child are more likely than their counterparts with all their children alive or people who are childless due to other reasons to report difficulty with IADLs, poor SRH and a high score of depression. In terms of demographic, socio-economic and social security characteristics, key differentials are evident among different statuses of childlessness . Older people whose children have all died and those who have lost a child but still have at least one living child are in the most vulnerable position, as they are older , live in rural areas , have a lower level of education , are less likely to have an income and are less likely to receive a pension after retirement age, compared with older people with all children alive and those who are childless for other reasons. Although people who are childless for other reasons are less likely to have a pension after retirement and medical insurance than parents with all their children alive, they are generally in a better position: they are more likely to have a formal education and income than older people with all their children alive . --- Statistical model The results from the logistic regression models for reporting difficulty with IADLs show that people who had lost children/a child are significantly more likely to report difficulty with IADLs than their counterparts with all their children alive; while no significant differences are found for other childless persons and older persons with children . However, the adverse effect of losing children/a child on difficulty with IADLs among those whose children have all died and those who still have at least one living child become non-significant after controlling for demographic, socio-economic and social security factors. People who are older, female, living in urban areas, illiterate/semi-literate, with no income and never married are more likely to report difficulty with IADLs . Only older people who are still in employment after retirement age and without a pension are less likely to report difficulty with IADLs than those under retirement age and without a pension. Other childless persons are less likely to report difficulty with IADLs than people with all their children alive. In terms of the results of reporting fair or poor SRH in the multinomial regression models in Table 3, compared with people with all children alive, those in the other childlessness situations are more likely to report poor SRH . Again, after controlling for the covariates, the effect of childlessness on SRH becomes non-significant, but those who have lost a child are still more likely to report poor SRH than people with all their children alive . People who are older, female, living in rural areas, with lower formal education than junior level education, lower income and never married/ divorced are more likely to report fair and poor SRH than those who are younger, male, who live in urban areas, with junior level education, higher income and are married. Compared with older people under retirement age and without a pension, older people who receive any type of pension or no pension after retirement are more likely to report fair SRH; in addition, those without a pension after retirement or who receive the urban resident pension are more likely to report poor SRH. Compared with those with public medical insurance, people with all the other types of medical insurance are more likely to report fair SRH. Finally, losing children/a child is associated with a higher depression score for childless persons whose children have all died or those who still have at least one living child than those with all children alive . In Model 2, the adverse effect of losing children/a child for those whose children have all died becomes non-significant, but those who still have at least one living child are still more likely to report a higher depression score than those with all children alive after controlling for other factors. Being female, illiterate/semi-literate, never married, divorced or widowed, and without a pension after retirement are positively associated with higher depression; while being childless for other reasons, living in urban areas, having a higher income and receiving a rural or urban resident pension are negatively associated with high depression. --- Discussion This study investigated the health status of childless older people in China. Without considering demographic, socio- economic and social security factors, childless persons whose children have all died and those who have lost a child but still have at least one living child are more likely to report difficulty with IADLs, poor SRH and higher depression than older people with all children alive; while other childless persons are less likely to report difficulty with IADLs and to report depression, but they are more likely to report fair and poor SRH than parents with all their children alive. The findings partly reinforce previous research showing that childless persons generally tend to have relatively poorer health [8,18,19]. After controlling for demographic, socio-economic and social security factors, the findings show that there are no significant differences in the three health outcomes between childless persons whose children have all died and older persons with children. However, people who have lost a child but still have at least one living child are still more likely to report poor SRH and higher depression. This indicates that the death of a child has an adverse effect on people's health outcomes, both for childless persons whose children have all died and for those who still have at least one living child. Alternatively, both childless persons whose children have all died and those who still have at least one living child are potentially in a more vulnerable position . From a life-course perspective, this may also reveal that their children have died because they grew up in a vulnerable family, and, as a consequence, these older people have increased vulnerability and report poorer health outcomes in later life. It is not surprising to find that other childless persons are significantly less likely to report difficulty with IADLs and to report depression than those with children after controlling for other factors, as the accumulation of positive effects of their early life could also result in better health in later life [8]. This study also has its limitations. First, the survey lacks information to separate persons who are childless involuntarily or voluntarily. The health outcomes of these two groups could be different as the motivations to be childless are different. Secondly, due to the small sample size, the analysis was also unable to separate childless persons who have lost their only child from those who have lost all their children. Thirdly, the cross-sectional nature of the study may not capture the short-term effect of losing a child on health outcomes. Nevertheless, the findings herein provide additional insight into the effects of childlessness on health outcomes in China [5,18]. In conclusion, the findings illustrate that the death of a child has an adverse effect on people's health both for childless people whose children have all died and for those who have lost at least one child, but have other living children. These two groups are the most vulnerable groups among the respondents . The findings may also suggest that the children of these groups have died because they grew up in a vulnerable family, with the accumulation of negative effects of vulnerability, and the loss of a child may have contributed to worse health outcomes compared with people with all their children alive. In addition, this group of childless people did not expect to find themselves in this situation, nor were they prepared to receive social support from their children, and, as a result, they may be likely to require greater income support, health care and social services compared with parents [6]. These findings therefore have important policy implications: the government needs to improve the social security for childless persons whose children have all died and for those who have lost at least one child but have other living children. In addition, the common characteristic across these two groups is the experience of losing a child and, in this sense, providing effective social services could contribute to alleviating some of the adverse effects of the death of a child in later life. --- Key points • The worse health outcomes are found in childless older persons whose children have all died compared with those with all their children alive. • Older people who were childless involuntarily or voluntarily are less likely to report difficulty with Instrumental Activities of Daily Living , or depression. • Those who have lost one child but have other living children have poorer health outcomes than parents with all their children alive. --- Supplementary data Supplementary data mentioned in the text are available to subscribers in Age and Ageing online. ---

Background: the number of childless older people is increasing in China, but relatively little is known about the role of childlessness in health outcomes. This study investigates the relationship between childlessness and three health outcomes: difficulty with Instrumental Activities of Daily Living (IADLs), self-rated health and depression. Methods: this study includes 13,171 individuals aged 50 and above from national survey data of the second wave of the China Family Panel Study (2012). Binary/multinomial logistic and ordinary least squares regression models are presented. Results: childless individuals whose children have all died exhibit worse health outcomes than individuals with children, but this effect is influenced by demographic characteristics, socio-economic status and social security. On the other hand, individuals who are childless due to other reasons (involuntary or voluntary) are less likely to report difficulty with IADLs and to report depression than older people with all children alive after controlling for demographic and socio-economic and social security factors. Conclusions: the death of a child has an adverse effect on people's health for both childless people whose children have all died and those who have lost a child but have other children alive. These two groups are in the most vulnerable position, which could also suggest that their children have died because they grew up in a vulnerable family. The government needs to improve the social security for these two groups and provide social services (particularly mental health services) to older people who have lost a child; these could contribute to alleviating some of the adverse effects of the death of a child.

Introduction Thromboangiitis obliterans is a non-atherosclerotic segmental inflammatory and occlusive vascular disease. It most commonly affects the small and medium-sized arteries, veins, and nerves of the legs and arms, predominantly in young male smokers [1]. Although Buerger's disease has a worldwide distribution, nowadays it is more prevalent in the Middle East and Far East than in North America and Western Europe [2]. The initiating factor of this disease is still unknown. Some hypotheses such as bacterial infection, immunological processes and genetic factors Bahare Fazeli have been suggested for the onset of BD, although they have been neither ruled out nor certainly confirmed [1,3]. The only hypothesis that has been admissible since Leo Buerger's time is the extremely strong association between tobacco exposure and this disease. However, some investigators believe that nicotine is just a physiological vasoconstrictor, so it should not be the main cause or the initiating one [4]. As a matter of fact, a small number of smokers all around the world eventually develop this disease and it appears mostly in young male smokers from the low socioeconomic sector of the community [1,4]. There is not a distinct definition of "low socioeconomic condition"; generally, "low socioeconomic status" is considered as "poverty". There is no definite meaning of "poverty" either, but an admissible one is "a specific status of life in which the talents of people remain hidden or emerge with delay" [5]. Poverty is usually divided into absolute poverty and relative poverty. Generally, this classification is established according to the monthly income . "Absolute poverty" is defined by difficulty in arrangement of basic life expenses such as food and clothing, as a result which life becomes burdensome. In contrast, "relative poverty" is a condition in which the income is just enough to pay for the basic needs. People in this class have to pass their daily lives while having the lowest standard of living while they compare themselves with the better off people in their society [5]. We have noticed that there is an annual increment of new cases of BD reported to Mashhad Vascular Surgery Research Centre , a referral centre in Khorasan province of Iran [6]. Khorasan is the largest province in Iran and has a population of over 6 million. Therefore, an investigating programme has been commenced for various aspects of Buerger's disease; in this paper the smoking habits and socioeconomic status of patients who reported to MVasRc are highlighted. --- Material and methods During a period of 22 months from August 2003 to June 2005, a descriptive study was conducted using a questionnaire related to the history, clinical features of BD and socioeconomic indices. This questionnaire was filled in based on the information obtained from the individual patients who corresponded with Shionoya's criteria. Shionoya's criteria include 1) history of smoking, 2) onset before the age of 50 years, 3) infrapopliteal arterial occlusive disease, 4) either upper limb involvement or phlebitis migrans, and 5) absence of atherosclerotic risk factors other than smoking [7]. Owing to the fact that poverty does not only mean "low economy", some indices for the assessment of socioeconomic status in this study were set up regarding: 1) clean and tidy appearance, 2) level of literacy based on the high school diploma as the minimum qualification, 3) having a known professional career, 4) unemployment, longer than 3 months in Iran, 5) good quality job, with respect to the number of hours worked per day and suitable payment, 6) monthly income taking into consideration the fact that in Iran the relative and absolute poverty lines are defined as 300 and 160 US dollars respectively, and finally, 7) the place of living [5,8]. In this study, poverty line was the index for economic status and the rest of the indices were associated with the social condition; thus, if the patient was below the poverty line, and not eligible for more than two social indices, he or she would be included in the low socioeconomic category. Additionally, absolute lymphocyte count as a non-specific indicator of protein-energy malnutrition [9] was measured for hospitalized patients whose cell blood count was known before sympathectomy surgery. In healthy subjects, the absolute lymphocyte count should be above 2,500 per mm 3 . Mild lymphopenia is considered to be in the range 1500-2000 per mm 3 , and counts below 1,500 are classed as severe lymphopenia [9]. Patients were excluded from the body mass index evaluation for biases such as major extremity amputations, atrophic limbs due to ischaemia and severe rest pain that did not allow them to stand up straight or to get on the balance for weight measurement. Also, the patients' places of living were specified on a map of the city. The study was approved by the ethical committee of Mashhad University of Medical Sciences . --- Statistical analysis The questionnaire was designed in Microsoft Access software version 2000 and the entered data were exported to SPSS software version 11.5 and were analysed based on descriptive methods including central and spread parameters. --- Results During the period from August 2003 to June 2005, a total of 90 patients diagnosed with BD reported to MVasRc; 86 corresponded with Shionoya's criteria and were included in the list of patients, 61 were new cases of BD, 2 of them were females and only 1 had a positive family history . From the total cases, 90.6% were below the relative poverty line and 5.8% were below the absolute poverty line . All the patients had poor oral and dental hygiene but the appearances of 87.2% were acceptable. Only 4% of the patients had a high school diploma, one of them had a bachelor degree, 21% were illiterate and the rest had the ability to read and write to high school standard. 27.6% had a known profession, while the rest had temporary jobs such as simple labourers , peasants , taxi drivers , hawkers and 3.5% were totally unemployed. Sadly, 2 of the patients were street beggars by revealing their disability. For 60% of them, the wages were not adequate for the number of hours worked per day and almost all of them had no free or leisure time. About 53% had been unemployed more than 3 months and 76% were made redundant at the time of reporting for their claudication or severe rest pain. Moreover, 43% of patients lived in the Mashhad city slum; the remainder stayed in towns or villages in the province. Lymphopenia was observed as a factor of malnutrition in 31 hospitalized patients by measuring the ALC; among these cases, 29% and 22% had severe and mild lymphopenia respectively. About 45% of the patients had experienced a minor amputation and about 25% had a major amputation during the study. From the total number of subjects, 66% had started smoking before the age of 20 , and the lowest age of smoking was 10 . Cigarette smoking had a range of 2-80 cigarettes/day with an average of 22 cigarettes/day. The duration of cigarette smoking, before the onset of BD, ranged from 2 months to 35 years . Of patients, 94% were active smokers, 3.4% were passive smokers and the rest consumed chewing tobacco; 86% had simultaneous opium addiction. Of these patients, 24% had become addicted because of their rest pain or the depression and discomfort after amputation. --- Discussion According to our indices of socioeconomic status, 95.4% of the patients were in the low category, and their economic condition had worsened due to the disabling characteristics of this disease. Clearly, low socioeconomic status was a considerable risk factor for their tendency toward smoking and opium addiction; for instance, only 27% of the patients had a known profession or a long-term career, while absence of professional identity is a risk factor for tobacco and opium addiction [10]. Long time of working for a higher monthly income, hard and heavy jobs with inappropriate nourishment are other risk factors for smoking and in particular drug abuse, because in these patients smoking and drug addiction are the main sources of energy and the cause of making them float in their inaccessible dreams [11]. During the study the author noticed that for numerous subjects, the first manifestation of this disease had occurred following a considerable stress such as losing a family member , divorce , or bankruptcy . This aspect was not considered in the primary questionnaire and only the last 19 patients were asked about it. Furthermore, the prevalence of this disease has declined in the developed countries, such as in North America, Western Europe and Japan. The decline in prevalence of BD in these countries could be related to the decrease of smoking prevalence and more precise diagnostic criteria. However, during the last decades from 1980 to 2000 -which the diagnostic criteria established more definitely -the decreases in the prevalence of smoking and the prevalence of BD were not parallel. For instance, in the United States, the prevalence of Buerger's disease declined from 104 to 12 per 100 000 [1]. However, during this time, the prevalence of young male current smokers had been increased from 42 300 to 50 300 per 100 000 [12]. Moreover, in Japan, the new cases of this disease reported to Nagoya University Hospital, from 1985 to 1996, showed a 3-fold decline [13]. However, the smoking prevalence had declined around 15% in that time [14]. According to the World Health Organization in 2003, 47.7% of adult men and 11.5% of women above the age of 20 were regarded as smokers in Japan [15]. Recently, since 1990 in northern Thailand more people aged 20-50 years have been employed in industry, and as a result their living standard and sanitary condition have improved. Also, a decrease in the number of patients with BD was noticed [16]. The reports of high BD in developing countries such as India, Bangladesh, Turkey or north-east Iran is probably due to the rise in consumption of tobacco . However, the prevalence of smoking in some developing countries, such as Iran, is still the same as or lower than many Western European countries [17][18][19][20][21]. There are no clear statistics about the status of poverty in Iran. Although, based on news media in Iran, the state of people in absolute poverty improved from 2003 to 2005, during the same period the condition of people in relative poverty worsened [22]. In conclusion, it can be concluded that: 1) the annual increment in the number of BD patients reporting to MVasRc, with 2) only one patient having a positive family history, 3) the variation of time and the level of tobacco consumption in studied patients, and 4) the strong relationship between this disease and low socioeconomic status in the study implies "socioeconomic status" as a controllable risk factor for the initiation of this disease. This could even contribute to the diagnostic criteria of the disease; and a better prognosis may be accomplished by improving the socioeconomic situation of the patients, at least by improving their nutritional status. As a final suggestion, for the strong relationship between Buerger's disease, tobacco consumption and socioeconomic status, the prevalence of this disease might be an indicator of socioeconomic development in different societies.

Introduction: Nowadays, Buerger's disease (BD) is more common in the developing countries of Asia. Although its prevalence is going to decrease in the developed countries, its decline rate is not in parallel with that for smoking in these countries. Since the number of BD patients reported to MVasRc is increasing annually and its pathogenesis is unknown, the aim of the study was to investigate the smoking habits and socioeconomic status of the patients corresponding with Shionoya's criteria. Material and methods: Poverty line was the key factor of economic condition. Hygiene, education, professional occupation, long-term unemployment and healthy work were considered as social indices. Patients under the poverty line in addition to weakness in more than two social indices were included in low socioeconomic classification. Results: From the total of 86 patients who reported to MVasRc during the 22-month study period, 71.6% and > 95% were new cases of BD and in low socioeconomic status respectively. Smoking ranged from 2 to 80 cigarettes/day. The duration of smoking before the onset of BD varied from 2 months to 35 years. Conclusions: There is a lack of correspondence between BD and decline in the prevalence of smoking in developed countries. Also, duration and smoking habit varied in the studied patients. On the other hand, the strong dependence of BD on low socioeconomic conditions, as revealed in this research, implies that socioeconomic status may be a risk factor for initiation of BD. Moreover, the prevalence of BD might be an indicator of socioeconomic development in different societies.

INTRODUCTION The European Union's Water Framework Directive, adopted in 2000, requires that bodies of water reach ''a good ecological status.'' Based on this directive, European water management was reorganized by water catchment with ''the ultimate goal to improve the quality of surface bodies'' . European Union countries have also promoted the development of new tools to assess the ecological status of their rivers and improve watershed management. The EU directive aims to implement a new mode of governance that makes water ''everybody's business'' . It acknowledges the key role of local stakeholders in water management and requires the evaluation of different users' perspectives in order to implement policies based on a participative approach involving the public . The criteria for defining river quality are no longer solely hydrological, geomorphological, ecological, and thermal-they cannot only be measured ''objectively''-but are also sociological and political, aesthetic and spiritual . Therefore, implementing integrated water management includes linking the ecological and social dimensions of the river. Before the implementation of integrated water management, some studies were already assessing how people consider their environment by focusing on water quality public perception and valuation . Later, researchers enlarged their analysis to question perceptions of entire river corridors . Most of those studies focus on assessing people's knowledge of the river and the social demands regarding the riverscapes, defined as landscapes with a river as focal point . These analyses concern perceptions of specific river segments , of a particular issue such as large wood debris , or of a specific event such as flood perceptions . They can also aim to assess people's aesthetic preferences . In France, most studies of rivers' social perceptions have been led on the Rhine River , on North-Western France valleys , or on the Rho ˆne catchment . The research project presented here focuses on the Ain River, in Eastern France, and was designed to include the whole river corridor and to define stakeholders' concerns regarding river quality in the context of a built environment. Until now, the Ain River's quality has mostly been considered by scientists from geomorphological, ecological, and thermal points of view: many studies focused on geomorphological and ecological disturbances and the evolution of hydrosystems. At the beginning of the twentieth century, the Ain River was known as one of the most beautiful and wild rivers in France. Currently, it is under various pressures: hydropeaking , withdrawals , and pollutions . Geomorphological and ecological studies have shown that the quality of the river and its riverbanks have deteriorated over time. As the Ain River was dammed between the 1930s and the 1960s, many analyses focused on the alteration of the river's flow and sediment transport. These studies revealed processes of river entrenchment and of vegetation encroachment which lead to a loss of landscape diversity and biodiversity . Moreover, downstream from the dams, the lower Ain valley underwent a loss of lateral mobility and pavement processes due to a sediment deficit. A thermal analysis also showed the ecological impact of a rise in the summer water temperatures, related to the rising air temperature and the lower flows induced by water containment in the dam reservoir . On the Ain River, the first sociological study was led by Cuaz et al. , who interviewed residents and seasonal users. This analysis investigated the potential for implementing effective water governance but appears to be out of date with respect to current issues on the Ain River, since new management tools have been implemented in the 2000s. Next, Cottet et al. focused on perceptions of the river's quality from the standpoint of landscape aesthetics. Both of these studies were centered on the downstream part of the river and did not include the upper reaches modified by a series of dams. Given these limitations, we aimed to complement and enlarge the analysis of the current issues on the Ain River by focusing on the local stakeholders' perceptions of the river quality . We propose to assess stakeholders' expectations regarding the Ain River's riverscapes to examine the river quality as a both ecological and social issue and to analyze how the ecological and social dimensions of the river are intertwined in defining river quality. We consider the Ain River riverscapes as ''waterscapes'' since the Ain River can be seen as the outcome of socioecological processes throughout history. We build upon the ecological and geomorphological studies already conducted to focus on the social aspect of the Ain River. We see the river as a ''hybrid freshwater ecosystem,'' which is being more and more ''suggested as a point of departure for the production of healthy and desirable streams'' . Very often, scientists contribute to define what water is and how it has to be managed ; our study aims therefore at bringing together other kinds of perceptions which also contribute to define river quality. We surveyed three different categories of stakeholders-river managers, anglers, and local residents-in three different sections of the river-upstream, on the main reservoir, and downstream-to better understand how some stakeholders' perceptions on the Ain River quality are more powerful than others. The following questions were addressed: What are the criteria considered by the users of the Ain River to define and measure its environmental quality? Do the different types of users of the river view these criteria in a similar way? And do these criteria differ along the upstream/downstream continuum? --- MATERIALS AND METHODS --- Dammed but still pristine: Managing the Ain River The Ain River originates in the Jura Mountains of France and drains a 3762 km 2 basin. It flows for 200 km before joining the Rho ˆne River upstream of the city of Lyon . The peak flow regime of the Ain River is affected by five hydroelectric dams that are managed by Electricite ´de France , the most important electricity provider in France. The Vouglans Dam was constructed in 1968 and controls 30% of the drainage basin . Its reservoir, called Lake Vouglans, has a storage capacity of 605 million m 3 . It is the uppermost and third largest reservoir in France. However, the Ain River remains a corridor that hosts a rich biodiversity. The upstream ecosystems mainly comprise forested ravines, calcareous soils, and wetlands , while the downstream area is characterized by pebble banks, alluvial forests, and wetlands . Moreover, the confluence of the Ain River with the Rho ˆne River is one of the last intact interior deltas in Europe. These habitats are often included in protected areas on different scales . In addition to the management of these protected areas, several uses of the Ain River must be considered. The water is used for different types of production: energy production through dams and smaller facilities, agricultural production, construction industry, and production of drinkable water. The river is used for touristic and recreational uses, including fishing, canoeing, hiking, and bathing. Lake Vouglans plays a key role in the attractiveness of the Jura De ´partement, which relies on a sports and ''green'' image for its tourism and economic development. The downstream area is located 37 km from Lyon and is subject to specific pressure from urban development. The diverse topography, ecosystems, and uses along the Ain River are subject to different modes of governance. There is no permanent management organization that integrates the entire river corridor. The upstream part of the river basin is managed by a set of administrative districts whose competences and areas of intervention are diverse . Since 1995, the downstream part of the river has been managed by a structure called ''syndicat de rivie `re'' . This dissociation between upstream and downstream management often makes river management very tense. The management challenge is even more salient because EDF superimposes itself as a dominant stakeholder by controlling the water level in the reservoir and, consequently, downstream. The main conflicts occur during the summer period. Indeed, the tourist facilities of Lake Vouglans, managed by the Jura De ´partement, seek to maintain a minimum water level in the reservoir to ensure access to the lake for recreational activities, which induces lower flows downstream of the dam while the hydric stress is high. On the Ain River, hydro-electricity production and tourism are the priority uses of water. The instream flow is therefore strongly shaped by political and economic issues, as Fernandez has shown in her study of the Garonne River. The occurrence of river uses conflicts demonstrates that some stakeholders are trying to challenge the power relations that shape the river's current management. --- Interviews and mental maps: Understanding public perceptions of the riverscape's quality In 2014, we conducted semi-structured interviews and investigated the perceptions of the riverscape quality. We designed our survey so that it could give an account of the diversity of the points of view regarding the assessment of the Ain River quality. We opted therefore for a small but diverse sampling to include social standpoints as diverse as possible, in order to collect different perceptions on the Ain river quality. Sampling continued until we reached the saturation of knowledge . We learned a great deal from the first few interviews. As Coeterier noted, ''we often found that after six or seven interviews no new information about perceived quality was added.'' A sample of 8-12 interviews of a homogeneous group is all that is needed to reach saturation. If people generally agree on the basic quality of a landscape, they may disagree on the specific quality or potential uses of these qualities. As perceptions are ''affected very much by the use which an observer makes of a water body'' , we also investigated people's experience of the river. The semi-structured interviews addressed three topics: personal or professional uses of the Ain River, place attachment to the river and its riverbanks, and perceptions of their quality. Place attachment can be defined as comprising place dependence , place identity , place affect, and place social bonding . Therefore, interviewees were asked about how long they had been living/working with the river, how often they went to the river, for what purposes, what their favorite places were on the river and why, and with whom they went. We surveyed three categories of stakeholders among the diverse set of river users. We interviewed ten river managers who stand at the crossroads of science and technology and may therefore convey the dominant discourses on the Ain River quality. We also interviewed eight anglers, especially those active in anglers' organizations because of their role of whistle-blowers and as initiators in the mobilization around the river basin. Moreover, we interviewed twelve local inhabitants living in riverside municipalities, lay people who have established a certain familiarity with the river. Twenty-two interviewees were men and eight were women-all of them over 25 years old, with 80% of them between the age of 30 and 65. This partitioning allowed for comparisons of respondents' perceptions and knowledge of the river. River managers were first contacted on the phone, thanks to their institution's websites, anglers were reached through anglers' organizations, and local residents were met randomly on the riverbanks. The decision to stop interviewing anglers derived from the homogeneity of this group : these river users were well organized in angler associations and therefore expressed a well-shared discourse. Not surprisingly, residents showed the lowest homogeneity, so this group required a number of interviews. Because the river management institutions and the managers' roles were quite diverse, the homogeneity of the group of managers was intermediate. The sampling strategy was also guided by the geographical partition of the Ain River, based on relief and water governance: the survey was conducted with river users living upstream , around Lake Vouglans , and downstream . At the end of the interview, each person was asked to draw a mental map of the river. The goal of this method is to obtain a visual product that shows how an individual comprehends his/her environment . Mental maps are often mentioned as a method for assessing public perceptions of space . However, this methodology also has two limitations: first, creating the maps hinges on the abilities of the interviewee; second, the interpretation can be troublesome because of the variety of the data . To carefully implement this methodology, participants were asked to draw their mental maps on a very basic blank map of the Ain River . Moreover, to ensure that the consistency of the drawings would allow for comparison, respondents were asked to indicate components of the landscape in blue, indicate places that should be protected in red, those that should be visited in green, and those that they regard as damaged in purple . It was also possible for respondents to give several colors to a single place. In this case, the place was counted several times . Out of the 30 people who participated in the survey, 20 agreed to draw the mental maps. Ten other people declined stating they were not feeling comfortable being asked to draw. --- Data analysis: Qualitative and quantitative methods Each interview was transcribed, and data about the interviewees were entered into a table . We conducted a content analysis on the part of the discourse that addressed the quality of water and landscape. We mainly focused on two topics: How good or bad was the riverscape quality according to the respondents? What signs did they rely on to make this assessment? . We also studied the entire corpus using an open-source textometry software called TXM . TXM highlights the internal structure of the corpus and facilitates analytical reading. The TXM platform can provide the distribution of words in different parts of the corpus, defined by partitioning the corpus according to the metadata. Our study focused on two different partitions: one based on the respondent's residence location and one based on the type of river users . After this partitioning step, we conducted a ''characteristic elements'' analysis as proposed by Lebart et al. to reveal contrasts in each part of the partition. This analysis is based on probability calculations of word frequency of one part, considering the whole corpus as a reference and using a hypergeometric model. The goal of calculating characteristic elements is ''to detect, within each parts of the corpus, which elements are used frequently as well as which elements tend to be used rarely'' . Words with a score above ? 3 have a large subfrequency in the considered part , and words with a score below -3 have a small subfrequency in the considered part . Those words can be viewed as characteristic to a group of respondents. The 20 mental maps that we collected were very different from each other. To analyze this disparate corpus, we used a mapmaking software to count and locate the places mentioned by all respondents and the value people placed on these places . --- RESULTS What are the criteria considered by the users of the Ain River to define and measure its environmental quality? We identified all signs regarding the good or poor status of the riverscape that the stakeholders mention when they are asked to describe the Ain river quality . Users of the Ain River assess the quality of the river by referring to what they see. The most mentioned signs are based on visual observations: presence of wildlife , algae proliferation , and water level variations. But respondents also refer to other senses such as hearing or smell: ''The color of the Ain River was changing, the sounds were changing, and the smell was changing, from day to day and over seasons'' . According to most participants, the Ain River's riverscape is in a good state: ten participants described it as perfectly good, 16 judged it as quite good but noted many malfunctions, and four participants viewed it as being in a very critical condition. The vocabulary of beauty and affection is often used to describe the river. The Ain River, as mapped by an angler . It shows the source, Les Pertes de l'Ain waterfalls, an oak tree on a gravel bed where the angler's family likes to have a picnic, the town of Pont du Navoy, and the Vouglans dam. c The Ain River, as mapped by a river manager . It shows the source, the Malvaux canyon and the Langouette and Billaude waterfalls, the Pertes de l'Ain waterfalls, the Jura Lakes area, the Saut de la Saisse waterfalls. The dammed section of the river is shown as a damaged place but also as a nice place to visit. The rest of the riverbed and the downstream floodplain are drawn as places that should be protected Here is an example of a recurrent positive perception of the river, especially among anglers: ''I'm in love with the river. Ó To me, it's my river, and it's a part of me…'' . In general, people show a strong emotional attachment to the Ain River. Do the different types of users of the river view these criteria in a similar way? The signs are partly determined by the type of stakeholders that we interviewed. Anglers for example focus on the river's wildlife; above all, they cite the fish communities, both quantitatively and qualitatively . They also frequently mention the presence of insects , larvae , and crayfish. Finally, they regularly highlight the variations in the water level and changes in the water temperature as signs of the degradation of the river's quality . According to anglers, these fluctuations have a strong impact on the wildlife: the ground turns too dry for fish to spawn and the water temperature is too high for Salmonidae. Anglers' consideration for habitat leads two of them to evoke sediment transport issues . Generally, anglers over-use the words ''dams'' and ''EDF'' compared to other interviewees . These words, as well as ''water release'' , embody the main quality issue according to them. Finally, anglers focus much less on ''lakes'' or ''reservoirs'' with respect to the other interviewees. They combine ecological components and hydrological issues. They also insist on built environment and stakeholders. River managers also observed the fish communities and complemented the anglers' observations by considering, in a broader scope, the entire biodiversity of the river corridor. They were the only group of stakeholders to focus on riparian vegetation . River managers paid attention to the functioning of the river ecosystem and its possible dysfunction, whether biological or geomorphological . Thus, two river managers discussed sediment transport too . River managers also highlighted the specific ecosystems that highly depend on the Ain River, such as peatlands and dry grasslands . The characteristic elements analysis revealed that the managers view the river as part of a catchment, and therefore on a large scale, more than any other stakeholders, they use the words ''valley'' and ''basin'' . Residents' perceptions differed from the river managers and anglers' ones. First, they mentioned the presence of garbage as the main sign of a damaged river corridor: ''It is often crowded there, and it is dirty. People leave their waste behind'' . Second, they focused on the color of the water to assess its quality . Few residents relied on the fish communities or the water level to evaluate the river quality . Among residents, the words used to describe the quality of the river were less directly linked to the riverbed but most of them had positive connotations . Their words referred to different uses that occur on the riverbanks: ''wood'' , ''farm'' , and ''hiking'' . The word ''story'' was used more often than in the other groups, most likely because interviewees answered our questions by referring more to their emotional attachment to the river, and especially by telling anecdotes. Are the criteria preferentially applied to certain sections of the upstream/downstream continuum? Among the 20 mental maps collected, only six represented the entire Ain River corridor, and these were drawn by river managers . The other maps focused on specific parts of the river . The places mentioned by the respondents as well as the value that they associated with these places are shown in Fig. 4. The Vouglans Dam was the most represented place along the Ain River. Places located upstream were drawn by respondents living or working upstream and downstream , while places located downstream were never mentioned by people who lived upstream . The Vouglans Dam was mostly considered as a damaged place but, according to their discourses, some respondents also gave it an aesthetic value and also marked the place as worth to be visited. Both indications were taken into account in the making of Fig. 4. These opposite values also concerned the other hydroelectric dams . In several interviews conducted upstream or downstream, people did not seem to bear living or fishing near lakes: ''I really prefer the river. I like when it is flooding, and moving. I need this movement'' ; ''between upstream and downstream, there has been a series of dams for 30 or 50 years. People there are used to fishing in stagnant water, dirty puddles'' . In contrast, Lake Vouglans's users appreciate the lake area and do not visit the Ain River . The confluence with the Rho ˆne River was also viewed as a damaged area especially for respondents living and working midstream . When drawing, people explained-although they recognized they were not experts in this field and had never visited the confluence areathat the river dynamics are damaged: ''To me, the more downstream, the more the river is polluted. The more upstream, the more we are in the clean part, the natural part…'' . Upstream respondents insisted a lot on the landscape quality, as shown in the following example: ''In our region, behind every meander, there is postcard scenery'' . They included a wide area around the Ain River corridor in their mental maps . When asked a question focused on the Ain River, such as ''If you were to show the Ain River to your friends, where would you take them?'', respondents mentioned falls or other lakes which are not directly parts of the Ain River waterscape . --- DISCUSSION --- Towards shared indicators of river quality Understanding lay criteria and public perceptions is essential in the current context of integrated and participative water management . Some indicators mentioned by all of our respondents are similar to the ones used by scientists on the Ain River, for example those relating to fish communities and algae. For fish communities, respondents mainly focused on the native fishes of the river, trout and graylings, which are the main issue discussed by Persat and Mallet et al. . Graylings are considered by river ecologists as an objective indicator of good water status because they require high water velocities, particularly clear waters and various habitats to complete their entire life cycle in a river. In our interviews, several of these scientific indicators were mentioned even if not precisely. Transparent water is related, in people's minds, to the river's good ecological condition . Indeed, respondents often mentioned algal bloom in the river as an indicator of the river's poor quality. They noticed it by focusing on the water color. This result is consistent with the study lead by Cottet 2013) with photo-questionnaires on the relation between ecological functioning and human perceptions. Lay people value clear water even though they do not link it to the low trophic status of the river , as experts do. In the interviews, it appears clearly that respondents highly esteem changes and diversity in the Ain River's waterscapes: they value changes in the water color and changes in the surroundings settings such as tree colors' or birds' sounds variation due to the seasons. In this way, the perceptions of residents seem to be close to the findings of scientific studies, which promote the restoration of transversal and longitudinal dynamics to bring back landscape diversity and biodiversity . But if respondents value changes, they do not desire disturbing events such as flood. Several studies showed that the lack of flooding is responsible for river degradation . In the past, increases in the water level and flooding were regular events on the Ain River. The dams now play a key role in flood retention. Residents value regulated flows and complain about the past flood events because they could have introduced disturbances in their everyday use of the riverbanks. Moreover, the groundwater issue, highlighted in the scientific literature by Wawrzyniak et al. , was rarely discussed in the interviews. Because their observations were mostly based on visible local signs, respondents perceived the river transversally ; they can consider locally its longitudinal dynamic but they have no idea of the vertical one. People consider waterscapes as being in a good state because they are scenic, accessible, and viewed as safe . As stated by Linton and Budds , respondents used ''context specific and non-scientific forms of knowledge'' to assess the waterscape quality which creates gaps between scientific and users' understandings. --- Different meanings of what waterscape quality should be: A challenge for river management The different types of river's users define and assess the waterscape's quality based on criteria which are likely to vary depending on the particular experiences people have with the river environment. Residents were a heterogeneous group. Some had lived on the Ain riverbanks for a long time and were able to describe its evolution over time. Other residents had a more distant relationship with the river: newcomers and younger people were often less familiar with the water environment. Since perceptions cause emotional processes binding people to their environment , and moreover in the context of integrated river management which recognizes the river basin socio-environmental complexity, both valuations are worth being taken into account to understand how people interact with their environment . The anglers we interviewed exercise management rights too through their official organizations that regulate fishing activities on defined sections of the rivers. They are therefore aware of scientific studies concerning water quality and environmental issues on the river's section they are in charge of. As such, anglers are key stakeholders in the implementation of an integrated watershed management and are often in direct contact with the main managers . ''River managers'' form a heterogeneous group too, especially in the upstream part of the river, where river management is fragmented. Each type of manager focuses on specific issues: preserving riparian forests , controlling the uses of the river , generating electricity , or enhancing the tourism potential of Lake Vouglans . Managers are also more likely to integrate the results of scientific studies to their practices to make them appear as ''rational'' and ''objective'' . In addition, each stakeholder has knowledge and skills that influence his/her ''socio-environmental world view'' . We highlight here that each stakeholder group is different and also that a same group of stakeholders can be heterogeneous. This can be explained by the fact that individuals have many and various interests, perceptions, attachments, experiences, and knowledge about the river. These five aspects also explain that some observations are shared regarding the waterscape's quality, in particular the depiction of a beautiful and healthy river. We consider that the above-mentioned factors play a key role to define a common ground on which the integrated management can be implemented. --- Rather a discontinuum than a continuum in stakeholders' perceptions Even though the integrated management implementation relies on a spatial continuity defined by the biophysical functioning of the river catchment area, the Ain River corridor remains fragmented in terms of management and public perceptions. Contrasted public perceptions of the river quality could generate tensions in the perspective of concerted river management. The river can be considered as composed by several ''hydrosocial territories,'' as defined by Boelens et al. : ''socially, naturally and politically constituted spaces that are created through the interactions amongst human practices, water flows, hydraulic technologies, biophysical elements, socio-economic structures and cultural-political institutions.'' At the corridor scale, three sections are distinguishable from each other. In the upstream section, the major issue river managers are dealing with is the water quality. Indeed, after a period of crisis for the rivers in the Jura area , the European Union, the national government, and the De ´partement are strengthening sanitary regulation and giving financial grants to improve the containment of farm effluents that were threatening the water quality. Even though the upstream Ain River may still suffer from the industrial heritage and of the reminiscence of the past pollution crisis, the Jura De ´partement is now developing the river and lakes as tourist attractions and building a new waterscape. The Jura De ´partement's tourism policy is not directly focused on the Ain River, but it mainly advertises the lakes and waterfalls that are now commonly appreciated as locations for leisure activities and are shown as destinations in most of tourism promotion campaigns . Most of the anglers interviewed from the upstream part of the river criticized the gap between the tourism development policy of the Jura De ´partement, which is focused on nature-based tourism, and the reality and efficiency of their efforts to protect the water quality. Lake Vouglans is subject to contradictory perceptions, depending on the location of the respondents. Mentioning the Lake Vouglans, respondents referred a lot to cultural and symbolic values usually assigned to rivers. In general, interviewees living, fishing, or working on the river rejected the lake and its landscape by referring to the hygienist paradigm which associates stagnant water with disease and death, while the river's flow and dynamics are related to life and good health . The users of the flowing parts of the river, especially downstream after the series of dams' disturbances, are not sensitive to the artificial lake's landscape aesthetics. Considering this waterscape as a whole, these respondents focus solely on its artificial aspect and take it for the most visible and radical transformation of the river. On the opposite, up-and midstream stakeholders like to consider the lake as a natural area since it is surrounded by forests and only accessible thanks to three artificial beaches. Known for its turquoise water, Lake Vouglans appears as the ultimate hybrid object and a key component of the Ain River's waterscape, being the biggest artificial modification of the riverbed and considered as a natural landscape at the same time. The dam itself is seen as a physical disruption in the river's flow and an environmental disturbance but also as an industrial and cultural heritage to value. The social and political dimensions of the floodplain area are clearly visible through a unique water management organization that was established in 1995: the ''local water commission.'' It is a decision-making organization which defines objectives for water management at a local scale, implemented through a Local Water Development and Management Plan. This policy aims to be collective and consultative in order to reconcile the different uses of the river while protecting its ecosystems . The downstream part of the river appears to be the most developed and shared ''hydrosocial territory.'' Since public perceptions of the lower Ain valley are quite homogeneous in our survey, we can assume that the sharing information process implemented show some positive results locally. Moreover, in the lower Ain basin, science and water management are more and more intertwined which also helps strengthening the step. Indeed, most of the analyses of the Ain River's ecological status focus on the lower basin since it is one of the last freely meandering rivers in France . The vicinity of Lyon, which counts numerous universities and research centers, also explains the concentration of scientific work, especially through the Rho ˆne Basin Long Term Ecological Research project , an interdisciplinary research organization whose role is to be an in situ observatory on the Rho ˆne River and its tributaries. On the contrary, the upper Ain River valley is a more remote area and its management remains split. --- CONCLUSIONS Our study examined the social dimensions of the riverscape's quality assessment on the Ain River. We focused on questioning the socio-ecological processes that shape the river corridor to understand the river's waterscape at a local scale, and including residents and river users as stakeholders, whose perceptions ought to count as much as ''scientific'' perspectives in the context of the integrated water management. The findings show that users rely mostly on visual criteria to assess the river quality. Their assessment strongly mobilizes the senses and is shaped by an emotional attachment to the river linked to everyday uses of the river. Some of the indicators mentioned by our respondents were shared among stakeholders' groups , whereas others were really specific to a group or interpreted in different ways . Assessing the contrasts between public perceptions of the river quality can help improve the communication of water managers towards the general public and give insights for scientists to popularize their work. On the downstream Ain River, efforts to deal with this issue are made. For example, each year, during the ''Festival of Science,'' researchers and water managers collaborate and meet with residents to share information on the Ain River hydrosystem and its socio-environmental history. Our results highlight that perceptions are various, according to the types of stakeholders that we interviewed but also within the different groups. Therefore, it appears to be difficult to categorize stakeholders. Indeed, the stakeholders we met did not belong to only one group , but they had ties with two or the three groups at the same time. Considering the social dimensions in riverscapes' quality assessment makes it more complex although this proximity between groups of stakeholders can play a role in making easier the sharing information process at the core of the integrated water management. In addition, we found that perceptions of the waterscape quality issue vary spatially along the upstream/downstream continuum. When perceiving the Ain River, location matters because our respondents considered very specific areas that they are attached to. The importance of the local scale and the attachment to local places show how naturally, politically, and socially constructed the river is, which can be considered as a layout of ''hydrosocial territories.'' The specificity of our research is to include the whole river corridor and to consider its waterscapes to show how the ecological and social dimensions of the river are linked in determining river quality. It allows us to draw up a panorama of the ways water managers, anglers, and residents consider their local waterscapes. The results are dense and various as being collected in very distinct environments but they are of interest for stakeholders in charge of implementing cooperation between the lower and upper Ain River basin so that they can know each other's interests better. Therefore, our study confirms that if the river is considered as a corridor by water managers and scientists, it becomes a diverse and plural environment if residents and users perceptions are taken into account. --- e-mail: [email protected] Marylise Cottet is a researcher in Geography at the CNRS , member of the University of Lyon and the research lab ''Environnement Ville Socie ´te ´'' . She is a specialist of the relationships between societies and aquatic environments , with a special focus on stakeholders' perceptions and attitudes, as well as landscape assessment. Her works are led in the context of participative and integrated management of environments. She recently considered issues such as ecological restoration of rivers or biological invasions. Address: CNRS UMR 5600 Environnement Ville Socie ´te ´, ENS de Lyon, 15 Parvis Rene ´Descartes, University of Lyon, 15 Parvis Rene Descartes, BP 7000, 69342 Lyon Cedex 07, France. e-mail: [email protected]

Integrated water resources management, promoted in developed countries, obliges to integrate social aspects with hydrological and ecological dimensions when assessing river quality. To better understand these social aspects, we propose a mixed-method to study public perceptions of an impounded river. Since the 1930s, the management of the Ain river (France) has been challenged by conflicts about the river's quality. We surveyed (using interviews and mental maps) various stakeholders along the river. The results based on textual and content analysis show variations in the public's perceptions according to the residence area, practices, and the degree of emotional attachment to the river. The assessment of environmental quality needs to take into account different types of knowledge, sometimes conflicting, that reveal and shape the variety of waterscapes which compose the Ain River. The social dimensions highlight integrated water management's inherent complexity by considering the river basin as a place to live and by involving multiple stakeholders.

Background In resource-poor settings where health systems are inefficient, research has shown that community mobilization can be a useful strategy for improving maternal care of women who test negative for Human Immunodeficiency Virus [1,2]. Similar evidence for HIV positive women, however, is still lacking despite them being a more vulnerable given their HIV status [1][2][3]. Community mobilization is defined as any maternal health promotion strategy which makes use of indigenous resources, peer support, and/or actively involves community members in designing and implementing maternal health initiatives. Specifically, community mobilization in this paper refers to one or more of the following three principles: a) peer support e.g. support from peers in the form of financial, psychological, social support; b) utilization of indigenous resources e.g. trained Traditional Birth Attendants ; c) community involvement which is seen through collaborative partnerships between health professionals and communities in designing and implementing maternal health initiatives [4][5][6]. Aside from the lack of evidence on the effect of community mobilization on maternal care for HIV positive women, there is a lack of evidence on local stakeholders' own perspectives of community mobilization vis-à-vis maternal health care [7,8]. Such evidence is necessary to design locally suitable and feasible maternal care programs for women living with HIV in resource-poor settings. Therefore, the aim of this study is to explore the processes and relevance of community mobilization in the promotion of maternal health care among HIV positive women in resource-poor settings using Mfuwe, Zambia as a case study. We explore the local perceptions of community mobilization and how HIV positive women interpret its relevance. For this purpose, we use qualitative data collected in Mfuwe, Zambia. Mfuwe makes a good case study because it is a resource-poor rural area with one of the highest HIV rates and HIV-related maternal deaths in Sub-Saharan Africa [9]. --- Theoretical framework Our study makes use of the social psychological framework known as "community health competence" [1,10]. The framework is already widely used in HIV research to emphasize the role that informal community group participation plays in HIV response [2,4,11]. In this paper, we apply the framework on maternal health of HIV positive women, i.e. the framework guides our analysis and presentation of the results. "Community health competence" is a conceptual framework which enables researchers to assess how health services produce health-enhancing environments for local people by relying on "local culture, context and local survival strategies" and collaboration with external experts [12]. This framework emphasizes dialogue and horizontal partnership between indigenous and external efforts in creating health-enhancing opportunities [12,13]. The framework holds that dialogue between peers, reliance on readily available resources and active collaboration with external experts facilitate the development of heath-enhancing environments more sustainably [13]. This is because the dialogue and collaboration allows vulnerable people to critically reflect on their challenges and strengths [11]. The framework indicates that in creating "community maternal health competence" for HIV positive women, the following conditions should be evident: Peer-support should be seen to serve as a maternal health-enabler through sharing of maternal health related knowledge among HIV positive women; There should be recognition and use of available "indigenous individuals and social skills" in responding to maternal health needs of HIV positive women in community; Communities should develop links and work together with external experts in "the public and Non-Governmental Organization sectors" to ensure active community-involvement in planning and implementation of maternal health initiatives . In this paper, we structure our analysis based on the three conditions espoused in this framework by assessing how peer support, use of indigenous resource and community involvement either promote or hinder maternal health care for HIV positive women in Mfuwe. More specifically, the framework is used to structure the analysis on how community mobilization, specifically its three components , either facilitates or hinders promotion of maternal care for HIV positive women in Mfuwe, and also highlight the process through which this is achieved. --- Methods --- Setting and target population Our qualitative study was conducted in February of 2016 in Mfuwe, a rural district in Eastern Zambia. Mfuwe is a rural settlement located in the South Luangwa national park in the Eastern province of Zambia. There exits only one hospital in Mfuwe catering for a population of over 207,000 people spread roughly around an arear of 370 km 2 . The settlement retains some of the highest HIV rates, including very high maternal and under five mortality rates in the country [14]. It is for this reason that Mfuwe was selected as a case study. Our target population were HIV positive women who had experienced one or more of the components of community mobilization namely: peer support, utilization of indigenous resources, and community involvement. --- Sampling method In order to select our sample, we relied on purposive sampling technique by establishing contact with two Zambian-based organizations which were working with HIV positive women in promoting their maternal health care. The two organizations had contact with women who were indirect and direct beneficiaries of the services of these two organizations. Participants were selected with the help of the two local NGOs. Women who met the criteria and expressed interest to participate in the study, were invited to participate. The women all came from different areas/villages within Mfuwe. In order to increase the diversity of opinions expressed by participants and to allow for varied discussions, the diversity of participants was ensured through diversifying the age, educational level, marital status, and employment status of participants. --- Ethical approval We obtained written ethical clearance from the National Health Research Authority of Zambia. Informed consent in writing was sort from the participants before participation, and at the same time, participants were clearly informed of their right to discontinue their participation in the interview at any point should they wish to. --- Data collection method Data collection consisted of three Focus Group Discussions all involving 37 HIV positive women who had experienced one or more of the components of community mobilization. The first FGD focused on peer support and had 13 participants, the second one on utilization of indigenous resources had also 13 participants, and the last one on community involvement had 11 participants. --- Guide for interviews All FGDs lasted between 90 to 100 min. The first author, a Zambian national conducted all the FGDs in Chichewa and English was used where possible. Participants were tracked through the discussion using numbers assigned to them in order to ensure confidentiality and also allow for easy follow up during discussions. A topic guide was used during FGDs but at the same time, discussion of emergent areas of interest to the participants was allowed. In line with the framework presented above, we structured a topic guide that endeavored to elucidate how peer support, use of indigenous resource and community involvement either promote or hinder maternal health care for HIV positive women. This was done through asking questions that allowed participants explain the different ways they experienced the different components of community mobilization, how useful they found the components and what the challenges were. We also ensured that follow-up questions were asked for clarification purposes, and to also encourage respondents to expand on some of their answers. All FGDs were digitally recorded. --- Analysis We first transcribed the data and then translated them into English, after which, we used the software NVivo 10 QSR International to conduct thematic analysis [15]. By relaying on our theoretical framework, we focused our attention on assessing how peer support, use of indigenous resource and community involvement either promote or hinder maternal health care for HIV positive women in Mfuwe. For this, we identified codes using NVivo. Each specific component of community mobilization gave rise to basic themes that highlighted several and diverse ways in which community mobilization either promoted or hindered maternal care. These basic themes were then systematically clustered to form more structured and elaborate organizing and global themes that show the diverse ways community mobilization prompted and hindered maternal care. After re-reading and refining the themes, we identified 20 organizing themes and 6 global themes . --- Results Our respondents varied in age, marital status and economic activity. Details of the socio-demographic characteristics of our respondents can be found in Table 2. We start by presenting the coding frame after which we give a narrative account of the results. We relied on thematic analysis as shown in Table 1 to assess how the three different components of community mobilization promote or hinder maternal care for HIV positive women in Mfuwe. --- Peer support In an effort to fight different challenges that HIV positive women faced during maternity, most women in the FGD on peer support refer to peer-support as a safe space for dialogue amongst peers, which enables sharing of helpful maternal health-related information specific for HIV positive women , and challenge misconceptions regarding HIV and pregnancy. The dialogue with peers also enabled these women to take ownership of previously alien HIV treatment and maternal health information. Some of these women also pointed out that the peer-support within the women's groups in the villages was based on empathy and real friendship, a factor which was necessary to balance their vulnerability as they previously felt disenfranchised and marginalized within their own communities due to their HIV positive status. This is especially emphasized in some quotes from some of the women in the Mfuwe HIV/AIDS women's' group: "It is easy to see that for a long time, people in this village were stigmatizing and discriminating against us, but now because we speak with one voice, we are able to confront this evil" Partciapnt:3. In Mfuwe, professional maternal care facilities were lacking [16], peer support was thus viewed as a useful component of maternal care. Mfuwe is faced with several challenges that include hard-to-reach health centers, poor transport systems, and lack of adequate health workers. According to the majority of the women, challenging these limitations through peer support allowed them to develop agency to foster improved care for themselves and also to assert their needs in relation to "what is important to us as a group is that we remain supportive to each other through different forms. I have personally benefited emotionally and also physically because my colleagues where present to offer me good nutrition and encourage me to take my medication throughout the process" Participant 9. Although peer support was largely characterized as a source of maternal health care support, two participants highlighted some shortcomings associated with peer-support. Specifically, peer-support was said to reinforce misconceptions, superstition and stigma regarding professional maternal care services and sexual reproductive health in general. These respondents pointed out that, through their interaction with other HIV positive women, they developed suspicions regarding condom use, and antiretroviral treatment, which they argued was against their traditional values. They observed that negative maternal outcomes from their peers robbed them of confidence and hope for better maternal outcomes for themselves. This resulted in them losing the agency to challenge maternal health obstacles present in their communities. "Culture is very important to us, and we are now losing it through these groups. We are adopting foreign ways of doing things and now they are introducing drugs that we don't know about" Participant 1. "They are now discouraging us from living our sexual lives the way we have been doing over the years. They are busy talking about safe sex and some of my colleagues and I within the group have had to challenge some of these recommendations because they put our marriages at risk. How can a woman tell her husband to use condoms? That is disrespectful to him and against our culture" Participant 13. --- Use of indigenous resources Given the limitations in the health system in this rural area, the majority of women in the FGD on the use of indigenous resources intimated that TBAs played a vital role in ensuring quality and affordability of maternal care. Respondents reported that TBAs played a huge role in provision of supportive services to HIV positive women such as social, psychological and emotional support, including referrals to health centers. "They continue to offer us emotional and psychological support. I remember when I just came out of labor and was brought home; it is Mrs. X our community TBA who took care of me. I was feeling very depressed not knowing whether my child will also become positive, but she supported me and encouraged me that all will be well. And I always thank her for that" Participant 23. Most respondents praised TBAs for providing useful sexual reproductive health information, encouraging HIV positive women to attend antenatal, childbirth and postnatal care in facilities, as well as supporting HIV positive women to adhere to treatment. This is captioned in quote from some respondents who pointed out that: "After she discovered that I was HIV positive, she explained to me the dangers of giving birth at home and as such, encouraged me to start going for antenatal and to give birth at the clinic" Participant 17. "The local TBA always checked on me to make sure that I was taking my drugs. I felt very cared for" Participant 14. It was also clear however that a few other respondents were critical of TBAs. Particularly, three of them were concerned about how effective the TBAs were in the community since trained TBAs did not possess necessary skills and medical supplies to conduct caesarian births and handle other complications such as sepsis, hemorrhage etc. "it would have been much better if TBAs could operate on me and allow me to give birth using caesarian birth. But they do not have the skills. This is why we go to the clinic. HIV is very problematic and weed to ensure that is perfect care for people like us" Participant 19. A few other respondents were also troubled by the governments' directive to avoid TBAs, including trained TBAs, in preference for clinical care. They stated that although desirable, clinical care was impractical in their case since most clinics were remotely located, overcrowded and lacked essential medication. They also pointed out that the staff in clinics were unfriendly and did not provide quality care. "nurses are even worse. They always angrily shout at us and show no sympathy for our situation" Participant 20. --- Community involvement During the FGDs, most participants in the FGD on community involvement stated that they specifically collaborated with experts on the following two maternal health initiatives: the "Zambambulance" initiative and the 'waiting shelter' project. The Zambulance which is a joint project between the community and the local clinic actively involved local people during planning and implementation. Local drivers volunteered on a rolling basis to transport pregnant women to health facilitates for antenatal, childbirth and postnatal care. Most of the respondents stated that the Zambulance initiative was responsible for increasing access to maternal health services, including access for several HIV positive women who would have otherwise been left unattended to due to infrastructural barriers that existed in Mfuwe. "Our clinic doesn't have an ambulance, and to make matters worse, it is very far from our village. This is why we are using the Zambualnce to transport each other to clinics. Women who are HIV positive have been given priority" Participant 28. The creation of "waiting shelters" close to clinics by local people to complement the shortage of bed spaces in the health facility was also hailed for improving access and affordability to maternal care, including care for HIV positive women. Local people while working with experts have set up "waiting shelters" which provide informal support to women in the form of nutrition, psychological and other services necessary for women about to give birth or who recently gave birth. Most respondents praised the manner in which local people and experts collaborated on this idea which proved useful to their community. "Unlike what happens in other villages, our village has done well in collaborating with the clinic, nurses and doctors to bring about the waiting shelter. I was there for six days after giving birth and the volunteers were very nice to me" Participant 29. Two other participants however criticized these initiatives by branding them tokenistic. They claimed that although collaborative initiatives were well-intended and with great potential, their successful implementation was constrained by the fact that villagers sometimes found themselves on the wrong side of the power-relations. Specifically, powerful NGOs always dictated the direction of the projects while suggestions from locals were often looked down upon. Furthermore, poverty, very few economic opportunities for volunteers and lack of wider political support negatively affected possibilities of scaleup. Respondents asserted that some initiatives remained symbolic and superficial and did not address the major root-causes of poor maternal care for HIV positive women. "It's good that we have such initiatives but to be honest, the problems in this village are deep-rooted in poverty and lack of jobs for most of the volunteers and us. So what can a poor woman like me say to influence the activities? We have not really addressed the real problems, that is why sometimes you see that we have no food in the shelters and volunteers are fewer these days" Participant 37. --- Discussion In this study, we assessed the ways through which community mobilization via its three components promote or hinder maternal care of HIV positive women in Mfuwe. Our findings suggest that Mfuwe, a community faced with a health system that has critical material, symbolic and institutional limitations, does have within its social strides several unrecognized and sometimes ignored "portfolios of assets" [2]. These portfolios have over the years formed the cornerstone of maternal health care for women living with HIV [11]. The mainstream narrative has traditionally reflected an embodiment of western-precipitated and 'universally optimal' solutions that usually include scaling up of 'scientific' and biomedical approaches as a basis for improving maternal care [17]. This narrative has obscured discussion on what the relevance of community mobilization has been in maternal care of HIV positive women in resource poor settings [2,18]. In line with the principles of the maternal community health competence framework, our results indicate that building maternal health competence for HIV positive women in local settings requires formal recognition of roles played by experts as well as local actors. This means taking full cognizance of the shortcomings and strengths of both experts and local strategies while paying attention to local context. The results in this paper show that the three components of community mobilization each have strengths and shortcomings in the context of maternal health care of HIV positive women in Mfuwe, Zambia. --- Peer support For example, peer-support was crucial in providing much needed empathetic social, psychological and emotional supportive services to HIV positive women who in most cases faced stigma due to their HIV status and sometimes suffered the negative consequences of an inefficient health system. Further, by engaging in dialogue with their peers, HIV positive women were able to develop agency and collectively challenge common obstacles to maternal care. At the same time, although peer support generally seems to be a useful maternal health care enabler, it can also act as a negative force. Particularly, it was evident from some respondents that by engaging with peers, several health-inhibiting and harmful sexual and reproductive misconceptions, superstition and stigma were reinforced. This inevitably highlights the challenge that characterizes common practice in public health circles where maternal health initiatives such as peer-support are viewed as a binary . This practice obscures variety [11]. Peer-support, especially if aimed at maternal care of HIV positive women can simultaneously be a force for good and bad. Although for most women the advantages of peer-support seem to outweigh the disadvantages, ignoring its shortcomings would however be counterproductive [2]. --- Indigenous resources Another fact worth noting from our findings is how indigenous resources particularly trained TBAs are characterized in Zambia, how they are used to solve local maternal care challenges and their resulting shortcomings. In the absence of a well-functioning professional health care system, HIV positive women have continue to rely on historically and culturally established local assets such as trained TBAs which have been passed on from generation to generation [17]. Trained TBAs are characterized as useful by HIV positive women in the provision of 'soft services' that include treatmentadherence-support, provision of maternal health information, challenging stigma, discrimination and patriarchy, logistical support, nutritional and referral services to facilities. It is also clear that trained TBAs have their limitations reflected in their lack of appropriate skills and resources to tackle pregnancy complications and effectively promote PMTCT. This is why the government of Zambia has outlawed their practice [19]. The action by the government of Zambia policy on TBAs), however, may worsen rather than improve the condition of the local people of Mfuwe as professional health care is either lacking or riddled with limitations [19]. This is in line with what other studies from different parts of Africa have shown, which is that TBAs form a useful link of care in African societies, thus there is more to benefit from relying on them rather than excluding them from the line of care [20]. --- Community involvement Further, we showed how local people in Zambia characterize and operationalize community involvement in their effort to promote maternal care. Here we established what the community health competency promulgates; which is that local communities often possess useful portfolios which need to be scaled up through horizontal collaboration with experts. Specifically, communities in Mfuwe, Zambia were actively involved and collaborated with external professionals to promote maternal health care of HIV positive women mainly through two distinctive strategies, namely the "Zambambulance" initiative and the 'waiting shelter' initiative. This strategy was important in ensuring that HIV positive women who would have otherwise given birth at home were attendant to by professionals in order to promote PMTCT. The two initiatives also had significant local-buy-in and were considered highly useful by the locals. This observation is in consonance with what Renedo & Jovchelovitch and Campbell and Cornish in their studies on African communities show which is that by collaborating and "strengthening indigenous responses", there is increased propensity for HIV positive women to embrace the potential benefits of a given maternal health care strategy. This therefore calls for enhanced recognition on the part of policy makers, NGOs and other stake-holders of the role that partnership plays in promoting enhanced maternal care of HIV positive women. That notwithstanding, in the process of promoting partnership with locals, certain risks seem eminent as expressed by our respondents. There is always the risk of reinforcing tokenism and establishing a base for the struggle of powers between the more-powerful voices and the weaker voices . Such events as Campbell and Cornish observe usually result in situations where more powerful factions invariably dictate the direction of initiatives whereas the poor and vulnerable local people are used only as 'rubberstamps'. This means that it is imperative to achieve an optimal stage where expert and indigenous factions can mutually dialogue, and "proactively and consciously develop spaces for consensualization" in promoting partnership for purposes of improving maternal care of HIV positive women is not an easy one [3,21]. This is key in assuring local buy-in, sustainability and success of a maternal health care initiative. Active involvement of locals provides the momentum and agency for local people to define in their own terms what is important to them regarding maternal care and the best way to achieve the goals of maternal care efforts in their given context [22]. This process effectively shades light on what is locally feasible, desirable and the processes which are contextually-suitable to enhance maternal health care for HIV positive women. Jovchelovitch states that it is folly to ignore local strengths and partnerships, an action which she intimates has become a toxic cornerstone of mainstream maternal health care strategies. Externally-defined local people's needs and implementation strategies take away their agency to change their situation and discourages ownership of initiatives. This does not however mean that external support is irrelevant; on the contrary, external support is important in several ways . local communities are faced with limitations , this is why we contend that in a quest to improve maternal health care of HIV positive women, horizontal collaboration and "strengthening of indigenous responses" rather than obscuring them seems more profitable. This further supports and strengthens the community health competence's claim that there is more to benefit from building on local strategies through collaboration rather than obscuring them. A synthesized view of all the three components Drawing inferences from the manner in which the three components of community mobilization promote/hinder enhancement of maternal care of HIV positive women, it appears that the change process is neither linear nor replicable across different social settings. It embodies "variety, complexity and fragmentation" . Social settings in which HIV positive women reside differ across time and space, and that is why the act of uncritically adopting grand conclusions of maternal health initiatives with the aim of replication seems disingenuous. For example, just because the "Zambulance" initiative works in Zambia does not necessarily mean it will work in other countries as well. This is in line with what Foucault postulates that pathways for social transformation across time and space are complex, and failure to take into account this complexity is counterproductive. It is because of this observation that community mobilization's main principle of promoting "a pastiche of context-specific tactics and homegrown strategies" as a way of promoting maternal care of HIV positive women seems valuable . This means that the understanding and application of community mobilization through its three components prioritizes social contexts stands in contradiction with mainstream's characterization of maternal health initiatives as "onesize-fits-all". All in all, our findings are in line with what the community health competence framework stands for. Specifically, the stakeholders in our study believe that public health initiatives that genuinely allow for local participation and reliance on indigenous portfolios are likely to promote sustainable access to health care. As suggested by the stakeholders in our study, the core principles of the community health competence produce social spaces for brainstorming on strategies that are practical and feasible by relying on already existing community resources and collaboration with experts. Consequently, through the community health competence framework, our study confirms the benefits of paying attention to diverse ways in which community mobilization hinders and promotes maternal health of HIV positive women in a very context-specific way. This is particularly important for policy as it will allow for scale-up on strategies that promote care for HIV positive women and mitigation for those that hinder maternal care. --- Limitations We also acknowledge some potential limitations associated with this study. Firstly, our findings are based only on the views of HIV positive women residing in a single province out of the ten provinces in Zambia. This fact limits the variety of experiences with community mobilization in Zambia in general. However, we argue that this study provides useful insights and the first step in understanding the different ways community mobilization hinders/promotes maternal care of HIV positive women in resource-poor settings. --- Conclusion We set out to assess the ways through which community mobilization via its three components promotes/hinders maternal care of HIV positive women in Mfuwe, Zambia. Given the material, symbolic and institutional limitations that define the health system in Zambia, community mobilization was a dominant feature in maternal health care response of HIV positive women in rural Zambia. Specifically, it was shown that community mobilization was largely and often characterized as a force for good and sometimes for bad . In line with the community health competence, our evidence suggests that community mobilization needs to be factored into maternal health care policies for HIV positive women in resource poor settings either to optimize their potential benefits or to minimize their potential harm. Within their social fabrics, resource-poor communities often contain "unrecognized and sometimes ignored portfolio assets" which are contextually-feasible and have been used for generations to promote maternal care for HIV positive women. Ignoring these portfolios or pathologizing local knowledge systems may be self-defeating. It is also worth noting that the different components of community mobilization have different effects on maternal care efforts of HIV positive women in different social settings, which is something that needs to be accounted for. Further, we argue that maternal care change-process for HIV positive women is neither linear nor replicable across time and space. It is characterized by "variety, complexity and fragmentation" . This type of changeprocess consequently questions the legitimacy of common practice in mainstream public health circles to 'replicate' and establish "one-size-fits-all" maternal initiatives for HIV positive women based in different settings. This act of romanticizing these uncritical grand-conclusions and 'replicable' maternal health strategies is unrewarding in the real world. This is why we argue that embracing the complexity, variety and fragmentation by relaying on community mobilization which prioritizes "a pastiche of context-specific tactics and homegrown strategies" as a way of promoting maternal care of HIV positive women seems valuable . --- --- --- --- Competing interests Milena Pavlova is a Section Editor for BMC Health Services Research. The other authors declare that they have no competing interests. ---

Background: Research has shown that community mobilization is a useful strategy in promoting maternal care of HIV negative women in resource poor settings; however, similar evidence for women living with HIV is missing. Therefore, in this study we provide this evidence by exploring the relevance of community mobilization in the promotion of maternal health care among women living with HIV in resource-poor settings by using Mfuwe, a rural district in Zambia as a case study. Methods: By relying on Focus Group Discussions (FGDs), qualitative data were collected from Mfuwe, Zambia. The data were digitally recorded, transcribed and later translated from CheChewa (local language) to English. We relied on Thematic analysis to analyze the data. Results: By focusing on community mobilization, our results showed that within their social fabrics, resource-poor communities often contain unrecognized and sometimes ignored strategies which are contextually-feasible and have been used for generations to promote maternal care for HIV positive women. Further, it was evident that although the three forms of community mobilization were largely and uniquely useful in promoting maternal health care of women living with HIV, they also presented unique and various shortcomings.We demonstrated that community mobilization was largely and often characterized as a force for good (e.g. providing support, improving access to maternal care etc.) and sometimes for bad (e.g. reinforced harmful misconceptions, superstition and stigma). Thus we recommend that community mobilization needs to be factored into maternal health care policies for HIV positive women in resource poor settings either to optimize their potential benefits or to minimize their potential harm.

authorities to guide immunization efforts among vulnerable populations in Spain and in other countries with widespread access to vaccines. We analyzed the association between a socioeconomic deprivation index score based on place of residence and COVID-19 vaccination coverage 6 months after the start of vaccine rollout among adults >40 years of age living in urban areas of Catalonia. Subsequently, we analyzed the associations between SDI score and COVID-19 infection, hospitalization, and death, before and after the start of vaccine rollout. The Clinical Research Ethics committee of Fundació Institut Universitari per a la recerca a l'Atenció Primària de Salut Jordi Gol i Gurina approved this study , with no required written consent from participants. --- Methods --- Study Design and Data Source We conducted a population-based cohort study during September 1, 2020-June 30, 2021, using primary care data from the Information System for Research in Primary Care database, standardized to the Observational Medical Outcomes Partnership Common Data Model . SIDIAP contains pseudoanonymized electronic health records from ≈75% of the population in Catalonia, which has ≈7.5 million inhabitants, and is representative in terms of age, sex, and geographic distribution . SIDIAP includes data on sociodemographics, diagnoses, laboratory tests, medication use, and deaths. In addition, SID-IAP has been linked to the Catalan public health vaccine registry and to a population-based register of hospital discharge records from public and private hospitals of Catalonia . --- Study Participants We included 2,297,146 adults 40-110 years of age registered in SIDIAP as of September 1, 2020, after excluding those with <1 year of medical history available , those with a previous COVID-19 infection , those living in nursing homes and in rural areas , and those with missing data on SDI . We included adults >40 years of age because those younger were not generally eligible for vaccination before mid-June 2021. We excluded persons living in rural areas, which included municipalities with <10,000 inhabitants and a population density <150 habitants/km 2 , because information on SDI was unavailable for these areas. We identified persons with a previous COVID-19 infection using SARS-CoV-2 positive tests or clinical COVID-19 diagnoses because SARS-CoV-2 tests were restricted to severe cases during the first months of the pandemic in Spain . We used Systematized Nomenclature of Medicine codes to identify COVID-19 diagnoses . To assess inequalities in COVID-19 vaccination coverage 6 months after the start of vaccine rollout , we restricted our analyses to persons with complete follow-up . We analyzed inequalities on COVID-19 outcomes for 2 time periods: 3 months before and 1-6 months after the start of vaccine rollout. For each period, we followed participants until the occurrence of the outcome of interest, end of study period, exit from database, or death, whichever occurred first. The period 3 months before vaccine rollout was September 1-December 26, 2020. The period 1-6 months after vaccine rollout was January 27-June 30, 2021; we excluded patients with a COVID-19 infection or lost before January 27, 2021 , from analysis. --- Outcomes We identified persons vaccinated against COVID-19 as those who had received a dose of any COVID-19 vaccine: BNT162b2 mRNA , mRNA-1273 , ChAdOx1 nCoV-19 , or Ad.26. COV2.S . The date of vaccination was the date of the first dose administration. We identified COVID-19 infections based on a positive SARS-CoV-2 antigen or reverse transcription PCR test, using the test date as the date of infection; we considered the first infection per person. We defined COVID-19 hospitalizations as hospitalizations with a positive SARS-CoV-2 test result between 21 days before and 3 days after the date of admission. We defined COVID-19-related deaths as deaths occurring <28 days after the date of infection. --- Variables We measured SDI score using the Mortalidad en áreas pequeñas españolas y desigualdades socioeconómicas y ambientales deprivation index . The MEDEA index was calculated for census tract urban areas using information related to 5 indicators from the 2001 national census in Spain. We linked the MEDEA deprivation index to each participant's most recent site of residence and categorized it into quintiles of socioeconomic deprivation, with the first quintile representing the least deprived and the fifth the most deprived area. We extracted age in years, sex, nationality by the country's geographic region, and comorbidities recorded before study start that were identified using Systematized Nomenclature of Medicine codes . We categorized age into 2 groups: >65 and 40-64 years . --- Statistical Analysis We described participants' characteristics at baseline and by vaccination status, COVID-19 infection, hospitalization, and death over study follow-up period; we used counts and percentages for categorical variables and median and interquartile ranges for continuous variables. In accordance with information-governance requirements intended to protect confidentiality, we reported results with <5 persons as <5 rather than specific numbers. We also compared baseline characteristics of persons with and without missing data on SDI, and those with and without complete followup, using standardized mean differences . We considered an absolute SMD >0.1 to be a meaningful difference in the distribution of a given characteristic between the groups compared . We generated charts of weekly cumulative vaccination coverages and incidence rates of COVID-19 infection, hospitalization, and death during September 1, 2020-June 30, 2021, by SDI quintile and age group. We used R version 4.1 for data curation, analysis, and visualization. To assess the association between SDI quintile and nonvaccination, we performed crude and adjusted logistic regression models and calculated odds ratios with 95% CIs by age group. We included persons with complete follow-up for these analyses . To assess the association between SDI quintile and COVID-19 infection, hospitalization and death, we performed crude and adjusted Cox proportional-hazards models and calculated hazard ratios with 95% CIs by age group and period using the 3 months before and 1-6 months after vaccine rollout datasets. We visually inspected log-log survival curves to check the proportional hazard assumptions for the variables included in the models. We did not estimate models in which the number of events per SDI quintile was <5. Models were relative to the least deprived quintile and adjusted by age, sex, and nationality; we developed a directed acyclic graph to guide our modeling strategy . Of note, rates of hospitalization and death were estimated among the total population rather than among those infected with COVID-19 to prevent collider bias . In addition, we performed 3 sensitivity analyses. First, we reestimated our models for vaccination coverage after excluding persons with a COVID-19 infection during follow-up, because they were not eligible for vaccination until 6 months after the infection. Second, we reestimated our models for COVID-19 outcomes restricting our analyses to citizens of Spain because the proportionality assumption was violated for nationality and all the COVID-19 outcomes. Third, we estimated socioeconomic inequalities on COVID-19 outcomes for the time period 3-6 months after the start of vaccine rollout, March 27-June 30, 2021, after excluding those with a COVID-19 infection, deceased, or lost before March 27, 2021 . --- Results Among the 2,297,146 participants included, most were 40-64 years of age , were citizens of Spain , and had few comorbidities . Persons living in more deprived areas were younger, less frequently citizens of Spain, and had more comorbidities than those living in the least deprived ones . Persons excluded because of missing data on SDI were slightly younger , more frequently from Europe and North America, and less frequently from Asia and Oceania than those without missing data on SDI . Compared with those in the vaccine coverage dataset , persons with incomplete follow-up were older , were less frequently citizens of Spain , and had more comorbidities . For 51.5% of that population, death was the reason patients were lost to follow-up. --- Vaccination Coverage and COVID-19 Infections, --- Hospitalizations, and Deaths at Study End Six months after vaccine rollout, among those with complete follow-up , 82.0% had been vaccinated. Vaccination coverage was highest among older persons , women , those living in the least deprived areas , and those with comorbidities . Vaccination coverage was particularly low among persons of other nationality: ≈60% for those from western Europe and America and <50% for those from Africa, Asia, and Oceania and from eastern Europe. During September 1, 2020-June 30, 2021, a total of 134,966 persons were infected with COVID-19; of those, 16,921 were hospitalized for COVID-19, and 1,881 died . Cases of COVID-19 were highest among younger persons, 40-49 years of age , followed by those >80 years of age ; COVID-19 was also more common among migrants from Central and South America and Africa than for citizens of Spain and in the most deprived areas than the least deprived . Conversely, hospitalizations were highest among the eldest , men , those from Central and South America , those with comorbidities , and those from the most deprived areas . Death rates were overall similar by sex, nationality, and SDI quintile but were higher among the eldest and those with comorbidities. --- Inequalities in COVID-19 Vaccination and Infection --- Trends in Vaccination Coverage and COVID-19 Infection, --- Hospitalization, and Death over Time Among participants >65 years of age, vaccination coverage over time was similar across all SDI quintiles, whereas in those 40-64 years of age we observed a pattern of lower vaccination coverage in areas with increased socioeconomic deprivation . Regarding COVID-19 outcomes, IR of infection peaked in mid-October 2020 and mid-January 2021 and plateaued after March 2021. We observed a similar pattern for COVID-19 hospitalizations and deaths. Infection rates were higher among those 40-64 years of age, whereas hospitalization and death rates were higher among those ≥65 years of age. Overall, we observed a pattern of higher IR of infection and hospitalization in areas with increased socioeconomic deprivation among both age groups for the IR peaks. As for COVID-19 deaths, we found those living in the most deprived areas had the the higher IR for those peaks, without a clear pattern of increased IR with increased socioeconomic deprivation. After March 2021, differences by SDI quintile for all COVID-19 outcomes were less obvious, because IR of infection, hospitalization, and death were much lower. --- Associations between SDI Quintile and Nonvaccination Compared with persons >65 years of age living in the least deprived areas , those living in Q2, Q3, and Q4 areas had a lower probability of nonvaccination. In Q2 areas, OR was 0.97 ; in Q3 areas, 0.93 ; in Q4 areas, 0.90 ; and in Q5 areas, 1.01 . Conversely, among those 40-64 years of age, we found increased odds of nonvaccination for persons living in more deprived areas. For instance, when compared with those living in Q1 areas, OR of nonvaccination was 1.01 in Q2 areas, 1.08 in Q3 areas, 1.11 in Q4 areas, and 1.33 in Q5 areas. Sensitivity analyses excluding persons with a COVID-19 infection before vaccination were consistent with our main analyses . --- Association between SDI Quintile and COVID-19 Outcomes Three months before vaccine rollout, we observed a pattern of increased HR of COVID-19 infection in more deprived areas in both age groups . For example, among those >65 years of age, HR was 1.12 for those living in Q2 areas, 1.19 in Q3 areas, 1.26 in Q4 areas, and 1.54 in Q5 areas. A similar pattern was seen for COVID-19 hospitalizations among both age groups, with larger inequalities. Among persons >65 years of age, HR was 1.25 for those living in Q2 areas, 1.37 in Q3 areas, 1.53 in Q4 areas, and 1.99 in Q5 areas. Conversely, this pattern was not apparent for COVID-19-related deaths among persons >65 years of age; rates were only higher for those living in Q5 areas . We did not estimate models for death among persons 40-64 years of age because we observed <5 events in some SDI quintiles. In the period 1-6 months after vaccine rollout, inequalities decreased in both age groups compared with the period before vaccine rollout . Inequalities were still noticeable among those >65 years of age; HR was 1.08 in Q3 areas, 1.10 in Q4 areas, and 1. 23 In sensitivity analyses restricting participants to citizens of Spain, results were also consistent with our main analyses . In the period 3-6 months after vaccine rollout, results were overall similar to our main analysis, although among those >65 years of age, inequalities in hospitalizations were more apparent than 1-6 months after vaccine rollout. HR for hospitalizations 3-6 months after vaccine rollout were 1.33 for those living in Q2 areas, 1.47 in Q4 areas, and 1.71 in Q5 areas . --- Discussion In this cohort study comprising >2 million adults living in urban areas of Catalonia, Spain, vaccination coverage was high 6 months after the CO-VID-19 vaccine rollout. However, coverage differed by SDI quintile for place of residence; coverage was 85% in the least deprived areas and 77% in the most deprived areas. Among retirement-age persons , SDI quintile was not associated with vaccination, whereas among working-age persons , nonvaccination increased among those living in more deprived areas. Three months before vaccine rollout, we found a pattern of increased rates of CO-VID-19 infection and hospitalization among retirement-age and working-age persons living in more deprived areas. However, 6 months after rollout, socioeconomic inequalities in COVID-19 infection substantially decreased among both age groups, whereas inequalities in COVID-19 hospitalization moderately decreased only among retirement-age persons. Surveys assessing inequalities in willingness to vaccinate found conflicting results across countries . A study of 13,000 participants from 19 countries reported that younger age was associated with less willingness to vaccinate in the United Kingdom, Sweden, and Spain, whereas the opposite was observed in China . Conversely, higher education levels were associated with more willingness to vaccinate in the United States, France, and Germany, but not in Spain or the United Kingdom . Regarding COVID-19 vaccination coverage, studies are mostly limited to the United Kingdom and the United States . However, these studies consistently found lower vaccination rates among persons with low socioeconomic status . This finding is also in line with prior evidence in relation to other vaccines . We found an association between higher socioeconomic deprivation and nonvaccination only among working-age persons. Differences by age group could be related to working conditions , as well as to an enhanced COVID-19 risk perception among older persons, who have a higher risk for severe disease . Unlike our study, UK studies also observed inequalities in coverage among the elderly . Differences in the development of the pandemic, the vaccination campaign, or cultural perspectives across countries might explain these discrepancies. Spain was severely hit by the first wave of the pandemic and is one of the countries with the highest COVID-19 vaccination coverages . Furthermore, Spain is a country with traditionally high levels of vaccine confidence and with high vaccination coverages overall . Inequalities among working-age persons are concerning, because those with low socioeconomic status are more likely to be exposed to infection because of poorer working and housing conditions and to develop severe disease because of poorer health status . Those findings are consistent with our findings before vaccine rollout, as well as with prior evidence from the United States and Europe, including Spain . In July-November 2020 the risk ratio of COVID-19 infection in residents of the poorest areas of Barcelona, the capital of Catalonia, was 1.67 in men and 1.71 in women, in line with our findings . Despite inequalities in vaccination coverage, socioeconomic inequalities for COVID-19 infection decreased 6 months after vaccine rollout among both age groups, suggesting that vaccines reduced inequalities partly through mechanisms of herd immunity . Conversely, inequalities in hospitalizations decreased, although they still persisted, only among retirementage persons. This finding highlights the importance of addressing vaccine inequalities among working-age persons. Persisting inequalities among the retirementage persons might be related to differences in the risk for severe COVID-19 once infected because we found that those living in more deprived areas have more comorbidities and, thus, higher risk for complications . In addition to nationwide vaccination campaigns, strategies addressing structural inequalities are needed to reduce the burden of COVID-19-related outcomes among those most vulnerable . The main strength of this study is the nature of our database, which encompasses ≈75% of the population of Catalonia. In addition, our data include a complete record of vaccines administered and of COVID-19 tests performed at public healthcare facilities. This study provides novel evidence regarding the associations between socioeconomic deprivation and COVID-19 infection, hospitalization, and death before and after the COVID-19 vaccine rollout in a country in southern Europe. The first limitation of our study is that, although area-based indices of socioeconomic deprivation are widely used in epidemiologic studies, our results should be interpreted with caution considering the risks of ecologic bias. Second, we lacked information on occupation, which would have been of interest to have a better understanding of our results among working-age persons; a UK study reported lower vaccination coverage among persons working in manual occupations . Last, our results might not be generalizable to other contexts because of differences across countries, although they provide insights into the effects on socioeconomic COVID-19 inequalities of a mass vaccination campaign in a high-income country with high access to vaccination. Despite socioeconomic inequalities in vaccination coverage, our results show that inequalities in COVID-19 infection and hospitalization in urban areas decreased but still persisted 6 months after the start of vaccine rollout in Catalonia. Our findings show that mass COVID-19 vaccination reduced COVID-19related inequalities and emphasize the need to pursue efforts to vaccinate all population subgroups. --- About the Author Dr. Roel is a medical doctor specialized in preventive medicine and public health. She is currently a predoctoral researcher at Fundació Institut Universitari per a la recerca a l'Atenció Primària de Salut Jordi Gol i Gurina , Barcelona, Spain. Her thesis focuses on the use of real-world data to fill evidence gaps in the field of COVID-19.

T he COVID-19 pandemic has caused an unprec- edented global health crisis, resulting in >540 million cases worldwide as of July 2022 (1). However, the impact of the pandemic has not been uniform across or within countries (2). Disadvantaged populations, such as individuals with low socioeconomic status, display higher incidence rates of COVID-19 infection and hospitalization (3,4). To date, vaccines against SARS-CoV-2, the virus that causes COVID-19, are the cornerstone of the COVID-19 response. Yet, emerging evidence shows socioeconomic inequalities in COVID-19 vaccination coverage within countries with high access to vaccines, such as the United Kingdom or the United States (5-8). For instance, a report from May 2021 from the United Kingdom showed that vaccination coverage was 94% in the least areas and 84% in the most deprived areas (deprivation was measured using an index based on income, employment, education, health, crime, barriers to housing and services, and living environment) (8,9). Similarly, in the United States, vaccination coverage was lower (49%) among adults living in counties with the highest overall social vulnerability index (SVI) scores (based on socioeconomic status, household composition and disability, racial/ethnic minority status and language, and housing type and transportation) when compared to the coverage (59%) among adults living in counties with the lowest overall SVI scores in May 2021 (10). However, evidence is scarce regarding socioeconomic inequalities in COVID-19 vaccine uptake from other countries and the effect of the COVID-19 vaccine rollout on socioeconomic COVID-19-related outcomes inequalities. In Spain, the COVID-19 vaccine rollout started on December 27, 2020. The first population groups eligible for vaccination were persons living in nursing homes and healthcare workers (11). Subsequently, other groups became eligible, taking into account age, starting with the eldest; underlying conditions, prioritizing persons with risk factors for COVID-19; and occupation, prioritizing essential workers. In Catalonia, a region located in northeast Spain, 52% of the population had received >1 dose of a COVID-19 vaccine as of June 30, 2021 (12). Determining patterns of socioeconomic inequalities in relation to COVID-19 vaccination and COVID-19 outcomes in Catalonia could provide valuable information to public health

Introduction Life expectancy at birth in the United States ranks relatively low in international comparisons, behind countries such as Canada, Costa Rica, Japan, South Korea, and many European nations [1,2]. However, life expectancy in the U.S. ranks appreciably higher at ages 65 and older [2,3]. Perhaps fundamental to this paradox and our understanding of human longevity may be the impact of birthplace on adult mortality. In the last three decades of the 20 th century, the foreign-born population in the United States was one of the fastest growing segments of the population, exceeding 28 million by the year 2000 [4,5]. During this period, researchers observed that the U.S. foreign-born population had better health and lower mortality relative to persons who were native born [6][7][8][9][10][11][12]. Although research on immigrant status and mortality has been limited at older ages, recent evidence from Singh and colleagues has shown that life expectancy at age 65 is approximately 1.5 years longer among the foreign-born population than among the U.S. born population [13]. There also is evidence to suggest that differences were greater among men than women and that the survival disparities widened from 1980 to 2000 [13]. Until recently, the lack of data prohibited reliable comparisons of U.S. mortality by nativity at older ages. Current estimates of life expectancy at older ages combine vital statistics and census enumerations to approximate death counts and population size , respectively [14]. As a result, the accuracy of such rates are unknown and questions remain about how the immigrant population impacts mortality heterogeneity and survival expectations in later life. The purpose of this study was to provide accurate population estimates of survival for foreign-born and native-born adults aged 65 and older at the end of the last century. --- Methods We used newly available data from Medicare records linked with Social Security Administration files to examine mortality differences in nativity by sex, race, and age. Official estimates of U.S. mortality at older ages are based on data of historically poor quality [14], which approximate death counts and population size from two sources . Research has established that the use of Medicare data to estimate old-age mortality is more accurate than traditional data derived from multiple sources [15,16]. Enrollment in Medicare is nearly universal at older ages and covers more than 95% of the U.S. population aged 65 and older, including the institutionalized [17]. The scientific consensus is that data from enrollees in Medicare Part B provide the most accurate age reporting and population counts because the program requires monthly payments for services [16,17]. The cancellation or non-receipt of premium payments results in the termination of enrollment in the program, which unlike Medicare Part A , provides an important mechanism to exclude decedents from the population. Further details of the Medicare data and their quality, particularly for estimating mortality, have been reported extensively elsewhere [15][16][17]. The current calculations were based on computerized Medicare Part B data that were merged with Social Security Administration records for more than 30 million U.S. elderly in 1995. Although we acknowledge the age of the data, the current study uses the only population-wide cohort data currently available to reliably estimate U.S. mortality differences by nativity, sex, and race at older ages. Prior population-based studies of mortality encounter comparable lags in the availability of suitable data for analysis [10,13,[18][19][20][21]. Unlike existing data, the analyses in this study are based on the only Medicare Part B data that have been linked with the SSA Numident file for all enrollees to provide detailed information on place of birth. These unique data are the result of enormous coordination and effort by the SSA, Health Care Financing Administration , National Institutes on Aging, and Duke University. Medicare data linked with SSA records in more recent years are currently not available for analysis. Deaths were recorded in the SSA Numident file and linked to Medicare data using social security numbers [16,17]. Sex and race were provided by SSN applicants and were included in the analyses to account for known demographic variations in mortality at older ages [22]. Place of birth was ascertained from SSN applications and was provided in the Numident file. Although nativity was determined for the majority of SSN applicants, there were cases that could not be determined due to erroneous or missing information. Consistent with previous research using SSAlinked Medicare records [23,24], approximately 15% of men and 23% of women had missing information on birthplace. On average, enrollees with missing data were more likely to be older and white compared to persons with identifiable nativity. Improvements in vital registration and data recording were also reflected in rates of missing that diminished over time. Missing patterns corresponded closely with the computerization of the Numident file that occurred during the mid-1970s and mainly affected persons who turned 65 before 1977 [17,23,24]. We also know from census enumerations and the distributional makeup of enrollees that the vast majority of persons with unknown nativity in our study were born in the United States [4,23,25]. We excluded persons over 100 years of age because the accuracy of U.S. death rates at these ages has been challenged [3,14]. Preliminary analyses of the Medicare data were performed. First, we calculated age-specific survival probabilities for all Medicare enrollees by sex and race and compared them to official estimates reported by the National Center for Health Statistics [26]. Results confirmed that survival probabilities in the NCHS data corresponded closely to estimates from the Medicare data when persons with unknown birthplace were included among the native-born population . Second, we estimated survival probabilities for men and women by race with missing nativity data and compared them to the estimates from the Medicare and NCHS data in 1995 . Overall, cumulative survival rates among women with unknown nativity were nearly identical with estimates from the Medicare and NCHS sources; for men, cumulative survival rates among those with missing data were lower compared to the other sources. Although deviations were apparent among white and black men, the overall rates of those with unknown place of birth were low . A third set of analyses examined potential age-misreporting in the foreign-born Medicare data. We compared life expectancies between foreignborn populations from countries with excellent vital record data and from the remaining countries with data that are known to be less reliable [27]. As previously demonstrated, life expectancies in countries with poorer data were slightly overestimated for the foreign born [27]. The discrepancies were similar for men and women and were relatively small. Based on these tests, we are confident that the current estimates are not severely biased by missing data or age misreporting. Period life tables were used to examine age-specific death rates and five-year survival probabilities among Medicare enrollees by nativity, sex, and race in 1995 [28]. We also estimated life expectancies at select ages by nativity group and compared the U.S. foreign-born population to other nations to assess the magnitude of the survival advantage [1] at age 65. The contribution of the foreign-born population to U.S. total life expectancy at older ages was assessed. Details of the life table methods and calculations of 95% confidence intervals are provided online . All analyses were conducted using Stata version 11 and Excel version 2007 . --- Ethics Statement The institutional review board at Duke University reviewed and approved the data used in this study. --- Results Table 1 provides the sample sizes and total number of deaths at selected ages for the native-born and foreign-born populations in the SSA-linked Medicare data. Figure 1 shows that the age-specific death rates for the older foreign-born population were lower than the native-born population at most ages in 1995. These results confirm the foreign-born survival advantage at older ages and suggest that the mortality gap was greatest among men. There was also evidence that differences in mortality widened between nativity groups across age, particularly among men. The upper panel in By international comparison , the overall life expectancies of foreign-born men and women at age 65 in the United States surpassed the overall life expectancies of Canada, France, Germany, Italy, Japan, Spain, Sweden, and the United Kingdom at age 65. In fact, the Medicare estimates suggest that U.S. foreign-born black men and women had life expectancies that were approximately two years longer than men at ages 65 and older was appreciable. Figure 3 shows that the foreign-born population increased TLE at all ages for whites and that the contributions were similar for men and women. At age 65, the high life expectancies of foreign-born white men added 0.12 years to TLE for men and foreign-born white women added 0.09 years to TLE for women. Patterns were similar for foreign-born blacks, although the contribution levels were less due to their smaller population sizes. Overall, the foreign-born contributions were substantial in 1995 considering that life expectancy at age 65 improved by only 1.5 years for men and 0.6 years for women from 1980 to 1995 [29]. --- Discussion Newly available data from SSA-linked Medicare records provided a unique opportunity to reliably compare survival rates between U.S. foreign-born and native-born elderly populations at the end of the last century. Results from period life tables demonstrated a clear foreign-born survival advantage among older adults in the United States in 1995. Survival differences between foreign-born and native-born populations were large and consistent at ages 65 and older, particularly among men and blacks. Overall, we found that the foreign-born elderly population contributed to U.S. life expectancy and were among the longestlived in the world. Foreign-born blacks had the longest life expectancy at older ages compared to the other population groups that were studied. To our knowledge, this is the most reliable documentation of what appears to be exceptional longevity among older U.S. blacks born outside of this country. This finding is in contrast to the well-documented disadvantages and correlated health risks among native-born blacks. It is possible that the black foreign-born mortality advantage may amplify what has been described as the black-white mortality crossover that is often observed at old ages. Unlike previous research, the current estimates were based on Medicare Part B data that have more accurate age reporting than most studies showing lower mortality among older blacks compared to older whites. If poor data quality among blacks were indeed in question, native-born blacks also would exhibit similar survival compared to whites-but there is little evidence of this. Nevertheless, we cannot rule out data quality or the influence of other unobserved factors that are unique to foreign-born blacks. A somewhat unexpected finding was the degree to which the white foreign-born population increased U.S. life expectancy. The white foreign-born contributions to TLE in 1995 were sizeable relative to the population sizes and life expectancies of each sex and age group. Although the U.S. foreign-born population was one of the fastest growing segments of the population during the last decades of the 20 th century [4,5]; it is unknown whether their contribution to U.S. life expectancy will persist in the early 21 st century. It is also unknown how the relatively young foreign-born Hispanic population will shape U.S. mortality in the future. Researchers should consider these demographic factors and the role of unobserved heterogeneity in socio-behavioral risks across nativity groups that may explain the survival differentials [30,31]. The observation that the U.S. foreign-born were among the longest-lived older adults in the world was remarkable but not unexpected. According to the United Nations, the number of immigrants in the United States is more than triple any other nation in the world-a feature that has come to define the diversity of America in the 20 th century [32]. Historically, the U.S. foreign-born population was comprised of predominantly healthy, young , European migrants who resided and worked in rapidly modernizing urban areas. The finding that foreign-born white men contributed to U.S. life expectancy corroborates the possibility of health selection . It also is plausible that survival is greater at older ages for those born in a foreign country than for those born in the United States because of a biological or acquired resilience that promotes relatively low mortality at advanced ages. However, what is unique is that the low mortality of the foreign born at older ages did not follow a period of elevated risks at younger ages that typically characterizes relative mortality advantages in late life [13,33]. To be sure, we await validation of these findings before speculating further about their underlying causes. A key strength of this study is that the Medicare data allowed us to estimate survival rates from a single source and are more accurate than current estimates based on vital statistics and census enumerations. Unfortunately, the data are limited as an empirical resource to elucidate the factors that may explain the findings. Central to this shortcoming is whether and to what degree the low mortality of foreign-born older adults is an artifact of selective return-migration among foreign-born adults with advanced illness and anticipated death. The so-called ''salmon bias'' has been proposed to explain the mortality advantage of U.S. Hispanics, namely Mexican Americans [34]; however, its impact on mortality at advanced ages and among other racial and ethnic immigrants is not well understood. Contrary to perception, the majority of older foreign-born adults at the end of the last century were from Europe and Asia and not from geographically proximate nations such as Mexico, Cuba, or Canada [25]. Moreover, almost two-thirds of the older foreign-born lived in the United States for more than 30 years and are much less likely to leave the country in late life than the younger foreign-born [35,36]. We also know that foreign-born and native-born populations were not covered equally by health insurance at ages 65 and older. In 2000, approximately 96% of the native-born population was enrolled in Medicare, compared to 90% of the foreign-born population [25]. Therefore, foreign-born adults who were most likely to migrate out of the United States at older ages were not included in our study of Medicare enrollees. In other words, uninsured foreign-born adults were omitted from numerators and denominators when estimating mortality rates for the foreign-born populations. Considering these factors, the potential influence of migration bias on the results is presumably minimal. Indeed, a recent analysis of SSA data showed that a salmon bias was too negligible to impact the Hispanic mortality advantage in the United States [21]. Nevertheless, we recognize that further consideration of migration is critical to understanding how nativity impacts adult mortality and merits further research. We also recognize that the period life table estimates are from 1995. However, it is important to underscore the relevance of these findings in light of current science and to current public health surveillance. First, this study provides the most accurate and current population estimates of survival for foreign-born and native-born adults aged 65 and older. Until now, the lack of data has prohibited reliable comparisons of U.S. mortality by nativity at older ages. Second, estimates of life expectancy at older ages in the United States have changed little over the past several decadesi.e., by only 0.4-1.3 years at age 65 from 1995 to 2005 [26,37], regardless of sex and race. In fact, the most recent official estimates of U.S. life expectancy at age 65 are only as current as 2005. Third, the findings are unique because they are based on nearly the entire U.S. population ages 65 and older, and to the best of our knowledge, these data are the only source of detailed information on place of birth for such a large number of U.S. adults . In sum, this study provided an unprecedented opportunity to accurately determine nativity for almost all U.S. older adults and estimate mortality rates from a single source-which are more accurate than existing estimates derived from multiple sources . Age misreporting is an unavoidable source of bias in mortality estimates at older ages [38,39] and the current data are not immune. The accuracy and availability of documentation provided to enter the United States varied significantly by country and region. However, preliminary analyses of foreign-born populations from countries with excellent vital record data and less reliable data suggested that the major findings were not simply an artifact of age misreporting. Another potential source of bias was missing data on place of birth. Supplemental analyses showed that missing data were relatively low and did not severely bias the observed survival patterns. However, we acknowledge that missing and erroneous data are important to consider when interpreting the magnitude of nativity differences in mortality, and until new and improved Medicare data with SSA linkages to nativity become available, we remain cautious in our conclusions. The results of this analysis have potential relevance for health policy. Approximately 99% of native-born adults aged 65 and older had health insurance at the end of the last century ; compared to 94% of foreign-born elders [25]. However, the nativity gap in health care coverage at all ages is far more pronounced. During the same period, 87% of the nativeborn population had access to health insurance; compared to less than 67% of the foreign-born population [40]. The fact that foreign-born adults seem to be living longer than native-born adults despite having lower rates of health insurance suggests that factors other than access to health care are important to the longevity of older U.S. immigrants [3,41]. We encourage researchers to make additional linkages to data to enrich our understanding of these findings and their implications for public health and medical care. In the current era of U.S. health care reform, it is important to reassess access and the delivery of quality care to all segments of the population and its ever-expanding landscape of diversity. Fundamental to questions about human aging, from fetal origins to late life, is whether and how birthplace modulates disparities in healthy longevity [42][43][44][45][46][47]. Using unique data from SSA-linked Medicare records, we provided the first reliable documentation of differences in age-specific survival and life expectancy by nativity, sex, and race at a significant period. Our estimates validated the foreign-born survival advantage and demonstrated that the older immigrant population improved U.S. life expectancy at the end of the last century. It is not yet known how younger foreign-born cohorts will impact future mortality heterogeneity and survival expectations in the United States. --- Supporting Information

Background: Studies show that the U.S. foreign-born population has lower mortality than the native-born population before age 65. Until recently, the lack of data prohibited reliable comparisons of U.S. mortality by nativity at older ages. This study provides reliable estimates of U.S. foreign-born and native-born mortality at ages 65 and older at the end of the 20 th century. Life expectancies of the U.S. foreign born are compared to other developed nations and the foreign-born contribution to total life expectancy (TLE) in the United States is assessed. Methods: Newly available data from Medicare Part B records linked with Social Security Administration files are used to estimate period life tables for nearly all U.S. adults aged 65 and older in 1995. Age-specific survival differences and life expectancies are examined in 1995 by sex, race, and place of birth. Results: Foreign-born men and women had lower mortality at almost every age from 65 to 100 compared to native-born men and women. Survival differences by nativity were substantially greater for blacks than whites. Foreign-born blacks had the longest life expectancy of all population groups (18.73 [95% confidence interval {CI},] years at age 65 for men and 22.76 [95% CI,] years at age 65 for women). The foreign-born population increased TLE in the United States at older ages, and by international comparison, the U.S. foreign born were among the longest-lived persons in the world.Survival estimates based on reliable Medicare data confirm that foreign-born adults have longer life expectancy at older ages than native-born adults in the United States.

Introduction Stigma causes unnecessary suffering among people living with the human immunodeficiency virus/acquired immune deficiency syndrome [1][2][3][4][5][6][7]. This often undermines their capacity to access and utilize available healthcare and realize favorable health outcomes [8][9][10][11]. Hence, stigma reduction is also central to the long-term success of efforts to prevent and treat HIV/AIDS [12]. Understanding factors that account for the persistence of stigma in the age of antiretroviral treatment is important to inform stigma reduction efforts and has been advocated [13]. Stigma has been defined as a demeaning social evaluation or label that is attached to or tagged onto the entity or state of health that exhibits socially undesirable characteristics [2,3,17]. Stigmatization refers to the social process by which demeaning evaluations or labels and the consequent negative emotional and behavioral responses are generated and sustained [2]. The labeling theory of stigma posits that stigmatization is a sequential process that begins with negative labeling and stereotyping of the deviant entity by others, which leads to separation and status loss of the labeled entity, and subsequently social exclusion [14,15]. This occurs in social contexts where the stigmatized have limited social power and legal protections against social harm [15,16]. Whereas the state of health or entity is not the stigma, certain attributes of the entity/health state trigger this negative social process [1][2][3]. Hence, HIV infection might be highly stigmainducing in some socio-cultural contexts but not so stigmainducing in other contexts. One of the ways that literature classifies stigma is by the social context in which it is expressed/experienced [17]. This often equates to specifying who the stigmatizer is. Hence, community stigma, the focus of this study, refers to stigma held in the public mind, i.e., the general public or community stigmatizes HIV infection and/or people living with HIV/AIDS . Individuals in the community may endorse or refuse to endorse the negative attitudes and behaviors generally expressed in their community towards HIV infection and PLWHA. The impact of stigma on HIV services uptake might be assessed by relating individuals' services uptake to variance in the level of community stigma they endorse. Stigma is sustained by a complex set of factors that are not easy to address [12,17]. However, increased HIV/AIDS knowledge and availability of ART have been hypothesized to diminish community stigmatization of people living with HIV/ AIDS [18,19]. This should be most evident in resource limited settings, where the biomedical health system is less well established but is being rapidly scaled-up. In such settings, the public learns about HIV transmission routes, risk of HIV infection associated with everyday conduct, and the efficacy of HIV prevention and treatment measures from public health education programs. The scale-up of ART, to the extent that it changes the image of HIV disease from a life threatening condition to a chronic illness [18] should impede the negative effects of stigma. Hence, knowledge of ART-experienced patients who live successfully with HIV/AIDS and/or belief in the efficacy of ART should correlate negatively with community stigma. However, stigma persists as a barrier to HIV service uptake world-wide [12,19,[21][22][23][24][25][26][27][28][29][30]. The limitations of ART scale-up as a stigma reduction strategy have been noted in diverse settings [13,25]. The advantages of investigating stigma under varying contexts of HIV knowledge and public health response to the epidemic have also been suggested [31]. The interaction effects of knowledge about HIV transmission and perceived efficacy of ART on willingness to endorse community stigma have also not been clearly described. Human rights education has been proposed as another way to reduce stigma, especially in developing country settings where there are low levels of awareness of universally accepted human rights and inadequate legal statute defining and protecting the rights of PLWHA [3,21,32]. Even when knowledge of HIV-specific legal protections might be limited , generalized legal rights certitude could influence willingness to endorse community stigma, independent of knowledge about HIV transmission and treatment. In this case legal rights certitude refers to confidence in the legal system, in terms of one's ability to access the legal system and be guaranteed due process when need arises, regardless of the legal question at hand. However, the impact of legal rights certitude on HIV stigma has not been adequately described. Zambe ´zia Province in Mozambique is one context where the HIV epidemic has had a profound impact at multiple levels including attracting significant investments in health promotion and HIV care and treatment programs [33][34][35][36]. Zambe ´zia Province is the second most populated province of Mozambique. In 2007 about 3 million people lived in Zambe ´zia Province, of whom over 86% resided in rural areas [33]. According to the 2009 antenatal sentinel surveillance of pregnant women aged 15-49, Zambe ´zia has an HIV prevalence of 12.6% compared to the national prevalence estimate of 11.5% [36]. Despite high prevalence, Zambe ´zia Province, and indeed most of Mozambique, has experienced some decline in prevalence of HIV since it peaked in 2005 at about 19% [36]. These trends are largely attributed to the scale-up of ART services [33,37,38]. Legal protections against discrimination on the grounds of HIV status have been instituted in Mozambique [39], consistent with global trends to reduce stigma through strategies that protect the dignity and human rights of PLWHA [12]. However, stigma is one of the negative factors consistently captured in studies about patient loss to follow-up and inadequate adherence to ART in Zambe ´zia Province [40,41] and other provinces in Mozambique [5,34,42]. Zambe ´zia Province and Mozambique are not the only ART expansion zones where stigma persists as a barrier to healthcare and ART uptake [3,6,7,10,24,[43][44][45][46][47][48][49][50][51][52]. However, few studies have described the nature of community stigma in Zambe ´zia Province and its correlates. In this paper, we describe the way a population sample of female heads of households in Zambe ´zia Province endorsed community stigma towards PLWHA and factors associated with these endorsement patterns. We specifically examine the association between stigma endorsement, legal rights certitude, knowledge about HIV transmission, familiarity with HIV infection, and beliefs about the efficacy of treatments for HIV/AIDS . While national demographic household surveys have assessed public attitudes and knowledge about HIV transmission in Zambe ´zia Province [37], literature on correlates of community stigma is scarce. The few reports about stigma have so far emerged from either very small surveys of convenient samples or only captured the views of HIV patients and healthcare providers in restricted geographic areas of the Province [40,41]. We also highlight implications that the observed relationships might have for the design of anti-stigma interventions. --- Materials and Methods Data from a general household survey conducted in Zambe ´zia Province in 2010 under the Ogumaniha-SCIP Project provide a snapshot of HIV stigma within an established and generalized epidemic where a substantial response has been implemented. Ogumaniha means ''united/integrated for a common purpose'' in the local Echuabo language. SCIP stands for Strengthening Communities through Integrated Programming, a project implemented in Mozambique by a consortium of partners led by World Vision, Inc. --- Survey Background and Design The Ogumaniha-SCIP Project commenced in Zambe ´zia Province in late 2009. The project's baseline survey was conducted in late 2010 and recruited 3749 female heads of households in 259 randomly selected enumeration areas across 14 districts in Zambe ´zia Province. Fourteen teams of 5 individuals, a team leader and four interviewers, collected data on a Zambe ´zia-wide sample to provide province-wide estimates, as well as data in three focal districts to provide finer estimates from which to estimate changes over time [53]. The survey questionnaire included a module on HIV knowledge and attitudes towards PLWHA, including factors that might be associated with HIV stigma. Interviews were conducted either in Portuguese or in one of 5 native languages of the province, and data were collected using mobile/cell phones. Details of the sampling procedures, identification of randomly selected enumeration areas and households, and the data collection and management process are published elsewhere [53]. Approximately 99.1% of all households approached agreed to participate in the survey. The study protocol was reviewed and approved by the National Committee of Bioethics for Health in Mozambique and the Institutional Review Board of Vanderbilt University [53]. Written informed consent was obtained for all study participants. A research team at Vanderbilt University was responsible for the collection of these survey data and is responsible also for maintaining the database. Information from the survey is deidentified, and there is no mechanism to re-link data back to individual participants. This report is based on an analysis of these de-identified data. Ethical approval for this secondary data analysis study was provided by the Vanderbilt University Institutional Review Board who deemed that the study did not meet criteria for human subjects research. The analysis did not involve intervention or interaction with a ''human subject'' or access to identifiable private information. --- Stigma Measurement Stigma items were adapted from a questionnaire used in a study conducted by Pulerwitz et al [11,54]. The questionnaire lists 15 items reflecting attitudes, beliefs and behaviors that a respondent endorses at varying levels of intensity . The statements reflect labels and stereotypes that devalue and reduce a person with HIV to a tainted and socially undesirable status [14][15][16]55] as well as specific discriminatory actions against PLWHA. Item exemplars include, ''A person who has AIDS should not be allowed to work with other people to protect the people who don't have AIDS'', ''AIDS is a punishment for bad behavior''. Factor analysis techniques were used to derive two dimensions of stigma and related scales . The modifications were mainly to make the items less about truck drivers but more about being a head of household. The Cronbach's alphas for the modified measure were comparable to those reported by Pulerwitz et al. [11,54], indicating the measure was of acceptable reliability in this context as well. Table 1. Main hypotheses and related rationale*. --- Hypothesis Theory or potential causal mechanism High knowledge of HIV transmission is associated with low endorsement of stigma Prejudice theory. HIV stigma is related to ignorance or miss-information about HIV infection and its mode of transmission. Awareness of HIV infection in self, friends or relatives is associated with low stigma endorsement Othering and social proximity theories. Self identification or intimate relatedness with a socially devalued entity or state of health moderates negative affect towards the entity or state of health. Any person living with HIV/AIDS acquires an insider identity with the HIV-infected observer and/or the observer who is intimately related to another HIV-infected person. Perceived risk of HIV infection will be associated with low endorsement of stigma Othering and social proximity theories. Self identification or intimate relatedness with a stigmatized entity or state of health moderates negative affect towards the entity or state of health. The stronger the perceived risk of infection with HIV, the stronger the self-identification with people living with HIV/AIDS . Believe in the efficacy of HIV/AIDS treatment or the treatability of HIV/AIDS will be associated with low stigma endorsement Existential anxiety theory holds that a belief in the controllability of a life threatening illness or state of health moderates anxiety about and/or fear of the illness or health state. High legal rights certitude is associated with low endorsement of stigma Knowledge of legal rights and confidence in the legal system's capacity to protect all persons from harm is likely to moderate harmful attitudes and behavior towards PLWHA. The legal system can influence community stigma by dictating acceptable and unacceptable conduct and expressions, means of redress available to victims of stigma, and punishments for offenders. HIV transmission knowledge will interact with distance from and contact with health services to determine the level of stigma endorsed by participants Information diffusion theory. Health services are the major sources of information about HIV/AIDS, PLWHA and stigma reduction initiatives. Proximity and contact with health services will determine the degree of access to HIV transmission knowledge and familiarity with HIV treatments and care, each of which is associated with the extent to which participants endorse stigma. Female heads of household who score high on empowerment are less likely to endorse stigma Empowerment is operationalized as going against the social norm of male dominance in household level decision making. Based on the nature of power and social norms theory, we presume that once an individual rejects a powerful negative social norm s/he is less likely to endorse social norms that are harmful to others, such as the stigma of HIV/AIDS. *The hypothesized relationships were expected to hold in unadjusted and adjusted analyses. doi:10.1371/journal.pone.0075744.t001 --- Main Correlates HIV transmission knowledge was measured by the number of correct HIV transmission routes and ways to prevent them that a respondent was able to provide. These are domains of knowledge that are typically covered in public health education campaigns as well as in targeted health education programs conducted in both health centers and community settings. The focus was on adult-toadult transmission and mother-to-child transmission routes and potential transmission via casual contact, making a total of 5 domains of knowledge. For example, ''In what ways can one adult man or woman transmit HIV to another man or woman? How can HIV transmission from mother to child be prevented?'' Interviewers were instructed to only record the number of correct responses for each potential HIV transmission event. Participants were not provided with a menu of potential responses to choose from and so had to provide the responses that they knew independent of the survey. A correct response for adult-to-adult transmission, for example would be unprotected vaginal, anal and oral sex, through needle sharing, blood transfusion, accidents in health settings. The interviewer selected one of 3 response options: 0 = None, 1 = One correct response and 2 = Two and more correct responses. A summative score was generated such that higher scores indicated higher knowledge. Legal rights certitude was assessed via four questions about the extent to which the household has adequate and reliable access the traditional and modern legal/justice systems and have certitude of fair treatment should they need to resort to these systems. An exemplar item is ''Does your household have access to the modern legal system if you should need it?'' Also, ''Would you expect to be treated fairly by the modern legal system?'' A summary score from the Yes/No responses was generated and normalized to range from 0 to100. Familiarity with HIV infection was assessed through self-reported awareness of people who are HIV+ and those in receipt of treatment for HIV/AIDS and own experience of HIV infection. Direct experience of HIV infection has been shown to moderate negative attitudes towards PLWHA [13] and this is consistent with findings about other socially stigmatized conditions like mental illness [2,20]. Belief about the efficacy of ART was assessed through 2 questions about belief in the efficacy of ART, e.g., ''Do you think antiretroviral treatment helps people with HIV to be healthier? Do you think alternative treatments available in the community or from traditional healers can help people with HIV?'' Each item was treated as a distinct binary variable in the analyses since these are not mutually exclusive beliefs. --- Control Variables We controlled for standard demographic variables of age, education, marital status, religion, contact with healthcare services, distance of place of residence from the clinic/health facility, and district of residence. Several districts in Zambe ´zia are isolated . For the purposes of this study, the 14 districts were classified into two groups according to isolation of main government health facilities from the provincial capital of Quelimane. Isolation generally impacts the degree of coverage of public services, including healthcare and modern legal services. Other potential confounders considered were perceived risk of HIV infection, healthcare access/contact, social integration and empowerment as they reflect perceptions, behaviors and community level functioning that are likely to shape attitudes and behaviors towards PLWHA. Perceived risk of HIV infection was assessed by asking: ''What are the chances you might become infected with HIV?'' Responses options were coded as follows: 1 = No chance, 2 = Small chance, 3 = Good chance and 4 = Already infected. Non-response or responses of ''Don't know'' were also recorded. Perceived risk was treated as a categorical variable with non-responses and ''Don't know'' responses collapsed into a single category. Healthcare services access/contact was assessed by asking about three different healthcare systems that participants could utilize: government health centers or hospitals, private pharmacies and traditional healers. Each item was treated as a distinct binary variable in the analyses. The frequency of visits to each system was not estimated due to data reliability issues. Voluntary counseling and testing contact was assessed among participants who, in a separate question, reported that they were aware of VCT as follows: ''Have you received voluntary counseling and testing in the past 6 months? Have you ever received voluntary counseling and testing at any time during your life prior to the last 6 months?'' This was dichotomized into ''ever used VCT'' vs. ''never used VCT.'' At the time of the study VCT services were primarily offered in health facilities. However, the health facility contact variable captures purposes other than just VCT. Secondly, undergoing VCT in itself might be uniquely related to how VCT-using study participants answer stigma questions. Empowerment was assessed through 10 questions about men vs. women's decision making roles in 10 domains of household level decision-making. Examples of domains of decision-making assessed are appropriate age to marry, family planning, administration of finances, seeking healthcare for pregnancy and farm/land chores. Response options were: the men, the women, or both . Since these are primarily female heads of households in a context where decision power is generally skewed in favor of men, the scoring was re-coded to ensure that female dominance in households with adult males represented the greatest level of empowerment, while gender balance represented median empowerment. Such patterns of empowerment likely reflect unique household level norms about 'power distance' [56] in interpersonal relationships that might influence a head of household's willingness to stigmatize PLWHA. Some aspects of ART scale-up such as the prevention of mother-to-child transmission services increase opportunities for women to be tested for HIV infection thus inadvertently making women vulnerable to community stigma, particularly in settings where gender inequality is rife. Hence, the association between community stigma endorsement and legal certitude might differ by degree of gender equality. Social integration was assessed via 6 questions about the extent to which members of the household attend community development events, such as meetings about water and sanitation, the community health council, orphans and vulnerable children, agricultural and general community development. Attendance ranged from weekly to yearly or never. Public health education and general community strengthening occurs at such events in Zambe ´zia Province as well as in other developing country settings. Attendance at such events is likely to shape household level attitudes and behavior towards PLWHA as well as level of HIV knowledge. --- Statistical Methods Factor analysis using the principal component analysis approach, with orthogonal varimax rotation, revealed two dimensions of stigma: negative labeling and devaluation and social exclusion . The Cronbach's alphas for NLD and SoE were 0.74 and 0.73 respectively, explaining 94.7% of the variance. Cronbach's alphas were estimated to evaluate the internal reliability of the stigma constructs. Scales for each dimension were calculated by taking the mean value of nonmissing items and then normalized to a 0-100 range. Univariate analyses included survey-weighted proportion, median, and interquartile range by survey-weighted tertile of each stigma scale . Tests of association with stigma scale include Spearman's rank correlation and rank sum test . Multivariable methods included linear models with robust covariance matrix estimates to correct for correlated responses from enumeration areas. Missing values of covariates were multiply imputed to prevent casewise deletion [57]. To account for possible non-linear associations, continuous variables were included in the models using restricted cubic splines [58]. Interaction effects were included to investigate modifying effects of ART efficacy and distance to clinic on stigma level. Rsoftware 2.13.1 was used for statistical analyses. Data are not publicly available, but analysis scripts are available at http://biostat.mc.vanderbilt.edu/wiki/Main/ ArchivedAnalyses. --- Results Characteristics of the study population are shown in Table 2, column 1. Of the 3749 female heads of household interviewed, 3323 had data on stigma. The mean NLD stigma score was 39 stigma units and mean SoE score was 47 units , suggesting moderate to low intensity of community stigma. The median age of participants was 29 years old : 23-36 years) and did not differ by level of stigma. 50% of the sample had at least 2 years of education and fewer than 25% have more than 4 years of education, 78% reside in rural areas and 57% reside in isolated districts. Approximately three quarters said they were married and 17% said they were single. Religious affiliations showed significant diversity, with 47% Catholics, 34% Non-Catholic Christians, 9% Muslims and about 10% other religions. Fewer than 50% of participants were fluent in Portuguese . The average distance from the center of enumeration areas to the nearest public health facility was 6.2 km . About 48% of the participants reported that they were not aware of their HIV infection risk, 25% were confident that they were not at any risk of HIV infection, while 25% thought they were at risk of being infected with HIV; 2% disclosed that they were already HIV positive. Disclosure of HIV status was higher in the subset that reported recent use of PMTCT services . About 12% were familiar with HIV infection through reported awareness of own or friend/close relative's HIV serostatus. Selfreported healthcare contact varied by type of healthcare: 76% reported lifetime use of public health facilities, 22% private pharmacy and 46% traditional healers. About one third believed that ART helps people with HIV to be healthier and about 9% think there is alternative treatment for HIV in the community or from traditional healers. Mean score for legal rights certitude was 100 points . Participants who were excluded from the analyses because of missing stigma data did not differ by age, income, distance from clinic, HIV knowledge and other important variables of interest. However, they were less likely to be Catholic and to understand Portuguese. In univariate analysis , NLD and SoE stigma share a number of correlates in these data, but they seem to be influenced by many other different factors and in a highly complex manner. In multivariable analyses the following relationships were observed: Endorsement of Negative Labeling and Devaluation Contrary to our hypothesis , participants who believe that ART is helpful had on average of 2.90 greater NLD scores than those who do not consider ART helpful . The average difference in NLD scores between participants who contact traditional healers versus those who say they do not contact traditional healers was 1.58 stigma units . The positive relationship with belief in alternative treatment for HIV was of marginal statistical significance . Religion was associated with NLD scores: the significant difference in NLD scores was for Protestant vs. That is, Catholics are the reference category and had on average 3 times higher stigma scores than Protestants or Other-Christians. NLD had non-linear relationships with legal rights certitude, HIV knowledge, and empowerment . The marginal plot of NLD and HIV knowledge is shown in Figure 1, Panel A. The convex shape of the curves in panel A suggests that a significant drop in NLD endorsement only occurs among those who are highly knowledgeable about HIV transmission routes. Otherwise the stigmatizing attitudes of participants with low knowledge of HIV transmission routes are as negative as attitudes of participants who were not able to provide a single accurate description of HIV transmission routes. This relationship is much clearer in the subgroup that believes that ART makes people with HIV healthier. The interaction between HIV knowledge and ART efficacy belief was also statistically significant , a partial support for the hypothesized interaction . The moderating effect of ART efficacy belief was significant at HIV knowledge scores #4 units. The hypothesized interaction between HIV knowledge and distance to clinic on NLD stigma was not supported. --- Endorsement of Social Exclusion Table 3 also shows results of regressing SoE with individual level variables. SoE was significantly and inversely related to knowledge of HIV transmission routes, HIV infection of self/ relative/friend, ART efficacy belief, and living in an isolated district as hypothesized . For example, independent of HIV transmission route knowledge, those who believe in ART's efficacy had on average a 7 unit drop in SoE stigma level than those who think ART does not make people with HIV become healthier . Compared with participants who said they did not know their risk of HIV infection, those who were definite that they were not at risk of infection scored 4.54 points more on the SoE scale . We did not detect differences in the endorsement patterns of all participants who were in other self assessed infection Continuous variables are reported as weighted estimates of median , with each observation being weighted by the inverse of the household sampling probability. Categorical variables are reported as weighted percentages, with each observation being weighted by the inverse of the household sampling probability. The 95% confidence intervals include precision estimates that incorporate the effects of stratification and clustering. Tests of association with stigma scale include Spearman's rank correlation and rank sum test . NS = not significant . Because there was evidence that the relationships with NLD and SoE were non-linear, HIV knowledge, legal rights and empowerment are fit using restricted cubic splines. About 7% of the variation in NLD scores can be predicted using the model . The model also predicts about 9% of variance in SoE scores . *MT = Meticais . doi:10.1371/journal.pone.0075744.t003 risk categories versus participants who were risk unaware. HIV infection of self/relative/friend was inversely associated with SoE stigma . However, legal rights certitude was not related to SoE as hypothesized. The hypothesized interaction between HIV knowledge and distance to clinic was moderately supported . Figure 1, Panels D and E indicate that the inverse association between SoE stigma and knowledge of HIV transmission was more pronounced among participants who live 10 km and 20 km away from the clinic than among those who live 0 km and 5 km away from the clinic. Religion was associated with SoE, but only among Muslims vs. Catholics-Muslims had on average 4 times lower SoE stigma scores than Catholics . --- Discussion Factor analysis indicates the co-existence of the orthogonally distinct dimensions of negative labeling and devaluation and social exclusion stigma towards PLWHA. The NLD dimension of stigma is consistent with damaging labels and stereotypes of people living with HIV/AIDS that are detailed in the literature [6,55]. One account noted as many as 290 descriptions of HIV/AIDS and PLWHA among communities in five Sub-Saharan African countries, most of which were negative or communicated harm caused by HIV [6]. Based on the mean score of each dimension of stigma, our sample of female heads of household expressed moderate-to-low levels of stigma. This endorsement of moderate-to-low intensity of stigma is consistent with findings from recent studies done elsewhere in the Sub-Saharan region [59]. Of the 11 statistically significant correlates, only one variable has identical effects on both dimensions of stigma. Thus social exclusion and negative labeling may well operate as different mechanisms and so have orthogonality to them in observed conditions, i.e., an individual might despise but not necessarily discriminate against PLWHA. However, higher knowledge about the transmission of HIV was related to lower stigma or reduced tendency to endorse negative attitudes and behavior towards PLWHA, regardless of the domain of stigma considered. This is consistent with our hypothesis and with literature from both resource-limited and higher income settings [60][61][62][63]. In other studies the inverse correlation with knowledge about HIV has been used as criterion for the construct validity of stigma scales [31]. Results from the baseline survey noted that the adult female participants in Zambe ´zia Province have limited factual knowledge about HIV transmission and prevention [53]. As many as 20% of those surveyed in the province could not provide one correct mode of HIV transmission and about 50% stated they did not know how HIV is transmitted between adults or mother-to-child [53]. This might not be unique to Zambe ´zia Province or Mozambique as similar observations have been made in some regions of neighboring South Africa [64]. These data also indicate that more knowledge is better at predicting low endorsement of community stigma, and that little knowledge might not be better than zero knowledge. Therefore, increased public education to improve knowledge of facts about HIV transmission might still be the way to reduce HIV stigma. The interaction effect of distance from clinic and level of HIV knowledge on community stigma endorsement further strengthens the role of outreach in HIVrelated public health education in this setting. However, in separate analyses where models with and without the legal rights certitude variable were compared, the effects of distance from clinic were weakened by legal rights certitude . Furthermore, both the independent and interaction effects of ART efficacy beliefs suggest that knowledge of HIV transmission routes without strong belief in the efficacy of HIV treatment/therapies might not be enough to reduce stigma. These observations about the independent and moderating effects of legal rights certitude and ART efficacy beliefs suggest the importance of a broader scope for public health education than a sole focus on correct knowledge of HIV/AIDS etiology. Overall, these relationships seem complex and dependent on the domain of stigma considered. For example, ART efficacy belief was associated with greater tendency to endorse negative labeling and devaluation stigma and lower likelihood of endorsing social exclusion . The relationship with NLD stigma seems counterintuitive. However, similarly conflictive responses to ART have been reported in other HIV stigma studies conducted in Sub-Saharan Africa, and attributed to the absence of a cure for HIV/AIDS [10,65]. Roura and colleagues [65] observed that improvements in the health and functioning of persons on long-term ART engenders positive attitudes towards HIV disease among the non-infected, but does not change dominant attributions about HIV transmission and the belief that the HIV infected are fundamentally flawed and incapable of changing their risky and socially deviant behaviors. Theoretically, ART efficacy likely makes HIV infection invisible , making it challenging to apply lay criteria for screening the HIV infected and exerting social control over them. As noted by Roura and colleagues [65] ART efficacy might create new bases for social anxiety about HIV infection in some settings. Elsewhere it has also been noted that, while there is an increasing willingness among health workers to treat HIV infected patients, high knowledge about HIV transmission routes coupled with poor infection control practices might inadvertently increase the fear of contagion among these health workers [66]. Mental illness literature, which has a lot to say about stigma, has shown that treatment efficacy does not guarantee elimination of stigma [67][68][69][70][71]. For example, the stereotype of dangerousness, that is rife in views of mental illnesses, has been shown to persist in attitudes towards the treatment experienced or those considered to have responded well to treatment for mental illness [67,71]. Our data suggests the possibility that negative stereotypes might persist in the public mind despite increased knowledge of HIV prevention and treatment efficacy. The relationship between perceived risk of HIV infection and stigma is unclear and weak. However, believing that one is at no risk of HIV infection was associated with the greatest intention to socially exclude PLWHA independent of all other factors. Among those who considered themselves to be at some risk of HIV infection, social exclusion stigma did not vary by intensity of perceived risk. Thus public education to improve awareness of the risk of HIV infection is needed. Another observed anomaly is that increased familiarity with HIV infection was associated with greater endorsement of negative labeling and devaluation but less willingness to socially exclude PLWHA. Given the negative association observed between legal rights certitude and negative labeling and devaluation, the inconsistent effect of familiarity with HIV infection could be due to difference in social norms about behavior vs. attitudes, i.e., overtly discriminatory behavior might not be socially accepted in this context. We cannot ascertain if such self-censorship is present outside of our research context, i.e., whether or not the difference observed in these data is an artifact of the survey interview itself. Since these are cross-sectional data and no comparable study of these factors has been done among female heads of households in Zambe ´zia Province, we cannot confirm these observations. These and related issues need to be further investigated. Capabilities such as empowerment agency and knowledge of legal rights are increasingly seen as critical for enhancing the ability of individuals and communities to move out of poverty and socio-political oppression [72]. Indeed some of the anti-stigma initiatives in Mozambique and elsewhere have prioritized clear definition and guarantees for the legal rights of PLWHA [32,39]. Data on the impact of promoting greater awareness and protection of the legal rights of PLWHA or of strengthening generic legal institutions on community stigma are scarce. The legal system can influence community stigma by dictating acceptable and unacceptable conduct and expressions, means of redress available to victims of stigma, and punishments for offenders. One might, therefore, expect a negative relationship between these capabilities and endorsement of stigma towards PLWHA . However, no clear relationships between capabilities and stigma were observed in our data. Nonetheless, there was some support for our hypothesis that confidence in the household's access to the modern legal system and the likelihood of due process is associated with lower endorsement of HIV stigma. The observed relationship was with negative labeling and devaluation but not with social exclusion stigma. We do not know if knowledge of HIV-specific statutes would have a different effect since such data were not gathered in the Ogumaniha-SCIP survey. Our data suggest that there could be added value in raising community awareness of the legal rights of PLWHA as part of health education strategies for reducing community stigma. The potential effects of knowing HIV-specific legal rights and that of confidence in the workings of the legal system on community stigma need to be further investigated. One behavioral and emotional anti-stigma response that has been associated with legal rights knowledge is righteous anger among people who have a stigmatized condition. Watson and colleagues observed that people who considered negative stereotypes of mental illness to be illegitimate and had an intact sense of self-worth tended to externalize their disdain for community stigma through expressions of righteous anger rather than accept community stigma and blame themselves for the stigmatizing condition. In our study NLD stigma endorsement is a close approximation to agreeing with negative stereotypes. Thus the relationship between legal rights certitude and NLD stigma is likely to be moderated by perceived legitimacy of community stigma. Such a moderation model needs to be examined in future studies so that the impact of human rights awareness on HIV stigma can be specified much more clearly than was done in the present study. Demographic variables also showed important effects. For example, the influence of religious affiliation seems to depend on domain of stigma considered: the major difference seems to be between the self-reported attitudes and behaviors of Muslims and Non-Catholic Christians. Compared to Catholics, Muslims were significantly less likely to endorse the social exclusion of PLWHA, but more likely to endorse negative labeling and devaluation . Compared to Catholics, Protestants and those in the Other Christian category had less tendency to endorse the negative labeling and devaluation of PLWHA. Although those self-reporting affiliation to Muslim and other religions had higher NLD scores than Catholics, these differences were not statistically significant . Religious social norms likely shape HIV stigma in this context. The difference made by type of religion could be seen as indicating the importance of tailoring anti-stigma interventions to the religious affiliations of target groups. There might be added value in exploring the potential for interfaith strategies for stimulating community-wide dialogue about HIV stigma and ways to address it over single-faith strategies. In other studies, the interaction between stigma and perceived risk of HIV infection has been shown to significantly influence uptake and engagement in HIV services [50]. In this study, contact with voluntary counseling and testing facilities was negatively related to NLD but unrelated to SoE, while contact with health facilities in general was negatively related to SoE but unrelated to NLD stigma. The impact of stigma on services uptake might be dependent on the domain of stigma being considered. The model R 2 statistics were #10%, indicating that a significant proportion of the variance in stigma observed in this sample is not explained by the 'theory consistent' predictors explored in this study. Alternatively, there was not enough variability in the levels of stigma assessed through this survey. The potential for measurement error needs to be further investigated. There is a possibility that a different stigma instrument, perhaps with more and different items, could have yielded other and more precise domains of stigma. The challenges of finding suitable and validated stigma scales are acknowledged in the literature and present general limitations to stigma research. The stigma module was intended to generate data to describe the nature of the cultural context within which people live with HIV/AIDS in rural Mozambique. HIV stigma reduction is not a core priority of the Ogumaniha-SCIP baseline survey and so would not accommodate lengthy stigma instruments and complex validation study designs. Nonetheless, these data could be the beginning of a process of tracking changes in attitudes over time similar to the General Social Survey in the USA [70] and other settings [73]. Our sample only included female heads of household. Therefore, our findings might not apply to male heads of household. Gender differences in stigma expression and expectancy and the likelihood of ambivalence to ART efficacy need to be investigated further. We could not distinguish the manifestation of NLD and SoE stigma among HIV positive vs. HIV negative individuals because we had no reliable data on the serostatus of study participants. However, the possibility of distinguishing anti-stigma interventions by serostatus needs to be investigated, particularly based on how NLD and SoE stigma are related differently to HIV familiarity and perceived risk of HIV infection variables as well as proxies of contact with the health system. --- Conclusions Our analysis shows the complex relationships among increased HIV/AIDS knowledge, perceived ART efficacy, legal rights certitude and demographic characteristics, and stigma towards PLWHA in rural Mozambique. Part of the complexity stems from the potential duality of rejection and acceptance in people's attitudes and behavior, and the fact that the same knowledge, beliefs and environmental factors impact rejection and acceptance tendencies differently. Prejudice literature, as well as findings about mental illness stigma, suggests that stigma reduction is one of several potential outcomes of stigma reduction interventions, including a change from overt to increasingly subtle forms of stigma [17,63]. Creative anti-stigma strategies are needed that take advantage of the observed disjuncture in the labeling process of stigma, i.e., the duality of negative labeling and devaluation, on the one hand, and social inclusion on the other. Effective stigma reduction strategies at the community level may have to be domain specific, with emphasis on the enduring effects of negative labeling and devaluation. ---

Background: Increased HIV/AIDS knowledge and access to antiretroviral treatment (ART) have been hypothesized to decrease HIV stigma. However, stigma persists as a barrier to HIV services uptake. We studied the relationship between stigma, knowledge and attitudes towards HIV and its treatment, and confidence in the legal system (legal rights certitude).We analyzed data from a household survey of 3749 randomly sampled female heads of households in 259 enumeration areas across 14 districts of Zambe ´zia Province, Mozambique. The questionnaire included questions about beliefs, attitudes and behavior towards PLWHA, HIV transmission knowledge, treatment-related beliefs, and legal rights certitude. Factor analysis distinguished two stigma constructs: Negative labeling and devaluation (NLD) and social exclusion (SoE). Multivariable linear regression was used to determine the association between stigma, knowledge of HIV/AIDS, treatment-related beliefs, and legal rights certitude, while controlling for variance in socio-demographics. Results: A 4-point increase in knowledge about HIV transmission was associated with more than a 3 unit decrease in NLD and SoE stigma scores (p,0.001). Given HIV transmission knowledge, a 25-point increase in legal rights certitude was associated with a 4.62 unit drop in NLD stigma (p,0.001); we did not detect an association between legal rights certitude and SoE stigma. Knowing at least one HIV positive person was associated with lower SoE (23.17, 95% CI: 25.78, 20.56); no association with NLD (p = 0.1) was detected. ART efficacy belief was associated with higher NLD and lower SoE (2.90 increase and 6.94 decrease, respectively; p#0.001).Increasing knowledge about HIV transmission and access to ART are likely to reduce stigma, but neither of the two is a panacea. Raising community awareness of the legal rights of PLWHA might improve the efficacy of stigma reduction efforts. Strategies that focus on specific domains of stigma might be more effective than generic stigma reduction strategies.

problems of simplicity that are mathematically complicated, but in the eyes of Weaver these mathematical complications were not the same as complexity, since complexity could only emerge in systems populated by many interacting components. These are systems that evolve, adapt, and beget diversity in ways that cannot be well-described using calculus, so for science to continue its progress, a new math needed to emerge. That new math was statistics and probability, which allowed scholars to focus on a new class of problems: problems of disorganized complexity. Problems of disorganized complexity are problems that can be described using averages and distributions, and that do not depend on the identity of the elements involved in a system, or their precise patterns of interactions. A classic example of a problem of disorganized complexity is the statistical mechanics of Ludwig Boltzmann, James-Clerk Maxwell, and Willard Gibbs, which focuses on the properties of gases. Here, each molecule inside a gas can be considered to be the same. These problems also involve the mathematical reformulation of Darwin's theory evolution advanced by Karl Pearson, Sewall Wright, Jack Haldane, and Ronald Fisher, which focus on the coarse patterns of that generate from combining variation and selection. But the probability and statistics methods that helped advanced our understanding of systems of disorganized complexity still had limitations, as it could not account for the complex patterns begot in the intimacy of society and life. So in the midst of the twentieth century Weaver saw the dawn of a new era: the era of organized complexity. This was a new science focused on problems where the identity of the elements involved in a system, and their patterns of interactions, could no longer be ignored. This involved the study of biological, social, and economic systems. According to Weaver, to make progress in the era of organized complexity, a new math needed to emerge. Since Weaver published his seminal paper scholars have improved our understanding of systems of organized complexity. Part of this progress involves the development of the science of networks, which is a clear response to Weaver's request. Networks are mathematical objects that help us keep track of the identity of the elements involved in a system and their patterns of interactions, making networks the ideal structures to describe problems of organized complexity. Of course, networks are no panacea, or represent a complete toolbox, but together with the tools of calculus, probability, and statistics, they provide us with a more comprehensive toolbox that we can use to describe systems of organized complexity and test hypothesis about how these work. But the study of systems of organized complexity did not grow radially from Weaver's seminal paper, or from a single stream of literature. Instead, it grew in patches, in independent and often unconnected parts of academia. Unlike other academic efforts, which usually grow from a single academic source, the science of organized complexity was born fragmented, with pioneers in many different fields. Soon after Weaver's paper, biologists like Francois Jacob , and Stuart Kaufmann , developed the idea of regulatory networks. Mathematicians like Paul Erdos and Alfred Renyi, advanced graph theory while Benoit Mandelbrot worked on Fractals , . Economists like Thomas Schelling and Wasily Leontief , , respectively explored self-organization and input-output networks. Sociologists, like Harrison White and Mark Granovetter , explored social networks, while psychologists like Stanley Milgram explored the now famous small world problem. The science of organized complexity emerged in the second half of the twentieth century, just as Weaver predicted, but it emerged in parallel efforts that are not easy to reconcile. My goal in this paper is not to reconcile these streams of literature-that would be too ambitious-but to create a narrative that translates the value of the research conducted in one stream of literature to scholars from other streams. To achieve this goal, however, I will need to make some coarse simplifications. For simplicity, I will divide network science into two main streams, the streams advanced by social scientists, and pioneered by sociologists, political scientists, and economists-who of course, have important differences among them-and the stream of literature advanced by the natural scientists, which is dominated by scholars trained as physicists, computer scientists, mathematicians, and biologists, from geneticists to ecologists. Certainly, there are important differences within each of these groups and subgroups. In the context of the social sciences, economists tend to focus more on the creation of formal models built on ideas of utility maximization than sociologists, and are also, more obsessed with methods for causal identification than sociologists, even though sociologists are no strangers to causal inference. Computer scientists are also quite different from physicists, since they tend to focus more, for instance, on the optimization of algorithms than on the universality of distributions. But nevertheless, these within group differences can often be small compared to the differences observed between groups, so I will nevertheless take a first pass at painting this picture using a thick brush. I apologize to those that will take this simplification with outrage. Also, some people may argue that the division between these sciences is no longer present, since there has been an increase in multidisciplinary efforts that transcend traditional boundaries. There are now, for instance, new degree programs on network science that have hired scholars from multiple disciplines . At the same time, we should not overgeneralize from a few examples. These examples, while encouraging, may not be representative of all academic departments, and could be in fact, seen as the emergence of yet another group. So with the danger of oversimplifying I will focus on dividing academia into a few coarse groups for two reasons. First, I will focus in these larger groups because reviews that transcend the boundary between the social and natural sciences are rare, but I believe them to be valuable. One such review is Borgatti et al. , which compares the network science of natural and social sciences arriving at a similar conclusion to the one I arrived. Second, I believe these diverging bodies of literature are in desperate need of mutual understanding, and to achieve that understanding, we need to help translate the research goals and intentions of one group of researchers to the language of the other . Of course, the breadth of the effort implies that I am destined to fall short, and make a review that is both, narrow and incomplete. Also, for those who are experts in a particular stream of literature, parts of this review will seem dated, since I am not focusing on what is more recent, but on the historical trajectories of the ideas advanced by scholars in each of these streams. For a comprehensive summary of the literature advanced by a particular branch of the literature I recommend readers to look at reviews that focus on more narrow subjects. The purpose of this review, therefore, is not to summarize all of the streams of literature that discuss networks, 1 but to pick a few illustrative examples that can help translate the goals advanced by scholars working on different corners of what is a vast intellectual space. I hope this exercise is useful for the growing community of scholars working on networks, and also, that it contribute to the educational efforts needed to establish the study of networks as a field. --- Links and Link Formation Links are the essence of networks. So I will start this review by comparing the mechanisms used by natural and social scientists to explain link formation. Before I describe these mechanisms, however, I will note that even the notion of what is considered a link can be different for scholars in both streams of literature. Social scientists' idea of links-or ties-often incorporates information on the context of social interactions and the type of support that flows through that interaction. For instance, social scientists make strong differences between friendship ties, co-working ties, and family ties, because different types of links provide different forms of support and affect the dynamics of different aspects of society. Even more, among family ties, social scientists will often differentiate between the ties connecting parents to their offspring and to each other, since these are relationships ruled by a different set of norms and expectations. Also, in the context of the literature on social capital, social scientists interpret ties as the embodiment of trust , , . So in the social science literature, and in particular in the literature advanced by sociologists and political scientists, links are not simply a recollection of instances of communication, but social relationships that are meaningful only as long as the individuals involved in them trust and support each other in specific ways. Natural scientists' definition of links, however, has been more abstract and driven by the availability of data. Their implicit definition of connections involves recorded acts of communications that are independent of social context , a technological link , or collaboration in a creative process . This contrasts with the definitions preferred by social scientists, where the type of relationships is considered important. For instance, a co-authorship link is not the same if it is between two students, or between a student and his or her advisor. When connecting the people that acted in the same movie, natural scientists do not differentiate between people in leading or supporting roles. Moreover, when details on the nature of links are included, they include quantitative rather than qualitative approaches , rather than labels or types). For instance, in the study of mobile phone networks, the frequency and length of interactions has often been used as measures of link weight , , . More recently, this literature stream has also begun to focus on multiplex networks, which are networks where nodes have multiple connections among them , even though the idea of multiplex networks had also been explored by the social science literature . Still, this has not brought the study of networks by natural scientists closer to the literature advanced in the social sciences, since the focus has been primarily on the generalization of network measures to networks in which multiple links are available and on the mathematical implications for robustness and fragility of networks with multiple links , , , . But the differences between the approaches followed by natural and social scientists do not stop in their conceptualization of what links are, but extend to the link formation mechanisms that they usually use to explain the structure of networks. Social scientists explain link formation through two families of mechanisms; one that finds it roots in sociology and the other one in economics. The sociological approach assumes that link formation is connected to the characteristics of individuals and their context. Chief examples of the sociological approach include what I will call the big three sociological link-formation hypotheses. These are: shared social foci, triadic closure, and homophily. The social foci hypothesis predicts that links are more likely to form among individuals who, for example, are classmates, co-workers, or go to the same gym . The triadic closure hypothesis predicts that links are more likely to form among individuals that share "friends" or acquaintances. Finally, the homophily hypothesis predicts that links are more likely to form among individuals who share social characteristics, such as tastes, cultural background, or physical appearance , . The link formation mechanisms favored by economists, on the other hand, favor strategic decisions making. Building on game theory scholars have built , strategic games where self-interested individuals form and severe links as they evaluate the cost and benefits of their interactions. These are network formation mechanisms that are inspired in idea of equilibrium, which dominates neoclassical economics since formalized it over a century ago. Yet, strategic games look for equilibrium in the formation and dissolution of ties in the context of the game theory advanced first by , and later by . The link formation mechanisms used by Natural scientists, however, are often not based on strategic games, or dependent on social context, but instead, are based on models that are agnostic about the characteristics of the individuals involved in the formation of a link. For the most part, natural scientists model the evolution of networks as stochastic processes that tie back the evolution of a network back to its structure. A popular example of such a stochastic model is the idea of preferential attachment, or cumulative advantage. Preferential attachment is the idea that connectivity begets connectivity. More formally, it is the assumption that the probability that a node would acquire a new link depends linearly in the number of nodes that are already connected to it. Preferential attachment is an idea advanced originally by the statisticians John Willis and Udny Yule in , but has been rediscovered numerous times during the twentieth century. Willis and Yule were looking to explain the scalefree structure of the networks defined by biological taxonomies . Yule found that most genera had only one species, but that most species came from a single genus. The explanation Yule gave was that the more species a genus has, the more species it can eventually produce. Rediscoveries of this idea in the twentieth century include the work of , , , and , who published the modern reference for this model, which is now widely known as the Barabasi-Albert model. This growth and preferential attachment model is a perfect example of a network formation mechanism that ties the formation of links to the topology of the network, rather than to individual characteristics of nodes. Preferential attachment, in its pure stochastic interpretation, stands in stark contrast with the models of network formation favored by social scientists because preferential attachment is agnostic about why people connect to highly connected nodes, or hubs-it just assumes they do, and then, leverages that assumption to explain a coarse property of the network . For many social scientists, however, preferential attachment would represent an incomplete explanation of link formation since their main interest would be to understand why people want to connect to hubs. Is it because they have a prestige bias ? Are they searching for status? Economic gains? Popularity? Arbitrage Opportunities? For a social scientist, even if all of these alternative hypotheses lead to similar outcomes, separating among them is what it is relevant. In contrast, most natural scientists are happy with a preferential attachment type model since they often consider differences in the reasons why nodes connect to hubs to be irrelevant, especially if these mechanisms do not introduce any changes in the coarse structure of the resulting network. In the language of natural scientists these differences are symmetries that give rise to the same universal mechanism: preferential attachment. In the eyes of the social sciences, however, understanding which of all of these hypotheses drives the formation of the network is what one needs to explore. Another example of a link formation mechanism advanced by natural scientists and that connects the formation of links directly to the topology of the network is the idea duplication and divergence. In a duplication and divergence model, links are formed as old nodes are duplicated together with a subset of their connections. Think of the biological interactions available to a duplicated protein. If the gene that encodes a protein duplicates, then, the "twin" protein will initially connect to the same proteins than the original protein. Yet over time, one of the two proteins can develop new interactions, and also, lose some of the old interactions it had, since the interactions of a protein are redundant with that of its "twin." As a result, you get a model in which the network grows as nodes are duplicated, and where links grow as these duplicated nodes evolve the set of connections they have. This duplication and divergence models also lead to preferential attachment, since nodes with more links are more likely to see one of their neighbors duplicate. Duplication and divergence models , have been used with great success to explain the structure of biological networks , including their heterogeneous degree distribution, modularity , , and hierarchical structure . Duplication and divergence models, however, are also agnostic about the non-topological characteristics of nodes, and therefore, represent another example of a link formation mechanism that ties the evolution of a network back to its own topology. 2 Juxtaposing the models of link formation advanced by social scientist and natural scientists, however, helps us uncover some important differences between the approaches followed by these two coarsely defined groups of scholars. The link formation mechanisms preferred by social scientists involve a sense of identity and strategy, since they focus on who is connected to whom and why. By contrast, the link formation mechanisms preferred by natural scientists are more neutral, focusing on how connections depend on the position that an individual occupies in a network, but not on who that individual is, or on the strategic choices that pushed an individual to make or cut a connection. As we will see next, these different approaches are justified by different scientific objectives. Stochastic approaches are good at explaining features that are observed over a large variety of networks, what natural scientists call universal features, such as the heterogeneous degree distributions of many networks or their short average path lengths . When the goal is explaining similarities between networks observed in different systems , then it makes sense to use a model that is context agnostic, rather than specific. On the contrary, if a person's goal is to explain and interpret the structure of a narrowly defined network in a specific context, then adopting a context agnostic model will be inadequate, since those models provide answers that are too loosely specified to be informative of the specific social processes driving the network. In the next section, I continue to explain the differences between the theoretical approaches used to model networks by natural and social scientists by going deeper into the applications used to justify the study of networks. This should help illuminate the preferences for the link formation mechanisms that I have just described. --- Applications of Networks Consider the link formation mechanisms that are preferred by sociologists and that we described above as the big three: These are homophily, shared foci, and triadic closure. Why would social scientists prefer these link formation mechanisms to stochastic models, such as Yule's preferential attachment process ? The answer can be found by asking: what can these link formation mechanisms help explain that Yule's process cannot? One example is the ethnic and cultural segregation of social networks , , , , . Segregation is a property that is connected to the structure of networks, but that goes beyond it, since it involves the distribution of individual level characteristics, such as the ethnic and cultural background of the individuals in that network. We can explain ethnic and cultural segregation, however, by invoking the big three network formation mechanisms of sociology: shared foci, homophily, and triadic closure. Together, these three mechanisms are expected to give rise to homogenous self-reinforcing groups, like the segregated groups we observe in society. Of course, there is more to segregation than what can be explained by these three mechanisms, but this simple example should give you a hint about why they are a better starting point in this case. As another example consider the labor market, as studied by economic sociologist rather than economists. Economist sociologists, such as Mark Granovetter, have shown that most individuals get jobs from friends and acquaintances . This observation is relevant because it shows that labor markets are embedded in social structure and hence, that the links formed by social mechanisms constrain economic activity . This is an observation that also contrasts the theories advanced by new-institutional economists that see social structure as the equilibrium of the institutions that are optimal for a given type of commercial interaction. Yet, Granovetter's empirical labor market results have been reproduced repeatedly and show that social networks drive, on average, roughly half of the labor market , . Moreover, Granovetter and others have shown that the jobs assigned through social interactions are primarily the high paid, high-skilled jobs, giving validity to his embeddedness theory. Now, to show how social theories can be combined to advance explanations of complex social phenomenon, let's put together the embeddedness of labor markets and the dynamics of social segregation described above. Together these two mechanisms imply that individuals from different ethnic groups will face different job opportunities . This is another example of a relevant question that is connected to the structure of networks, but that requires a nuanced description of both, the individuals involved in a dyad and of how individual characteristics affect the process of dyad formation. Labor markets and segregation are two questions that interest social scientists and that require an understanding of networks that goes beyond network topology. Yet, to understand social scientists' description of ties we need to dig deeper and include also their interpretation of ties as the embodiment of trust. Trust is a dimension of social networks that has been of paramount importance for social scientists, but that has been mostly ignored by natural scientists. The importance of trust in social network literature is well reflected in the literature on social capital. This is a literature advanced by sociologists , , , , political scientists , , and economists . Social networks and trust are intimately connected, since individuals are more likely to trust those with whom they share social connections, interact frequently, and share friends and acquaintances with , , , . Yet, not all social connections embody trust. Trust, however, also helps us interpret the emergence of triadic closure, since people connect to friends of friends because they are more likely to trust them-you can think of the connection to the mutual friend as a form of insurance . Going back to our labor market discussion, trust can also be used to explain the role of social networks in the labor market, since the willingness of people to hire friends of friends could be seen as a reflection of the trust that flows indirectly through an open triad-or of the insurance represented by the mutual friend. Of course, friends are also likely to have similar skills, so homophily is expected to reinforce Granovetter's labor market results. Finally, trust can also be used to explain the size of the firms that populate an economy. As Francis Fukuyama argued in his book Trust , economies where people are more likely to trust strangers will form larger social and professional networks and will gravitate towards complex industries . 3 Finally it is worth noting that trust, through the theory of social capital, has been connected with long-term economic growth-even though these results are based on regressions using extremely sparse datasets. Nevertheless, the evidence suggests that social capital and social institutions are significant predictors of economic growth, after controlling for the effects of human capital and initial levels of income , . 4 So trust is a relevant dimension of social interactions that has been connected to individual dyads, network formation, labor markets, and even economic growth. People studying trust have also been able to connect trust to other social institutions, such as the family. In fact, societies where individuals rely more heavily on family links are also societies where individuals are less likely to trust strangers, and consequently, less likely to engage in political and civic participation , . Moreover, some of the social and economic correlates of family relationships are known to survive in the families of immigrants, suggesting that the effect of social institutions in the type of links that a society forms is long lasting . 5 So what are the applications that interest natural scientists? Natural scientists have not focused primarily on trust, labor markets, or social segregation. Instead, they have focused mainly on five things: explaining the topology of networks in terms of stochastic models, developing algorithms to quantitatively describe the topology of networks, from their degree distribution to their community structure, modeling the spread of diseases and information on networks, using networks as a mean to model large interconnected systems, by mapping connections among diseases, language, or similar products, and to study the implications of network structure for game theoretical outcomes, not in the context of link formation, but primarily in the context of the evolution of cooperation. Goals and are shared among natural scientists and social scientists, in part, because the puzzle of cooperation is one of long tradition in both evolutionary biology and economics . The first two goals of natural scientists, explaining network formation through stochastic models and quantifying network structure are highly intertwined, since natural scientists use the structural features of networks to validate the predictions of their stochastic models. This has lead natural scientists to create a vast literature on the empirical characterization of network structure which focuses on looking at a network's degree distributions , , , its hierarchical structure , , , community structure , , , , , and also, the likelihood of hubs to connect to hubs. This last property is usually studied under the name of degree-degree correlations , but alternative ways of measuring this property have been rebranded, as the "richclub" phenomenon , or "fractal" networks , . The tendency for hubs to connect to hubs, however, is an idea that is closely related to homophily, but in the hands of natural scientists shows their preference for topological measures, since degree correlations study the tendency for links to form among pairs of nodes characterized by a topological feature instead of an intrinsic property , or and acquired property . But what questions can natural scientists answer with their context agnostic approaches? Some questions that are popular among natural scientists are questions of percolation, in which the vulnerability of networks to the removal of nodes due to errors and attacks is studied , , . Also, topological approaches are popular in the link prediction literature, which is popular among computer scientists and has applications for social media companies , , . Yet the link prediction literature is a good example of a disconnection between the literatures advanced by natural and social scientists. Even though all link prediction papers build heavily on measures of triadic closure , , they often do not cite the social science literature on triadic closure. Instead, they focus on comparing a repertoire of measures of open triads and machine learning algorithms in search for the combination of features and algorithms that maximize the accuracy of the predictions. One place where natural scientists have been relatively successful at is at using the idea of a network to map connections in non-social systems. This usually involve taking a bi-partite network, like the network connecting diseases to genes , countries to products , or languages to people , and creating a projection to connect diseases that share genes, products that are exported in tandem, or languages that are co-spoken. In the context of medicine and biology these ideas are manifested in the new literature on network medicine, which is based on the creation of networks connecting diseases that are caused by the same genes , that share metabolic paths , or that affect the same patients These disease networks are being used to identify new disease genes, and uncover the biological significance of disease-associated mutations . But there are also applications of networks that interest both natural and social scientists. One of these is the spreading of epidemics and information. The basic question that this literature tries to answer is where people get new information from , or how diseases spread. Of course, the position that a person occupies in a network should affect the information that is available to him or her, or the probability that a person interacts with another individual that is carrying a disease. In the context of the natural sciences this literature has emphasized the development of mathematical models of disease contagions. Following the pioneering work of William Kermack and Anderson McKendrick , many scholars have explored the consequences of incorporating networks structure explicitly in the process of epidemic spreading , , , , and also, of including other effects, such as differential susceptibility-the fact that not all nodes are equally vulnerable to a disease -into these models. Social scientist, on the other hand, have focused on what ties are more likely to bring in new information, which are primarily weak ties , and on why weak ties bring new information , ). In recent years, the studies of diffusion processes in networks have been expanded to works that extends beyond the spreading of infectious diseases, or information about jobs, and now include the spread of behaviors and health conditions, such as obesity and smoking , , the diffusion of innovations , behaviors , emotions , and even the industrial structure of economies . Finally, we have the literature connecting game theory and networks in the context of the evolution of cooperation. The evolution of cooperation is a classic scientific question since there are many situations where individuals have an incentive to cheat, making the prevalence of cooperation a deep theoretical puzzle. The original attempts to explain the emergence of cooperation in large populations focused on the role of strategies involving punishment schemes and reciprocity . More recently, however, heterogeneous networks have been found to be effective promoters of the evolution of cooperation, since there are advantages to being a cooperator when you are a hub, and hubs tend to stabilize networks in equilibriums where levels of cooperation are high , , , . These results, however, have also been challenged by human experiments finding no such effect . The study of cooperation in networks has also been performed in dynamic settings, where individuals are allowed to cut ties , promoting cooperation, and are faced with different levels of knowledge about the reputation of peers in their network . Moreover, cooperating behavior has seen to spread when people change the networks where they participate in . --- Building bridges In the last sections I juxtaposed the literature of social scientists and natural scientists working on networks, two groups of academics that often fail to see eye to eye. This juxtaposition helped us illustrate important differences between the methodology and questions explored by each of these groups of scholars. Scholars trained in the social sciences focus on explaining social and economic phenomena, and are interested on how networks affect the individuals and organizations forming these networks . As the sociologist Linton Freeman remarked in The Development of Social Network Analysis: "The social network approach is grounded in the intuitive notion that the patterning of social ties in which actors are embedded has important consequences for those actors. Network analysts, then, seek to uncover various kinds of patterns. And they try to determine the conditions under which those patterns arise and to discover their consequences." Natural scientists, on the other hand, are interested in identifying features that are common to a wide variety of networks, and hence focus on the use of stochastic and generative models that are agnostic about the properties of individuals, or their goals. This pushes natural scientists to focus on what different networks have in common, instead of what sets them apart. As Barabási explains in Linked : "The diversity of networks in business and the economy is mindboggling. There are policy networks, ownership networks, collaboration networks, organizational networks, network marketing-you name it. It would be impossible to integrate these diverse interactions into a single all-encompassing web. Yet no matter what organizational level we look at, the same robust and universal laws that govern nature's webs seem to greet us." Yet, despite their difference in focus, each literature has been able to make great advances. While social scientists have made great progress in questions that need to be understood in a nuanced social context, like the role of trust on labor markets, natural scientists have advanced the understanding of network questions that are not context specific, and are governed by general constraints. But can these approaches learn from each other? Both of these approaches can benefit from each other, since natural scientists often throw the baby with the bathwater when exploring social questions in absence of a well defined social context, or by not considering the multiple hypotheses that a social context can imply. On the other hand, social scientists often have problems seeing explanations that are based on statistical properties or constraints that are independent of context, since they have developed a strong taste for theories that are more teleological than those advanced by natural scientists. So they can see mirages of mechanisms in situations where an explanation based on constraints is enough. And in this taste for teleology is where we find one of the great differences between social scientists and natural scientists, since these differences bring each of these disciplines to a different interpretation of what they mean by answering the question: "why?" Social scientists look for answers to why questions that involves the purposeful action of actors, no matter whether those purposes are driven by self-interest , by a process of socialization , or whether they developed in a struggle for power . Natural scientists, on the other hand, answer why questions by looking at the constraints that limit the behavior of the system. This is an approach that builds on the tradition of physics, since the earth does not orbit the sun 6 for a purpose, but because the law of gravity acts as a constraint that shapes our planet's elliptical motion. By the same token, the reason why momentum is conserved in many physical systems is because the Hamiltonian of these systems does not depend on that systems' position. Why questions do not always involve purpose, but it is important to note when they do. So can these literatures come together? I think there are two ways in which they can. One is by creating teams that use the diversity of skills found in scholars from different disciplines as an advantage. The other one is to focus on topics that are of common interest to scholars from the social and natural sciences, such as online social interactions. So let's look at the first of these two options. Scholars from the natural and social sciences have a diversity of skills that when put together can be very powerful. Social scientists are often great narrative theoreticians, and are great at framing arguments and highlighting the social relevance of findings. Also, social scientists are trained to think in terms of multiple chains of causations, so they are good at identifying potential underlying assumptions and hypotheses. They also have a good toolbox of quantitative techniques they can use to separate among multiple hypothesis, from simple multivariate regressions, to matching methods, and instrumental variables. Natural scientists on the other hand, are comparatively skilled in the development and implementation of new algorithms and metrics, and are often better at the use of graphical statistical methods, which in presence of the right renormalization techniques can help uncover universal distributions. Also, natural scientists have a natural tendency to think of statistical controls in terms of null models. In network science, these null models are useful because they help discount patterns that are explained by simple structural features, like a network's degree distribution , , . Moreover, computer scientists tend to be good at optimizing algorithms, which is something required for scaling research to large datasets. So in principle, collaborations between social scientists and natural scientists could result in high quality work because natural and social scientists have a larger and more powerful toolbox when working together than in isolation. In fact, there are quite a few examples of successful work involving collaborations between natural and social scientists. These involve the work by the sociologist Matthew Salganik, and the physicists Peter Dodds and Duncan Watts in market forces , , or the work by the sociologist Brian Uzzi, the economist Benjamin Jones, and the physicist Stephan Wuchty on knowledge production by teams , . Other examples include the collaborations between the physicist Cesar Hidalgo and the economist Ricardo Hausmann in economic complexity and economic growth , . The other way in which these two literatures can come together is less methodological and more topic-oriented. In fact, there are many topics that are of the interest of both natural and social scientists. Two that I mentioned previously are the diffusion of information and contagious diseases, and the evolution of cooperation. Another topic, of more recent appearance, is social media and its effects in society. In recent decades sociologists, like Barry Wellman, have written extensively about how modern communication technologies are affecting social structure. In the early 2000s Wellman begun countering Robert Putnam's claim that social capital was declining , and argued instead that social capital was moving online . More recently, Wellman and Lee Rainie summarized this argument in the idea of networked individualism, the idea that individuals are no longer bound to closely-knit groups, but are instead nodes in sparser global networks . But natural scientists are also interested in online social networks, and they have been good at developing scalable algorithms to help analyze large samples of these networks. Their focus has been on identifying influential individuals in social media , , verifying the veracity of information , and performing sentiment analysis , , . So online social behavior could be a new opportunity for these literatures to come together. But beyond topics, and skills, there are still some important differences in the format and style of publications that can limit cross-collaboration among scholars working on different parts of the fragmented network literature. One of these formal aspects is the enormous difference in the formats of publications that are preferred and accepted in the natural and social sciences. Differences in format may seem cosmetic, but due to the social nature of peer-review, differences in the expectations that academics have with respect to format can result in papers being quickly misunderstood, and rejected, by scholars trained in different fields. One important difference here is the role of an introduction in a paper. In the natural sciences, especially in physics, introductions are considered boilerplate summaries of previous research that are mostly irrelevant, since what makes or break a paper is the results section. That is why in the natural science literature there are so many papers that start with a variant of the generic sentence: "In recent years there has been much interest in the study of networks." In the social sciences, however, the introduction is essential to the paper, since it is the place where scholars fully explains his or her contribution in the context of what is known. These differences also translate into the length of the papers. Natural science papers tend to be extremely short in length by social science standards , and hence, economize language in their introductions and literature reviews . Often, natural scientists cite literature in one or two short paragraphs, instead of dedicating a multipage section detailing the contributions of other scientists. Social scientists on the other hand, write extensive literature reviews in which many of the papers cited are described in multiple paragraphs. Social science papers put substantial effort on discussing the previous literature before presenting any of their own work, and are often rejected if they fail to provide a good review of the literature. Unfortunately, these styles are incompatible. Write a natural science introduction for a social science audience and your paper will be rejected before the reviewer sees the results section. Write a social science introduction for a natural science audience and you will be scoffed away for being "unnecessarily verbose." Another formal difference involves the use of graphical statistical methods and multivariate statistics. The first ones are preferred by natural scientists and often avoided by social scientists, while the reverse is true for multivariate statistics. These differences, however, are also misinterpreted as shortcomings since social scientists often think of graphical statistical methods as "non-serious," since they are limited in their ability to control for co-founding factors, while natural scientists find that the use of tables, instead of graphical representation of results, occludes information about functional forms, which natural scientists consider important. In this paper I provide a brief and incomplete review of what is a large and fragmented literature on network science. Hopefully, the juxtaposition presented here helps explain the value of the approaches followed by academics in both of these streams of literature and helps stimulate further discussion in the study of systems of organized complexity. --- Endnotes 1 For instance, in this review I will not include the life sciences among the natural sciences even though they have done extensive work on biological networks. My decision not to include the work of biologists in this review is to simplify the scope. Also, I will not discuss financial networks, or graph theory. For the most part, I will be discussing work involving social networks , as these networks have been of the interest of both social scientists and natural scientists. 2 Certainly, saying that natural science approaches focus only on link formation mechanisms that tie back to topological features is a tad unfair. After all, this is more a matter of emphasis than an absolute claim. In fact, in the natural science literature there are approaches to link formation that do focus on the non-topological characteristics of nodes. A good example here is the introduction of the idea of a node's fitness . A node's fitness is an exogenous parameter that models the attractiveness of linking to a node, and that was introduced to destroy the strong correlation between a node's age and connectivity that is implied in a model based purely on growth and preferential attachment . The treatment of fitness in the natural science literature, however, has been mostly abstract. Fitness has a distribution and a value, but not a unique or even narrow interpretation in terms of a social or economic characteristic. Moreover, little effort has been made to link fitness to one of its many possible interpretations. In high-school friendship networks, is fitness a reflection of the physical beauty of a student or its sport prowess? In networks of commercial interactions, is fitness a reflection of the quality of service, or the marketing muscle of a firm? These questions are here to illustrate the contrast between the interests of natural and social scientists, since these questions would be more of the interest of social scientists than of natural scientists. The latter would be mostly content with assuming that differences in fitness affect the evolution of network structure, while the former would want to know why some individuals are more attractive than others, even if these reasons do not change the overall structure of the network. 3 Here it is worth noting that there are important cases where these large efforts in socialization emerge as a consequence of state intervention, like the aircraft industry in Brazil, or in France, as described by Fukuyama. In any case, the spontaneous emergence of large networks in societies endowed with trust tends to be a more successful and rapid form of economic development than the one that is forced by state interventions, which have a low success rate. 4 It is worth noting that these empirical results hinge on small sample sizes, since data on trust is available for a few countries over relatively short time periods. 5 At the individual level, low trust is associated with traumatic experiences, belonging to a group that historically felt discriminated against, being economically unsuccessful in terms of income and education, and living in a racially mixed community or one that is unequal in terms of income and education . 6 or more precisely, the center of mass between the earth and the sun. --- Competing interests The author declare that he have no competing interests.

During decades the study of networks has been divided between the efforts of social scientists and natural scientists, two groups of scholars who often do not see eye to eye. In this review I present an effort to mutually translate the work conducted by scholars from both of these academic fronts hoping to continue to unify what has become a diverging body of literature. I argue that social and natural scientists fail to see eye to eye because they have diverging academic goals. Social scientists focus on explaining how context specific social and economic mechanisms drive the structure of networks and on how networks shape social and economic outcomes. By contrast, natural scientists focus primarily on modeling network characteristics that are independent of context, since their focus is to identify universal characteristics of systems instead of context specific mechanisms. In the following pages I discuss the differences between both of these literatures by summarizing the parallel theories advanced to explain link formation and the applications used by scholars in each field to justify their approach to network science. I conclude by providing an outlook on how these literatures can be further unified."Science must, over the next 50 years, learn to deal with these problems of organized complexity. "-Warren Weaver, 1948 How science evolves? And how is scientific progress tied to improvements in mathematics? In 1948 Warren Weaver, the director of the Rockefeller Foundation's division of natural sciences, published an essay hoping to answer these questions. His now classic paper: Science and Complexity (Weaver 1948); explained the three eras that according to him defined the history of science. These were the era of simplicity, disorganized complexity, and organized complexity. In the eyes of Weaver what separated these three eras was the development of mathematical tools allowing scholars to describe systems of increasing complexity. The first era, that of problems of simplicity, focused on systems that could be described using trajectories and surfaces. These are the systems that could be modeled using the calculus developed by Newton and Leibniz. Of course, there are many

Background Until the 1990s, the role that children and young people played in providing informal family care received virtually no academic or policy recognition. Since then, research into the area has substantially increased our understanding of these children and their lives and difficulties. Children who provide such care are generally referred to as «young carers» [1], although different countries use different terms. For example, the term «young caregiver» is used in the United States [2], and «children who are next of kin» is used in Norway and Sweden [3]. Although a number of definitions of these exist, most have the following common features: young carers are young people under the age of eighteen who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult. The person receiving care is often a parent but can be a sibling, grandparent, or another relative with a disability or a chronic illness, mental health problem or condition requiring care, support, or supervision [1]. It is important to note that the type of care provided by young carers extends beyond the basic household chores that many children and young people carry out. Research shows that young carers provide care in all areas where care is needed, including physical and emotional care , household management and taking care of siblings [4][5][6]. The reasons for providing care are complex and often related to the absence of other informally available networks, the lack of suitable formal care arrangements, familial preferences as well the natural family bond to the person in need [4][5][6][7][8]. More recently, Becker and Becker [9] broadened the research by including older children and young people and defining a "young adult carer", as a person aged between 18 and 24, who provides care or support to another family member free of charge. Research has shown that these young people also face substantial difficulties in education and in employment [10][11][12]. Furthermore, according to international studies, young adult carers are often unemployed, or work part time in order to be able to carry on with their caring responsibilities. They may have no appropriate qualifications for employment because of the impact that their caring role has had on their education and training [13]. Research has highlighted the negative outcomes that caring has on children, for example, restricted social and educational opportunities. Much of this work has originated in the United Kingdom and it has had an impact on policy and legal provision in that country, with specific legislation to protect young carers and a national network of hundreds of service programmes. Apart from a few other countries including Australia, Canada, New Zealand, Norway, Sweden, Germany, Austria, and France, most nations and governments have not engaged in identifying and supporting young carers, even though it is likely that between two and 4 % of all children take on caring roles within their families. This reflects a lack of awareness about children who care and the contributions that they make to informal family care, as well as a lack of engagement by academics and by policymakers. By the end of 2011, Switzerland had a residential population of just under eight million people, with 2.1 million children, adolescents and young adults aged up to 24 years . Therefore, if the findings from other countries can be extrapolated to Switzerland, there are at least 33,000 to 66,000 child and adolescent carers under 19; and an additional 22,000 to 26,000 young adult carers aged 19-24 living in Switzerland. These carers need to be identified so that they and their families receive proper support and the children and young people are do not provide excessive or inappropriate care-giving, or that which involve risky situations. However, there is little awareness of children, adolescents and young adults under 24 involved in caring for family members in Switzerland. The numbers of these so called "young carers" and "young adult carers", the sort and the extent of their tasks, as well as their impact are unknown. The needs and wishes of young people with a caring role and their families are also unexplored. --- The international situation Studies from England, Australia, USA, Canada, Africa, Germany, Austria and Scandinavian countries have all shown that there are children, adolescents and young adults who regularly look after a chronically ill family member; hence this is a global phenomenon. Estimates of the number of child, adolescent and young adult carers differ between countries. In Great Britain, around 2.1% of children under 18 years are carers [9]); in Austria [8] and Australia [13] the figure is 3.6%; and in the US it is 3.2% [16]. Sweden and Norway are in the process of trying to identify and «count» the numbers of young carers in their countries using a methodology of self-disclosure. The kind of support children provide for their families ranges from household tasks , helping siblings , to support regarding their illness [16,17]. The amount of care carried out by children, adolescents and young adults is extensive; 14% of child and adolescent carers under 18 in Austria, for example, state that they are providing care for five to six hours per day [8]; in Great Britain the figure is 9% [9]. This shows the level of responsibility that these children have in their everyday life, many of whom started caring from an early age. --- Methods --- Study aims Considering the findings from international research, it is likely that children and young adults in Switzerland also play a significant role in delivering familial support. The current study, therefore, explores the personal, familial and social situations of young carers and young adult carers. The study's aims are to: 1. Learn more about awareness of the issue of young carers and young adult carers among health care, education, and social services professionals. 2. Estimate the number of children, adolescents and young adults who act as family carers. Such data are essential for the creation of appropriate and adequate support services. 3. Investigate the type and the intensity of children's caring roles, their pathways into care-giving, the socio-economic and demographic circumstances of the young people and their families. 4. Examine the participation of children, adolescent and young adult carers in education, employment and social activities, and their plans for the future. 5. Make recommendations for supportive programmes for younger carers, based on existing structures but also involving new structures which are especially oriented to the target group. The pursued objectives are the perception and acceptance of child, adolescent and young adult carers as a social reality in Swiss society; the protection of children's rights and their participation in all spheres of life which are relevant to their age and maturity; and, as a preventative measure, the welfare and promotion of the health of younger carers as well as support for the family as a whole. 6. Make young carers in Switzerland visible and increase the awareness of this group among professionals and the public. Good estimates of the prevalence of young carers in Switzerland, as provided by this project, and details of their support needs will show clearly that young carers do exist in the country and that they do require services and support. In the UK, for example, such research findings were instrumental in changing the law and policies towards protecting young carers. Additionally, research has shown that nationally-produced research is necessary for policymakers [18] to achieve change. Hence, by publication of the findings through a range of media we intend to make young carers 'visible' to policymakers, academics and health and social care professionals. --- Study design The project comprises of three stages: 1. A national Swiss-wide online survey to examine awareness of the issue of younger carers among professional populations in the education, health and social services sectors; 2. An online survey of 4800 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; and 3. Semi-structured interviews with 20 families comprising family members with care needs and younger carers; to consolidate and validate the other stages of the study; and to hear directly from caredependent family members and younger carers about their experiences of the issues identified in the online surveys and previous published research. --- Methodology Work package 1: Online survey of professionals' awareness of young carers and young adult carers The online survey will examine the awareness of the issue of young carers and young adult carers among professional populations. The survey will target general practitioners , specialists , social workers, teachers, nurses, education policy makers and health policy makers in order to evaluate the level of awareness and knowledge about children and young adults who are carers in Switzerland. Professionals in the three areas of health care, education and social services in all language parts of Switzerland will be included in the survey. The results will provide a baseline of the current understanding of the issue in Switzerland; whether, overall, there is good or poor awareness; and whether there is a better awareness among some groups but not others. From this information, it will be possible to map out what professionals in Switzerland know about the situation of this vulnerable group of young and young adult carers. --- Sample and field approach An online survey tool will be developed for the use with the different groups of professionals. The aim is to recruit 1000 health and social care professionals whose daily work includes contact with children. These respondents are, therefore, likely to meet children who could potentially have caring roles. The sample will include teachers, school nurses, medical practitioners who have a direct involvement in schools, and child social workers. A convenience sampling approach will be used. Participants will be recruited via third parties i.e. with the help of existing contacts in the professions, and through approaching persons in charge of health care, education and social services organisations. --- Data analysis The data will be collected using an online survey and the link will be sent by email to potential respondents. The data will then be formatted and prepared for analysis by IBM SPSS Statistics . Descriptive and inferential statistics will be used as appropriate. The analysis will examine the overall level of awareness of young carers by health and social care professionals; whether there are differences in awareness between professionals working in different areas ; whether age or the length of time in the profession has an influence on awareness; and whether there are any geographical differences in levels of awareness. The analysis will also show how many young carers the respondents encounter in their professional role and how this varies between the different professions. --- WP 2: Online survey to identify the number and characteristics of young carers in Switzerland The second quantitative work package will estimate the number of children, adolescents and young adult carers in Switzerland and the extent of their caring roles. A large sample of children in schools will be surveyed to identify those that have caring roles and those that do not. Additionally, those with caring roles will be asked to identify their care-giving activities and responsibilities. From these data, estimates of the extent and type of caring among young people in Switzerland, as a country overall, will be calculated and compared with similar prevalence data from other countries. This will provide a measure of the extent to which Swiss youth are involved in family care and how this compares to other countries of a similar socio-economic status. --- Sample and field approach In the academic year 2013/2014 in Switzerland, there was, according to the survey of the Swiss Federal Statistical Office, 10,630 educational institutions in 26 cantons, including nursery schools, primary education institutions and different types of secondary educational institutions [19]. The present study focuses on pupils and students enrolled in secondary educational institutions. Hence, the population of interest consists of 2367 institutions teaching approximately 630,000 pupils and students. Out of this population, 4800 pupils will be selected by means of a two-step sampling procedure. In the first step, a probability proportional to size school sample will be drawn. Within sampled schools, a particular number of classes will be selected across available grades. In order to ensure representativeness, the school frame will be stratified by language region and school stage . Within these explicit strata, schools will be sorted by canton, school type, school sponsorship and school size. School type refers to different performance-related study programs. While in most Cantons the first secondary school stage is divisible into three skill levels, the later secondary stage consists of six different programs, such as preparatory courses for the university entrance certificate, vocational education or diploma schools. The total number of sampled schools will be allocated to the six explicit strata in a proportional manner. The exact number of schools and classes drawn per strata will be calculated after extensive analyses concerning school and class size variability. The school-based survey will use self-completion questionnaires which have also been used in other countries , thus enabling cross-national comparisons to be made with a large Swiss sample. The questionnaires include the psychometric instrument MACA-YC18 developed in England and used widely internationally, and a standard questionnaire of well-being, supplemented by other biographical questions. Because the questionnaires will be administrated by schools who have agreed to take part in the research , we expect a large response rate. The identification of young carers out of a greater collective of pupils is a challenge in terms of theoretical measurement and practical research because often they do not perceive themselves as carers. Families, in which children carry caring responsibility, often consciously avoid this kind of identification. The MACA is a proven tool which reveals caring among children who hitherto may not have regarded themselves as young carers. The questionnaire has to be administered by schools following training, so that the majority of young carers, as well as those who do not have a caring role, feel motivated to complete the questionnaire. We will work closely with the selected schools to ensure they have full understanding of the purpose of the research and receive training in how to administer the questionnaires to their pupils. Schools will be provided with a DVD presentation about the research and the questionnaires, and they will also have access to a researcher who can be physically available on site to assist with the administration of the questionnaires if required. --- Data analysis The survey data will be collected by using an online system and then transferred to a Microsoft Access database that has been specifically developed for the research. The data will then be formatted and prepared for analysis by IBM SPSS Statistics to produce descriptive statistics showing distributions of age, gender, location and other variables. In terms of inferential statistics, parametric and nonparametric methods will be used, as appropriate. The analysis will determine the prevalence of young carers within the sample and this will be extrapolated to the general population using complex sample analysis. The analysis will explore whether there is a difference in prevalence of young carers by gender and by geographical region; in what way it is influenced by age; and whether there is a difference in the extent of caring between genders and age groups. Additionally, the analysis will examine whether there is an association between the extent of caring and the children's wellbeing . --- WP 3: Interviews with younger carers and their ill family members in Switzerland This final part of the project enables us to test out our findings from the previous work packages through direct face to face interviews with young carers and the family members who receive care across Switzerland. Using a semi-structured interview schedule alongside psychometric instruments which measure the extent and nature of caring and the impacts of caring on children , we will be able to hear directly from families about their caring experiences, interventions and support received, and to validate the findings from other parts of the study. For example, young carers and their care-dependent family members' accounts of the support they have received in education, health and social services will be examined in the context of the awareness of the issue of young carers among professionals in those fields . --- Sample and field approach A sample of 20 families will be recruited where there is a care-dependent person with an illness, disability or mental health problems and at least one child or young adult in that family is a carer . This will provide at least 20 interviews with care-dependent family members and 20 interviews with younger carers . In some families, there may be more than one child who is a carer and this will increase the sample size. Interviews with care-dependent family members and children will be conducted separately. Families will be recruited through medical practices, health associations and social services and NGOs working with specific family types . --- Data analysis Interviews with younger carers and care-dependent family members will be recorded and fully transcribed for thematic data analysis using a grounded theory approach [22]. Psychometric data will be collected using the MACA-YC18 and the PANOC-YC20 . This will enable a 'score' to be determined for the level of caring among each of the children and a measure of their positive and negative adaptation to caring . A standardised measure of health and well-being will be used with the family members. --- Discussion The synthesis of these three work packages will make a major contribution to new knowledge and enable the research team to develop recommendations for evidencebased policy and practice to meet the needs of younger carers and their families in Switzerland. The aim is to enable practitioners to be better able to recognise and identify younger carers in whatever settings they may be; and to make policy and practice recommendations for interventions to promote the development, education, health, well-being and future employability of younger carers in Switzerland. The situation of younger carers in Switzerland has not been researched before. The number of these younger carers is unknown, as is the extent and nature of their caring activities and the outcomes for their health, wellbeing, psycho-social development, education, transitions to adulthood and future employability and economic participation. The needs of younger carers and their ill and disabled family members have not been systematically investigated. This will be the first study in Switzerland to investigate these issues and to develop evidence-based recommendations for policy and practice, drawing also on international research. The present study therefore fills an important national and international research gap. It will be the first study to collect important data on the awareness, extent, type and impact of caring activities among children and young people in Switzerland, and to cross-link these findings with robust evidence from other countries. The study will reveal the extent of awareness of the issue of young carers among medical, social, health, educational, and other groups in Switzerland; the proportion and number of young carers in the normative child population, and what these young carers 'do' in terms of their caring roles; and direct accounts by families of their care-giving and receiving experiences. By publicising our method we hope that countries which as of yet have not conducted any studies into the lives and conditions of young carers and young adult carers will use the same instruments and protocols to carry out rigorous research to enable meaningful cross-national comparisons. --- --- Abbreviations Authors' information AL is a professor and programme director of the programme "learn&care" at the Careum research institute. She was the first person in Switzerland doing research on young carers and young adult carers. CJ is a trained sociologist and works as senior researcher in the programme. MF is doing her PhD in the programme. JS also works as senior researcher and expert in statistics. UM und MV are experts in educational research and statistics and will especially support WP2. SB is an internationally recognised expert in young carers research. --- --- --- Not applicable --- Competing interests The authors declare that they have no competing interests. ---

Background: In Switzerland, the issue of young carers and young adult carers -young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult -has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation.The project is comprised of three stages: 1. A national Swiss-wide online survey to examine awareness of the issue of younger carers amongst professional populations in the education, health and social services sectors; 2. An online survey of 4800 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; and 3. Semi-structured interviews with 20 families comprising family members with care needs and younger carers, to consolidate and validate the other stages of the study; and to hear directly from care-dependent family members and younger carers about their experiences of the issues identified in the surveys and in previous published research. Discussion: The needs of younger carers and their ill and disabled family members in Switzerland have not been systematically investigated. This will be the first study in the country to investigate these issues and to develop evidence-based recommendations for policy and practice, drawing also on international research. The present study therefore fills an important national and international research gap. It will collect important data on the awareness, extent, kind and impact of caring amongst children and young people in Switzerland, and cross-link these findings with robust evidence from other countries. The study will reveal (a) the extent of awareness of the issue of young carers amongst medical, social, health, educational, and other groups in Switzerland; (b) the proportion and number of young carers amongst a normative child population, and what these young carers 'do' in terms of their caring roles; and (c) direct accounts by families of their care-giving and receiving experiences.

INTRODUCTION Most people prefer to remain in their own home environment up to the end of their life . However, many people actually die in another place, such as a hospital or nursing home . Transitions at the end of life can be related to several factors, such as multimorbidity, the availability of health care, a lack of social support or the patient's wishes . It is thus far from certain people will receive end-of-life care in their own environment, whether patients in general or terminally ill people with an intellectual disability . However, being cared for in a familiar surrounding may be even more important for people with ID. Authors who argue in favour of end-of-life care in the client's own home environment point to the importance of familiarity and routine for people with ID . Professionals in ID care services wish to care for their clients with ID themselves up to the very end . However, several other studies show that staff working in ID care services often lack expertise and education in end-of-life care . Ryan et al. ), for instance, found that Irish professionals caring for people with ID often lack confidence and training in end-oflife care, which led to considerable stress when they cared for terminally ill persons. In other care services, residential elderly care organisations or hospices, professionals may have more expertise and equipment to deliver high-quality end-oflife care. However, professionals working in such care services say that they have insufficient knowledge and communication skills to provide the specific attention that people with ID need . Moreover, studies reveal the difficulties that people with ID encounter when they move to general elderly care services, such as difficulties with participating in social activities and with building relationships with other residents . This raises the question of what the best place is for providing end-of-life care for people with ID and what considerations professionals have regarding decisions about the place of care. Only one study specifically addressed the decision-making concerning the place of end-of-life care for people with ID: Tuffrey-Wijne found that although dying in their own home environment may be the ideal option for many people with ID, resources for supporting end-of-life care in the home environment were not always available. There have been other studies addressing decision-making about the place of care for ageing people with ID. These studies also found that arguments for moving a person to another setting were often related to limited resources for the care of aged clients in their own home environment . Moreover, Janicki et al. found that professionals' arguments that were used in decisions to keep an ageing person in their own home situation were often comparable with arguments used in decisions to move them to another setting. These studies suggest that resources may be important arguments in deciding upon the place of end-of-life care. Yet the considerations underlying decisions whether or not to move a person with ID to another care setting have only been loosely described so far. Hence decision-making about the place of end-of-life care for people with ID remains unclear: where should end-of-life care be provided and why should it be provided there? To gain a broad insight, this study will examine both the general beliefs and the considerations in actual decision-making about the best place of endof-life care. Moreover, we will investigate whether different care professionals have distinct a priori beliefs about the best place of end-of-life care. The following research questions will be addressed: 1. To what extent do people receiving care from an ID care service move to another care setting to receive end-of-life care? 2. What considerations do the professionals concerned actually take into account when deciding on the place of end-of-life care for people with ID? Are decisions to provide end-of-life care in the client's own home environment based on different considerations compared with decisions to provide end-of-life care elsewhere? 3. What beliefs do professionals have with regard to an appropriate environment for end-of-life care for people with ID? Do care staff, ID physicians and general practitioners differ in these beliefs? --- METHOD --- Research subjects A pre-structured questionnaire was sent to three groups of professionals: 4. Care staff employed by care services for people with ID. The care staff were recruited from an existing nationally representative research panel of care professionals in the Netherlands . This research panel consists of a group of registered nurses , certified nursing assistants and social workers who are prepared to fill in questionnaires on current topics in health care. Nurses generally receive more basic or post-basic vocational training in end-of-life care than social workers . All registered nurses, certified nursing assistants and social workers who were members of the panel and who worked in ID care services were sent a questionnaire. 5. ID physicians. ID physicians receive a 3-year specialist education in the care for people with ID. They are generally employed by an ID care service. All members of the Dutch professional association of ID physicians were sent a questionnaire. 6. GPs. In the Netherlands, people with ID receive medical care from either an ID physician or a GP, with GPs commonly caring for people with mild ID living in the community. GPs were recruited by sending a questionnaire to a nationally representative sample of 1000 GPs, drawn from the national registration of about 9000 GPs in the Netherlands . --- Survey questionnaire The questionnaire focused on considerations and beliefs concerning an appropriate environment for end-of-life care for people with ID. The questions were based on a scan of relevant literature , the results of two group interviews that were conducted with professionals and family members , and two group interviews with people with mild or moderate ID . Professionals and family members were interviewed about their considerations in decision-making concerning the place of end-of-life care, using the technique of moral case deliberation . People with ID were interviewed twice about the best place of end-of-life care using nominal group technique . The considerations that emerged from the literature and the group interviews were used to formulate the questions used in the survey questionnaire. The questionnaire was tested for comprehensibility and completeness among six ID physicians and six ID care staff members. A specific part of the questionnaire addressed the place of care of the last client with ID for whom the respondent had provided end-of-life care. Respondents were asked where the client lived before the start of the illness, where end-of-life care was actually provided and what considerations were actually taken into account in deciding on the place of end-oflife care . Beliefs about an appropriate environment for providing end-of-life care were measured by 11 statements that incorporated different aspects of the place and provision of end-of-life care . 'Home' was defined as the original home situation of the person with ID, referring to all forms of accommodation . Also, some questions were included on the respondent's background characteristics and workrelated characteristics. For GPs, the questions on end-of-life care formed a part of a broader questionnaire on their experiences with patients with ID. GPs usually have only a few patients with ID in their practice and will therefore have little or no experience with end-of-life care for people with ID. Therefore, GPs were not asked the specific questions about their last patient with ID who needed end-of-life care. --- Analysis In order to answer research question 1, crosstabs were calculated to measure the frequencies and percentages for the combination of original home situation before the start of the illness and the place where end-of-life care was actually provided. In order to answer research question 2, all considerations that were mentioned by the respondents were coded using a coding system that was developed on the basis of the prior scan of relevant literature and group interviews . Two authors coded the answers . Fisher's exact tests were used to explore differences in considerations between decisions to provide end-of-life care in the client's own home environment and decisions to provide end-of-life care elsewhere. In order to answer research question 3, the percentage selecting 'agree' or 'strongly agree', means and standard deviations for the belief questions were calculated to measure the beliefs of professionals concerning the provision of end-of-life care in the client's own home environment. ANCOVAs were performed to explore differences in beliefs between groups of professionals. The ANOCVAs included an adjustment for the possible influence of experience in end-of-life care and for the interaction between experience in end-of-life care and professional background. All analyses were performed using Stata 12.1. --- Ethical considerations The protocol for conducting the group interviews with people with ID was approved by the Medical Ethical Committee of the VU University Medical Center. The protocol for the questionnaire study and the group interviews with professionals and family members was in accordance with the Dutch Medical Research Involving Human Subjects Act . All respondents received a letter informing them of the aim and goal of the study. Study participation was voluntary. The responses were anonymous and non-traceable to individuals. --- RESULTS --- Background of the respondents A total of 718 questionnaires were completed. The overall response rate was 46%. The response rate was 67% for care staff, 53% for ID physicians and 38% for GPs. The 196 care staff comprised 85 registered nurses, 8 certified nursing assistants and 103 social workers. The 377 responding GPs all had people with ID in their practice. However, reflecting the limited expertise GPs have with terminally ill people with ID, only 114 completed the questions on end-of-life care. Table 1 shows that the responding ID physicians have on average less work experience as a professional than the care staff and GPs . ID physicians have more experience in providing end-of-life care for people with ID than care staff . Moves to another care setting A total of 255 care staff and ID physicians responded to the questions about the last client with ID for whom they provided end-of-life care. Seventy-eight per cent of the clients concerned died less than 2 years ago. Table 2 shows that most lived in a residential setting or group home in the community. The table also shows that most received end-of-life care in their original home environment. This was particularly the case for people who lived in a residential setting. The people who had their own apartment in the community or lived with family were least likely to receive end-of-life care in their original home environment. Most people who changed care settings moved to another department of the ID care service. Transitions to the home of a family member, a hospice or nursing home were less common. The three people who received end-of-life care in another setting all stayed in a hospital. --- Considerations in decisions about the place of end-of-life care The considerations underlying actual decisions about the place of end-of-life care were described for a total of 237 people . Table 3 shows that the top three considerations underlying decisions to provide end-of-life care in the client's own home environment were the client's familiarity with the environment , the team's expertise in end-of-life care and the wishes/preferences of family members . The top three considerations underlying decision to move the client to another place were the team's lack of expertise in end-of-life care , the lack of equipment within the residence and the unavailability of 24/7 care . --- [TABLE 3] We found several differences in how often different considerations were taken into account: the familiarity of the environment and the wishes/preferences of professionals were taken into account more often in decisions to provide end-of-life care in the client's own home environment than in decisions to provide end-of-life care elsewhere. The burden on the team, the number of professionals available, the availability to provide 24/7 care and the equipment in the residence were taken into account more often in decisions to provide end-of-life care elsewhere than in decisions to provide end-of-life care in the client's own home environment. --- Beliefs concerning the provision of end-of-life care in the client's own home environment Table 4 shows that almost all professionals believe that every effort should be made to ensure that the client can stay in their own home environment and that care should be offered 24 h a day, 7 days a week . Most respondents do not believe that a team without nursing experience cannot provide good end-of-life care. Absence of experience in end-of-life is also not considered to be an obstacle to providing end-of-life care in the client's own home environment. The client's wishes are considered to be leading , but only 41% believe that this preference outweighs the quality of care that can be given at that place. Professionals generally do not believe that the equipment in a residence is an obstacle to the client staying in their own home environment, nor is the presence of other residents. Care staff are more likely than ID physicians and GPs to believe that the wishes of the client are always leading and they are more likely to stress the importance of 24/7 care. Fewer GPs than ID physicians believe that every effort should be made to ensure that the client can stay in their own home environment, and more GPs worry about the experience of professionals. GPs are also more likely than ID physicians and care staff to believe that professionals from other care organisations are able to care for seriously ill people with ID. ID physicians are least likely to believe that the presence of other residents is an obstacle to providing end-of-life care in a group home. --- DISCUSSION Most of the professionals in this study believed that every effort should be made to ensure that a person with ID can receive end-of-life care in their own home environment. In practice, most people who received care from an ID care service in our study were able to remain in their own home environment, with the familiarity of the environment being the foremost consideration. This is a larger number than the figures we have from studies of the general population . Our study also revealed that although a lack of nursing expertise and adequate equipment is not generally believed to be an obstacle to providing end-of-life care in the client's own home environment, still the lack of expertise and equipment were the main considerations in decisions to move a client. This may explain why people living in their own apartment in the community or with family were more likely to be moved than people who lived in a residential setting. Despite the belief of care staff in particular that the wishes of the person with ID should always be leading in deciding on the place of care, only 8% of the care staff and ID physicians explicitly mentioned that the wishes of the client were taken into account in actual decisions. --- Familiarity and relationships Care staff and ID physicians said that staying in a familiar environment with care staff who know the person well and have known them for a long time provides that person with emotional security. This sense of security is important for people in the general population too. Yet it may be even more important for people with ID to be close to familiar caregivers, as it can be very difficult to 'read' their needs and identify signals such as distress and pain . McCarron et al.'s study also demonstrated the importance of long-term relationships at the end of life, as for the staff in their study the maintenance of the relationship with the person with ID and dementia even outweighed the burden of the care on the team . Strong wishes of professionals to care for a client until the very end may also play a role. The wishes and preferences of professionals mentioned in our study were all in favour of keeping the client in their own home environment. Likewise, Wiese et al. found that staff were unanimous in their preference for end-of-life care at home where possible, including staff with negative past end-of-life care experiences. As for relationships with other residents, their presence is not believed to be an obstacle to providing end-of-life care in the client's own home environment. --- Resources needed to provide end-of-life care A lack of expertise was the foremost consideration in decisions to move a client. This emphasises the need for continuing training in end-of-life care, particularly as an earlier study revealed that only 15% of care staff in ID care services feel adequately trained to provide good end-of-life care . Nevertheless, professionals generally do not believe that a lack of nursing expertise or experience in end-of-life care is an obstacle to providing end-of-life care. This may be a reflection of the professionals' strong belief that the client should preferably stay in their own home environment. GPs are somewhat more critical; they worry more about a lack of experience and are more likely to believe that professionals from other care organisations are also able to care for seriously ill people with ID. On the other hand, expertise in end-of-life care was also an important consideration in decisions to keep the client in their own home environment. In these cases, the teams' expertise in end-of-life care may have been sufficient or supplemented sufficiently by the expertise of others, although the possibility of employing extra caregivers was not often mentioned as a consideration. Care staff in particular believe the availability of 24/7 care to be very important in determining where end-of-life care is provided. Indeed, the unavailability of 24/7 care was the third most common consideration in decisions to move a client. However, the availability of 24/7 care was rarely a consideration in decisions to keep a client in their own home environment. This may be explained by the fact that many of the clients in our study who stayed in their own home environment already lived in a residential setting, in which 24/7 care may be seen as a natural part of care. --- Wishes of people with ID Being able to die according to your own preferences is generally found to be an important value in end-of-life care . The majority of the professionals in our study also believe that the wishes of the person with ID should always be leading in deciding on the place of end-of-life care. Care staff in particular seem in favour of giving the client's wishes considerable weight in decision-making. This is in line with the findings of Williams et al. , who found that listening to the person with ID is central to the decision-making of ID nurses. Nonetheless, only 8% of the care staff and ID physicians explicitly mentioned that the wishes or preferences of the client were taken into account in actual decisions, while the wishes and preferences of family members were mentioned twice as often . It is unclear what this means. The difference may imply that decisions about the place of care are often driven in practice by professional and practical arguments, such as expertise and equipment, and that the wishes of the client can only be followed when they do not conflict with these professional and practical arguments. This would be in line with the belief that the client's preferences about where they want to spend the end of their life do not outweigh the quality of care that can be given at that place. It points to the responsibility of professionals to provide good-quality end-of-life care and confirms the weight given to resources as important considerations, which is in line with what has been found by Tuffrey-Wijne . It may also be that the wishes of the person with ID were indeed taken into account in the actual decisions, but more implicitly, incorporated in other considerations such as the familiarity of the environment. It is also possible that the wishes were unclear, as it has been found that respecting the autonomy and eliciting the wishes of dying people with ID is very difficult . In that case, new ways to enhance the involvement of people with ID in decision-making need to be explored. --- Strengths and weaknesses An important strength of this study is that we studied both the considerations in actual decision-making and general beliefs. We were therefore able to provide a more profound insight into the decision-making on the place of end-of-life care for people with ID. Another strength is that we were able to recruit a broad group of professionals who work with people with ID by using two nationally representative samples and one members list that covers almost all practising Dutch ID physicians. A possible limitation of this study is the recall of the last client for whom care staff and ID physicians provided end-of-life care, although the majority of these clients died quite recently. Another limitation is that more than half of the actual decisions concerned people living in a residential setting, which may have resulted in an overrepresentation of people who were already receiving intensive care. Therefore, future studies should try to include a larger group of people who live in the community. Furthermore, future research should study the beliefs and considerations of relatives, as relatives are also part of the decision-making process. Finally, more knowledge is needed on how to enhance the involvement of people with ID in decision-making, as their wishes about the place of end-of-life care were rarely mentioned as a consideration in actual decisions. --- Recommendations According to professionals, end-of-life care for people with ID should preferably take place in their own home environment. In this regard, it is positive that most of the clients reported on actually seemed able to remain in their familiar environment. This study also indicates that the home environment needs to be able to provide adequate resources, such as personnel with expertise in end-of-life care, adequate equipment and 24/7 care, as a lack of such resources were the main considerations in decisions to move a client. If ID care services want to promote end-of-life care in the clients' own home, we therefore recommend that they formulate a policy on how to realise end-of-life care in the client's own home environment; encourage professionals to reflect on their own expertise and provide sufficient training and expert consultation opportunities; and provide emotional and practical support for staff. To enhance the involvement of people with ID in decision-making about the place of end-of-life care, professionals could learn from newly proposed models, such as the ASK ME model, that use collaborative principles to involve people with cognitive disabilities as much as possible in decision-making related to their care . * Range = 1-5, 1 = strongly disagree -5 = strongly agree. P values reported for post-hoc Bonferroni test, after ANCOVA, P < 0.05. a Care staff vs. ID physicians: p = 0.016. Care staff vs. GPs: P = 0.015. b ID physicians vs. GPs: P = 0.042. c ID physicians vs. GPs: P = 0.037. d Care staff vs. GPs: P = 0.000. ID physicians vs. GPs: P = 0.000. e Care staff vs. ID physicians: P = 0.000. Care staff vs. GPs: P = 0.000. f Care staff vs. ID physicians: P = 0.000. ID physicians vs. GPs: P = 0.005. g Care staff vs. ID physicians: P = 0.000. ID physicians vs. GPs: P = 0.004. h Care staff vs. ID physicians: P = 0.003. ID physicians vs. GPs: P = 0.000. ID, intellectual disability; GPs, general practitioners.

Background: The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for endof-life care for people with intellectual disabilities (ID). Method: A survey questionnaire was composed based on a scan of relevant literature and the results of group interviews with professionals, family members and people with ID. The questionnaire focused on the respondents' general beliefs about an appropriate environment for end-of-life care and their specific considerations regarding the place of care of the last client for whom the respondent provided end-of-life care. The questionnaire was sent to 294 care staff members recruited from a nationally representative panel of nurses and social workers, 273 ID physicians recruited from the members list of the Dutch professional association of ID physicians, and 1000 general practitioners (GPs) recruited from a nationally representative sample from a national registration of GPs. Results: The overall response was 46%. Professionals predominantly believe that all efforts should be made to ensure that a person with ID receives end-oflife care in their own home environment, and that 24/7 care is available. Respondents indicated that most of the clients (79%) who had last received endof-life care from an ID care service were able to stay in their own home environment. Decisions to keep the client in their own home environment were Bekkema, N., Veer, A.J.E. de, Wagemans, A.M.A., Hertogh, C.M.P.M., Francke, A.L. 'To move or not to move': a national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities.

Although comorbidity and PS measure different things , both variables may be used as surrogate measures of suitability for treatment . It is unclear how well comorbidity and PS capture fitness for treatment but, as the number of comorbidities varies by SEP for cancer patients , this may help to explain inequalities in treatment. Lung cancers are broadly classified into small cell and non-small cell cancers, with NSCLC accounting for B80% of lung cancers. Non-small cell lung cancer can be further divided into squamous cell carcinoma, adenocarcinoma and large cell carcinoma subtypes . Squamous cell carcinoma is strongly associated with smoking, as is SCLC . Adenocarcinomas are a morphologically heterogeneous group and, although they are associated with smoking , they are also found in those who have never smoked, particularly in women . As SEP is associated with smoking and with histological subtype , histological subtype may confound the relationship between SEP and treatment for lung cancer. In this study, we linked Northern and Yorkshire Cancer Registry and Information Centre , Hospital Episode Statistics and National Lung Cancer Audit data sets in order to examine the factors that may help to explain socioeconomic inequalities in lung cancer treatment . The role of stage, histology , PS and comorbidity in statistically explaining socioeconomic inequalities in lung cancer treatment was specifically explored. --- MATERIALS AND METHODS Data sources. The Northern and Yorkshire Cancer Registry is one of eight English regional cancer registries that collect a common minimum cancer data set . Data on SEP, age, sex, histology, tumour, year of diagnosis, GP referral and details of receipt of treatment were obtained from registry data. Comorbidity data were obtained from HES. Incomplete recording of stage data is a major limitation of UK cancer registry data. However, stage data are collected by the LUCADA, a non-mandatory register of clinical information on patients diagnosed with lung cancer in the United Kingdom. The audit initially included only a subset of registry patients . Records were allocated a unique, randomly generated, key number, derived from the NHS number by NYCRIS. Data from the three data sources were anonymised and supplied by NYCRIS. The HES and LUCADA data were then linked to the regional registry data using key numbers. Variables of interest. Socioeconomic position was measured using the agreed methodology for all English cancer registries, the rank of the income domain of the Index of Multiple Deprivation . This is an area-based measure of SEP , grouped into quintiles, where Q5 is the most deprived and Q1 the least deprived. The England-wide distribution of IMD was used. This is periodically updated to allow inclusion of the most recent data. The income domain of IMD2010 was used for patients diagnosed between 2007 and 2010. For those diagnosed in 2006 the income domain of IMD2007 was used. Age at diagnosis was categorised into four groups: age o60, 60-69, 70-79 and 80 þ years. Year of diagnosis was included to take into account changes in rates of treatment over time. GP referral was categorised as yes or no. Lung cancer was categorised into the following eight histological subtypes: adenocarcinoma, large cell carcinoma, non-small cell carcinoma, squamous cell carcinoma, small cell carcinoma, other specified carcinoma, unspecified carcinoma and neoplasm. Lung cancer histology was classified as NSCLC, including adenocarcinoma, large cell carcinoma, non-small cell carcinoma and squamous cell carcinoma subtypes; SCLC; and other histology ), using ICD-0-3 morphology codes to categorise histological subtypes , 2000). When examining NSCLC and SCLC separately, the unspecified carcinoma and neoplasm subtypes were excluded and the other specified carcinoma subtype was included as probable NSCLC . A weighted comorbidity score was calculated by NYCRIS using the Charlson comorbidity index using the number of in-patient HES admissions for 16 specified conditions in the 3-18 months before diagnosis. HES-linked comorbidity data were not available for patients diagnosed in 2009-2010 as, because of national problems in calculating the comorbidity score, there was a time lag in data availability. Comorbidity score was categorised as 0, 1-2, 3 þ , missing or unavailable. Stage and PS data were obtained from LUCADA. Stage was assigned using the TNM staging system and categorised as I, II, III, IV or missing. Performance status at the time of lung cancer diagnosis was recorded on a scale of 0 to 4 using the Eastern Cooperative Group PS scale and categorised as 0, 1-2, 3-4 or missing. Analysis. Data for 29 385 patients with a primary diagnosis of lung cancer , diagnosed between 1 January 2006 and 31 December 2010, were obtained. Of these, 652 had tumour registration based on death-certification only and were excluded from analyses, leaving an eligible cohort of 28 733. The distribution of stage, histological subtype, PS and comorbidity by SEP was examined using w 2 tests. The distribution of each variable in the subgroup that had stage recorded was compared with that in the full cohort using w 2 tests to determine the representativeness of the subgroup. Univariable and multivariable logistic regressions were used to examine the likelihood of receipt of each of three treatmentssurgery, chemotherapy and radiotherapy, at any time after diagnosis -by SEP, in the full cohort and the staged subgroup. Receipt of surgery was also examined for probable NSCLC-only patients . Recipients of chemotherapy and radiotherapy were examined separately in probable NSCLC and SCLC populations. Age, sex, histology , year of diagnosis, GP referral, comorbidity, PS and stage were controlled for in fully adjusted models. A forward stepwise approach was used to explore which variables were important in explaining socioeconomic inequalities in treatment. The R 2 statistic was examined as a measure of model fit, to determine the amount of variance in receipt of treatment explained by each model. Odds ratios with 95% confidence intervals for the likelihood of receipt of treatment in each SEP quintile compared with the least deprived were reported. A likelihood ratio test was performed to determine the overall significance of each categorical variable. Analysis was carried out in Stata v12.0 . --- RESULTS Table 1 shows the demographic and clinical characteristics of the cohort. Of the 28 733 patients included in the full cohort analysis, 7769 had stage and 8885 had a PS score recorded in LUCADA, and 8475 had a comorbidity score ascertained from HES. There were significant differences between the full cohort and the staged subgroup in the distribution of age group, histology, comorbidity and receipt of treatment, but not SEP or sex. The staged subgroups were younger, had a higher proportion of NSCLC patients and a higher proportion receiving treatment. Significant differences in distribution of PS, number of comorbidities and histology, but not stage at diagnosis, were seen by SEP. A higher proportion of more deprived patients had poor PS, more comorbidity and a squamous cell histological subtype . Surgery. In the full cohort, the odds of receipt of surgery were significantly lower in the most compared to the least deprived group in the unadjusted analysis and in the fully adjusted multivariable analysis . When histology was further broken down into histological subtypes then the SEP OR was attenuated and the amount of outcome variance explained by the model greatly increased . A similar result was seen for receipt of surgery in the most, compared with the least, deprived group in patients with probable NSCLC , and in the subgroup that had stage recorded . Chemotherapy. Socioeconomic position was associated with receipt of chemotherapy in the fully adjusted full cohort model . The inclusion of histological subtype rather than histology only marginally attenuated the odds ratio . In the subgroup of patients who had stage recorded, no statistically significant association between SEP and receipt of chemotherapy was found in the unadjusted analysis but was seen in a multivariable analysis including age, sex, histological subtype, year of diagnosis, GP referral, CCI score and stage . However, on the addition of PS to the model the OR was attenuated and this association was no longer significant . Including PS also increased the model fit . When chemotherapy was examined separately in probable NSCLC and SCLC populations, socioeconomic inequalities in receipt of chemotherapy were found for NSCLC and SCLC . For NSCLC patients, the likelihood of chemotherapy increased over time but this was not seen for SCLC. Radiotherapy. No association between SEP and receipt of radiotherapy was found in the full cohort in the fully adjusted model including histology or histological subtype . Similar results were found in the subgroup of patients who had stage recorded . Different patterns of results were seen when receipt of radiotherapy was examined separately in probable NSCLC and SCLC populations, but again were nonsignificant. --- DISCUSSION Principal findings. This is one of the first UK registry-based studies to include a wide range of confounders and potentially important explanatory factors including stage, histology, comorbidity and PS, in order to determine their influence on socioeconomic inequalities in lung cancer treatment. In this study, we found socioeconomic inequalities in the receipt of surgery and chemotherapy, but not radiotherapy, for lung cancer, in the full cohort analyses. Having taken all the above factors into account, socioeconomic inequalities in receipt of surgery persisted. However, socioeconomic inequalities in receipt of chemotherapy were not found in the staged subgroup on addition of PS to the stepwise model. Socioeconomic differences in PS statistically accounted for much of the socioeconomic inequality in receipt of chemotherapy in the staged subgroup. Socioeconomic differences in histological subtype may partially account for some of the observed socioeconomic differences in receipt of surgery observed. Strengths and limitations. The use of multiple data set linkage allowed us to include a broader range of potential confounders than previous UK registry studies . Only two other UK studies have included PS in a multivariable analysis of receipt of lung cancer treatment . We were able to include later years of LUCADA data , which are more complete. The population-based approach and the completeness and validity of the cancer registry data are the strengths of this study, although there may be some under-reporting of chemotherapy and radiotherapy treatments within registry data sets . We used data from the north of England that may limit the generalisability of the findings to other locations. The high level of missing data for some variables is also a major limitation. Multiple imputation was considered but is not recommended, where over 50% of values for a variable are missing . To address the problem of missing data, we analysed complete-case data for the subset of patients who had stage recorded . As results from complete-case analyses can be biased we also analysed the full cohort and included missing categories for stage, PS and comorbidity, although this too can result in bias. The validity of PS and CCI score as proxy measures of patients well-being is unclear. Performance status is a measure of patients acute functional status and need for care, assigned on a scale of 0-4 by the care team. Only moderate agreement in allocating PS score was found in an interobserver reliability study . However, there was good agreement when allocating good compared with poor PS , which were similar to the groupings we employed. The Charlson comorbidity index is a validated instrument for measuring comorbidity over a longer period of time. However, it may underestimate comorbidity as patients who suffer from a relevant condition but are treated entirely in primary care score zero. It has also been suggested that it is a crude measure of comorbidity, as patients with mild and severe forms of a disease receive the same score . This could be a problem for conditions such as chronic pulmonary obstructive disease, where the severity of the disease is likely to influence the likelihood of receiving surgery for lung cancer. However, the index only contains details of conditions that are serious enough to require in-patient care. Interpretation of results and comparison with other studies. Socioeconomic inequalities in receipt of surgery may be partially explained by socioeconomic differences in histological subtype. We found a significant association between SEP and histological subtype, with a lower proportion of squamous cell and higher proportion of adenocarcinoma subtype in the least deprived compared with most deprived group. A previous UK lung cancer study found that adenocarcinoma was less clearly associated with deprivation than other histological subtypes, possibly as it is less strongly associated with smoking , and smoking is strongly socioeconomically patterned. It may be that health factors relating to smoking, rather than histological subtype, help to determine receipt of surgery, and we cannot rule out uncontrolled confounding related to smoking status. It is likely that smokers have generally poorer health and, although we were able to include PS and CCI score in the analysis, these measures may not fully capture this. In agreement with the results from our systematic review of socioeconomic inequalities in lung cancer treatment , we found socioeconomic inequalities in receipt of surgery, and these remained after inclusion of stage, PS and comorbidity. In contrast, the only two other UK studies that included PS in a multivariable analysis of receipt of treatment, using national LUCADA data, found no association between SEP and receipt of surgery but did find an association with receipt of chemotherapy . We also found that, when including PS, SEP remained associated with a lower likelihood of receipt of chemotherapy in the full cohort but that SEP was no longer associated with receipt of chemotherapy in the staged subgroup. The first few years of LUCADA data included only a small subset of registry patients and there were significant differences in stage at diagnosis, histology and PS when comparing patients from hospital Trusts with high levels of missing data with those who had low levels . The validity of the pre-2007 LUCADA data has also been queried due to the poor entry of staging data . It may be that patients included in LUCADA in the early years of the audit are not representative of the full spectrum of patients diagnosed with lung cancer in England and this may explain the different pattern of results found using early audit data compared with studies using registry data. Concordance of recording of data on receipt of chemotherapy in LUCADA compared with registry data is reportedly poor, with 48% of patients with chemotherapy recorded in national registry data having no record of chemotherapy in LUCADA ; therefore, again this might account for some of the differences found. Socioeconomic inequalities in receipt of radiotherapy were not found, although different patterns were seen for NSCLC compared with SCLC, when examined separately. It was not possible to distinguish between palliative and radical radiotherapy. Low-dose palliative radiotherapy is most commonly given, whereas fewer than 10% of patients receive high-dose radiotherapy with potentially curative intent. It is possible that differential effects by SEP might be seen if treatment-intent was examined, with more deprived SEP patients more likely to get palliative radiotherapy, and less deprived patients are likely to get curative radiotherapy. Potentially, these differential effects could effectively cancel each other out in statistical analyses and might help to explain why no overall association was found. Implications for policy and practice. In this study, a higher percentage of more deprived patients had a squamous cell subtype that is strongly associated with smoking, although we were unable to measure smoking status in this cohort. Surgery rates were also lower for this histological subtype. Non-smokers are less likely to develop lung cancer and if they do then it may be that they are more likely to have a histological subtype that is more amenable to surgery. This is a further reason, if any other were required, to continue to promote aggressive antismoking and smokingcessation campaigns. The guidelines indicate that chemotherapy should be offered to stage III NSCLC patients and to stage IV patients with good PS . Socioeconomic differences in PS may determine whether a patient receives chemotherapy. Although there is a long chain of causality from health behaviours earlier in life to health status in later life, healthy behaviours should be encouraged, as patients who are in better health are likely to have a greater chance of receiving chemotherapy. It is unclear whether making lifestyle changes once diagnosed with cancer is likely to do much to improve PS, although a recent systematic review and meta-analysis produced preliminary evidence for improved survival for earlystage lung cancer patients who quit smoking after diagnosis . We were unable to take patient choice into account. Poorer health literacy may influence patient choice and understanding of risk, and this may vary by SEP , as might more fatalistic attitudes and health beliefs. If patients have poor capacity to process and understand basic health information, then they are less able to make appropriate health and treatment decisions . It is important that clinicians take this into account when discussing treatment options. Differences in communication patterns between health professionals and patients by SEP have been described that may influence the treatment prescribed . Doctors may make treatment decisions based on which patients they consider likely to do well, using factors such as age, weight and comorbidity and these judgements may disadvantage more deprived lung cancer patients . Treatment decisions should be clearly documented and should be based on the clinical guidelines. Further research. The results from this study suggest that socioeconomic inequalities in PS statistically explain socioeconomic inequalities in receipt of chemotherapy in the subgroup of patients whose cancer was staged. However, this staged subgroup may not be representative of the full regional cohort as patients within this were more likely to be younger and to receive treatment. A previous study has shown a socioeconomic gradient in completeness of data on stage and grade of cancer, which could be interpreted as inequality in investigative intensiveness . It may be that younger patients receive more intensive investigation and so are more likely to be staged and so, although PS may explain inequalities in chemotherapy in this group, they are a selective cohort. This is a relationship that needs to be clarified in other data sets, ideally with lower levels of missing data for stage and PS. The observed relationship between histological subtype and receipt of surgery has not been consistently reported and further studies are also needed to confirm this association. It would be useful to look at receipt of radiotherapy by curative or palliative intent to determine whether there are different patterns in likelihood of treatment by SEP. --- CONCLUSIONS Socioeconomic inequalities in lung cancer surgery and chemotherapy, but not in radiotherapy, were found. We have been able to investigate a number of factors that may be important in the relationship between SEP and receipt of treatment that have previously not been well explored; however, the high levels of missing data limit the conclusions that can be drawn. Although histological subtype may account for some of the socioeconomic gradients in surgery, it does not explain it all. Socioeconomic inequalities in PS did not explain inequalities in chemotherapy in the full cohort analyses , and nor did stage or number of comorbidities, suggesting that other factors are responsible. Further research is required to investigate the unexplained variance in treatment rates, exploring factors such as patient choice, doctor-patient communication of risk and benefit, and possible system variation by region, hospital and individual clinician. --- CONFLICT OF INTEREST The authors declare no conflict of interest. --- DISCLAIMER The views expressed in this paper do not necessarily represent those of the funders or UKCRC. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. ---

Background: Reducing socioeconomic inequalities in lung cancer treatment may reduce survival inequalities. However, the reasons for treatment variation are unclear. Methods: Northern and Yorkshire cancer registry, Hospital Episode Statistics and lung cancer audit data sets were linked. Logistic regression was used to explore the role of stage, histology, performance status and comorbidity in socioeconomic inequalities in lung cancer treatment, for 28 733 lung cancer patients diagnosed in 2006-2010, and in a subgroup with stage recorded (n ¼ 7769, 27%). Results: Likelihood of receiving surgery was significantly lower in the most deprived group (odds ratio (OR) ¼ 0.75, 95% confidence interval (CI) 0.65-0.86); however, the OR was attenuated when including histological subtype (OR ¼ 0.82, 95% CI 0.71-0.96). Patients in the most deprived group were significantly less likely to receive chemotherapy in the fully adjusted full cohort model including performance status (OR ¼ 0.64, 95% CI 0.58-0.72) but not in the staged subgroup model when performance status was included (OR ¼ 0.88, 95% CI 0.72-1.08). Socioeconomic inequalities in radiotherapy were not found. Interpretation: Socioeconomic inequalities in performance status statistically explained socioeconomic inequalities in receipt of chemotherapy in the selective staged subgroup, but not in the full cohort. Socioeconomic variation in histological subtype may account for some of the socioeconomic inequalities in surgery. In England, less than 10% of those diagnosed with lung cancer survive for 5 years (Coleman et al, 2011). Lung cancer patients of lower socioeconomic position (SEP) have poorer survival (Rachet et al, 2010). It has been suggested that socioeconomic differences in receipt of cancer treatment might at least partially contribute to survival inequalities (Woods et al, 2006). There is some evidence that socioeconomic inequalities in lung cancer survival can be statistically explained by inequalities in treatment (Jack et al, 2006; Forrest et al, 2013b). Socioeconomic inequalities in receipt of lung cancer surgery and chemotherapy, but not radiotherapy, were found in both universal (UHCS) and non-universal health-care systems, in a recent systematic review and meta-analysis (Forrest et al, 2013a). These findings could not be explained by the type of health-care system or by socioeconomic inequalities in stage at diagnosis. However, not all of the studies included in the review reported details of stage and histology, both of which influence treatment type (Forrest et al, 2013a), and very few took comorbidity into account. The review authors recommended that the reasons for socioeconomic inequalities in treatment should be more thoroughly investigated in studies including statistical control for comorbidity, stage and histology (Forrest et al, 2013a). Performance status (PS), a global measure of functional status and an important consideration for clinicians treating lung cancer (NICE, 2005), is a factor that has not previously been well explored in studies examining socioeconomic inequalities in treatment.

Introduction The prevalence of obesity in Mexico has risen substantially since the 1980s, with obesity now affecting over 30% of the adult population. 1,2 It is projected that by 2050, the proportion of obese men and women in Mexico will rise to 54% and 37%, respectively, and more people will be obese than overweight. 1 The rise in the rates of obesity has primarily been linked to an increased consumption of calorically dense foods and a more sedentary lifestyle. [3][4][5] The presence of obesity is associated with a range of comorbidities including cardiovascular diseases, type 2 diabetes mellitus , osteoarthritis, certain types of cancer, obstructive sleep apnea, and other conditions, 1,2,[6][7][8][9][10][11] which have a profound impact on the Mexican health care system. In 2010, costs were estimated to be $806 million, and based on the projected increases in obesity rates, they could rise to $1.7 billion by 2050. 1 Excess weight has also been associated with a number of impairments across psychosocial, symptom, and work-related domains. Research has suggested an correspondence: henrik Meincke novo nordisk a/S, Vandtårnsvej 114DK-2860 Søborg Denmark Tel: +45 30798654 email [email protected] Diabetes, Metabolic Syndrome and Obesity downloaded from https://www.dovepress.com/ For personal use only. This article was published in the following Dove Press journal: Diabetes, Metabolic Syndrome and Obesity: Targets and Therapy association between increasing BMI and greater pain, [12][13][14][15] as well as joint-related disorders such as osteoarthritis. [16][17][18] Obesity has also been associated with higher rates of fatigue and sleep disorders. [19][20][21][22][23] In the psychosocial domain, obese individuals have been reported to be at an increased risk of certain psychiatric illnesses, most notably depression, 24 while overweight and obese individuals have been found to possess lower health-related quality of life compared to those with a healthy weight. 25 Finally, international research has consistently found an association between obesity and impairments in work productivity measures, with increasing BMI linked to greater absenteeism and presenteeism. 7,[26][27][28][29] Given the potential projected increases in obesity, it is also important to understand the weight loss actions taken by those who are overweight and obese in Mexico. Treatment of obesity is centered on optimizing food choices and improving exercise habits through lifestyle changes, for which there are numerous policy interventions. 3,5,30,31 Weight loss interventions tend to follow a stepwise approach, with diet and lifestyle counseling as a foundation, before progressing to pharmacological and surgical approaches. 32 There has been some suggestive evidence that involving family members in weight loss efforts could be beneficial, particularly within family-centered cultures. 33 Despite global efforts to address obesity, sustainable weight loss remains elusive, and the majority of individuals will regain some or all of their lost weight over the course of 2 years. 34 A survey study of Mexican university students reported that nearly 40% of respondents were attempting to lose weight; 35 however, there exists little large-scale evidence of how frequently individuals with obesity in Mexico take steps to lose weight, the methods they use, or their satisfaction with these methods. The goal of this study is threefold: 1) to explicate the prevalence of obesity, T2DM, prediabetes, and hypertension in a large sample of Mexican adults that generally represents the population of the country, 2) to identify the association between participants' weight and HRQoL and work productivity, and 3) to describe the weight loss methods currently reported by the sample. --- Materials and methods --- Sample and procedure Data were collected using a cross-sectional survey of adults, aged 18 years or older, in Mexico . The only exclusion criterion was that participants had to be of a normal BMI or higher. Potential respondents were identified from an Internet panel, with some offline recruitment to ensure representation in all demographic strata. Specif ically, the Internet panel recruits members through various ways including e-newsletters and banner advertisement placements. Membership is optin, and those on the panel are provided the opportunity to complete periodic surveys on a variety of topics. Although the recruitment of panel members is not done purely by convenience sampling , panel membership does skew toward the younger and more educated adults. To mitigate this bias, sampling for the present study was conducted using random stratification. Specifically, the characteristics of the Mexican adult population, with respect to age and sex, were identified using the International Database of the United States Census, 36 which acquires information from governmental and statistical bureaus from each country in the world, and was selected to derive a sample that is a close approximation to the population of Mexico. These age and sex proportions were mimicked during the email recruitment of this study. Recruiting participants through Internet panels is increasingly used to enroll large numbers of diverse participants. For example, the approach was used in the development of the US National Institute of Health's roadmap initiative, Patient-Reported Outcomes Measurement Information System. 37 It is also used to enroll participants in the National Health and Wellness Survey, which has been used to quantify the effect of chronic medical and psychiatric conditions on a range of measures. [38][39][40][41][42] Since Internet panels underrepresent the elderly and the economically disadvantaged, a small subset of respondents were recruited through street intercepts to ensure appropriate representation of this subgroup. After ensuring eligibility, these respondents were brought into a centralized facility to complete the survey at a computer. The survey experience was identical to that of those who participated online. To ensure that the sample size was adequate for performing the burden-of-obesity analysis in a subgroup of T2DM participants, an additional N=500 respondents with the condition were recruited. Therefore, certain analyses focused on the general population , and other burden-of-obesity analyses focused on everyone . The study protocol was reviewed and granted exemption status by an independent Institutional Review Board because de-identified data were collected which did not include responses outside the research that could reasonably place the subjects at risk of criminal or civil liability or be damaging to the financial standing, employability, or reputation of the subjects. All study materials, including the informed consent, were pro-vided in Spanish. Completion of survey was deemed to be agreement of consent from the participants for this study and participants who completed the survey were provided a small honorarium for participating. --- Measures Demographics Sex, age, marital status, employment, and education were assessed for all respondents. Based on an algorithm from the Mexican Association of Marketing Research and Public Opinion Agencies, 15 socioeconomic status was estimated from questions on household possessions . The levels were AB, C+, C, C-, D+, D, and E, in descending order of SES. An AB respondent, for example, would represent someone with a graduate degree, a large house , and multiple automobiles, and an E respondent would represent, for example, someone with less than a primary school education, a house with 4 or fewer rooms, and no automobile. --- health history and habits Respondents provided information on their height and weight. These variables were converted into a BMI value and then coded categorically as follows: normal weight , overweight , obese class I , obese class II , and obese class III . Underweight respondents were not included in the study. Smoking history , frequency of alcohol use, and the number of days exercised in the past month were also assessed. --- comorbidities Respondents self-reported whether they had been diagnosed with the comorbidities associated with the 2008 version of the Charlson Comorbidity Index . 43 A CCI score was generated for each respondent. Demographic and health history information was used to calculate a Diabetes Screening Score value, 44 which has been used to identify both patients with undiagnosed diabetes and those who have a high risk for developing diabetes in the future, the latter representing prediabetes for the purposes of our study. A self-reported diagnosis of hypertension or self-reported systolic and diastolic blood pressure values above 140 mm Hg and 90 mm Hg, respectively, were used to classify respondents as having hypertension. --- Weight loss All respondents were asked whether they were currently taking steps to lose weight. Those who answered affirmatively were asked how much weight they had lost or gained in the past 6 months. Additionally, they were asked all the different weight loss methods they had used from a set list along with their level of satisfaction with each and the associated monthly out-of-pocket costs for each. --- health outcomes HRQoL was assessed using the visual analog scale and health utilities from the EuroQoL-5D -3L. 45 The Work Productivity and Activity Impairment questionnaire was included to assess the level of absenteeism , presenteeism , overall work impairment , and activity impairment experienced in the past 7 days due to health-related reasons. 46 The WPAI questionnaire was only answered by those currently employed. Finally, the number of health care provider visits, emergency room visits, and hospitalizations, in the past 6 months, was also queried. --- Statistical analysis --- Burden-of-obesity analyses Among the general population subsample , the sample prevalence of T2DM, prediabetes, normoglycemia, and cardiovascular comorbidities was derived. Next, the association between obesity and health outcomes was examined among all respondents who were classified as normal weight, overweight, obese class I, obese class II, or obese class III. Respondents who were underweight were excluded from these analyses. Differences among respondents with varying levels of BMI categories were made with respect to demographics, health history, and health outcome variables to assess for potential covariates to include in subsequent modeling. To boost sample sizes, obese class II and obese class III categories were combined. Chi-square tests and one-way analyses of variance were used for categorical and continuous outcomes, respectively. Generalized linear models were used to predict health outcomes from BMI categories controlling for sex, age, marital status, education, exercise frequency, and the CCI. These analyses were replicated among those with T2DM, prediabetes, and hypertension. To convert work productivity loss to indirect costs, the adjusted mean level of overall work productivity loss for each BMI category, derived from the GLMs, was multiplied by the average wage in Mexico , as outlined in previous research. 48 Because certain antidepressants, such as some selective serotonin reuptake inhibitors, can increase BMI, and those conditions can also directly affect health outcomes, additional sensitivity analyses were conducted controlling for self-reported depression. Depression is part of the 2008 CCI calculation that was used for this study, 43 but it was included instead as a separate variable in these sensitivity analyses. --- Treatment patterns of weight loss Among those taking steps to lose weight, the treatment patterns of weight loss were examined descriptively . --- Results --- Descriptive statistics The overall sample included about the same number of men and women with a mean age of 40.66 years . The SES was relatively high; 58.1% had attained a university degree, and 40.62% belonged to the highest SES level based on household possessions. The distribution of BMI categories was as follows: underweight=35 , normal weight=901 , overweight=962 , obese class I=425 , obese class II=132 , and obese class III=56 . --- comorbidity burden of obesity A total of 826 respondents reported having T2DM, 900 respondents reported having hypertension, and 454 reported both conditions. Based on the DSS, 425 respondents were classified as having prediabetes. health outcome burden of obesity Several demographic differences were observed across BMI category . Although males were more likely to have a BMI ≥25 and <30, females were more likely to have a BMI ≥30 . Increasing BMI was associated increasing age, an increased likelihood of being married/living with a partner, and not having a university degree . Increasing BMI was also associated with fewer days exercised in the past month and a higher CCI . No significant differences were observed with respect to SES, smoking behavior, or frequency of alcohol intake. Controlling for demographic and health history differences among BMI categories, respondents in overweight, obese class I, and obese class II-III categories all reported significantly lower EQ-5D VAS and EQ-5D health utility scores, and greater impairment in daily activities compared with respondents in the normal weight category . Respondents in the obese class I and obese class II-III categories reported greater levels of presenteeism, overall work impairment, and health care provider visits, compared with normal weight respondents . Respondents in the obese class I category reported significantly more ER visits than normal weight respondents . No other differences were observed. The same relationships between BMI and health outcomes were explored among those with T2DM, prediabetes, and hypertension . Although these subgroup analyses were underpowered, respondents in obese class I and combined obese class II-III categories reported significantly lower health utilities than respondents in the normal weight category for all comorbidity subgroups. The results for work productivity and health care resource use were more inconsistent. Only those respondents with prediabetes in the obese class II-III category reported significantly greater presenteeism and overall work impairment compared with normal weight respondents. Respondents who were in obesity class I category and were either in the T2DM or hypertension groups reported more ER visits in the past 6 months than their normal weight counterparts. Those respondents with T2DM, and separately hypertension, in the obese class I category reported more ER visits in the past 6 months than normal weight respondents. Indirect costs rose as BMI increased, with the costs rising from 2,422 MXN to 2,614 MXN to 2,993 MXN to 3,317 MXN . The sensitivity analysis controlling for depression included as a separate variable rather than being included as part of the CCI found that adjusted means of the two models differed by less than a tenth of a point indicating that depression was not an integral component of BMI. --- Management of obesity Of the total number of respondents, 62.17% were taking steps to lose weight, and the primary reason for doing so was to improve their health . Despite these intentions, success was limited. Only slightly more than a third reported having lost weight in the past 6 months , and the mean weight change was 0.47 kg . The most common treatments used for weight loss included exercise and dieting . Of the total number of respondents, 27.55% had used an herbal product, 19.03% used over-the-counter orlistat weight loss pills , and 17.10% used a prescription medication . However, discontinuation rates were high with these treatments. Of those who ever used either OTC or prescription medications, less than half were currently using those methods. For those using OTC and prescription medications , the current out-of-pocket costs were 528.58 MXN . Few differences in out-of- --- Discussion In a sample of Mexican adults, who were recruited to reflect the overall sex and age of the population, it was found that 62% were, at least, overweight. Heavier respondents reported higher comorbidity burden, as well as worsening HRQoL and work productivity. Further, a large proportion of the sample is actively trying to lose weight. Taken together, these findings indicate that many Mexicans are experiencing the deleterious effects associated with BMI despite the desire to lose weight. These findings are comparable to past research, 1 though our study and the high comorbidity burden associated with increasing BMI is consistent with other studies too. clinically significant decrement in health utilities compared with normal weight respondents. Indeed, the HRQoL for those in the combined obese class II-III was worse than what has been reported for psoriasis, migraine, asthma, and glaucoma, and comparable to gout and cardiac arrhythmias. 49 Effects on daily activities were also observed as a function of obesity. Respondents with obesity reported nearly double the level of work-related impairment, even after adjusting for demographic and health history confounds. The same pattern of results was observed for the T2DM, prediabetes, and hypertension subgroups. Among the employed, greater overall work-related impairment was also observed with increasing BMI, but these associations were a function of increasing presenteeism as opposed to absenteeism. In other words, after accounting for demographic and health history characteristics, obesity was generally unrelated to an individual's ability to show up for work, but was related to the individual's productivity while working. Overall, a third to two-thirds greater work-related impairment was observed among those with obesity compared with normal weight respondents. This corresponded to an incremental 1,400 MXN per employee per year, a value which exceeds 10% of the average annual wage for an indi-vidual. Due to sample size restrictions for the employed group in other comorbidity subgroups, leading to wide confidence intervals, it is difficult to make firm conclusions on how the pattern may differ in these cases. Larger cohort studies are necessary to assess obesity-related indirect costs among those with T2DM, prediabetes, and hypertension. Interestingly, few associations between obesity and health care resource utilization were observed. We attribute this partially to sample size. The variability in health care resource utilization was high, and even somewhat large differences in the mean number of visits between groups were not statistically significant. Another factor to consider is the cross-sectional design which may not fully capture the long-term implications that have previously been found with obesity. 1,2,6,7,[9][10][11] This is an area that warrants further research. It should be noted that the effects of increasing BMI in our prediabetes sample were small, with the results resembling more the overall population than the T2DM population. In part, this may be due to the fact that this group was the smallest subgroup which limited statistical power. Another issue was that some of the covariates in the regression model were used to define the presence of prediabetes. As a result, when controlling for these factors , in part, we were controlling for the "severity" of prediabetes. This likely diminished our effects and points to future research where alternative methods of classifying the prediabetes patients for the purposes of burden-of-obesity analyses could be considered. Over 60% of those in Mexico are taking steps to lose weight, which is much higher than the 40% reported in a previous study. 35 Similarly, nearly 70% of those, without experience in using a prescription medication, expressed a willingness to do so in our study compared with 24-33% of obese respondents in the US. 50 This higher level of interest does not seem to be explained by a greater BMI category. Our reported BMI distribution was less extreme than that reported in the US. 50,51 However, regardless of these weight loss intentions, the success was limited, which is consistent with previous research in this domain. 34 Overall weight change in the past 6 months was low, with more respondents actually gaining weight in the past 6 months than losing weight. Additionally, aside from diet and exercise, discontinuation rates for weight loss interventions were high, ranging from 50 to 70%. Future research would be necessary to understand the reasons for the high discontinuation rates. Note: "currently using" percentages are based on those who "ever used" the given method . Abbreviation: OTc, over-the-counter. --- limitations This study, like all others, has limitations. All data were self-reported, and no objective confirmation of weight, treatment use, or health care resource use was available. It was also cross-sectional, so it was not possible to assess a clear causal pathway between BMI/weight and health outcomes. Further, indirect costs were estimated based on estimated wage rates and may be different than true costs obtained through other datasets. Additionally, this study does not quantify all costs associated with obesity. Supplementary sources of information are needed to further calculate direct and other indirect costs. Although the survey sample was demographically representative with respect to age and sex, there are a few limitations that pertain to the external validity of the findings. Most respondents were a member of an Internet panel and completed the survey online; thus, those without Internet access or otherwise economically disadvantaged might be underrepresented in the data. Finally, some caution should be applied when examining these results because small sample sizes in some of the analyses resulted in less statistical precision in these projections. --- Conclusion In summary, the results suggest a significant unmet need for the treatment of overweight and obese adults in Mexico. The majority of respondents were overweight, and the results suggest a significant opportunity to improve health outcomes, particularly HRQoL. The strongest effects were observed for those who reported being obese. This pattern was similar for respondents with T2DM, prediabetes, and hypertension, with increasing BMI category. Despite these effects, there is an apparent high degree of willingness for respondents to lose weight; however, the success of available interventions is limited, and discontinuation rates for pharmacotherapies are high. Given the gravity of the obesity epidemic in Mexico, successful weight management could have significant benefits to the patients and society at large. --- Disclosure At the time of this study, Marco D DiBonaventura and Allison Ehrenreich were employees of Kantar Health, which conducted the National Health and Wellness Survey. Marco D DiBonaventura and Allison Ehrenreich received funding to analyze and develop the manuscript from Novo Nordisk. Henrik Meincke, Agathe Le Lay, Janine Fournier, and Erik Bakker are employees of Novo Nordisk. The authors report no other conflict of interest in this work. --- Publish your work in this journal Submit your manuscript here: https://www.dovepress.com/diabetes-metabolic-syndrome-and-obesity-targets-and-therapy-journal Diabetes, Metabolic Syndrome and Obesity: Targets and Therapy is an international, peer-reviewed open-access journal committed to the rapid publication of the latest laboratory and clinical findings in the fields of diabetes, metabolic syndrome and obesity research. Original research, review, case reports, hypothesis formation, expert opinion and commentaries are all considered for publication. The manuscript management system is completely online and includes a very quick and fair peer-review system, which is all easy to use. Visit http://www.dovepress.com/testimonials.php to read real quotes from published authors.

The goal of this study is to investigate obesity and its concomitant effects including the prevalence of comorbidities, its association with patient-reported outcomes and costs, and weight loss strategies in a sample of Mexican adults. Methods: Mexican adults (N=2,511) were recruited from a combination of Internet panels and street intercepts using a random-stratified sampling framework, with strata defined by age and sex, so that they represent the population. Participants responded to a survey consisting of a range of topics including sociodemographics, health history, health-related quality of life (HRQoL), work productivity, health care resource use, and weight loss. Results: The sample consisted of 50.6% male with a mean age of 40.7 years (SD=14.5); 38.3% were overweight, and 24.4% were obese. Increasing body mass index (BMI) was associated with increased rates of type 2 diabetes, prediabetes, and hypertension, poorer HRQoL, and decreased work productivity. Of the total number of respondents, 62.2% reported taking steps to lose weight with 27.6% and 17.1% having used an over-the-counter/herbal product and a prescription medication, respectively. Treatment discontinuation rates were high. Conclusion: Findings indicated that 62% of participants reported, at least, being overweight and that they were experiencing the deleterious effects associated with higher BMI despite the desire to lose weight. Given the rates of obesity, and its impact on humanistic and societal outcomes, improved education, prevention, and management could provide significant benefits.

Introduction Nowadays, social network is becoming increasingly important in people's lives. People often have several social network accounts, e.g., Twitter for news, Facebook for friends and LinkedIn for jobs. However, these accounts are often independent from each other. It arises the problem of identifying the corresponding accounts belonging to the same individual, which is termed as reconciling social networks. Reconciling social networks can support a wide range of applications, e.g., network fusion [Zhang and Yu, 2016], link prediction [Zhang et al., 2017b] and cross-domain recommendation [Man et al., 2017]. This problem still remains open as most of the existing methods have several limitations as follows: • Multiplicity: In real world, people usually have several social network accounts. However, most of the existing methods [Kong et al., 2013;Liu et al., 2014;Korula and Lattanzi, 2014;Liu et al., 2016;Man et al., 2016] focus on reconciling only two social networks and cannot pairwise reconcile multiple social networks due to the global inconsistency. * Corresponding Author • Comprehensiveness: Social networks usually have two categories of spaces, i.e., attribute space and structure space. However, most of existing methods [Korula and Lattanzi, 2014;Liu et al., 2016;Man et al., 2016;Mu et al., 2016] do not comprehensively exploit the information of both spaces to reconcile social networks. • Robustness: The social network is noisy and most of the existing methods [Zafarani and Liu, 2013;Kong et al., 2013;Liu et al., 2014;Zhang et al., 2015] struggle in defining effective features sensitive to data. Therefore, they are still away from robustly reconciling networks. These limitations motivate us to rethink: Can we comprehensively and robustly reconcile multiple social networks? v a v b v c v a v b v c v The answer is YES! In this paper, for the first time, we propose the MASTER framework, i.e., across Multiple social networks, integrate Attribute and STructure Embedding for Reconciliation. In this framework, there are two main challenges: Modeling: To the best of our knowledge, there is no embedding model reconciling multiple social networks in the literatures. Both spaces of multiple networks should be integrated and, moreover, the problem of global inconsistency is to be addressed in the embedding. Optimizing: The network embedding problem is often formulated as an optimization problem. In our framework, the optimization problem behind tends to be non-convex and hence much tougher. To address the issue , we design a novel Constrained Dual Embedding model to formulate the reconciling social network problem. The core idea of CDE is to simultaneously embed and reconcile multiple social networks in the joint latent space via uni-and joint-embedding. For uniembedding, we perform collaborative matrix factorization to independently embed each network into a latent space, which collaboratively captures the observations of attribute space and structure space. For joint-embedding, we align these embedded social networks at the known correspondences to construct the joint latent space for consistent reconciliation and we finally give the formulation of the unified optimization. To address the issue , we design an effective NS-Alternating algorithm to approach the optima of the highorder matrix optimization. Specifically, we first reformulate the optimization problem, inspired by a recent advance in computational mathematics. We then alternately solve the representation matrices subproblem and the kernel matrices subproblem of the reformulated problem via first-order method and semidefinite programming, respectively. Moreover, we make analysis of the convergence property in depth and give the sufficient condition of Karush-Kuhn-Tucker convergence. We validate MASTER through extensive experiments on real-world datasets and show that MASTER outperforms several state-of-the-art methods. To summarize, we make the following contributions: • To the best of our knowledge, our proposed MASTER is the first attempt to robustly reconcile multiple social networks comprehensively exploiting attribute and structure information via an embedding approach. • We design a novel model to formulate the problem of reconciliation into a unified optimization. • We design an effective NS-Alternating algorithm to address the optimization and prove that it converges to KKT points. • We conducted extensive experiments on real-world datasets and the experiment results demonstrate the superiority of our approach. --- Problem Definition In this paper, we consider a set of M social networks {S }. A social network S of N users is denoted as , A ). The adjacency matrix G ∈ R N ×N represents the structure space, where binary G . G is symmetric as the network is considered to be undirected. A ∈ R N ×l represents the attribute space and its i th row a i denotes the l-dimensional attribute vector associated with v i . Part of the user account correspondences can be obtained from user profiles or some third-party platforms. Such information is represented in a label set L = {L}, where L is the set of known account pairs between S and S of the same individual. Without loss of generality, we assume that social networks are partially overlapped. We formally define the problem of reconciling multiple social networks as follows: Problem Definition. Given the set {S } with labels L, the problem of reconciling multiple social networks is to find a φ , mapping the user account to its owner, for each S so that φ (v ) = ... = φ ) = ... = φ ) to identify correspondences of shared users. To address this problem, we propose the MASTER framework. In MASTER, we design a novel model, Constrained Dual Embedding , to formulate the problem into a unified optimization . To address the optimization, we design an effective NS-Alternating algorithm . --- Modeling: Constrained Dual Embedding In CDE, we independently embed each social network via uni-embedding and simultaneously reconcile these embedded networks via joint-embedding. --- Uni-embedding The goal of uni-embedding is, for each social network S , to obtain the representation matrix H ∈ R N ×d }), whose i th row h i is the d-dimensional vec- tor of v i in the latent space, capturing the observations of both structure and attribute space. To achieve this goal, first, we construct the similarity matrix M of structure space. Note that G ij encodes the first-order proximity, defined in [Tang et al., 2015], which is measured by whether or not v i and v j have a direct connection. Obviously, it is necessary to preserve the first-order proximity as it depicts the original structure of the social network. However, the observed edges are usually sparse in the network. For two user accounts with no direct connection, an alternative way to imply the proximity is to measure their neighbors. Intuitively, the more similar their neighbors are, the higher proximity they share. Therefore, we formally define the second-order proximity as follows: Definition . Given the adjacency matrix G , the secondorder proximity Ḡ ij between v i and v j is the similarity of G i and G j , where G i is the i th row of G . The inner product similarity is into account in this paper, i.e., Ḡ = G 2 as G is symmetric. To incorporate the first-and second-order proximity, M = G + η Ḡ where η is a non-negative weight. Second, we derive the similarity matrix W of attribute space by computing the pairwise inner product of the attribute vector, i.e., W = A A T . Finally, we approximate the pairwise similarity in each space by the inner product of h i . Assume that h i is projected onto structure space and attribute space via different projection ϕ. We introduce kernel technique to bridge the inner product •, • of the ϕ(h i ) with that of h i , i.e., ϕ i ), ϕ j ) = h i K ϕ h j , where K ϕ is semidefinite. Let B and C denote K ϕ of the projection onto structure space and attribute space respectively. H can be learned by the optimization of a collaborative matrix factorization as below: min H ,B ,C α 2 M -H B H T 2 F + β 2 W -H C H T 2 F s. t. B , C ∈ S d + where ||•|| F is Frobenius norm, S d + denotes semidefinite cone, and α and β are positive parameters weighting the observed similarities in structure space and attribute space respectively. Take Fig. 1 for example. For each social network, e.g., S , we first calculate the similarity matrices M and W . Then, we perform the collaborative matrix factorization in optimization to embed S into a latent space, represented by H . In the latent space, h b will be closer to h a than h c , and h a and h c are far away. --- Joint-embedding Based on uni-embedding, joint-embedding aims to construct the joint latent space by aligning latent spaces of S at the known correspondences L so that the h l of the correspondences coincides in the joint latent space and the proximity of both structure and attribute spaces within the individual networks is captured in h . To achieve the first goal, we leverage natural constraints to encode the correspondences and thus force alignment. To give its matrix form, we introduce an elementary matrix E for each social network S . Each row of E has only one non-zero element , to select a h according to the correspondences in L. We obtain the constraints as follows: ∀L ∈ L : E H = E H , where E ∈ R |L|×N and E ∈ R |L|×N . This is an equation system of | L| = M • equations. We further formulate the equation system into a unified equation pair, despite of the number of networks M . First, we define rotating matrices Dp and Dq . If M is odd, Dp =     D D . . . I     Dq =     I D . . . D     , otherwise, Dp =     D D . . . D     Dq =     I D . . . I     , where D = I I and I is the identity matrix. Second, we let R p = Dp X Dp and R q = Dq X Dq for rotating operation. Let ˜denote the block diagonal matrix, i.e., X = diag }). We obtain the equivalent equation pair: L p = || Ẽ H -R p || 2 F = 0 L q = || Ẽ H -R q || 2 F = 0 To achieve the second goal, similarly, we incorporate uniembedding preserving the proximity within each network. Utilizing i ||X|| 2 F = || X|| 2 F , we obtain the unified objective, which is equivalent to combining M objectives of uniembedding, as follows: α 2 || M -H B HT || 2 F + β 2 || W -H C HT || 2 F . Note that, B and C inherit the semi-definiteness while M and W remain to be symmetric. Finally, we remove the constraint by adding penalty with a coefficient γ and obtain the unified optimization objective: min H, B, C α 2 M -H B HT 2 F + β 2 W -H C HT 2 F + γ 2 [L p + L q ] s. t. B, C ∈ S M d + Recall the example in Fig. 1. In this example, since the correspondence {v b , v b , v b } is known in advance, we will force h b = h b = h b to align the embedded space of S , S and S . Those who are close in the joint latent space from different S are regarded as good candidates. The benefits of CDE model are two-folded: both spaces are comprehensively exploited and the problem of reconciliation is formulated in a unified approach for effective reconciliation, regardless of the number of networks. --- Optimization: NS-Alternating To address the optimization problem of the CDE model, inspired by Non-convex Spiting framework [Lu et al., 2017], we design an effective NS-Alternating algorithm. In this algorithm, we first reformulate the problem and alternately solve the subproblems of the reformulation. --- Problem Reformulation The high-order objective is not jointly convex over H, B and C. Therefore, we reduce the order by introducing an auxiliary matrix V = H, and formulate the problem as follows: min H, B, C,V J = α 2 M -H BV T 2 F + β 2 W -H CV T 2 F + γ 2 + L q ) s. t. B, C ∈ S M d + , H = V, ||V i || 2 2 < τ, ∀i According to the study [Vandaele et al., 2016], problem is equivalent to problem in the sense of KKT points if τ = √ C is sufficiently large . That is, the KKT points of problem and problem have a one-to-one correspondence. We alternately solve and of problem , referred to as representation matrices subproblem and kernel matrices subproblem respectively. --- Representation Matrix Subproblem Fixing kernel matrices, the updating rules are given below: V = arg min ||Vi|| 2 2 <τ,∀i L , V; Λ ) + ξ 2 ||V -V || 2 F H = arg min L ; Λ ) Λ = Λ + ρ -H ) ξ = 6 ρ • J , B, C, V ) L = J + ρ 2 ||V -H + Λ/ρ|| 2 F L is the augmented Lagrangian. Note that, proximal term ||V -V || 2 F and penalty parameter ξ are added according to the study [Lu et al., 2017]. The optimization w.r.t. V can be decomposed into k separable problems, each of which can be solved using gradient projection: V [i] = proj V [i] -λ V V [i] -B V [i] )) A V = α B HT H B + β CT HT H C + + ρ)I B V = α M H B + β ST H C + ξ V + ρ H -Λ proj V = √ τ w/ max{ √ τ , ||w|| 2 }, ∀w ∈ R n where r denotes the inner-iteration number, λ denotes the step size and V [i] denotes the i th column of matrix V. For a given vector w, proj V projects it onto the feasible set of V [i] . H can be solved via 1 st -order method, whose gradient is: ∇ HL = α T -M)V BT + β T -S)V CT + γ Ẽ[R p + R q ] + 2γ ẼT Ẽ H + ρ -Λ /ρ), as Dp = D-1 p and Dq = D-1 q . --- Kernel Matrix Subproblem Utilizing ||X|| 2 F = tr, we reformulate the optimization w.r.t. B into an inner-product form : min B tr -2tr = Q, B -2 A, B , B ∈ S M d + , where Q = V T V B HT H and A = V T M H. The equality constraint H = V holds when representation matrix subproblem converges. Let HT H = P and we further analyze Q. For arbitrary X, Y, the following equations hold: Q, X = tr = ||PX|| 2 F ≥ 0, Q, Y = tr = tr = Q, X . That is, Q is semidefinite and self-adjoint . According to the study [Toh, 2008], we conclude that: Theorem 1. B-subproblem is a convex Quadratic Semi-Definite Programming problem with Q of PXP form and has the solution of the global optima with quadratic convergence rate. We summarize the overall process of NS-Alternating in Algo. 1, where line 4 and line 5 refer to representation matrix subproblem and kernel matrix subproblem respectively. Recall our example. Optimizing via the Algo. 1, we obtain h andh and then, ∀i, j ∈ {1, 2, 3} , we calculate ||h , h -h || 2 F to identify the candidates for correspondence. Algorithm 1: NS-Alternating •) and L Output: H for each S of the joint latent space Input: observed {G , A } of S ( 1 Compute M, W, { Ẽ }; 2 Initialize H , V = H , B , C , n = 0; 3 while not converge do 4 = arg min l , C ); 5 = arg min B, C∈S M d + l , V , B, C); 6 n = n + 1; 7 end 8 return {H } from H; --- Convergence and Complexity Analysis Convergence Analysis: Utilizing the convergence properties [Hong et al., 2016], we can conclude that: Theorem 2. With given B and C, if ρ > max{ρ 1 , ρ 2 , ρ 3 }: ρ 1 = 6N τ || B|| 4 F + || C|| 4 F / || B|| 2 F + || C|| 2 F ρ 2 + 2|| Ẽ|| 2 F = 6 ρ2 16N + N τ || B|| 2 F + || C|| 2 F 2 ρ 3 = || B|| 2 F + || C|| 2 F + ||R p + R q || 2 F We can claim that: • The equality constraint on the auxiliary matrix is satisfied in the limit, i.e., lim t→∞ || H -V || 2 F = 0. • The sequence { H , V , Λ } generated by the NS-Alternating algorithm is bounded, and every limit point of the sequence is a KKT point of problem . The detailed proof can be found at the website.1 Computational Complexity: The outer loop of Algo 1 achieves the satisfactory accuracy in a few iterations. Note that, B and C of convex QSDP, blocks H of H and columns of V can be computed in parallel. Therefore, the computational complexity depends on matrix operations in updating rules. The inversions in QSDP is O and matrix multiplication is O where N max = max{N } and d min{N }. Moreover, there are quantities of optimized libraries to speed up the most expensive multiplication operations. The benefit of our proposed NS-Alternating algorithm lies in that, besides monotonously non-increasing the objective, it guarantees to converge to KKT points of the optimization of CDE with the modest computational complexity. --- Experimental Setup Datasets: We use the Twitter-Foursquare dataset [Kong et al., 2013]. Since Foursquare can be registered by Twitter account, we regard this part of data as ground truth. Twitter dataset consists of 5,220 users and 164,917 connections while Foursquare dataset consists of 5,315 users and 76,972 connections. There are 1,610 shared users. We evaluated the performance of competing methods in the following two cases: • Bi-network case: We generated a series of network pairs with different overlap rates , measured by 2Ns N T +N F , where N s , N T and N F denote the number of shared users, Twitter users and Foursquare users respectively. Specifically, for each network pair, we sample users from this dataset according to η, called dense pairs. Moreover, in order to evaluate the robustness, we generated a sparse pair for each η-overlap dense pair by randomly removing 30% connections. • Multi-network case: We generated two networks from Twitter by inheriting all the users and randomly sampling 70% of the connections and attributes , and also generated two networks from Foursquare via the same process. Then, we simulated a series of four-network dense groups and corresponding sparse groups with different values of η. Performance Metric: We evaluated all the competitive methods by the hit-precision of the candidate lists, which is measured by 1 M m E i [ -hitm i ) K ], where E[•] denotes the expectation and K is set to be 5. For instance, for social network S , we obtain a top-K candidates list {v Competitive Methods: To evaluate the performance of the proposed MASTER, we compared it with several state-ofthe-art methods listed as follows: • ULink [Mu et al., 2016]: This method links user identities by modeling users' attributes in the latent user space. We implemented the CCP version of this method. • PALE [Man et al., 2016]: This method performs reconciliation in an embedding-matching framework. We implemented this method with the matching of MLP. • COSNET [Zhang et al., 2015]: This method considers the local and global consistency in reconciliation. • MASTER-: We implemented a degraded version of MASTER ignoring the attribute space to emphasize the importance of comprehensiveness. In all the experiments, the dimension of the representation vector in MASTER and PALE is set to be 100. --- Experimental Results We repeated each experiment for 10 times and both the mean and 95% confidence interval are reported. The experimental results are summarized as follows: Bi-network Case: We evaluated competitive methods on dense and sparse pairs with different η = [5%, 10%, ..., 30%]. Experimental results are reported in Fig. 2. In all the experiments, MASTER achieves the highest hit-precision. MASTER has an improvement of 4.92%, 6.21% and 9.40% in average compared to COSNET, PALE and ULink respectively. It is expected. The reasons are two-folded: In MAS-TER, both observations of attribute and structure space are comprehensively exploited. The embeddings, capturing the intrinsic relation between users, facilitate the robust reconciliation. MASTER performs better than MASTER-consistently, demonstrating the necessity of comprehensiveness. --- MASTER √ √ √ √ Robustness: To further evaluate the robustness of our solution, we conducted experiments the sparse pairs and sparse groups, reported in Fig. 2 and 2 respectively. The performances of COSNET become noticeably worser in sparse pairs as less information can be leveraged. The robustness of ULink is not evaluated, since the difference among them is in the structure space neglected by ULink. However, the embedding based approaches, i.e., MASTER, MASTER-and PALE, lose much less hit-precision in sparse pairs and MASTER achieves the highest robustness. The impacts of parameters: To further evaluate MASTER, we conducted experiments to evaluate the effect of training ratio θ and the contribution of each space. Regarding the impact of θ, we fix η = 30%, β/α = 2/3, and vary the value of θ to [0.5%, 1%, 1.5%, ..., 5%]. We report the corresponding result in Fig. 2. From this figure, we observe that the hit-precision of MASTER raises quickly as the training ratio increases from 0.5% to 2%, and slows down when θ exceeds 2%. That is to say, MASTER can achieve good performance with relatively less label information. Regarding the impact of the contribution of each space, we set η = 30%, θ = 5%, and vary the value of lg to [-1, -0.8, -0.6, ..., 1]. We report the corresponding result in Fig. 2. From this figure, it can be inferred that the structure space has higher contribution than that in attribute space. A reasonable interpretation behind this is that people are not willing to provide truthful personal information , which results in lots of noise in the attribute space. --- Related Work The MASTER reconciles multiple social networks in an embedding approach. We briefly summarize the related work in the problem of reconciliation and network embedding: Reconciliation: The problem is generally regarded as a supervised task as the labels can be observed [Shu et al., 2017]. Most of the existing models focus on reconciling only two social networks. A few models reconcile multiple networks, however, ULink [Mu et al., 2016] suffers from the noise in attribute space while COSNET [Zhang et al., 2015] and UniRank [Zhang et al., 2017a] struggle in defining local consistency. Most of the typical models are summarized in Table 1. The difference between our model and the others lies in that we, for the first time, address all these limitations. Network embedding: Network embedding can be addressed through several techniques: matrix factorization, e.g., TADW [Yang et al., 2015], HOPE [Ou et al., 2016], LANE [Huang et al., 2017], M-NMF [Wang et al., 2017b]; deep neural network, e.g., SDAE [Cao et al., 2016], SiNE [Wang et al., 2017a]; random walk, e.g., DeepWalk [Perozzi et al., 2014], Node2Vec [Grover and Leskovec, 2016]. Moreover, both DeepWalk and LINE [Tang et al., 2015] are proved to be equivalent to matrix factorization recently [Qiu et al., 2018]. However, different from all these models, our model is tailored for reconciling multiple social networks. --- Conclusion To address the problem of robustly reconciling multiple social networks, we, for the first time, propose the MASTER framework. In MASTER, we design the CDE model to formulate the reconciliation problem into a unified optimization where we embed and reconcile multiple social networks in the joint latent space constructed by uni-and joint-embedding. We design an effective NS-Alternating algorithm to solve the nonconvex optimization of CDE and further prove the KKT convergence of the algorithm. We conducted extensive experiments on real-world datasets and demonstrate that MASTER outperforms several state-of-the-art methods.

Recently, reconciling social networks receives significant attention. Most of the existing studies have limitations in the following three aspects: multiplicity, comprehensiveness and robustness. To address these three limitations, we rethink this problem and propose the MASTER framework, i.e., across Multiple social networks, integrate Attribute and STructure Embedding for Reconciliation. In this framework, we first design a novel Constrained Dual Embedding model by simultaneously embedding and reconciling multiple social networks to formulate our problem into a unified optimization. To address this optimization, we then design an effective algorithm called NS-Alternating. We also prove that this algorithm converges to KKT points. Through extensive experiments on realworld datasets, we demonstrate that MASTER outperforms the state-of-the-art approaches.

Introduction Violence against women is one of the most pervasive gender-based inequalities that creates inequalities in many areas of the life of women and girls. These disadvantages pose serious threats to their welfare and the fulfilment of their rights [1]. The practice of female genital mutilation is a harmful traditional practice that involves partial or total resection of the female external genitalia or other injury to the female genitalia for cultural or other non-medical reasons [2]. The typology of FGM is shown in Table 1 [2]. FGM is recognised internationally as a violation of the human rights of girls and women and as an extreme form of gender discrimination that should be eliminated to achieve gender equality and women's empowerment. That is why the United Nations strives for its full eradication by 2030, following the spirit of Sustainable Development Goal 5 [3]. According to the latest United Nations Children's Foundation data, the exact number of girls and women affected by FGM globally remains unknown. However, at least 200 million of women and girls have undergone FGM and it is estimated that 68 million girls will undergo FGM before 2030 if action against this practice is not intensified [4,5]. Table 1. Types of female genital mutilation [2]. --- Type Description --- I Clitoridectomy This is the partial or total removal of the clitoris and in very rare cases, only the prepuce. --- II Excision This is the partial or total removal of the clitoris and the labia minora with or without excision of the labia majora. --- III Infibulation This is the narrowing of the vaginal opening through the creation of a covering seal. The seal is formed by cutting and repositioning the labia minora or labia majora, sometimes through stitching with or without removal of the clitoris. --- IV Others This includes all other harmful procedures to the female genitalia for non-medical purposes, e.g., pricking, piercing, incising, scraping and cauterizing the genital area. FGM is mainly concentrated in 130 countries in the western, eastern and north-eastern regions of Africa, along with the Middle East and is practised in some countries of Asia and Latin America with wide variations in prevalence [6]. Nevertheless, not all ethnic groups living in these countries practice FGM, nor do all the ethnic groups that practice it follow the same procedure. The kind of FGM carried out varies mainly according to ethnicity [7]. FGM is carried out during infancy with most girls cut before the age of 15. In others, it takes place at the time of marriage, during a woman's first pregnancy or after the birth of her first child [5,7]. Thus, although the practice is originally characteristic of certain areas, this local phenomenon has been globalised and spread around the world through the different migratory movements. Therefore, FGM and its harmful consequences are affecting a growing number of women and girls among migrant communities in Europe, North America and Australia [5]. According to the 2011 census, around 600,000 women and young females have experienced FGM in Europe and it is considered that 190,000 young girls are at risk of FGM in 17 European countries alone [8]. In the United Kingdom , it was estimated that 137,000 women and girls were living with FGM in England and Wales in 2015 [9]. In Spain, it is estimated that almost 70,000 women and girls come from countries affected by FGM [10]. The Valencian Community is the fourth Spanish autonomous community with the largest population from countries affected by FGM; mainly from Nigeria, Senegal, Guinea, Mali and Cameroon [10]. It is expected that the number of women with FGM in Europe will rise at quite a fast rate and future flows are expected to be strongly geographically selective, involving mainly France, Italy, Spain, the UK and Sweden [11]. This fact has implied that healthcare systems in European countries are increasingly being challenged to respond to the care of affected communities. The practice is painful and traumatic and its performance is often unhygienic or carried out by non-expert practitioners who have little knowledge of the anatomy of the genitourinary system of women and lack the ability to respond to adverse events. FGM has consequences that undermine the health and well-being of girls and women, revealing a remarkable situation on the global women's public health agenda [12,13]. The effects of FGM depend on several factors, including the type performed, the expertise of the practitioner, the hygiene conditions under which it is performed, the amount of resistance and the general health condition of the girl/woman undergoing the procedure [12]. Immediate complications include severe pain, shock, haemorrhage, tetanus or infection, urine retention, ulceration of the genital region and injury to adjacent tissue, wound infection, urinary infection, fever and septicaemia. Haemorrhage and infection can be severe enough to cause death. Long-term consequences include complications during childbirth, anaemia, the formation of cysts and abscesses, keloid scar formation, damage to the urethra resulting in urinary incontinence, dyspareunia , sexual dysfunction, hypersensitivity of the genital area and increased risk of HIV transmission, as well as psychological effects [12]. In addition to the physical and psychological impact of FGM, the associated complications are usually not the primary problems for women who arrive as refugees or migrants. They are very likely to come from conflict zones where they experience poverty, malnutrition, health problems, lack of educational opportunities and restricted access to health care services [14]. This fact discovers a variety of cultural realities for health professionals that have led to face new care challenges. Furthermore, migration can create or increase vulnerability due to multiple factors such as low socioeconomic status, language, cultural barriers, or lack of knowledge about healthcare rights and accessibility. This vulnerability can be notable during the period surrounding motherhood, when these women normally tend to attend for the first time the healthcare system. Almeida et al. reported, in migrant women, lower levels of access to health care and poorer birth outcomes than non-immigrants or English-speaking immigrants [15]. Evans et al. suggests that care and communication around FGM can pose significant challenges for women and other healthcare providers [16]. Several studies have explored the knowledge and attitudes of healthcare professionals regarding the practice of FGM in western countries evidencing a profound lack of knowledge about the practice of FGM [17,18]. Evidence also indicates that women affected by FGM do not receive appropriate healthcare due to cultural barriers and lack of knowledge and capability to provide competent transcultural care by healthcare professionals [17,18]. Nonetheless, limited research has examined how women and men experienced the practice of FGM and its consequences, as well as the healthcare received within the Spanish national public health system [19][20][21][22]. Furthermore, there have been no studies to date that examine the experience of women affected by FGM when receiving healthcare in the region of Valencia, although evidence indicates that healthcare providers are not knowledgeable about FGM despite being a problem present in the Valencian community [23,24]. To address this need and considering that FGM may act as an element of discrimination and a condition for health inequalities in contexts where the practice of FGM is unknown and ignored, the aim of this study was to gain in-depth experiential knowledge about the experiences regarding FGM of migrant women coming from FGM-practicing countries residing in their European host country. --- Materials and Methods --- Design A qualitative study design with a phenomenological approach was chosen. Phenomenology was selected on the basis of its relevance to research individual lived experiences, meaning-making and interpretation of one's experience or perception. This method, developed by Husserlian philosophy [25], aims to explore the same phenomenon through rich descriptions of individuals revealing common features of the lived experience. For Husserl, to understand a phenomenon, whatever the purpose, it is not possible to ignore the experience of the person who lives the phenomenon [25]. --- --- Data Collection All eligible participants who were approached agreed to be part of the study. Data were collected through 18 face-to-face open-ended semi-structured interviews and a focus group. The study was carried out in two stages: the first stage was carried out in London in January of 2017 and the second stage was carried out in Valencia from February to May 2017. The focus group was conducted in April 2017 in Valencia. The study was carried out in two stages based on the criteria of conveniencerelevance and the sufficiency of the sample, which were also considered to facilitate the research process and the scope of the saturation principle. First, a few questions exploring the sociodemographic characteristics of the sample were undertaken. The following general questions included women's experiences on FGM, its consequences and the healthcare received. The participants chose the times and locations for the interviews: participants' home, workplace or a cafe or a garden close to their homes. Two researchers were involved in carrying out the interviews. The researcher's credentials, occupation and training were informed to participants prior to data collection. All narratives were, after obtaining consent, recorded in audio format. Field notes were written after each interview to detail observations that could not be captured via the audio recording. The duration of interviews sessions ranged between 11 and 58 min. The focus group was conducted to stimulate the interaction between the participants and to explore the discourse in certain social context, capturing the social experience and the different opinions and contractions following Berenguera approach [30]. The focus group included five Nigerian women coming from vulnerable social groups such as prostitution and trafficking who agreed to participate. They were contacted through a local women's support association. The focus group was open, non-directive and flexible and offered the participants the freedom to answer or not the questions posed to them. For the implementation of the focus group, a second person was required to act as moderator. --- Ethical Considerations All participants received oral and written information about the purpose of the study, voluntary participation, guaranteed confidentiality and the right to discontinue at any time without any adverse effects. All participants signed a written informed consent prior to each interview. All interviews were coded prior to their transcription to guarantee the confidentiality of the participants. Approval was obtained from the Ethics Committee in Human Research of the University of Valencia, Spain. --- Data Analysis Data analysis was conducted according to the four-step phenomenological approach of Giorgi [31] and took place concurrently with data collection. The first step was data immersion; interviews transcripts and field notes were thoroughly read and digital recordings were also carefully listened to obtain a sense of the whole described by the participants. All interviews were transcribed verbatim by the lead researcher protecting all the participants identities using code numbers. The second step involved dividing narrative data into concepts which required the extraction of individual meaning units or conceptualisations. This was possible by re-reading the transcripts again breaking down the whole through analysis into common elements. Together two authors independently analysed the narratives and interviews both as a whole and for meaning. To facilitate the management and grouping of qualitative data, the Atlas.ti v.8. qualitative data analysis software was used [32]. The third step consisted in organising, analysing and transforming the language of the participants into a conceptual perspective of the experience, relative to the phenomenon of interest. This step saw the emergence of themes and the authors worked collaboratively to discuss the emerging themes and resolve any differences. In the final step, themes and sub-themes were combined into a final general description that reflected the lived experience of participants. All researchers agreed on the final thematic structure. --- Rigour To assess the rigour of the research process developed in the framework of qualitative research, we have based ourselves on the general criteria described by Guba and Lincoln: credibility, transferability, dependency and confirmability [33]. Specific strategies to attain trustworthiness were used as recommended by Guba and Lincoln [33]. Firstly, to obtain credibility, data are presented as verbatim quotes and explained by the authors' interpretation to illustrate the richness of the data. In addition, the data, researchers and methods were triangulated. The member check strategy was also performed with one participant who agreed to reviewthe returned transcript. Secondly, to facilitate transferability to other settings, detailed descriptions of the context, the sample, the participants' perspective and the phenomenon itself have been produced in order to allow readers to make informed judgements about similarity between contexts. Thirdly, to check dependability, data collection tools and analysis strategy and findings are thoroughly described. Finally, the researchers used reflexivity about their own position on the topic to ensure the confirmability of the data. This study has been reported in line with the Consolidated Criteria for Reporting Qualitative Research guidelines to enhance the quality and transparency of the study [34]. --- Results From the 23 experiences collected, 20 women had undergone FGM, of whom 14 had been mothers. The mean age of the men interviewed was 50 years, while that of the women was 31.8 years. All the participants came from countries affected by FGM: Mali, Somalia, Nigeria, Burkina Faso, Senegal and Cameroon, except for one participant who came from Equatorial Guinea and was included in the study since she had close contact and knowledge about FGM. The detailed sociodemographic characteristics and the FGM status of the study participants are shown in Tables 2 and3. Three main themes were derived from narrative data: FGM consequences, healthcare received and tackling FGM. From these, several sub-themes emerged, which are described below . Representative quotations from the participants are used to verify and validate the findings. --- Consequences of FGM In this category, the following subthemes were derived: "obstetric consequences", "genitourinary consequences", "pain", "sexual complications", "psychological and social consequences", "men's consequences" and "lack of insight". In general terms, both short and long-term consequences were described. The severity of complications depends on the type of FGM that has been performed, types II and III being the most intrusive: "The bigger the grade is, the more complications are" . Other factors, such as the girls' prior health or the conditions in which the practice is carried out, also influence the consequences of the procedure. --- Obstetric Consequences Regarding obstetric consequences, the most frequently mentioned were postpartum haemorrhage, perineal tears, pain, caesarean delivery and the risk of infection. Infertility, preterm birth, shoulder dystocia and even death were also mentioned . Serious complications such as the death of girls and women due to postpartum haemorrhages were discussed. Of the fourteen women who had undergone FGM and had been mothers, 46% ended the pregnancy by an elective caesarean section or by an urgent caesarean section due to failed induction of labour. --- Obstetric-Gynaecological Complications Postpartum haemorrhage "I started working in a maternity ward when a pregnant woman arrived for birth it was a disaster two women in front of me lost a lot of blood . . . " "Two girls from my town, 18 and 22 years old died in childbirth in my town there isn't a blood bank, there is nothing at all, if your wife has a problem with childbirth you have to take the woman by bicycle to the nearest maternity hospital, which is 8, 10, 20 km away from town . . . " Perineal tears "It was very painful, that's what I always say. I asked the midwife then how many stitches I had, but they could nou be counted. They gave me a lot of stitches inside and outside" Infection "There are many complications for women first, there are many hygienic infections" "Strong pain ... but also if you are unlucky you get an infection..." Arm palsy "The problem was with my third baby , to get him out they forced his arm . . . the midwife squeezed a lot and his arm ended up broken. He has arm paralysis" Preterm birth "They were very preterm; they were born at 23 weeks" Infertility "Yes, yes, we were trying for a while, with the second insemination I got pregnant" Death "When you are pregnant . . . labour is usually very difficult, there are even girls who die giving birth" "At times there are girls who bleed a lot and sometimes they die" --- Genitourinary Complications Multiple allusions were also made to bleeding secondary to FGM itself, also associated with the significant risk of traumatic wound infection. "In my country they usually do FGM to babies of a week or days of life. There are not so many means to do it. Likewise, they cut 20 girls using the same knife, so there are many infections. There are also girls who die from hemorrhages . . . " "There are many complications first, there are plenty hygienic infections" "Bleeding... Her family was healing her, at home! Not in a hospital" In addition, to wound infections caused by FGM, women also refer us to other genitourinary complications such as repetitive urinary tract infections: "Yes, many , as a child and now" --- Pain Moreover, the pain is a symptom that appears associated with most complications' secondary to FGM. We have found references to it both when urinating , having sex , related to menstruation or related to birth or gynaecological examination . Table 6. Quotations related to pain associated to the practice of FGM. --- Pain --- Dysmenorrhea "I was lucky because I never had problems with my periods, the man who was doing it was a doctor, so he didn't cut us like other people from outside the city" Dysuria "The first time I went for a wee it was very painful. I didn't want to go to toilet, I was holding my wee . . . I was crying I will never forget that moment" "Bad things, pain for wee at the beginning. After 2 weeks, it was normal" Dyspareunia "Period problems, having sex is very painful . . . " "She has 3 children but with her husband during intercourse she is always screaming" Pain during birth "I didn't feel it, but they say that when you are giving birth there are women who find it much more difficult it hurts more when giving birth They say that there are births that last longer and are harder" "I have explained to him the inconveniences that women have when giving birth because they see it the opposite of the ones here; they think that women who are not mutilated at the time of giving birth they will suffer a lot, but it is totally the opposite" --- Sexual Complications Regarding the consequences on sexuality, dyspareunia, the decrease or absence of erotic desire, the decrease in the quality of sexual relations and anorgasmia were mainly mentioned: "Then, when you get married it is very difficult to feel pleasure" , "She is suffering because she does not have the desire to have sex" . --- Psychological and Social Consequences Regarding psychological consequences, the participants did not explicitly describe suffering from anxiety and depressive disorders, post-traumatic stress, or reminiscences of the moment of the cut. However, we can find verbatims of clear components of psychosocial affectation such as loss of self-esteem, feelings of humiliation and fear of social rejection and dishonour of the family. "I had to please my parents, I had to please everyone. I was given plenty of gifts, gold, jewellery, which is hardly praised in our culture" "Because a girl who is not mutilated, people call them 'bilákoro', it's like . . . if you are dirty, you are not welcomed . . . " "It is a party, the day of FGM comes and then the whole family gets prepared. It is said that the girl's crying defines the courage of the family" 3.1.6. Lack of Insight Finally, we have also found different testimonies from women affected by FGM who report not having suffered any associated complications. Two participants expressed: "There are no complications after female circumcision" ; "It didn't affect my sex life and it didn't affect my pregnancy. I would have loved to have my clitoris hanging, but it's not there which is fine, no problem! Sex life it's OK! I cannot complain! " Many women do not perceive the consequences and complications as a cause of FGM, since they understand that they are "common and normal in women". Therefore, they do not perceive the need to seek support, help or assistance in the face of a problem, since they consider it as something intrinsic to the nature of women. "If they have severe FGM types, they have lots of problems such as infection, difficulty with bleeding like periods problems. However, they do not seek much help because they think that is normal for every woman, the more they are educated the more help is seek. Yes, but I do not think they will be coming in numbers. Only the ones who knows better" There is also a belief in some communities that if something bad happens, the existence of a "higher being" is what determines the final result as reported by one participant:"It is something normal in life. For example, when girls die during the FGM procedure, people think that God has made the decision and it happens because it must happen. It is the same for women who die giving birth. They do not associate it with mutilation" 3.1.7. Men's Consequences Some of these consequences also affect men. For I2LW interviewee, men do not suffer any consequence: "I don't know the men, I don't think they have problems" . However, other participants suggest the opposite: coping with the fear of losing virginity on their wedding night, frustration, or decreased quality of sexual relationships. "A lot of pressure comes also from men, but I think in my culture lots has changed, and men are stepping back, and they don't want to go through that trouble , when a woman who is FGM type III comes to them, and they have to open their vagina with their own genitalia" "There are men who do not want to sleep with the woman that day, but there are others who force her wives because they have to do so " "Women do not have pleasure when they have sex and this generates many frustrations, for men too, so they do not feel satisfied in bed and then the problem begins. They go with other women . . . " --- Healthcare Received From this theme, four subthemes were derived: "unacquainted professionals", "lack of detection and information", "stigmatizing and over-inquisitive attitudes" and "offering reversal or deinfibulation". --- Unacquainted Professionals The lack of knowledge about FGM of different professionals perceived by women emerged, for example, when they underwent gynaecological examination or received childbirth care. "I knew that the way they looked at me meant that they had no knowledge of what had happened to me When we talk between us, the ignorance of professionals comes up" The interviewee I8VW experienced an unpleasant situation in consultation, when the midwife made an unfortunate comment, thus demonstrating a lack of sensitivity and information about FGM and its approach: "The midwife found it very rare that performing a cervical smear would hurt so much and she told me: 'if the penis has fit there, it shouldn't hurt so much'. I explained to her why it was so painful for me. Ashamed she apologised" --- Lack of Detection and Information Participants reported that healthcare providers failed to detect FGM and its consequences. Practically all the women interviewed in Valencia reported that no professional asked them if they had undergone FGM at any time during their pregnancy or any other health visit: "No, no... they didn't tell me anything about it, nobody" , "No, no one has never asked me this" . Some participants suggested that although some professionals may be knowledgeable about the practice, they do not ask because of embarrassment and a lack of skills to handle the situation: "I think they do know but they don't ask, they may be ashamed . . . " . This fact has an impact on the information provided and, consequently, the quality of care for these women, girls and families. On the contrary, all women who gave birth in a hospital in the British Health Care System were asked during pregnancy about FGM: "But when I was doing my booking, they asked me if I had FGM done" , "During my first pregnancy they kept asking me if I had been circumcised" . --- Stigmatizing and Over-Inquisitive Attitudes Another important aspect to highlight is the stigma. To avoid stigmatization of different cultures and groups, professionals should demonstrate respect for different cultures and their ritual practices, which is wholly compatible with showing a frontal rejection of FGM. Professionals should avoid issuing blaming judgments to these women, since, as I1LW interviewee described, "she did not choose to be mutilated". Statements from healthcare providers such as, "we have to refer you to social services" during the first pregnancy consultation were construed as very offensive, even more so for this specific interviewee, who as a midwife knew the action plan perfectly, but did not agree with the way in which the professionals had decided to act and communicate. This participant stated: "But when I was doing my booking, they asked me if I had FGM done. I said yes, and they said that if I had a girl, they would have to refer me to social services . . . for child protecting issues. This was quite offensive because I don't want anyone else what I have been through" . "It wasn't my choice; it wasn't me going to the doctor and saying: 'I want FGM to be done on me' . Instead of judging women, professionals should raise awareness, provide education and emotional support if women's been traumatised" --- Offering Reversal or Deinfibulation Four of the participants were offered a reversal of FGM intrapartum which was accepted by two of them. These women who were offered a reversal attended the British healthcare service. "I was in labour and the doctor came and told me that he will open before the baby came. I refused because I didn't want it. But at the end I had caesarean not because pf the FGM but because the baby was stuck somewhere. With my second baby I also had caesarean" "They said to me: 'You can't deliver your baby unless we open you'. And I chose to be opened the day of delivery. I didn't want to have a reversal in pregnancy, I wanted everything at the time of delivery, all together" None of the Spanish participants were offered a reversal during pregnancy. One Spanish participant requested surgical reconstruction, but she found that professionals did not always know the procedure to follow. Information on the possibility of undergoing reconstructive surgery was obtained in this case by friends, women in the same situation and the media : "I requested it. I heard of it from a friend I looked it up in 'YouTube', I looked for information so I found out what could be done After asking different professionals, I found a midwife who referred me to the specialist doctor" --- Tackling FGM Under this main theme, the subthemes "education and awareness", "speaking up", "improving prevention" and "penalization" were derived. --- Education and Awareness Participants emphasised the education and awareness of women and men -as a fundamental component in the practice maintenance-, both in current countries of residence and in countries of origin with prevalence of FGM. "Oh God! Education, education, education. I can't say it enough! And also educating men here but also back home" "To avoid this practice, women must go to school When a woman is not educated, she cannot think, she cannot defend herself " --- Speaking Up Furthermore, many of the participants emphasised the idea of speaking up about the practice and showing support for its eradication. Two of the interviewees described that after several years in Spain, they returned to their places of origin to publicise the consequences of FGM and work with the community towards its eradication, trying to generate action for social change. "I explained to my mother the inconveniences and I have succeeded to prevent my daughter and nieces from FGM. It is possible! If there is a will, there is a way. I didn't know that I could convince my mother either" "When I went back to my country, I gave a talk about FGM at first, I looked as if I was no longer African, my mind had changed a lot" "I have also held a meeting with all the women in my town Now I can say that 80% of the women in my town have abandoned the practice" --- Improving Prevention Another aspect that emerged during the interviews was the prevention of FGM in girls. Several quotes demonstrate that girls, despite residing in Europe, continue to be at risk of FGM when they travel to their country of origin: "One day I was talking to my mother, and she told me that she was waiting for my daughter to cut her clitoris with the others . . . " . --- Penalization Some interviewees proposed dealing with FGM by penalizing and prosecuting the practice. However, they also state that this is not always effective because although the performance of FGM may be punishable by law, the law is not always fulfilled: "Yes, yes, in my country it is prohibited. They do it, but it is prohibited. But it may be that one day it will end" . --- Discussion In the present study, the experiences of women and men from FGM-affected countries were investigated via qualitative analysis and assigned to three main themes. As discussed in the interviews, the consequences of FGM are complex and affect different spheres of women's and men's lives along with their families. With regards to the consequences for women's health which are described in our study, participants highlight both obstetric and gynaecological consequences and complications such as postpartum haemorrhage, perineal tears, completion of caesarean delivery, infertility, risk of infection and dysmenorrhea; genitourinary complications such as urinary tract infections and dysuria; consequences for sexuality, mainly dyspareunia, decreased or absent erotic desire, decreased quality of sexual intercourse and anorgasmia; and psychological consequences such as loss of self-esteem, feelings of humiliation, fear of social rejection and family disgrace, which coincide with several synthesis studies [13,[35][36][37]. Death, as a major complication and consequence of FGM, was also referred to by several participants. Although the consequences for women's health appear to be the most predominant, socioeconomic consequences and those affecting men were also described by interviewees. Direct economic consequences on women and their families can originate fundamentally from the development of infections secondary to FGM that require expensive treatment, or the development of other complications that can lead to disability. In the long run and in certain contexts, this situation could lead to direct economic dependence on the husband or father [38]. In addition, the practice of FGM and the associated ceremony, can cause high costs that lead to family debt. In many communities, FGM is a cultural requirement for girls who go into adulthood to acquire a certain social position and belong to a group. FGM is an important brand of social identity and not conforming to this can lead to social consequences, such as bullying, ridicule, social stigma, exclusion from the adult community, community events and social support, discrimination by peers, social rejection, loss of social status, increased isolation due to lack of marital capacity and family shame, as well as exclusion of the whole family from the social acceptance and welfare system of the community, as demonstrated by participants [38,39]. Regarding the consequences for men, those most mentioned included the pursuit of pleasure outside of the relationship, the fear of causing pain with penetration, or unsatisfactory sexual intercourse, as described previously [21,40,41]. Notwithstanding the health and social consequences acknowledged by most participants, we also found reports of women who did not associate any complications with the practice. In this way, Reig-Alcaraz [22] demonstrate a lack of self-awareness about the health implications for women who have undergone FGM. Our findings agree with previous research where Somali women expressed their feelings as: "It is normal" or "I am normal" [42,43]. For these women, there is no other way of being a woman and no other way of experiencing sexual intercourse and, motherhood, etc. They do not perceive the need to seek support, help or assistance, since FGM is commonly deemed intrinsic to a woman's nature. Furthermore, a lack of education and misinformation about their own health accentuates this situation, which explains why women with a higher level of education advocate more strongly for the abandonment of the practice [44]. Regarding the healthcare received, the experiences of the respondents are varied. However, we observe clear differences between those residents in London and those interviewed in Valencia. For many of these women, their first contact with the health services in their host country is when they are pregnant [45]. During pregnancy, none of the women interviewed in Valencia reported that they were asked about FGM, even though having undergone FGM makes it more likely to experience obstetric complications [36] and special care is needed because the long-term health problems of FGM are in many cases irreversible. The impact of FGM during the birthing process should be sensitively discussed and a plan of care should be agreed to reduce fears about how the births will be managed [46]. All women, regardless of their country of origin, should be asked in their first pregnancy visits whether they have undergone FGM and this information must be recorded [36]. The detection of FGM was a causal finding during gynaecological examinations or during the birthing process in all cases attending the Spanish healthcare system. In Spain, the study participants perceived a profound lack of knowledge about FGM by healthcare providers as evidenced in regional studies [24,47] that coincide with other European research [17,18]. In Valencia, less than a quarter of primary healthcare professionals correctly identified the typology of FGM, five percent correctly reported the countries where the practice is prevalent and only a third of the professionals were able to detect cases at risk of FGM [24]. Thus, most health providers do not know enough about FGM and are therefore uncertain of how to adequately deal with it. Moreover, participants reported a lack of information received during pregnancy and childbirth, as documented in other western countries [48]. In addition, interviewees reported negative experiences during vaginal examinations because professionals presented facial and verbal expressions denoting significant lack of knowledge in relation to the modification of the external genitalia. This fact has also been described in prior research [20,47,49]. Similarly, when requesting information on reconstructive surgery in Spain, there were severe difficulties in locating the appropriate information and referrals, as described in previous research [20]. This fact highlights the need for easily accessible educational resources and evidence-based guidelines to enable health professionals to reduce structural inequities and optimise health for women and girls who have undergone FGM. On the other hand, women residing in the United Kingdom emphasised the high level of awareness and knowledge of healthcare providers. Based on the interviews with the participants, the professionals who attended them during their antepartum visits, labour and postpartum period, were fully aware of the established protocols and guidelines for action. Moreover, all women who gave birth in a hospital in the British Health Care System were asked during pregnancy about FGM. Despite this, women still felt discriminated against at times due to the stereotyping of healthcare providers and their insensitivity toward FGM. Interviewers also described a lack of understanding of cultural differences, perceiving the concerns of health professionals in relation to FGM as disproportionate. For example, some women perceived shaming and even threatening attitude in relation to the continuity of the practice of FGM for future newborns, without even having explored maternal intention in relation to the continuity or abandonment of the practice. In this sense, the experiences of migrant women collected by qualitative studies in countries with a large migrant population from countries affected by FGM reinforce a worrying lack of empathic care and sensitivity [45,46]. Finally, throughout the participants' discourse, different strategies and actions to improve healthcare for women and girls affected by FGM as well as the prevention and eradication of the practice of FGM emerged. Participants highlighted the importance of educating and raising awareness among women and men both in their hosts countries and countries of origin [50][51][52][53]. Participants also mentioned the impact of speaking up and making FGM known globally. There are increasingly more initiatives to empower girls and parents to reject this harmful practice, pushing for deeper transformation in the community. However, empowerment and education come together. Our findings also support a previously demonstrated need to improve prevention and detection strategies [21,47,50,54]. To build a relationship of trust with communities affected by FGM, healthcare providers must have an accurate understanding of the cultural background surrounding this practice, a working knowledge of the different types of FGM procedures that may be encountered and an awareness of both the acute and long-term complications. Asking routinely about FGM may encourage open communication and facilitate more positive experiences [43]. --- Limitations This study has certain limitations that require to be acknowledged. Firstly, one of the major limitations was searching for the study participants. When using the "snowball" technique, one of the possible biases involves the oversampling of a network of peers [27]. In addition, individuals who share economic or social activities and who present similar characteristics may end up having a greater representation in the sample [29]. To minimise this bias, multiple snowballs starting from different key informants were used, attempting to expand the scope of the research beyond a single network. Another limitation of this sampling method is that participants may hesitate to provide names of other people who have undergone FGM and on occasions, asking for it may have raised ethical problems for the participants. For this reason, key informants initially contacted potential participants. Those who agreed to receive the study information and to be contacted by the researchers were those who were ultimately approached for their participation in the study. Secondly, because the nature of the subject can be very sensitive, it is possible that some of the interviewees have not been able to express their feelings and experiences with total spontaneity and freedom. Finally, it was also considered that participants may not have been completely truthful in some of the aspects discussed, because, among other reasons, FGM is a harmful practice punished both in the United Kingdom and in Spain. --- Conclusions The current study identifies health and social issues in migrant women and men affected by the practice of FGM from their own perspective. Migrant women residing in Spain perceived a profound lack of knowledge about FGM from healthcare providers and consequently stressed that the information received was insufficient. The findings also illustrate that sometimes participants encountered negative attitudes when accessing healthcare services in their host countries and for certain participants the language used by health care providers was seen as frightening or humiliating. Some women's experiences suggest a concerning absence of sensitive and empathetic care and a more woman-centred and human rights-based approach is recommended. Our findings disclose the need to improve training and institutional plans to address structural and attitudinal barriers to health equity across migrant families in their host countries. This study may contribute to making visible this unknown practice among health providers and may serve as a basis to formulate strategies aimed at strengthening the care of women and girls affected by FGM from a comprehensive, respectful, cultural and gender perspective, while also being effective in eliminating the physical and psychological consequences of FGM and reducing health inequalities for migrant women and girls. Trying to deal with the crisis of violence against women this study provides insights from the perspective of women who have been affected directly by the issue, through the discussion of personal experiences related to the provision of care. It also offers a broad and holistic understanding about the phenomenon studied, which can inform professionals about the realities of the practice of FGM. Such insights are vital to provide women-centred care, particularly for women and girls from vulnerable groups whose voices are often unheard. Informed Consent Statement: All participants received oral and written information about the purpose of the study, voluntary participation, guaranteed confidentiality and the right to discontinue at any time without any adverse effects. All participants signed a written informed consent prior to each interview. ---

European healthcare systems are increasingly being challenged to respond to female genital mutilation (FGM). This study explores the FGM experiences of migrant women coming from FGMpracticing countries residing in a European host country. A qualitative phenomenological study was carried out and 23 participants were included. Data were collected through 18 face-to-face openended interviews and a focus group and were analysed using Giorgi's four-step phenomenological approach. Three main themes were derived: "FGM consequences", "healthcare received" and "tackling FGM". Participants highlighted obstetric, gynaecological and genitourinary consequences such as haemorrhages, perineal tears, caesarean delivery, risk of infection, dysmenorrhea, urinary tract infections and dysuria; consequences for sexuality, mainly, dyspareunia, loss of sexual interest and decreased quality of sexual intercourse; and psychological consequences such as loss of selfesteem, feelings of humiliation and fear of social and familial rejection. Women perceived a profound lack of knowledge about FGM from health providers and a lack of sensitive and empathetic care. Some women perceived threatening and disproportionate attitudes and reported negative experiences. Participants highlighted the importance of educating, raising awareness and improving prevention and detection strategies. The findings disclose the need to improve training and institutional plans to address structural and attitudinal barriers to health equity across migrant families in their host countries.

and culturally unsafe practices [1]. Health inequities begin before birth and continue throughout the life cycle [2]. Reducing disparities from the very beginning of life is therefore vital. Of particular concern, the maternal mortality rate of Aboriginal women is nearly three times higher than non-Aboriginal women [3], with Aboriginal women having higher rates of gestational diabetes and smoking during pregnancy [4]. Aboriginal babies are nearly twice as likely to be born preterm and have low birth weight. The perinatal mortality rate of Aboriginal infants is double those of non-Aboriginal infants [1,[5][6][7][8][9][10][11][12][13][14][15][16][17][18]. The complexity of factors that contribute to these disparities in health care for Aboriginal women and children include lack of culturally appropriate health services, institutional racism, lower educational attainment, poverty and the ongoing effects of colonisation [7,10,13,19]. Remoteness adds additional challenges to health service provision and delivery thereby further decreasing Aboriginal maternal and infant health outcomes [1]. It is no surprise then that Aboriginal women are less likely to engage in mainstream antenatal care than non-Aboriginal women [20]. Fear and anxiety, from not feeling culturally safe, means that Aboriginal women access fewer maternal and infant health care services than non-Aboriginal women [21,22]. Engagement is increased when there are ongoing relationships with health workers, especially those who are also of Aboriginal descent [20]. In Australia and internationally the most successful models of midwifery care for Indigenous women are those that support relationship development through continuity . Continuity of care refers to service models in midwifery practice that integrate continuity of services and/or continuity of carer during antenatal, labour, birthing and beyond to post-natal care of infants [23]. Such care is considered more culturally safe than other models and can lead to more families engaging in perinatal health care [24]. Yet continuity for Aboriginal families is limited by a western biomedical approach to care, structural constraints to healthcare provision such as limited resourcing and unyielding policies, and the approach and attitudes of clinicians [25]. Providing care that is culturally safe is a core requirement of nursing and midwifery practice [26]. Despite this, it is currently not consistently demonstrated across the first 1000 days of Aboriginal infants' lives [25]. Indeed, Midwives have limited knowledge about Aboriginal women's cultural needs and limited access to cultural education [27]. South Australian child and family health Nurses had little understanding of what constitutes racist practice and inconsistencies in knowledge of the impact of racism on children and families [28]. Moving from individual practice to models of care, there is very limited research exploring how continuity of care is enacted by Midwives and Nurses with Aboriginal families transitioning from antenatal through to child and family health care across the entirety of first 1000 days [25]. Further, there is little evidence marking the contribution made by Aboriginal workers to the health care team. It is not known how continuity is enacted within and between mainstream health services for an infant's first 1000 days. Also, it is not known how and if continuity of care is experienced as culturally safe. --- Methods --- Aims of the study The overall purpose of this study was to [1] explore and identify health workers' capacity to provide continuity of care that is thought to be experienced as culturally safe by Aboriginal families with infants in the first 1000 days of life, and [2] to explore with Aboriginal family experiences of care as continuous during the first 1000 days of their infants' life. This paper reports on data related to aim [1] provided by Child and Family Health Nurses , Midwives, Aboriginal Maternal Infant Care workers and Aboriginal Cultural Child and Family Support Consultants about their perceptions and experiences of care provision. --- Research design This qualitative study was conducted in collaboration with a state-wide mainstream health service responsible for providing care to Aboriginal families across the first 1000 days in Adelaide, South Australia. Ethical approval for this research was granted by the Flinders Social and Behavioural Research Ethics Committee Project Number OH-00185, the Aboriginal Health Research Ethics Committee project number 04-18-769, and the Women and Children's Health Research Ethics Committee project number HREC/18/WCHN/90. --- Participants and recruitment Practitioners working as ACCFSCs, AMIC Workers, Midwives or CaFHNs in seven metropolitan service areas and one rural service area, were invited to participate in the study. In general, CaFHNs and Midwives work with women of any cultural background, whereas AMIC and ACCFSCs work only with Aboriginal women, or women giving birth to Aboriginal babies. Via an initial convenience sample, then a purposive sampling [29] technique, participants were recruited via email through study sites in clinical and community settings working with Aboriginal families. The participant and recruitment context is made up of a large portfolio of health networks and services to people in South Australia [30]. The Aboriginal Family Birthing Program provides antenatal and postnatal care in a culturally sensitive environment, with the support of Midwives, doctors, AMIC workers, social workers, and family support workers [31]. Following the birth of a baby, families in South Australia are offered a consultation with the Child and Family Health Service , who supports families in South Australia with health and development checks of children aged 0-5 years. The Child and Family Health Service has a number of Aboriginal Cultural Child and Family Support Consultants , CaFHNs and Aboriginal clinical leaders whose role is to support parents and carers of Aboriginal identified infants [32]. Overall, there were 18,574 registered births in South Australia in 2020, where of 1025 were Aboriginal and Torres Strait Islander births [33]. --- Data collection and analysis In total, eight focus groups were held with 52 health and community professionals. The shortest interview was 25 min and the longest 1 h and 3 min and were guided by a semi-structured interview schedule. FGs were offered with homogenous groups to reduce potential issues of unequal relations of power between the disciplines. This strategy is shown to yield clearer, more valid and generalisable results [34]. They also enabled interactions between the participating health care professionals to gather broad range of views and experiences [35][36][37]. A FG guide was used consistently across all FGs . Participants included ACCFSCs , AMIC Workers , Midwives and Child and Family Nurses . The sample included participants who identified as Aboriginal and those who did not . Participants were provided with an information sheet and written consent was obtained prior to the interview. Health and community professionals' experience ranged from 1-45 years. During the focus group, participants were asked about continuity of care, management of transitions between services and cultural safety. --- Analysis Audio recordings from focus groups were transcribed for analysis and coding, which was undertaken as a team with multiple authors present through all stages. Data was firstly inductively coded using NVivo ™ software [38] for content and meaning, then thematically analysed by the research team guided by Braun and Clarke's [39] thematic analysis framework. Initial descriptive coding consisted of reading through qualitative data and coding passages that provided answers to the research questions. These were clustered according to emerging patterns. An interpretive second cycle involved filtering, highlighting, and refining the meanings of codes into categories and concepts, then building analytical themes [40]. During this stage of iterative team discussion and synthesis, particular care was taken to view the findings through a theoretical lens of cultural safety [41]. In the first stage descriptive analysis, participants identified that they did not feel enabled to provide continuity of care. Poor continuity of care was observed and experienced in practice with participants reporting inconsistencies in transitions between services. The majority of participants believed that the lack of continuity of care resulted in culturally unsafe practices, and those individuals that did feel as though they could provide culturally safe care, were doing it despite the system. They identified prioritising relationships within and between systems, including amongst co-workers and with consumers, clients, and patients. These staff identified working beyond standard practice within the environment of the system. Findings are presented by weaving text and quotations; selected spoken words illustrating participant meaning are blended with narrative text as evidence, explanation, and illustration to deepen understanding, give participants a voice, and enhance readability. There is clear distinction between the author's narrative and the verbatim quotations, which are written in quotation marks and italicised [42]. --- Table 1 Participants --- Health professional group --- Number of FGs --- Number of participants --- Participants identifying as Aboriginal --- Participants identifying as non-Aboriginal participants --- Work experience in years --- Min In the second stage data were explicitly interpreted through a lens of cultural safety. Ramsden [43], a Maori Nurse leader in New Zealand, developed the concept of cultural safety due to health inequities resulting from colonial health care systems, and advocated for change to service delivery. Historically, these processes disregarded the illness and health belief systems of the Maori, and instead, privileged those of the dominant 'white' culture in the construction of the healthcare system [44]. Cultural safety reminds us all in health care to reflect upon the ways in which our policies, research and practices may continue to inflict traumas upon Aboriginal people [44]. In this research we look through cultural safety as an interpretive lens to interrogate ways in which health policies, systems and service delivery is perpetuating systemic colonisation. The analysis instead focusses on systemic reflection and how we can use cultural safety principles to discuss equity, restorative policies, and justice, negotiated partnership [45] and two-eyed seeing to decolonise care and service delivery [46]. This interpretive process resulted in categorisation into three main themes . --- Results Three key themes were identified in the data: The system takes priority, with sub-themes of the system isn't working, entry into the system is problematic, pathways and referrals within and between services are disjointed, external linking is reliant on individuals, and workforce issues limit continuity of care; culture is not central in approaches to care, with sub-themes of services and approaches to care, and importance of relationships; and 'we've got to be allowed to do it in a different way' , with sub-themes of the system is racist, call for decolonising the system, and ways forward. --- Main theme 1 the system takes priority The system isn't working Discussions identified that the family journey is not supported by the system pathway and the system appears not to have continuity at the core. "There are just too many different things out there and there are just too many gaps to fall through, and the people right up the top, they need to really work together to get it right". . The system supporting Aboriginal families is reported to be fragmented with interactions between services are often disjointed and without integration. "I think that's the problem, though, of not having the continuity. Knowing that you've got the continuity at the triage [start of care journey antenatally], because if you knew you had the continuity at the triage, you could follow up" . Discussion in FG 2 identified the frustration of not always knowing how to support families in the system because continuity was not prioritised depending on the models of care presented to a family and how they were supported to make choices. They noted that while attempts had been made to address this, they were not always successful. "If they opt for our kind of care in our [mainstream] service then we'll try for continuity with an AMIC worker provided but that doesn't always [happen]" . Within the current system there is service repetition with multiple services doing exactly the same thing. "We had a lady just recently that's got multiple services in there that the lack of continuity of care resulted in culturally unsafe practices, and those individuals that did feel as though they could provide culturally safe care, were doing it despite the system. • They identified prioritising relationships within and between systems, including amongst coworkers and with consumers, clients, and patients. • These staff identified working beyond standard practice within the environment of the system. --- STAGE 3 INTERPRETIVE SECOND CYCLE CODING WITH THEORETICAL LENS OF CULTURAL SAFETY • Application of theoretical lens of cultural safety • Filtering, highlighting, and refining the meanings of codes into categories • Building concepts and analytical themes via team discussions and view of findings through a theoretical lens of cultural safety • Key Theme The system takes priority Sub-themes the system isn't working entry into the system is problematic pathways and referrals within and between services are disjointed external linking is reliant on individuals workforce issues limit continuity of care • Key Theme Culture is not central in approaches to care Sub-themes: services and approaches to care importance of relationships • Key Theme 'we've got to be allowed to do it in a different way', w Sub-themes the system is racist call for decolonising the system ways forward. --- Fig. 1 Analysis and key themes that we had no idea that we were doing. So, continuity of care goes out the window then because you've got multiple services that aren't talking to them, and I think that a lot of problems with a lot of these clients [Aboriginal families] is because their services aren't talking" . With a lack of communication between services, different services may not be aware of all the support a family is receiving. --- Entry into the system is problematic Continuity can be further challenged when families are seeing multiple services and different workers within services. Although there is a state-wide pregnancy information phone line , approaches to entering the system are not consistent with different entry points and varying information about services available. Participants in FG 1 argued that Aboriginal families may not be informed of all their options and services available. "The mums are not told in the hospital that they might be able to go to a local Aboriginal health service …they don't get that opportunity. If it means that they want to go down that path, then a track needs to be developed, a pathway needs to be developed so that that can happen" . Participants in FG 2 identified that taking particular antenatal pathways excludes Aboriginal families from other services. For example, intake systems do not align. "Their intake system doesn't necessarily match with how we operate so there's a gap" . If families want to enrol in the mainstream birthing program, they are excluded from the Aboriginal health service . A major challenge identified in this group was for health workers and families to know about all the different services and programs. A further concern was that the mainstream state-wide system enforced limits on the total number of women assisted by culturally appropriate services. This meant that if Aboriginal women did not enrol early enough in their service of choice, they missed out. Additionally, Aboriginal women could not have both a mainstream midwife and Aboriginal care. For example, the MGP is popular and sought out early by informed women. "The other thing too with the continuity models generally, I'm thinking about MGP as well, they're very popular. And a lot of the well-educated women will be seeking them out early. So, those places fill very quickly" . Women who do not get into MGP may then miss out on continuity with the Aboriginal Family Birthing Program because they are then in a later stage of pregnancy. Further, restrictions occur at a system level when for example, the location of services, funding requirements that family enrol antenatally and follow through, families may not be informed that a service is voluntary, and restrictions on how care is provided. --- Pathways and referrals within and between services are disjointed Post-birth pathways for all families, including Aboriginal families, begin with CaFHS . Entry into this service pathway is not through personal contact but is automated with predetermined service progression. The CaFHS Nurses provide a follow-on service from Midwives' home visits. This is problematic for Aboriginal families as AMIC workers are excluded from the formal pathway. "It would be good for those forms, if the women are Indigenous or baby is Indigenous, that those forms don't just go to a Nurse, that they are automatically sent to the ACCFSCs for the ACCFSCs to be the primary carer" . Information technology systems to support continuity of care and referral between services within the state-wide mainstream system were reported to be lacking. Participants expressed frustrations with a system that relies on old technology, paper forms and fax, to connect community-based child and family health service with families after giving birth. "That piece of paper referral has got to follow that mum all the way through" . These apprehensions progressed to concerns about lack of continuity for the family across the entire pathway from antenatal care to birthing and through to community-based care with child health services. For example, understandings of predetermined generic pathway into CaFHS, where hospitals do not additionally send referral forms onto Aboriginal health services. "It never goes to the Aboriginal Health Service so they can go out" . As a consequence of not referring to Aboriginal services and workers "many of our clinic Aboriginal families might not get that option of having a worker. So, I think that's a gap" . Within the mainstream network discussion from FG 5 identified that the system appeared to be a series of services that were not integrated. "It's very separated. And its forced separation so I think we're seen as different people and services … the ACCFSCs service and your service [Aboriginal Maternal Infant Care] are just very different, and they operate separately" . Aboriginal families can be assisted by discrete services within the same system rather than experience interconnected services. --- External linking is reliant on individuals Referral pathways between external services were reported as largely reliant on individual knowledge and connections. For example, women were not informed by mainstream services of Aboriginal specific services and Midwives were unsure of referral processes and services offered by other organisations. Referrals and transitions between services were often up to individuals and how they work, or not, with other services. Care was reported as being fragmented from the beginning. "The first 20 weeks. It's already fragmented, she's got three different types of care going on" . Some services were reluctant to let go of clients and refer on. "I think sometimes we just think, we're just going to hang onto this client now, and even sometimes down the track things sort of fester up and there are other issues around the families that we're like, oh, hell, we haven't got the services. So, it's linking the families and letting go, as well, to a service that is better suited for that family" . Rather than working collaboratively, they may see others as competition. "It's always been kind of them against us sort of, but we we're wanting the same outcome for the client" . This may be because services are concerned about their funding and jobs. --- "It's [organisation] become very protective and this surrounds people's roles from there. I don't know if it's attached to funding, or what the motivator is" . Processes for referral to interservice procedures are not well documented or known meaning that connection is often ad hoc. "They're informal links, there's no roadmap for that connection" . The process is reliant on individuals to proactively know and connect with other services. As a participant from FG 7 reflected "All of them [other agencies] have got different arms into homelessness, family supports, and I need to navigate that system to work out who would be the best" . Some families may need a little more support to encourage them to access other services. "Pathways exist for everybody, but sometimes some families do need a little bit more support in actually encouraging to access services that are quite scary for anybody" . Within the mainstream health service processes exist to support this and when there are enough staff this appears to work well. "We have an arrangement for those families who don't want to engage with us and have had bad experiences in the past, what's it called; a warm handover, which is joint visit" . --- Workforce issues limit continuity of care Professional scopes of practice limited what health workers can do. For example, Midwives provide care across the antenatal, intrapartum, and postnatal period. AMIC workers reported antenatal contact but being unable to support women during the intrapartum period. In another example, ACCFSCs working in CaFHS identified that they could take a more active clinical role for Aboriginal families during visits. "The ACCFSCs should be the primary carer; they should be the lead. But it's not, it's Nurse led" . The current workforce has insufficient Aboriginal workers. "We've got one Aboriginal cultural consultant, one. It's way too few to actually give them [recipients of care] the care that they need culturally" . This means that non-Aboriginal Nurses often visit Aboriginal families unaccompanied by an Aboriginal worker. A CAFHS Nurse stated "I haven't done many [visits] with an ACCFSCs because there hasn't been the availability of ACCFSCs … I would have liked the ACC because I don't feel that I can provide them with a smidgeon of what they could be" . At times this workforce crisis meant that ACCFSCs were placed in the awkward position of representing a family that they did not know during urgent case reviews. In these situations, they felt the representation tokenistic as they could not effectively undertake this role. Although many individual workers were supportive of continuity of care in principle and tried to enable this through their approaches to care, the services they were able to offer made this difficult. "We are trying with what resources we've got to offer …a good service but it's not the best service, it's the best we can do with what we've got at the moment" . For example, continuity was more difficult when families did not attend appointments. "It's difficult to provide services because they may just not turn up for whatever reason. There are lots of complexities in everybody's lives" . Families "might engage for a short time but then they would go walkabout. They would literally go… You couldn't get hold of them; you couldn't find them" . --- Main theme 2 Culture is not central in approaches to care --- Services and approaches to care Effective approaches to care need to be family and community centred [47]. From a policy and service perspective, mainstream health professionals are guided by a person-centred approach to care. "It's very individualised to what each woman needs to help her succeed and have good antenatal care" . Yet Aboriginal culture is community centred. Participants questioned whether, from an Aboriginal perspective, the personcentred model of care is appropriate. Whereas Aboriginal community-controlled services are run with Aboriginal contexts in mind, mainstream services were seeking to accommodate Aboriginal families but not being set up with their values in mind. Thus, with this mismatch, approaches to care can vary. Although there is individualised care and support, this relies on workers being proactive. When care is Aboriginal led there is some continuity. In the perinatal space an AMIC worker explained "We're the primary, so we're the consistent in our women's journeys and then whatever midwife is available will come in" . However, while care could be somewhat smooth, this could also lead to some duplication. "Sometimes it's the AMIC worker who has the relationship with the family. So, it's doubling up, we [the Midwives] need to find out what the AMIC worker is doing" . This may also be related to a 'them and us' attitude between health professionals with different levels of qualifications. "We still find that the hierarchy in health is quite a barrier. That notion that the professional knows best is a significant barrier" . Respect and trust need to underpin care . The values underpinning individual health professionals' care of Aboriginal families largely support continuity of care. These include acknowledging Aboriginal ways of knowing and being, respecting individuality and choice, and developing trust. Aboriginal ways of knowing and being were acknowledged and prioritised by non-Aboriginal health professionals working with Aboriginal families and colleagues. --- "We have to work alongside our different cultures, but it needs to be driven by them" . Similarly, "I think co-working, about respectful relationships and understanding the importance of the role of Aboriginal [health workers]" . Respect for choice was valued. For example, recognising that some families may prefer to use more Aboriginal specific services than others. "Sometimes the hurt and the past and the history is too deep to want to actually engage with us" . Alternatively, recognising there are families that do not want any support. "In the big picture too is that some families don't want anything. All they want is just to get on with their business, and they don't want anybody to be around" . Problematically, non-Aboriginal health professionals' perceptions of continuity of care may not be what families need. "Our perception of continuity of care might not be what that family chooses to think of as needing. It's a partnership that we need to have with them" . Trust was a value shared by health professionals and they actively sought to develop this with families. However, Aboriginal families may not trust health care workers if they know too much about them beforehand and do not take time to get to know them. Different workers from the same organisation visiting families does not develop trust. Trust takes time to develop at the community and personal level. "The community do get to know staff, it's a lot of trust, and that's invaluable when working with families who have got a lot going on" . It was reported that the CaFHS system is more focused on paperwork than people which impacted on the development of trust. "An important role is for us to bring these clients in to clinic, and that's their first contact and they can develop trust about coming to clinic and then they'll develop trust about taking their child to school. So necessarily keeping them with services in the home I don't think is always in their best interest" . Once a family trusts a service, they promote by telling others. "It'll take a while, but the word will get out there eventually, the word gets out there. " . --- The importance of relationships There was consensus among health professionals that developing respectful personal relationships with families is important and overarches continuity of care. "The rapport established with the Nurse, that determines a lot of whether the client continued to want to engage" . The level of family engagement with services may therefore depend on the individual skill sets of health professionals. It is somewhat easier for Aboriginal workers to interact with Aboriginal families. For example, they may have insights into the family. "The ACCF-SCs might really know the history of the family quite well" . Non-Aboriginal professionals working in mainstream services desired to build relationships with Aboriginal clients, but this did not always happen. "They're [CaFHS] very nosey and not always, they don't always build rapport before they start asking questions" . This posed a dilemma regarding how to make these relationships happen when what works for some families does not work for others. Furthermore, a 'tick the box' approach to care was seen as depersonalising and tokenistic. "There's never any time for that rapport building. You try and leave it in there throughout your visit, but you also have forms that you have to complete and health checks you need to be doing" . Some services for Aboriginal families are provided by a mainstream professional working in conjunction with Aboriginal counterparts. In these circumstances, it was questioned who decides and who does what. When working in a team, delineation and relationships between colleagues are important. "It depends on who the ACCF-SCs is and your relationship with them" . Interservice procedures are not always well documented or known, therefore linkages fall back onto individuals and individual relationships. When these relationships are not present interservice referrals collapse and decisions are reliant on individual health worker preferences. Relationships to community are important to Aboriginal families. Non-Aboriginal workers often lacked connections to community yet realised these connections may not be appropriate. One Nurse said "We don't often see Aboriginal clients in our Getting to Know Your Baby groups. And that's a shame", whilst another said, "It would be nice if they actually had Aboriginal families together [with an Aboriginal worker]" . Ideally, relationships with services would begin before there was a need for families to use them. "It's especially important with our cultural groups, if they get to know you before they actually need your service" . Perceptions of services are important. For example, families may be unclear about the role of workers. "It took a long time for them to warm to us I suppose because they thought we were on the side of welfare" . --- Main theme 3 "We've got to be allowed to do it in a different way" The system is racist Facilitators to cultural safety for Aboriginal families woven into mainstream services included the employment of some Aboriginal staff, asking the family if they would like an Aboriginal worker or service to be involved, actively seeking understanding of the family's cultural genogram and kinship ties, and providing non-Aboriginal staff with cultural awareness training. Nurses asked the family about who was important to baby. "We've got an 'our families, our support' form. So, it says who lived in your house and who are the people that are important to baby rather than who's your family, because they might not talk to any of them" . Whilst in place at policy level, the above recommendations were not always enacted in culturally safe ways. It was pointed out that culturally safe organisations worked with community appointed Aboriginal consultants, provided equitable services, had living, and working cultural safety documents and promoted interagency liaison with the Aboriginal community. Use of a deficit model was evident when attributing care for Aboriginal families "The thing is because we're looking after Aboriginal families, not every family is high risk so it's an assumption, like, there's assumptions embedded in there. That's your institutional racism" . Further, culturally safe practices were not always evident. There were reports of cultural safety for Aboriginal families being compromised for example when non-Aboriginal staff were called upon to backfill Aboriginal workers due to staff shortages. Western ways of working took priority as discussed in FG 3: "We're still governed by a hospital and the hospital is a business and it's a white business …a Western business. We [Aboriginal people] like to do things differently" . Furthermore, non-Aboriginal health professionals identified needing additional support to be able to provide cultural care and at times appeared unwilling to share power. "If it's continuity of care around Aboriginal families with the mainstream health then we need Aboriginal people to be walking alongside us" . While this appears helpful, with an Aboriginal family the call would be for the mainstream service to be walking alongside the Aboriginal families. Such experiences lead to organisations having a poor reputation amongst community. "There's a lot of women in community that don't like CaFHS because CaFHS are quite invasive when they go into the homes" . Culturally safe care was compromised when delivered by Nurses who identified as not being knowledgeable of Aboriginal ways. For example, a child and family health Nurse in FG 4 said, "I hadn't taken out the specific Aboriginal support information. --- And… I don't feel comfortable to [work with Aboriginal clients] because I'm not really versed in what exactly Aboriginal groups are" . FG 1 stated outright that amongst non-Aboriginal Nurses "there is still racism among some" . On the other hand, some non-Aboriginal Nurses were acutely aware of being from a white European female background and identified the impact this could have when working with Aboriginal families. "I'm a white European woman walking into their… culture, I don't fit in that culture, there needs to be more [training]" . Participants spoke of professional development learning opportunities such as cultural training, and policies related to cultural safety. They also spoke of Aboriginal Cultural Child and Family Support Consultants being engaged to work with leadership. This was all seen as insufficient. "It's not enough just to give us the cultural training, we need them [AMIC workers and ACCFSCs] as colleagues" . A non-Aboriginal Nurse suggested that cultural awareness training be Aboriginal led. "It's up to the Aboriginal staff to say, this is what we think that you need to know, that you need to understand so that you are respecting and honouring and working the right way" . Workplaces are not always experienced as culturally safe for Aboriginal workers, with experiences of conflict of interest and disrespect. A participant in FG 6 explained that "sometimes there's also a conflict of interest for Aboriginal workers in the community … And so that stress, they take that stress home because they know that person and know they're seeing it professionally and then, so it overlaps and that's a very big problem" . This is exacerbated by the ongoing lack of Aboriginal staff. Further the involvement of Aboriginal consultants was not well respected and their presence tokenistic. "ACCFSCs would benefit from … being more respected and having a voice and doing it all and not sitting there just as…[someone] who just comes along because the family's black. They need to have more of an active role" . --- Call for decolonising the system The system influences all aspects of continuity of care including approaches to and provision of heath care, values, and relationships. Yet the system is not what health professionals want it to be for Aboriginal families. "We've got to be allowed to do it in a different way" . They resoundingly argued for a system that focuses on values with "cultural safety at the centre" . A whole system change was suggested to overcome hierarchical and political barriers to integrating services. "The problem with what we've got at the moment is it's still sitting within mainstream and it's still influenced, I won't use the word dictated, but it's still influenced…and it's controlled by things that are outside our control as Aboriginal people" . Similarly, "It's almost sometimes like a them-and-us kind of… We're not, we're all together but it just doesn't communicate like that" . Mainstream systems were not provided in an "Aboriginal way". Continuity of care is impacted when services do not work well together or support each other. While there are informal links between Aboriginal and non-Aboriginal services, often these are not formalised. "It needs to be formalised, it needs to be a procedure, yes, and it needs… People need to be trained … whose services are involved? Ring those services and bring us together and work with us, not just this ad hoc ringing and ad hoc emailing, that's how families fall through the gaps" . Formalising these relationships and links requires mainstream services to recognise the value and place of Aboriginal health services for families, rather than seeing them as an add on to mainstream service. In addition, Aboriginal and non-Aboriginal services were reported to not communicate well. "We don't communicate, and we're doing a lot of the same stuff " . An Aboriginal worker not attending a prearranged visit with a non-Aboriginal worker is another example of this. "I found it really frustrating because one the worker wasn't there, two, the worker can't really tell me what support she has or hasn't got. So, I don't actually know what supports I should be trying to put into place" . The links that Aboriginal services have with child protection services are also problematic. "Certainly, with child protection it's so important that we work together with the Aboriginal Cultural Child and Family Support Consultants too. There's in the past there's been issues with that, I think. Often, they're inaccessible like they're off sick or whatever. There's no good support for us when we're worried about a child's safety" . Without strong interservice relationships service continuity collapses. --- Ways forward There were many suggestions for a 'utopian' or ideal model of care which was Aboriginal led, valued Aboriginal ways of knowing and being, and designed with continuity of care and constant follow up principles in mind. "To be gold standard I think it does need to be Aboriginal led, Aboriginal designed, Aboriginal staff " . Furthermore, "A gold standard to me, which we don't have enough of, is if we had Aboriginal practitioners that actually did the work" . Such a service would be promoted before pregnancy and take time to build rapport with families. "It's especially important with our cultural groups, if they get to know you before they actually need your service" . The service would be accessible and safe, with clinics and outreach available. Roles within existing services may be revised to accommodate this. "I think Child and Family Health maybe need to look at the Aboriginal Health Practitioner role and how they can specialise and tailor it towards the Child and Family Health work that they do" . Overall, practical suggestions for professional development included avenues for exchange opportunities to work remotely and receiving cultural training led by Aboriginal staff. The participants called for a whole of systems change, especially systems and pathway designs that supports service engagement, such as working in a preventative manner with an antenatal start. The health professionals highlighted a practical application that embed past learnings, allow for flexibility. Many commented that roles need focus and that the system needs more ACCFSCs, AMIC workers and Aboriginal Nurses and Midwives. Ultimately connecting to community and other services was seen as key to success in working with and providing continuity of care for Aboriginal families in mainstream health. --- Discussion This study explored how continuity of care in the first 1000 days was perceived by AMIC workers, ACCFSCs, CaFHNs, and Midwives working in mainstream health services in South Australia. The three key themes emerging from the data were the system takes priority, culture is not central in approaches to care, and 'we've got to be allowed to do it in a different way' . We were told of a mainstream health care system where continuity of care for Aboriginal families across the first 1000 days is delivered inconsistently and often in culturally unsafe ways. Inconsistency and limitations were reported by health professionals to be the result of differing internal services received by Aboriginal families, challenging relationships between internal service divisions, a workforce who have differing capacity to deliver care in culturally safe ways, a wide range of approaches to care delivery, and ultimately inconsistency in relationships between care providers and recipients of care. Canadian research from other Indigenous population groups have found that targeted, low-barrier bridging services to engage interdisciplinary interventions can promote continuity of care by offering timely and responsive service provision, including timely connection to long-term services and supports, appropriate individualised services and effective co-ordination of services [48]. Leaving families with complex support needs to be their own health navigators journeying through the multitude of services available is currently not working for Aboriginal families in metropolitan and segmented health care systems. There is no consensus on navigation roles and models in primary care. This study shows that health care staff perceive that Aboriginal families experience fragmentation and gaps in service delivery. Perhaps innovation and systems navigation provided by individuals or teams is a solution to overcome the barriers, as suggested by research from the US identifying health navigation as an emerging strategy to reduce barriers to care [49]. On an individual level some health workers described trying to develop relationships that facilitated culturally safe care with Aboriginal infants and their families. They told of being thwarted by required approaches to care, the limitations of cultural capability of some care providers, and limitations on the relationships and communication systems within and between internal service divisions. Overall, where culturally safe practice was attempted, it was often not supported by the system. Culturally safe practice appeared as an appendix to mainstream care, rather than an embedded and valued approach to care. The system did not appear to change to become more culturally safe, it merely shifted slightly to accommodate difference, rather than embracing and embedding Aboriginal ways of knowing and being. For example, the Aboriginal Family Birthing Program is an award-winning program within mainstream health services, providing culturally safe care to birthing women and their families [50]. Despite this, health workers report that families are challenged to move between this program and Aboriginal Community Controlled Services and often experience culturally unsafe care and racism when they are required to shift across to main-stream services. The system was reported as one that was disjointed within mainstream and between external services across the first 1000 days. This disjuncture represents a core of system racism. Manifestation of systemic racism is an inequitable system of practices and structure that contributes to exclusion, is rooted in past and ongoing colonisation of which health care systems are a part of with biased behaviour, inequitable practices, and in which racist attitudes and comments are sometimes tolerated [51,52]. This is supported by other research finding racism a serious ethical issue across health sectors [53]. Racism is present in society's systems and ingrained in social structures and institutions [54]. Henricks [54] identifies that prejudice, bias and poor attitudes are some aspects of racism, but that pervasive institutional racism occurs regardless of individuals' or groups' good intentions. Racism is a significant social predictor of health, and numerous studies shows evidence of racial attitudes, feelings, or actions among healthcare workers, both implicit and explicit [55,56], resulting in "lower levels of healthcarerelated trust, contentment, and communication" in the healthcare system . Minority health outcomes are worsened by the combination of poor health care services and underutilisation of healthcare [58]. Health care system deciders must understand that cultural safety in a system is built through time, not only in a one-time "check box" session. It requires gradual, inclusive, comprehensive, and systematic change. Main-stream health care systems are large and have limited capacity to be nimble. Despite this, it is not acceptable for cultural care to be relegated to the periphery, with culturally safe practice as an appended tick box activity. We suggest turning the tables so that culture is centralised across systems, services, and service provision. The current drivers of care do little to centralise cultural care. For example, current discourses of care include patient centred and family centred care [59]. This approach is not appropriate for Aboriginal families because a care model needs to include community. Individuals and families are intrinsically part of community and culture [60]; we need to implement culture centred care, similar to the Aotearoa model that centralises Māori culture in care [61]. Aboriginal and Torres Strait Islander ways of knowing and being, need to be at the middle of the system rather than at the periphery. Placing culture at the centre will support all peoples in the 'mainstream' not only Aboriginal and Torres Strait Islander peoples, as it speaks to the importance of values-based care. Participants spoke of the need to approach care from a position of values, specifically trust. Fear and distrust of mainstream health services due to historic colonisation is real. Health care systems that do not understand the legacy of colonisation may seem surprised that families will not return to use their services but should not be surprised. Trust requires mutual respect. Systemic and individual racism is an indicator of the absence of respect. Both of these were identified and described by health care workers. Without trust nothing will change. Using the cultural safety principles as a guide, during the whole process we asked participants to reflect on their practice and provision of culturally safe care across the continuum and to consider their interactions with Aboriginal clients for and with whom they cared. We then looked at where power differentials existed. Although many health care professionals felt powerless in the system, some participants focused on minimising power differentials by focusing on the developments of relationships in spite of system pressures. This is enactment of cultural safety principles, such as reflecting on your own practice, minimising power differentials between yourself and clients, engaging in conversations with clients, treating people regardful of their cultural or individual differences, and undertaking a process of decolonisation . Can we see a process of decolonisation in data in this research? The only place decolonisation is seen is at individual level where health care professionals are working around the edges providing culturally safe care and prioritising building relationships. Certainly, the system is not providing decolonisation of services or health care-however a system who prioritise relationships enable culturally safe continuity of care. Provision of culturally safe care must be taken seriously by services and systems-not just as something health workers have to tick off when attending an annual workshop. Aboriginal staff could work with non-Aboriginal health care staff to help them develop insights into practices and realise the impact of own practices. Additionally, health workers must develop insights into the systems and structures within which they work and not just focus one's own patch. Health workers have limited capacity to make change on a system level, but can act as change agents from within, and at the margins, albeit not at the top. --- Strengths and limitations Strengths of this research is the broad engagement with both Aboriginal and non-Aboriginal health care professionals as experts in service provision to Aboriginal families to identify and implement patient and culturecentred strategies to improve access and acceptability of care. Their perspectives for family care are particularly important when working with other than majority populations. Despite the strengths, there were some limitations in this study. Most health care professionals who participated worked in an urban area; therefore, the perspectives of staff working in regional or remote areas were not identified. Every Aboriginal community is unique, the perspectives shared are not intended to be representative or applicable to all communities or health care settings working with Aboriginal families in Australia or otherwise. --- Implications for health policy and systems • Cultural safety must be taken seriously by health systems and services-not just ticking a box when attended a workshop on • Health workers need to develop insights into own practice and the impact of own practice • Health workers must develop insights into the systems and structures within which one works and not just focus on one's own patch • Recommendations for improved culturally safe practice across the continuum and improved models of care --- Conclusion This research highlights a lack of continuity of care for Aboriginal families accessing mainstream health services from the antenatal period through to an infants' first 1000 days of life. This research has implications for communities, and it calls for strategies to enhance continuity, and healthcare services to provide appropriate and culturally safe care. The participants in this study called for a mainstream health care system with cultural safety principles embedded at the core, rather than appearing as an appendix and an afterthought. Adding cultural bits and pieces to models of care does not make a culturally safe system that invites Aboriginal families into a partnership. What we have is a system that overarches individual relationships and services, but participants want Aboriginal community and family values to form the system not the opposite way around. This research explored workforce perspectives of culturally safe care experiences and satisfaction with care provided to Aboriginal women and their infants in mainstream health. The findings will inform and guide future changes to improve continuity of care for Aboriginal families and workforce in health policy, systems and services, and to inform culturally safe care that meets best practice, and enables families' access to mainstream health services. Findings will inform and guide future changes to improve continuity of care for Aboriginal families and infants in the first 1000 days. --- --- Abbreviations --- --- Additional file 1. Interview guide. Author contributions NS, JG and JD made substantial contributions to conception, design, and analysis. NS, JG and CG contributed towards acquisition of literature, analysis and interpretation of data, and the writing of the manuscript. All authors reviewed, read and approved the final version of the manuscript. --- --- --- Competing interests The authors declare that they have no competing interests. ---

Background: Aboriginal women and their infants experience significant disadvantage in health outcomes compared to their non-Aboriginal counterparts. Access to timely, effective, and appropriate maternal and child health care can contribute to reducing these existing health disparities. This research sought to explore factors that contribute to continuity of care for Aboriginal women and their infants living in metropolitan South Australia. This paper reports on the perspectives of health care workers in mainstream health services from the antenatal period to the end of an infants' second birthday. It explores health workers' perspectives of what contributes to positive care experiences and satisfaction with care provided to Aboriginal women and their infants in mainstream health. Methods: Eight focus groups were held with 52 health professionals. Participants included Aboriginal Cultural Child and Family Support Consultants (n = 7), Aboriginal Maternal Infant Care Workers (n = 3), Midwives (n = 3) and Child and Family Nurses (n = 39). Data was inductively coded and thematically analysed.Three key themes emerged: the system takes priority, culture is not central in approaches to care, and 'we've got to be allowed to do it in a different way' . Conclusions: This research highlights a lack of continuity of care for Aboriginal families accessing mainstream health services from the antenatal period through to an infants' first 1000 days of life. This research has implications for communities, and it calls for strategies to enhance continuity, and healthcare services to provide appropriate and culturally safe care. Findings will inform and guide future changes to improve continuity of care for Aboriginal families and infants in the first 1000 days.

Background Histopathological grading of oral epithelial dysplasia is predictive for oral potentially malignant disorders [1]. The proportion of OED associated with malignant transformation is approximately 2.2-38.1% [2,3]. The histopathological manifestation of oral potentially malignant disorders may be revealed as hyperkeratosis or hyperplasia, to various degrees of dysplasia, categorised as mild, moderate, and high grade Open Access *Correspondence: [email protected] † Sheng-Tang Wu and Yuan-Wu Chen have contributed equally to this work 1 Division of Oral and Maxillofacial Surgery, Tri-Service General Hospital, No. 325, Cheng-Kung Rd., Sec. 2, Neihu District, Taipei City 11490, Taiwan, ROC Full list of author information is available at the end of the article according to the severity of cell atypia and epithelial involvement [4]. Therefore, the precision of conventional oral examination and early diagnosis of OED is crucial for preventing malignant transformation [5]. COE for oral mucosa screening aims to reduce mortality in malignancy and guide preventive interventions for high-risk groups [6]; thus, the definitive diagnosis is crucial. Warnakulasuriya et al. had proposed the term OPMDs and recently updated it as "any oral mucosal abnormality that is associated with a statistically increased risk of developing oral cancer. " This classification of disorders previously included leukoplakia, proliferative verrucous leukoplakia, erythroplakia, submucosal fibrosis, palatal lesions in reverse smokers, oral lichen planus, acinic keratosis, oral lupus erythematosus, and dyskeratosis congenita. Recently, oral lichenoid lesion and oral graft vs. host disease were added, and oral epidermolysis bullosa was removed from the classification due to limited evidence [7,8]. The major risk factors for OED in patients with OPMDs vary across geographical regions. In Southeast Asia, two well-established risk factors are recognised: betel quid chewing and tobacco smoking [9,10]. In Taiwan, tobacco smoking and betel quid chewing have been shown to increase the risk of leukoplakia and malignant transformation of OED [11,12]. Nevertheless, the association between socioeconomic status and the development of malignancy involves poor health education, unfavourable working environments, and many others, which all contribute to malignancy development by complex interactions in society; most importantly, risk behaviours are often seen in the low socioeconomic status groups [13]. In the Asia region, these risk behaviours are notoriously known as betel chewing and smoking; therefore, these serious issues have been designed into effective health policy programmes for the high-risk group, implemented in several countries [14]. COE is a relatively easy procedure used to identify oral lesions [15]. The Taiwanese government has supported oral screening programs for many years [16], and the Taiwanese Nationwide Oral Mucosal Screening Program is principally developed and documented in a specific survey [17]. This survey gathers specific background information and para-habits of high-risk individuals. However, a more conclusive diagnosis can be obtained from a specialist after referral from primary health providers such as general dentists or family medicine physicians. By definition, in the referral programme, a specialist such as an oral and maxillofacial surgeon or otorhinolaryngology surgeon, who can provide treatment, is required to perform the needed biopsy. Additionally, a pathologist is required to confirm and document the OED stage from the biopsy; and, according to the current recommendation, a follow-up system for recall and monitoring in high-risk individuals with OPMD and OED should be arranged for effective management [1]. In this retrospective study, we analysed a group of participants documented in the TNOMSP and investigated the association between the socioeconomic status and severity of OED. --- Methods A retrospective analysis was conducted in the Department of Oral and Maxillofacial Surgery at a general hospital in Taipei, Taiwan, to investigate the association between the socioeconomic status and severity of OED using current data from the TNOMSP. The data were collected within 12 months, from January 1st to December 31st, 2018. A total of 134 participants were analysed from a previous study database of 150 patients; 10 patients were excluded due to their refusal to participate, and 6 patients were excluded as the study design was limited to Han Chinese only. The study was conducted in the Department of Oral and Maxillofacial Surgery at the Tri-service General Hospital of National Defense Medical Center , Taipei, Taiwan. This was a pseudo-anonymised secondary data study; hence, there was no direct patient or public involvement. The study was approved by the institutional review board of TSGH . The current study was reported in conformance with the STROBE guidelines. --- Inclusion and exclusion criteria --- Clinical examination procedure and TNOMSP The participants were recruited from a previous study involving TNOMSP, developed by the Health Promotion Administration of the Ministry of Health and Welfare and commonly used for oral cancer and OPMD screening in Taiwan. The TNOMSP collects the following background information: name, sex, contact information, age, race, inhabited area, education, history of betel nut and tobacco use, and self-awareness. Personally identifiable information, such as name and contact information, was substituted with numbers. A clinical diagnosis of either OPMDs, suspected oral cancer, or others was obtained from a certified clinical specialist , who also recorded the lesion sites . The OPMDs evaluated in the TNOMSP included non-homogenous leukoplakia, homogenous thick leukoplakia, leukoplakia, erythroplakia, erythroleukoplakia, verrucous hyperplasia, submucosal fibrosis, lichen planus, suspected oral cancer, and others. A clinical specialist performed oral lesion biopsy followed by a pathological diagnosis as mild-, moderate-, or severe dysplasia, oral cancer, or others. Finally, various interventions or follow-up visits were recommended for patients with mild dysplasia, and those with moderate and severe dysplasia were indicated for surgical interventions. Several other clinical decisions were made according to the provided guidelines in the institution conducting the study . --- Histopathological data The study participants agreed to participate and signed a standard informed consent form before biopsy was performed at TSGH. Each sample biopsy underwent histopathological examination by a pathologist. The presence of dysplasia was graded using the World Health Organization three-tier system of mild, moderate, and severe dysplasia, oral cancer, or other diagnoses in the biopsy specimen. This was recorded in a report from the pathology department at TSGH, approved stepwise by two pathologists, if dispute the third pathologist for confirmation; the microscopic pictures were randomly selected and presented in our joint departmental meetings. --- Statistical analysis All statistical analyses were performed using SPSS version 22.0.0. . The responses were coded as numeric to facilitate data entry. The results were analysed using a bar chart for clinical diagnosis of OPMDs, suspected oral cancer, other diseases, and lesion sites. The Pearson chi-square test, and odds ratios and 95% confidence intervals were computed to determine any association between the participants' characteristics and OED, which categorised the histopathologic reports into two groups mild or moderate and severe dysplasia after oral cancer and others diseases were excluded with the level of significance set as two-tailed P < 0.05. --- Results --- Participants' demographics A total of 134 participants out of 150 individuals in the original TNOMSP were collected in the present study . Regarding para-habits, 36.6% of the participants were current betel users, while 53.8% were current smokers. --- Dysplasia in histopathological examinations The histopathological diagnosis of dysplasia according to the socioeconomic characteristics is shown in Table 1. Of the 134 participants, 70 were histopathologically diagnosed with dysplasia, 58 were diagnosed with others, which were more likely to be benign, and 6 were diagnosed as oral cancer . The mean age of participants diagnosed with oral cancer was higher than that of both those with dysplasia and others . In addition, men were predominant in all three groups diagnosed with oral cancer, dysplasia, and others . The proportion of patients with education status of senior high school or above was more in both the groups diagnosed with dysplasia and others , but it was evenly distributed with those of lower education status in the oral cancer group. The proportion of participants living in the capital and out of it was evenly distributed among patients diagnosed with dysplasia and others; in the oral cancer group, the majority lived outside the capital. Regarding self-awareness, 90% of participants with dysplasia and 87.9% of those diagnosed as others were unaware of the lesion; but all oral cancer participants were aware of the lesion. For the para-habits, more participants diagnosed as others were never or ex-users for betel and tobacco , and more participants diagnosed with dysplasia were current users of betel and tobacco . --- Distribution of OPMDs and lesion sites The results of COE are listed in Fig. 3. Among the 134 subjects, the predominant diagnosis was others, which was likely to be benign, and among all OPMDs, erythroleukoplakia was the most common ( --- Association between severity of dysplasia and socioeconomic status Results of the correlation between dysplasia and socioeconomic status are presented in Table 2. We noted a significant correlation between junior high school educational status and moderate/severe dysplasia . Furthermore, lack of awareness was significantly associated with mild and moderate/severe dysplasia . Regarding para-habits, current betel and tobacco use were strongly correlated with moderate/ severe dysplasia. --- ORs of the association between severity of dysplasia and socioeconomic status Junior high school educational status had a high OR of 1, while senior high school or above educational status had an OR of 0.03 . The current betel users had a high OR of 6.57 . --- Discussion Several studies have demonstrated that socioeconomic status influences the development of OPMDs and OED, and the higher the socioeconomic status, the lower the risk of these conditions [13,[18][19][20][21][22]. A large population survey conducted in Taiwan showed a strong correlation between low education status and betel nut use habits, which may be explained by the labouring work in Taiwan with a cultural tradition of betel nut chewing. Moreover, the Taiwan study revealed that 25% of individuals with junior high school status were current betel chewers [23,24]. This finding is similar to our result of overall dysplasia as we also showed that junior high school education status and current betel chewing were associated with a high risk of OED. Another study in Taiwan reported a 16.5% prevalence of OED among betel quid chewers [25]. Additionally, a hospital-based study revealed an OR of 8.5 for the development of oral malignancy among current betel quid chewers with low education status [11]. Moreover, another study in Taiwan revealed an OR of 1.27 for the development of OED among current betel chewers compared with non-chewers [26]. Furthermore, a case-control study reported an adjusted OR of 17.43 for the occurrence of leukoplakia due to betel nut chewing and smoking [12]. The above studies raised concerns about the increasing risk of malignant transformation in current betel chewers. Our present study also showed a high risk of developing moderate/severe dysplasia among those in the high-risk group . Initiated in 1985, TNOMSP gradually scaled up to the national level and targeted the high-risk group [16]. High-risk individuals may be defined as tobacco users and betel chewers [27][28][29]. Approximately 90% of mortality resulting from oral malignancy in Southeast Asia occurs among individuals with para-habits, underscoring the need for efficient resource allocation to the high-risk group [30]. Moreover, oral cancer is one of the leading causes of death in adolescent males in Taiwan, with the overall 5-year survival rates for I-IV stages of oral cancer reducing from 70 to 10% [31]. Therefore, early prevention Most OPMDs are asymptomatic and rarely noticed by the patients, which is also evident in our present study as 85.1% of the participants were unaware of the lesion. The global prevalence of OPMDs is approximately 4.47% and is considered to be higher among Asian males [32]. Male predominance was also observed in our study. OPMDs mainly occur on the buccal mucosa, gingiva, tongue, and floor of the mouth [33][34][35]. Similar findings were reported in this study, with a majority of the lesions occurring on the buccal mucosa, followed by mandibular gingiva and tongue. Our study findings are also comparable to those of a recent large population-based study conducted in southern Taiwan [34]. Regarding the type of OPMDs in our study, erythroleukoplakia was the most common, followed by thin homogeneous leukoplakia . When all types of leukoplakia, including non-homogeneous, thick, and thin homogenous leukoplakia, were included in the same group, the prevalence was 24.6%, and this finding is comparable to that of another large population study conducted in Taiwan [35]. Histopathological diagnosis is necessary for clinical grading of pathologic changes in OED and aids decisionmaking in managing lesions. According to the WHO guidelines, the standard grading system of OED is mild, moderate, and severe [36]. A recent meta-analysis evaluated the malignant transformation rate of mild vs. moderate/severe oral dysplasia. A total of 92 papers were selected and included in the final analysis; the mean follow-up ranged from 12 months to 20 years. Among them, 10 studies differentiated clearly between mild, moderate, and severe dysplasia. In summary, when comparing the risk of malignancy development with OED in moderate/ severe dysplasia vs. mild OED, there was a greater risk for malignant transformation in moderate/severe dysplasia, with OR of 2.4 . Further, mild dysplasia had an annual malignant transformation rate of 1.7%, while severe dysplasia was 3.57%, which were both statistically significant [37]. However, some have proposed a binary grading system and encouraged following pathological research [8,38]. A recent smaller scale meta-analysis included 629 lesions from four different studies and yielded a sixtime increased odds of malignant transformation in high-risk lesions over low-risk lesions OR of 6.14 [39]. In our present study, we categorised our cases into mild or moderate/severe dysplasia based on our current practices. Individuals with moderate/ severe dysplasia undergo surgical excision of the lesions. The underlying reason for surgical excision is the necessity of further sampling, which can investigate the adjacent possible occult malignancy [1]. For mild dysplasia, a follow-up system is recommended, and the patient can undergo less invasive interventions, including cryotherapy, chemoprevention, and photodynamic therapy, which have shown promising results in preventing the malignant transformation of OED [40,41]. Furthermore, OED has a significant malignant transformation rate. Although several studies we have mentioned suggested surgical excision for proper management of moderate/ severe dysplasia, the long-term follow-up period should be less than every 6 months, repeated biopsy should be considered, and the absence of OED in clinical OPMDs diagnosis should not exclude the malignant potential [1,8,15,37,38]. Finally, even though some OPMDs with or without OED resolve spontaneously over time, the question remains whether the risk of transformation exists in OPMDs and OED after spontaneous resolution or surgical intervention, with or without para-habit cessation [42][43][44]. However, this study had several limitations. First, TNOMSP focuses on high-risk individuals aged > 20 years; thus, underage individuals with parahabits need further investigation. Second, the principle design of TNOMSP excludes the general population with OPMDs. Third, our study was conducted under a retrospective study setting and, our result was obtained from a limited diagnosis setting; a different judgement is hard to include in the study. Therefore, a large-scale investigation and comparison of individuals with para-habits and the general population should be considered with multiple specialties, and long term follow up with repeat biopsy may be consider in future research. --- Conclusions In our study, we reported a high correlation between severe dysplasia and low education status, and current betel use. The socioeconomic status, poor self-awareness, and para-habits history of the patients with OED should be evaluated to identify high-risk individuals. This retrospective study lays the foundation for further investigation of the socioeconomic status and para-habits associated with OED in different regions across Taiwan with a larger population, as well as the evaluation of the efficacy of TNOMSP. • 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 biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? Choose BMC and benefit from: ? Choose BMC and benefit from: --- --- Abbreviations Authors' contributions TEC contributed to conception and design, data analyses, and interpretation, and drafted the manuscript. YCL contributed to histopathology interpretation. CTW contributed to data acquisition, critically revised the manuscript, and gave final approval. STW critically revised the manuscript and gave final approval. YWC critically revised the manuscript and gave final approval. All authors have read and approved the manuscript. --- --- --- Competing interests The authors declare that they have no competing interests. ---

The study aimed to investigate the association between socioeconomic status and severity of oral epithelial dysplasia (OED) using current data from the Taiwanese Nationwide Oral Mucosal Screening Program (TNOMSP). Methods: This retrospective analysis was conducted in the Department of Oral and Maxillofacial Surgery at a general hospital in Taipei, Taiwan. A total of 134 participants were analysed from a previous study database of 150 patients. The inclusion criteria included age > 20 years and a history of either tobacco or betel nut use. Background information, including para-habits such as betel and tobacco use, was analysed using the Pearson chi-square (χ 2 ) test; furthermore, the correlation of background information with OED severity was investigated using logistic regression (mild or moderate/severe). Results: High school education level (P < 0.001), poor self-awareness (P = 0.002), current betel use (P < 0.001), and tobacco use (P = 0.003) were highly correlated with moderate-and severe OED (P < 0.05). The odds ratio (OR) of education status above senior high school was 0.03 (95% confidence interval [CI] 0.01-0.15, P < 0.001), while that of junior high school was 1. Current betel chewing (OR 6.57 [95% CI 1.17-37.0], P = 0.033) was significantly associated with OED severity compared with never or ex-use of betel.We found a strong correlation between the severity of OED and current betel use and low education status. The current study revealed that the socioeconomic status, poor self-awareness, and para-habit history of the patients with OED should be evaluated to identify high-risk individuals using TNOMSP.

Background With significant financial and technical support being made available through The Global Fund to fight AIDS, Tuberculosis and Malaria and the AusAID Pacific Malaria Initiative, the Vanuatu and Solomon Islands governments are embarking on an ambitious long-term endeavour to eliminate malaria from their island nations. The successful elimination of malaria from Aneityum Island, Tafea Province, Vanuatu, in the mid-1990s has given hope that a coordinated and sustained effort to eliminate malaria in Vanuatu and Solomon Islands is achievable. The experience of eliminating malaria from Aneityum will be invaluable to eliminating malaria in Tafea province generally, but cannot necessarily provide a blueprint for the larger islands. Tanna for example, a larger island of Tafea with a current population of around 25,000 inhabitants [1], represents a much more complex social and environmental context than Aneityum, which had a population of 718 individuals in three principal community groupings when elimination was achieved [2,3]. A key component of the elimination strategy for Tafea Province is malaria prevention through universal coverage and year-round use of long-lasting insecticidal nets of which distribution commenced in 2008 . The previous distribution of conventional insecticide-treated bed nets in Tafea Province contributed to the incidence of malaria decreasing significantly and it is now at a comparatively low level. A schoolsbased parasitology survey conducted among 5,300 children aged 2-10 years by the Vector Borne Disease Control Program , Ministry of Health with support from the Pacific Malaria Initiative Support Centre in mid-2008 revealed an overall malaria prevalence on Tanna of 1.0% for Plasmodium falciparum and 2.2% for Plasmodium vivax [4]. Using Bayesian geostatistics, the predicted spatial distribution of malaria on Tanna has been mapped and found to be similar for P. vivax and P. falciparum malaria with a heterogeneous distribution and 'hotspot' foci in coastal areas in the north, south-east and around the capital Lenakel in the west [4]. One of the potential consequences of malaria having been reduced to such low levels and with remaining transmission occurring in defined foci is that it can be perceived as having a relatively low priority by health workers and communities, particularly in areas where the disease is rarely seen. This may cause prevention practices in Tafea Province to become abandoned, and coupled with intra-and inter-island population movement, may result in significant malaria resurgence [5]. Yaws on Tanna provides a notable example of the consequence of local-level neglect of a low prevalence disease. Yaws was one of the first diseases targeted for global eradication in the 1950s. Once a 95% global reduction of the disease occurred vertical programmes of many countries were dismantled and eradication activities for the 'last cases' were integrated into primary care systems. In Vanuatu, initial success reduced infection from 7.3% to 0.86%. However, yaws re-emerged on Tanna in the 1980s as a result of a lack of resources, isolation, community resistance and waning attention and commitment to eradication activities [6]. Despite a mass screening and treatment programme in 1989, which achieved 91% coverage, a survey in 2007 among adults and children reported the seroprevalence of yaws on Tanna to be 17% [7]. Important research has recently been carried out to better understand the local technical elements of malaria and its transmission in Tafea Province, to assist with planning for malaria elimination. This has included entomology, parasitology and serology surveys as well as malaria risk mapping of Tanna Island [4,8]. Technical elements such as these provide essential guidance to the elimination programme. Equally important is an understanding of local perceptions, priorities and social mechanisms that impact on health behaviours and can moderate the success of infectious disease control and elimination programmes [9]. The Aneityum experience highlights the importance of community participation in achieving and sustaining malaria elimination [3]. With disappearing disease and a more complex social and environmental context, obtaining and maintaining community enthusiasm and participation in strategies to eliminate malaria in the rest of Tafea Province will be significantly more challenging. Involving communities in strategy planning and implementation as well as engaging and supporting social networks in programme delivery will assist in building social capital that will be vital to maintaining community participation and motivation despite low levels of disease [10]. Previously reported barriers to bed net use have included side effects, fear of the insecticide and reduced circulation of air onto the sleeping person, while motivators have been fear of malaria and mosquito nuisance [11,12]. In the context of disappearing malaria, motivation to use LLINs may become increasingly dependent on the inconsistent variable of mosquito nuisance, which could jeopardize the malaria elimination programme. Malaria elimination in Tafea Province will require very high levels, if not complete, bed net coverage and use, therefore a detailed understanding of the factors that influence their use and acceptability is essential. This research was undertaken as part of an initial scoping mission to inform the community engagement and participation strategy and the development and dissemination of IEC materials in Tafea Province to support the malaria elimination programme. The results presented here relate to community perceptions and practices for malaria prevention ; influences on these practices including risk perception, key social actors and how malaria is contextualized within broader community health and disease priorities; and the most effective avenues for channelling health information on Tanna. An analysis of community understanding of malaria, its symptoms, causation and how these factors influence treatment-seeking behaviours will be described separately. --- Method --- Study area and target population This study was carried out on Tanna Island, Tafea Province in southern Vanuatu July to August 2009. Tanna Island consists of tropical forest, grassy plains, a 1,000metre high mountain range and a well-populated central plateau . There are five indigenous languages spoken on Tanna with the prominent language being Bislama. The socio-political landscape is hierarchically organized on the basis of sex and age. Although egalitarianism governs social interaction between adult men, village chiefs and church leaders enjoy substantially more influence and prestige [2]. The Tannese are primarily engaged in subsistence farming, producing staples such as taro and yams as well as a range of fruit and vegetables. They also plant cash crops such as coconuts and coffee. The average annual cash income is less than $550 AUD per family [2]. The division of labour between men and women on Tanna is somewhat muted. Although men do much of the heavy work, and women are primarily responsible for domestic duties, both sexes contribute to working in vegetable gardens, cooking and caring for children [2]. Joint British and French colonial rule in Vanuatu in the early 1900s resulted in conversion of two-thirds of the population of Tanna to Christianity of which there remains numerous active denominations. In reaction to foreign rule a number of social movements arose from the late 1930s, which encouraged a return to traditionalist or Kastom practices. The best known of these on Tanna is the John Frum movement that remains an important religious and political group today [2]. A prominent cultural feature of each hamlet is the Nakamal, which is a place primarily where men convene to drink kava but also a place where people meet to dance, exchange goods and resolve disputes. There are many hundreds of these Nakamals across Tanna [2]. The study areas were purposefully selected to capture the views of those living in high and low malaria transmission risk areas as identified in a parasitology survey carried out in Tanna in 2008 by the VBDCP, MoH [4]. In addition, these areas were selected to take into account potential differences in community attitudes and perceptions across the island. Therefore, study activities were carried out in North Tanna, Middle Bush and South Tanna. Specific villages within those areas were purposefully selected in consultation with local stakeholders in order to ensure a breadth and depth of insights. Field researchers with village leaders nominated men, women and youth for invitation to participate in the research activities . Village leaders also assisted in identifying key community informants to be approached for interview. --- Procedure For data triangulation a variety of qualitative and participatory tools were used in each of the three villages including Focus Group Discussions , Key Informant Interviews and informal observation . In addition, workshops were carried out using a number of participatory methods such as community mapping of malaria risk factors in each village as well as listing and ranking exercises to determine health and disease priorities and preferences for receiving health information. Separate FGDs and participatory workshops were carried out with men, women and youth groups in order to facilitate open, constructive dialogue. Transect walks were also carried out in each village in which researchers accompanied by community members observed and documented similarities and differences in bed net use between households. Two male and two female research officers were recruited locally to carry out this research and were supervised in the field by a researcher from the School of Population Health, University of Queensland . The field research team were provided training in conducting FGDs, participatory workshops, KIIs and transect walks as well as data management and research logistics by a collaborative team from SPH, UQ and Save the Children Australia which included an experienced social scientist. Semi-structured discussion guides were used to direct FGDs, KIIs and participatory workshop activities. Research activities were carried out primarily in Bislama and on occasion in the local area dialects. The two male field researchers were Tannese and were fluent in some of the local dialects. Where this was not the case, local facilitators were used to assist with translation. --- Data analysis Digital recordings of the FGDs and KIIs were taken and directly transcribed and translated from Bislama to English by the field research team. This data was triangulated with reports generated immediately following each participatory workshop, transect walk and with informal observations documented in the field journal. Data was coded around the main topics of the interview/workshop guides and entered into NVivo 8 software . The principal investigator subjected the data to thematic analysis, organising data into identifiable themes and patterns of behaviour [13]. Areas of consensus and divergence were identified and a 'realist method' was used to understand participants' realities, experiences and meanings. This approach has previously been reported to be appropriate for working within a participatory paradigm particularly where research findings are informing policy development [13]. --- Ethical aspects This research was approved by the Vanuatu Ethics Committee, Ministry of Health, Vanuatu and the Behavioural & Social Sciences Ethical Review Committee, University of Queensland, Australia. Volunteers were provided with a written participant information sheet. The purpose of the FGD/participatory workshop/KII was explained to them by a field officer. Participants were then asked to provide informed consent prior to commencing the research activity. All FGDs and KIIs were recorded using a digital tape recorder. Participants of the FGDs and participatory workshops were provided light refreshments in recognition of their valuable contribution to this research. For each FGD and participatory workshop basic demographic data of participants was recorded including age, education and religious affiliation. --- Results In total, nine FGDs, seven participatory workshops, 12 KIIs and three transect walks were carried out in three villages across Tanna. A field journal was kept of informal observations made by the supervising field researcher during the village stays. The number of participants in each FGD ranged from six to 13 and participatory workshops had between seven and 30 participants. Background noise rendered the Middle Bush primary caregiver FGD recording inaudible, however, information could be retrieved from comprehensive reports written by the research team following each FGD. Three additional FGDs and two participatory workshops were planned but were unable to be carried out due to festival activities and time limitations during the village visits. Although participants were primarily from the three villages visited, a small number from neighbouring villages also participated in the research activities. Participants represented a variety of beliefs systems, primarily those of Christian denominations, but also included individuals identifying with Kastom beliefs such as the John Frum movement who are known to reject many modern practices. The age range of female participants was 20 -70 years, males 24 -57 years and youth 15 -34 years. Youth were defined by the community as young unmarried adults. The proportion of female participants with primary or secondary education was 57.1% compared to males at 77.3% and youth at 100% . The study villages across Tanna were generally homogeneous with regards to the key issues being investigated in this research except for the frequency and motivation for bed net use, where the Middle Bush village differed in their responses compared to the North and --- Methods of malaria prevention used The reported methods of protection from malaria used by adults and children did not differ. The primary protection method identified by all participant groups was the use of bed nets. Cleanliness was also frequently reported as essential for malaria prevention. This ranged from ensuring that adults and children wash daily and wear clean clothes to keeping one's house and yard clean and tidy . A few participants reported the importance of making sure children do not walk outside during cold and windy times and of ensuring the consumption of clean water for the prevention of malaria. Typical of these responses was the following quote: 'Some of the preventive measures that we use are; using mosquito nets, don't drink from dirty pools, boil water to make sure water is safe for the family to drink or cook with; and also cleaning our houses.' Very few participants reported the role of witchcraft in malaria transmission; those that did discussed it in a historical context. 'Some people mistake the symptoms of malaria and think the illness is caused by witchcraft so they take all those strong traditional medicines which sometimes cost them their lives. We don't take responsibility for protecting ourselves properly and blame other causes for the illness. Now, after a lot of information from the health workers we know that malaria is an illness caused by mosquitoes.' Although most participants recognized that mosquito bites can cause malaria, prevention practices relating to ensuring personal cleanliness, boiling water prior to consumption and keeping children out of the wind and cold indicate that many perceive malaria transmission to occur through additional means. Other methods of protection reported by a few participants were the use of long clothing, a blanket, mosquito coils and the traditional practice of burning coconut husks or green leaves to create smoke for repelling mosquitoes. These methods continue to be used particularly by those travelling away from their village or camping by their gardens as an alternative to the use of bed nets. --- Bed net coverage Most participants reported using the LLINs distributed the previous year and many continue to use the older conventional ITNs. Transect walks confirmed that conventional ITNs continue to be used due to insufficient LLINs for coverage of all household members and were reported as being 2 -7 years old. These older conventional ITNs ranged from being in relatively good condition to being considerably torn but were being used in the absence of available new nets. Insufficient bed nets during holiday seasons was commonly reported. Visiting family or friends may stay for periods of up to several weeks and use old nets that have been saved by householders, but there are often insufficient nets to accommodate additional guests. --- Bed net acceptability and barriers to consistent use Despite the common perception that mosquitoes can pass through the larger mesh spaces of the Olyset bed nets, the majority of participants over all three areas of Tanna reported relatively good acceptability of the LLINs received for the first time the previous year and described them as being strong, larger in size and having better ventilation than the previous conventional ITNs. Most participants expressed a preference for larger sized nets for better ventilation and less movement restriction. Although most participants reported the LLINs to be acceptable, there remain a number of barriers to their consistent use including travel, cultural beliefs and practices, gender roles and seasonality of mosquito nuisance. Inter-and intra-island travel for work, holiday and festival activities was reported in all three study villages with limited effective malaria protection used during these times. Particularly, travel to and participation in Provincial festivals can result in bed net non-use for a period of several days to a week or more. For example, in July 2009 people from all over Tafea travelled to the Provincial capital for a week-long arts festival which was followed by Independence Day celebrations. A number of participants reported that during this time many people slept without bed nets. Cultural beliefs and practices were also reported as barriers to bed net use. It was commonly stated that people with strong Kastom beliefs were either not using bed nets as a result of their lack of acceptability or not using them consistently due to regular all night dancing rituals. Fear or dislike of the insecticide was identified on a number of occasions as the primary reason for net non-use by those with kastom beliefs. '....some don't due to their strong belief in Kastom....they are afraid of the chemical in the net, that it might cause death to them.' There are gender-specific barriers to bed net use. The traditional practice of women retreating to separate huts during the time of menstruation still occurs in some parts of Tanna . Mosquito nets are reportedly not always available for women sleeping in these menstruation huts. 'Here in Tanna, when the mothers go through their menstruation they go and sleep in another house apart from the fathers and they may not use nets. This is a common practice in the whole of Tanna.' Barriers to consistent bed net use by men on Tanna include livelihood activities such as fishing, camping by vegetable gardens, and travel for work; as well as evening social activities. Regular evening kava drinking at the Nakamal was commonly reported as a practice that reduces the use of bed nets amongst men. '...most of the men in this village do not like using the nets. They say they feel hotter when they go under the nets and under the influence of kava or alcohol. Sometimes they do not sleep under their nets if they camp in their gardens and if they go out fishing.' Many participants over all three areas of Tanna reported seasonal bed net use only, which is primarily influenced by mosquito nuisance and evening temperature, and fear of malaria in North and South Tanna. Some typical comments were: ' --- Maintenance of bed nets 'Mothers' were identified by the majority of participants as being primarily responsible for washing bed nets . The frequency of net washing varied with some reporting it occurred whenever the nets were dirty, others once or twice a year and a few reported their nets were never washed for fear of removing the insecticide. 'If the malaria people told us that even if you wash the nets the power will still remain, then I would wash my net, but they haven't said it so I don't want to wash my net' Many participants reported confusion between the washing instructions of the previous conventional ITNs and the newer Olyset LLINs . Some participants reported to be awaiting the arrival of the malaria team for re-treatment of their LLINs prior to washing them. None of the participants interviewed reported using the correct procedure for regeneration of insecticide in the Olyset LLINs. --- Influences on preventative health behaviours Responses relating to who are most influential in changing preventative health behaviours in the community were similar in all three areas of Tanna and between men and women. Participants appeared to be influenced by those that they saw as an authority when it comes to health issues and by those well-known and respected in the community. Doctors, village-based health workers and visiting malaria officers were most often reported to have the greatest influence on malaria prevention practices such as bed net use. Many participants also reported church leaders as particularly influential. Village chiefs, elders and teachers were also reported by many as having some influence over health practices. Within households it was often reported by both male and female participants that the 'mothers' are responsible for looking after the home and health of the family and were the most significant influencers on the health behaviours, particularly of children. However, some men reported that they themselves were ultimately responsible for decision making regarding bed net use in the household. 'The father is the head of the house so he is the one that tells the children and the mother to use nets to protect them from malaria.' '...we heard from the doctor that we should use the net to sleep under and so we, the fathers, as household heads, we make sure all the members of our family sleep under nets.' Despite these influences the majority of participants reported that they made their own decisions regarding malaria prevention practices such as bed net use. In addition to the influence of health officers and other community leaders, practical factors and acceptability issues as well as risk perception play a role in decision-making processes. Perception of risk plays a significant role in influencing preventative practices such as bed net use. Several participants in each of the FGDs in North and South Tanna reported having their bed nets hanging in their household throughout the year and stated fear of malaria as their reason for doing so. Their views are summarized in the following two quotes: 'Yes. People do sleep under bed nets because we've had people dying of malaria and some of our people make it a habit to sleep under bed nets.' ' As a household head, I am afraid of the illness and I make sure my family uses nets at night.' Participatory mapping highlighted participants' intimate knowledge of the local environment and their ability to identify risk factors such as mosquito breeding sites and households where malaria is present . In addition, an exploration of health and disease priorities, and the motivators and barriers to bed net use, revealed a number of factors related to risk perception that influenced both the decision to use bed nets, and the pattern of their use. Participants that perceived themselves or their children as being at risk of malaria were more likely to use bed nets. Commonly reported factors that contributed to heightened risk perception and hence bed net use were: knowledge of malaria causation and the presence of mosquitoes; perception of malaria as a severe illness ; presence of the disease; or recent memory of severe illness or death from malaria in the community. 'Malaria is more severe in children than adults so they need to use bed nets every day.' 'We experienced a great disaster in 1996 with malaria where everybody was sick, the adults and the children. The adults were lucky because they were strong and they can tolerate the illness, whereas the children were not very strong and they sometimes fell unconscious because the fever was very strong in them....everybody has seen the effect of malaria in their lives....and see the importance of sleeping under nets to protect themselves from malaria.' Commonly reported factors that contributed to a perception of reduced risk of malaria and hence bed net nonuse were: inaccurate understanding of malaria causation, if the perceived risk of the insecticide in the net was greater than that of contracting malaria, a lack of mosquito nuisance or an absence of the disease in the community. 'People don't get sick even when they don't sleep under nets so they might not want to use bed nets.' 'The insecticides can make people sick if they breathe in or not wash their hands properly.' Community health and disease priorities were obtained through consensus among participants in each of the participatory workshops , and as well as influencing risk perception, were found to play a role in determining community motivation for participation in malaria pre-vention. The priority accorded malaria in study communities was established on the basis of how common and how severe it was perceived to be relative to other health issues experienced. Despite low transmission, malaria is considered a high priority in both North and South Tanna study villages because it is still regarded as a current and serious threat. Malaria was not considered a high priority in Middle Bush however, except among youth participants. This is due to it not being considered a common illness in the area in recent times. Despite malaria's lack of priority in Middle Bush, motivation for participation in prevention practices is maintained by some participants as a result of risk perception that is being maintained by past experiences of severe illness or death or due to their understanding of the potential for malaria transmission as a consequence of local environmental factors that support mosquito breeding. 'Yes here we think malaria is a big problem...we live in the rainforest part of the island and our weather is very cold and humid and it is common to have a lot of rainfall so we have a lot of mosquitoes.' '...we have had some experiences here in the past where some children were normal at birth but after becoming sick with malaria, they ended up having some disabilities.' Although this risk perception is maintaining bed net use by some, seasonal mosquito nuisance is the predominant motivator for bed net use among participants in this community. --- Avenues for receiving health information Based on participant responses across the three study villages, the current flow of health information and method of delivery is mapped out in Figure 2. Avenues for health message delivery are consistent with those people participants reported as being most influential with regards to preventative health behaviours . The top four preferred avenues for receiving health information, consistent across the island were through visiting health awareness teams from Lenakel, through health workers based in health centres and aid posts, through their church leaders and by the chief through their Nakamal. --- Discussion Adherence to malaria prevention practices in Tanna, such as bed net use, appears to be a complex interaction between risk perception, intervention acceptability, socio-cultural factors and practical issues. These influences on preventative health behaviours have been described in the literature previously [14][15][16][17][18]. Despite the low prevalence of malaria on Tanna [4], its perceived priority in communities of North and South Tanna is sustained by recent memories of it being a common and severe illness to which children are particularly vulnerable. With limited transmission, low priority and comparatively lower perceived risk of malaria in the Middle Bush community, motivation for malaria prevention practices such as bed net use are being maintained primarily by mosquito nuisance. As mosquito nuisance was reported as seasonal in the three villages of this study, this motivation alone may be insufficient to achieve year round, high bed net coverage that will be required for malaria elimination. In addition, the limited use of bed nets among those with Kastom beliefs is of particular concern. In such contexts, health education initiatives that attempt to elicit participation only through increasing malaria knowledge and by encouraging individuals to take responsibility for their own health will be ultimately ineffective [19,20]. Mobilising or augmenting social capital has been identified as an important prerequisite to enhancing health promoting behaviours and will be more effective than an approach that emphasizes individual rational choice [10]. Social capital, described as an overarching concept that pulls together previously described phenomena such as 'sense of community,' 'community competence,' 'collective efficacy,' 'critical consciousness,' and 'empowerment,' is thought to be critical for achieving and sustaining community participation in health programmes [10,21]. In Tanna, where existing social mechanisms appear to promote a strong 'sense of community,' and influence individual and household level decision making, complementary strategies should be employed that concurrently augment social capital, improve individual knowledge regarding malaria and it's transmission and dispel rumours and misconceptions that can create community resistance to participation in malaria prevention practices. A multi-faceted, multi-level approach will be particularly important for a programme of elimination in areas where malaria is not a perceived risk or a community priority, and where religious belief systems discourage participation. Lessons from the Aneityum experience revealed that in order to maintain elimination once malaria is no longer considered a public health concern and external funding is withdrawn from a weak economy, communities need to internalize key issues, take ownership for programme implementation and maintenance, and have sufficient social capital to maintain momentum for the long-term [22]. The social and behavioural data obtained through this research will inform the development of a comprehensive strategy for communication and community participation in malaria elimination in Tafea Province [19]. To replicate the success of Aneityum on larger islands with more complex socio-cultural and environmental contexts, this research suggests that the strategy should include; mobilizing social networks and community leaders through consensus building processes; pulsed media campaigns to advise communi-ties of the efforts to eliminate malaria in the Province, to increase knowledge of malaria and to address barriers to participation; strategies to overcome gender barriers; provision of outreach to remote communities such as interpersonal communication and a system for monitoring changing community perceptions and participation [23][24][25]. The specific strategies outlined below are presented in the context of an existing enabling environment created by a broader commitment for malaria elimination in Vanuatu that includes significant in-country and international political, policy and financial support. Table 5 summarizes the specific interventions presented here according to whether they are attempting individual behaviour change, modification of social norms or both. --- Strategies to address barriers to community participation in malaria prevention practices in Tafea Province --- Engaging and augmenting social mechanisms Obtaining endorsement for malaria elimination from key community members found to influence health behaviours and engaging them in the planning of communitybased activities will be an essential first step towards establishing effective partnerships with communities to support local-level programme implementation, surveillance, monitoring and evaluation [26][27][28]. Given the influence that church leaders were reported to have with regards to health behaviours and that they are able to reach people at the household and individual levels through special interest groups and house-tohouse visits; engaging church leaders in the community mobilisation strategy will be important. There were as many as eight different religious affiliations represented in each of the areas that the research was conducted, therefore, mapping the presence and reach of each religious group active on Tanna will assist in identifying the many church leaders needing to be engaged in community mobilisation for malaria elimination. In addition, particular attention needs to be paid to identifying and working with Kastom communities to encourage participation in the programme through existing relationships between health care workers and the leaders of these communities. Through the use of existing social mechanisms the elimination programme can capitalize on communities' intimate knowledge of local environmental risk factors for malaria and engage them in regular, coordinated, community-wide prevention measures including source reduction, personal protection and surveillance activities [29,30]. This will be particularly important in remote communities where access to treatment for malaria is considerably more difficult and whose participation in the programme is vital to achieving and maintaining zero malaria transmission. Village health workers in North and South Tanna reported the existence of a volunteer committee made up of members of the existing aid post committee. These volunteers were also representatives of villages more distant to the aid post and therefore assisted the village health worker in providing outreach health promotion. It is unclear from the interviews undertaken in this research how wide reaching these volunteer committees are on Tanna or how many are currently operational. They may represent an important avenue for engaging remote communities in malaria elimination by providing house-tohouse interpersonal communication for intervention advocacy and, therefore, should be further investigated. Finally, social mechanisms provide a continual community presence which through regular communication and publicity can assist the programme in addressing issues that create community resistance, maintain focus on malaria elimination in the absence of the disease and avoid the problems of waning attention and commitment experienced, as for example during the previous yaws elimination campaign in Vanuatu [6]. --- Engaging communities and maintaining motivation for participation Integrating malaria interventions with activities addressing other community health and disease priorities will assist the malaria program in fostering good will and rapport with the community. For example, mobile malaria screening or campaign teams could include a medical officer who as well as providing education and treatment for malaria, could address other community health priorities and epidemiological evidence-based health needs . In addition, malaria prevention practices such as environmental management could be integrated with other disease prevention programmes, such as the 'tidy village campaign', which targets dengue and diarrhoeal diseases through collaboration between the VBDCP and Environmental Health. The incorporation of education regarding malaria causation, prevention and treatment into the school curriculum is an additional strategy that would take advantage of the influential role teachers play in the lives of children and their parents. These integrated measures will require multisectoral involvement and will impor-tantly frame the malaria elimination programme within a primary health care approach and assist in demonstrating to communities the Ministry of Health's commitment to improving their health and well-being [31]. A further strategy for maintaining motivation in the context of disappearing disease will be to provide communities with regular updates on the progress and then maintenance of malaria elimination on Tanna. Feedback could be delivered to communities through strengthened reporting systems between the provincial malaria team and the aid posts, health clinics, schools and churches. --- Table 5: Summary of proposed interventions to build and maintain community participation in malaria prevention practices . --- Proposed interventions Attempting individual behaviour change --- Attempting modification of social norms Engaging --- Communication strategy Standardized verbal and written education will need to be developed and disseminated widely. To improve the likelihood of achieving behaviour change, the strategy for distribution of health education should be integrated with the aforementioned strategies for engaging social mechanisms and sustaining community participation. Targeted health education initiatives have not always been effective in achieving behaviour change which, as well being a consequence of economic or institutional factors, may be a result of their failure to modify social norms, particularly if messages are attempting to address barriers to participation that are socially constructed [10,32,33]. Messages Inaccurate beliefs relating to the mode of malaria transmission or the safety and efficacy of interventions could affect the community's ability to take effective preventative action. This research has highlighted the need for accurate and standardized messages regarding malaria causation, symptoms, prevention and treatment. Messages will need to address fears regarding the insecticide and confusion over maintenance of bed nets , and should elucidate the continued risk of malaria transmission during non-peak mosquito seasons. Building motivation for year-round use of bed nets primarily on the basis of mosquito nuisance and malaria risk, may be limited in its effectiveness for a number of reasons. Firstly, risk perception is a dynamic system that is both individually and socially constructed [34]. It is influenced by individual psychological capacity at various life stages, interactions with other individuals and their characteristics, socio-cultural contexts and environmental conditions [34]. Given the intra-and inter-community differences in risk perception that inevitably arises from this complex system, standardized messages regarding the importance of using preventative measures to mitigate risk will alone fail to provide motivation for participation to a sufficient proportion of the population. In addition, misperceptions of malaria risk resulting from variances in mosquito nuisance and inaccurate understandings of malaria causation, as reported in all study areas, negatively influence motivation for using LLINs to prevent malaria. Similar findings have been reported elsewhere and describe the initial high acceptance and use of new bed nets during the campaign period giving way to reduced usage as perceptions of their lack of usefulness and their daily inconvenience emerge [35]. Therefore, as well as addressing inaccurate perceptions of malaria causation and risk, motivation for bed net use by households could be built on their existing understanding of the vulnerability of children to malaria as well as the additional benefits of LLINs such as allowing a good night sleep for children and reducing other household insects such as bed bugs and cockroaches. In addition, messages stating the importance of high community coverage and consistent use of LLINs for successful malaria elimination should be conveyed, with an emphasis on encouraging their peers to participate in the struggle to be rid of malaria. Inter-and intra-island population movement for work, holiday and festival activities provides a constant and significant threat for malaria resurgence on Tanna, particularly with reports from all three study villages of limited effective malaria protection used when travelling [36]. Communities will therefore need to be encouraged to take bed nets with them when travelling and use older serviced nets if newer nets are not available. Although the use and maintenance of bed nets is already somewhat incorporated into women's domestic routines, this could be further encouraged and supported as well as being discussed as part of men's responsibility in running households. Net maintenance kits could accompany future LLIN distribution and the repair of serviceable older nets promoted. Older, well-maintained nets could be saved for travelling of individual family members, for household guests or for use in women's menstruation huts. Motivation for women to encourage household participation in malaria prevention practices such as bed net use may be promoted by messages of the negative impact on their ability to work and carry out household tasks when they have to care for sick family members [32]. Avenues for message delivery This research identified village-based health workers and other health officers being the most influential and preferred people for the delivery of messages relating to health practices, however, these health workers are often operating at full capacity and are unable to implement any additional health promotion and community mobilisation activities as part of a malaria elimination programme. Mapping the flow of health information on Tanna and identifying other influential community members has assisted in recognising local-level resources and additional avenues for dissemination of behaviour change communication . Multiple channels of communication are preferred in order to reinforce messages and reach a greater audience; however, an understanding of current communication channels to specific audiences as well as indigenous preferences for receiving health information will enhance the efficacy of messages and ensure the most efficient use of limited resources [28,37]. Storytelling for the transmission of health messages is a traditional practice on Tanna and has been documented elsewhere as an effective means of education as it can present both positive and negative behaviours as well as ideas and values in a simple, entertaining form [38]. Other established tools for health education on Tanna reported by participants were community meetings, workshops, school curriculum and community theatre. Additional effective tools for health education identified in the literature include promotional materials , music, special events personal selling, point-ofsale health promotion and mass media [28,39]. Radio, particularly the use of mini-drama series with health themes, can be an effective educational tool and has the advantage of being able to reach remote communities or those with low literacy [23,40,41]. Although transect walks in the three study communities found many households to have radios, reception was reportedly poor. Currently being explored are alternatives such as the provision of community radios and prerecorded standardized education programmes that can be broadcast locally. Balanced with the importance of channelling health information through influential community members is the recognition of unequal power relations and its potentially negative impact on empowerment. A feeling of lack of control over one's health is likely to hinder health-enhancing behaviours [42]. To counter this effect, peer-led education has been suggested as a means of providing a safe environment for promoting assimilation with health prevention practices [21]. Peer education has been shown to significantly increase knowledge, modify attitudes and improve protection self-efficacy [43,44]. In Tanna, existing special interest groups could be engaged and supported in carrying out peer-led education and the delivery of a range of targeted health messages. --- A model for sustaining community participation for malaria elimination Formative qualitative and participatory research as described here that investigates the socio-cultural, behavioural and practical issues that influence health behaviours is valuable for identifying barriers, motivators and key issues affecting community participation for initial strategy development and programme design. However, because they investigate issues at a single time point they are rarely able to provide a comprehensive picture of the dynamic influences on health behaviours and community participation nor how they evolve following programme implementation. Regular broadly implemented research throughout the Province to investigate changing community attitudes and barriers to participation during and fol-lowing malaria elimination would require significant human and material resources. A model being considered for pilot in the SW Pacific is the establishment of 'sentinel sites' for monitoring community engagement and participation in a few purposefully selected villages. This model builds on the 'qualitative monitoring' approach used successfully in the KINET Project in southern Tanzania [28]. Local volunteers could be trained and supported to carry out iterative research using a tool kit of PLA methods/activities. This would create an avenue for genuine community engagement and participation in the design of socially and culturally acceptable intervention implementation strategies, as well as contribution to programme evaluation and modification. The potential benefits of this approach are: • New technologies or implementation options for existing interventions could be trialled and modified as required at sentinel site communities prior to large scale application in order to maximize intervention success and reduce relative costs. • Sentinel sites can provide valuable in-depth, realtime feedback to provincial malaria staff and policy makers, allowing the programme to remain responsive to changes in community perception, misconceptions, priorities, concerns and practices. Such rapid and responsive actions will go a long way to preventing community disharmony arising from unattended concerns and misconceptions that would negatively impact participation in the elimination programme. • They provide an avenue for constructive dialogue and the exchange of views and perspectives between communities and policy makers and demonstrate programme commitment to genuine community participation. • Sentinel sites would provide a continuous interface for the exchange of 'exogenous' and 'indigenous' knowledge and communication [28]. • If significant concerns are raised in sentinel site communities, further investigations can be carried out in other communities to investigate these issues in more depth. • Through the PLA approach, sentinel site communities would benefit from further enhancement of social capital, the development of 'critical consciousness' and contribute to a sense of community ownership, which will assist with maintaining motivation for malaria elimination in the context of disappearing disease. The location of these sentinel sites for community engagement and participation should aim to capture communities that differ with regard to level of malaria transmission and those in rural or urban settings. --- Limitations of the study This study was conducted to explore issues around malaria prevention practices ; community health and disease priorities, influences on prevention practices; and avenues for receiving health information on Tanna. Vulnerability to malaria can vary due to biological, cultural, socioeconomic, environmental and institutional factors and can influence community participation in malaria prevention practices [32,33]. This research explored the influence of risk perception on malaria prevention practices; however, it was beyond the scope of this operational research to investigate the influence of the broader concepts of vulnerability and resilience. Further investigation into these dynamic concepts and their impact on community participation for malaria elimination could occur as part of the work carried out at 'sentinel sites' for community engagement and participation. As with the nature of qualitative research, the results are limited in their ability to be generalized to the wider population of Vanuatu. The authors also recognize that responses relating to bed net use may be an overestimation as they are subject to social desirability bias. In addition, the importance of malaria in responses relating to health and disease priorities may be influenced by the presence of the research team asking questions about malaria. Finally, there may be some degree of loss of nuances and depth as a result of the direct transcription and translation from Bislama to English of FGD and KII recordings by the local research officers. --- Conclusion In summary, we propose a package for augmenting social capital and sustaining community participation in malaria elimination in low transmission settings such as Vanuatu which includes: Formative research and 'qualitative monitoring' through sentinel sites for iterative participatory investigation into the evolving local sociocultural, behavioural and practical issues that impact malaria prevention and treatment; identifying and mobilising social networks and their leaders through consensus building processes; intersectoral collaboration; integration of malaria interventions with activities addressing other community health and disease priorities; and targeted implementation of locally-appropriate, multi-level, pulsed media campaigns that sustain motivation for community participation in malaria elimination. --- Competing interests The authors declare that they have no competing interests. ---

Background: In the 1990s, the experience of eliminating malaria from Aneityum Island, Vanuatu is often given as evidence for the potential to eliminate malaria in the south-west Pacific. This experience, however, cannot provide a blueprint for larger islands that represent more complex social and environmental contexts. Community support was a key contributor to success in Aneityum. In the context of disappearing disease, obtaining and maintaining community participation in strategies to eliminate malaria in the rest of Tafea Province, Vanuatu will be significantly more challenging. Method: Nine focus group discussions (FGDs), 12 key informant interviews (KIIs), three transect walks and seven participatory workshops were carried out in three villages across Tanna Island to investigate community perceptions and practices relating to malaria prevention (particularly relating to bed nets); influences on these practices including how malaria is contextualized within community health and disease priorities; and effective avenues for channelling health information.The primary protection method identified by participants was the use of bed nets, however, the frequency and motivation for their use differed between study villages on the basis of the perceived presence of malaria. Village, household and personal cleanliness were identified by participants as important for protection against malaria. Barriers and influences on bed net use included cultural beliefs and practices, travel, gender roles, seasonality of mosquito nuisance and risk perception. Health care workers and church leaders were reported to have greatest influence on malaria prevention practices. Participants preferred receiving health information through visiting community health promotion teams, health workers, church leaders and village chiefs.In low malaria transmission settings, a package for augmenting social capital and sustaining community participation for elimination will be essential and includes: 'sentinel sites' for qualitative monitoring of evolving local socio-cultural, behavioural and practical issues that impact malaria prevention and treatment; mobilizing social networks; intersectoral collaboration; integration of malaria interventions with activities addressing other community health and disease priorities; and targeted implementation of locally appropriate, multi-level, media campaigns that sustain motivation for community participation in malaria elimination.

Introduction Social distancing has been a critical measure to address the COVID-19 pandemic, yet the long-term public health impact of prolonged social distancing is unclear. Although high levels of social isolation and loneliness have been associated with a high risk of morbidity and mortality Holt-Lunstad, Smith [1,2], a growing body of evidence strongly suggests that social isolation and loneliness-notable consequences of social distancing [3]-specifically play a major role in neurocognitive health [4][5][6][7]. Since the outbreak of COVID-19, research has further shown the increased dementia risk that may be due to stress, loneliness, and neuropsychiatric symptoms of prolonged physical distancing [8]. A key barrier to better understand the extent of potential long-term neurocognitive health impacts and to deploy effective strategies that balance competing risks requires clarifying underlying biological mechanisms. Investigating causal pathways that link social isolation and loneliness with neurocognitive aging and neuropathological changes is not readily amenable to be studied using randomized controlled trails. However, there are many detailed experimental models and observational studies that, when brought together, can provide a hypothesis-generating theoretical model for the complex neurobiology and pathophysiology underlying observed associations. As indicated by the National Institute on Aging, there is a need for more research in the areas of social isolation and loneliness [9]. In response, this topical review was conducted to highlight notable findings from previous studies related to potential biological mechanisms, provide key recommendations to address critical knowledge gaps, and inform future studies for addressing these factors in neurology and population health through targeted interventions. Although social isolation and loneliness may be manifestations of early neuropathological changes [10], the present review focused on summarizing the neurological context of social isolation and loneliness as proposed harmful psychosocial determinants of health and on describing the potential long-term risks of social distancing with respect to general neurocognitive health [11] and aging [12], inclusive of subsequent risk for developing Alzheimer's disease and related disorders [13]. --- Definitions and Context In the absence of well-established consensus definitions and research frameworks used across studies of social isolation and loneliness, we used generally accepted definitions for each to facilitate interpretation of extant literature. Social isolation was defined as the objective "lack of social contact or support" [14]. Separately, loneliness, which can arise from and compound social isolation, was defined as the subjective "feeling of being alone or isolated" [14] [15]. We used these terms to explicitly indicate whether the noted outcomes were associated with loneliness, social isolation, or both. Preceding the COVID-19 pandemic, loneliness and social isolation was rising in societies across the world; over one third of adults aged 45 and older are estimated to feel lonely, while about one fourth of adults aged 65 and older are likely to be socially isolated [16]. The COVID-19 pandemic's required "social distancing" has had the unintended consequence of further increasing the prevalence of both social isolation and loneliness [17]. Due to the pandemic, individuals already at risk for loneliness have experienced higher levels of social isolation and loneliness during the COVID-19 pandemic [18]. Of note, social distancing may affect people differently depending on local, regional, and national conditions; thus, the interpretation and generalization of prior findings must be done cautiously and approaches to attenuate related risks must vary accordingly. To summarize the potential causal neurobiological implications of social isolation and loneliness, this review focused on the suggested biological mechanisms between social isolation and neurological outcomes because causal relationships are best investigated through experimental and randomized controlled trials, which, in this case, are infeasible for human study. However, many animal studies have examined effects of social isolation, rather than loneliness, due to greater ease of controlling and measuring social interactions in animal models. Furthermore, since loneliness often emerges from social isolation [19], it is helpful to understand how-directly or indirectly-this exposure might alter brain biology, even without an associated measure of loneliness. --- Methods --- Literature Search A literature search was performed in Embase, Cochrane Library, PubMed, MEDLINE, and ClinicalTrials.gov databases from their inception of each database through March 2021. Search terms included: social isolation, loneliness, cognitive health, brain health, brain aging, cognitive aging, and dementia. Terms such as "Alzheimer's disease" and "cognitive decline" were excluded because they fell under the hierarchy of the search terms used, which were the primary focus of the review. A filter was used to limit the search results to English language studies, and no filter was placed on publication dates. Studies were excluded if they did not relate social isolation or loneliness with measures that underly cognitive or brain health, cognitive or brain aging, or dementia due to any cause. The search terms were separately applied for each neurocognitive outcome as "loneliness and [outcome]" and "social isolation and [outcome]" in all databases. MEDLINE, ClinicaTrials.gov, and the Cochrane Library yielded no usable results, while PubMed and Embase delivered a total of 147 successful hits. --- Eligibility Criteria Studies were included if they reported examining the association of loneliness or social isolation with a neurocognitive outcome measure. Studies were excluded if they did not report a primary outcome of interest, did not evaluate loneliness or social isolation, or if it was a duplicate study. Intervention studies that were not designed to specifically decrease measures of loneliness or social isolation as their primary outcome, such as studies to improve psychosocial support for those with dementia, were also excluded. Non-English studies were excluded. We did not exclude studies based on patient demographics such as age, clinical status, or gender. --- Data Extraction and Synthesis The following data were extracted from the articles that met the inclusion criteria: study sample, control group type and format , outcome variables, and results for effects . We also extracted any reported data on potential mechanisms of the results for effects, such as causal inference or mediation analyses. The results yielded studies that were either observational or experimental using animal models. --- Discussion A total of 174 studies were reviewed. From a total of 1612 studies identified from databases, 1438 articles were excluded for reasons of not being related to the question of concern, being a duplicate, and concerning topics not related to brain health. After reviewing the full texts of 174 studies, 83 studies have been included in this qualitative review . Three key observations emerged from the review: 1. There are limited studies of biological mechanisms of social isolation and loneliness, but extant studies suggest that loneliness and social isolation are implicated in pathways that regulate experience-induced neuroplasticity as well as both systematic and brain-specific physiologic responses to stressors, such as inflammatory, neuroendocrine, or vascular dysfunction pathways; this is especially the case for environmental and psychosocial stressors that may be acute or chronic. 2. Among individuals who experience high levels of loneliness and social isolation, the combined effects of these pathways seem to be at least partly responsible for observed differences in vulnerability or resilience to cognitive decline due to aging or neuropathological changes. --- 3. Knowledge gaps to address, which emerged from the present review, are the need for additional studies that are designed to characterize promising stress and neuroplasticityrelated pathways in humans, the need to identify how the influence of these pathways may vary by socioeconomic-based factors that differ for communities that have been historically discriminated against , and the need to explore practical intervention studies that target specific biological, cognitive, and psychosocial pathways in parallel. Studies that investigated potential causal biological pathways were mostly derived from non-primate animal studies examining environmental conditions due to the infeasibility of studying these causal models in humans. Almost all of the studies investigating associations with cognitive and psychosocial outcomes were human studies using measures of loneliness, social isolation, or both as predictor variables . Studies that investigated potential causal biological pathways were mostly derived from non-primate animal studies examining environmental conditions due to the infeasibility of studying these causal models in humans. Almost all of the studies investigating associations with cognitive and psychosocial outcomes were human studies using measures of loneliness, social isolation, or both as predictor variables . Figure 2. SIL has been related with stress-dependent physiological disorders, chronic inflammation, and increased circulating markers for inflammation, cortical atrophy and smaller regional brain volumes, including areas that support memory, Alzheimer's disease-related neuropathologic findings, such as amyloid plaques and neurofibrillary tangles, decreased neurogenesis and lower levels of brain-derived neurotrophic factor, increased risk of all-cause dementia and decreased levels of cognition function in executive function and memory domains, poor mental health with increased symptoms of anxiety and depression, worse sleep quality, especially sleep fragmentation, and increased risk of cerebrovascular dysfunction and impaired post-stroke recovery. --- Biological Outcomes. --- Associations with Inflammation From the literature included in our qualitative review, social isolation and loneliness have been associated with serum markers of chronic inflammation, such as the neutrophilto-lymphocyte ratio, the concentration of high-sensitivity C-reactive protein [20], and circulating leukocytes [21]. Other circulating inflammatory markers, such as fibrinogen and interleukin-6 , have been associated with increased levels of social isolation and loneliness as well [22,23]. In contrast, higher levels of social engagement and living with another individual were associated with lower levels of C-reactive protein and fibrinogen [24]. Figure 2. SIL has been related with stress-dependent physiological disorders, chronic inflammation, and increased circulating markers for inflammation, cortical atrophy and smaller regional brain volumes, including areas that support memory, Alzheimer's disease-related neuropathologic findings, such as amyloid plaques and neurofibrillary tangles, decreased neurogenesis and lower levels of brain-derived neurotrophic factor, increased risk of all-cause dementia and decreased levels of cognition function in executive function and memory domains, poor mental health with increased symptoms of anxiety and depression, worse sleep quality, especially sleep fragmentation, and increased risk of cerebrovascular dysfunction and impaired post-stroke recovery. --- Biological Outcomes --- Associations with Inflammation From the literature included in our qualitative review, social isolation and loneliness have been associated with serum markers of chronic inflammation, such as the neutrophilto-lymphocyte ratio, the concentration of high-sensitivity C-reactive protein [20], and circulating leukocytes [21]. Other circulating inflammatory markers, such as fibrinogen and interleukin-6 , have been associated with increased levels of social isolation and loneliness as well [22,23]. In contrast, higher levels of social engagement and living with another individual were associated with lower levels of C-reactive protein and fibrinogen [24]. --- Associations with Neuroimaging Measures Of the studies reviewed, most identified that loneliness or social isolation related with brain MRI measures of brain aging and neuropathology. For example, those who identify with feeling lonely were shown to have smaller hippocampal volumes and a larger volume of cerebral white matter implicated in social cognitive processing and emotional regulation [25]. Regions such as the left posterior superior temporal sulcus, the middle temporal gyrus, and the entorhinal cortex have also been found to be smaller among participants who had smaller online social networks [26,27]. Furthermore, based on tau PET imaging, it has been found that higher tau pathology in the right entorhinal cortex and clusters in the right fusiform gyrus are associated with greater loneliness [28]. Higher cortical amyloid burden on PET scans has also been shown to be significantly associated with greater loneliness [10]. In addition, lonely individuals have shown stronger functional communication in the default network and higher microstructural integrity in the fornix pathway of the default network in a functional connectivity MRI [29]. Overall, the causal directionality and etiology of these neuroanatomical differences remains unclear. --- Associations with Neuropathology Of the studies included in this narrative review, Alzheimer's disease pathology, including greater burden of amyloid plaques and neurofibrillary tau tangles, have been associated with greater loneliness even after controlling for other markers such as age, sex, and apolipoprotein E ε4, the genetic risk marker of Alzheimer's disease [10,28,30]. Moreover, the association of high amyloid burden and loneliness has been shown to be stronger in APOE ε4 carriers than in noncarriers, indicating that individuals with genetic risk for Alzheimer's disease may be at greater risk of loneliness and social isolation [10]. Social network size has also been proven to act as a modifier of association between pathology and cognitive function [31]. For dementia-related neuropathology in the form of greater cerebrovascular disease burden, participants within a smaller social network have been shown to be at higher risk of ischemic stroke [32,33]. --- Associations with Neuroplasticity Social isolation and loneliness have been implicated in neuroplasticity related to poststroke recovery and vascular health in the literature reviewed. In two mouse models of ischemic stroke, social isolation immediately following cerebral ischemia was related with greater brain volume loss, higher mortality, delayed motor and sensory recovery, and worsened cognitive function [34,35]. Mice isolated immediately after stroke have shown brain tissue with decreased levels of brain-derived neurotrophic factor , a molecule that aids in synaptogenesis and the growth, repair, and maturation of neuronal cells [34,35]. Similarly, group-living animals when socially isolated have been shown to have a decrease in cell proliferation, specifically in the dentate gyrus [36,37]; enriched social environments have been shown to increase cell proliferation and neurogenesis, especially in regions implicated in social interaction, memory, and communication [38][39][40][41][42][43]. A large literature of social animals randomly assigned to normal social living conditions or socially isolated conditions have also indicated the correlation of social isolation to low neurogenesis, BDNF, nerve growth factor , and low cell proliferation in the amygdala [40,41,44]. Early instances of social isolation in rats have been shown to affect the development of cognitive abilities and the nervous system through the mediation of producing BDNF protein [45]. Adolescent social isolation has correlated with epigenetic modifications, in the form of acetylation, that affect the expression of the BDNF in which isolation-reared rats have shown decreased hippocampal BDNF mRNA levels and protein expression. Thus, social isolation may play a causal role in the production of BDNF through gene regulation pathways, such as epigenetic modifications [45]. Social interaction has also been shown to rescue memory impairment in an Alzheimer's disease mouse model through a hippocampal BDNF-mediated pathway [38]. Even though BDNF levels measured from neural tissue is a more reliable indicator of this brain-enriched pathway, serum BDNF levels in humans have also been shown to partly mediate the association between levels of social support and dementia risk [46]. --- Associations with Sleep From the literature reviewed, in both older adults and adolescents, loneliness and social isolation have been associated with worse sleep quality, typically in the form of sleep fragmentation [47][48][49][50][51][52]. Poor sleep quality has also been linked with a higher risk of cognitive decline and poorer neurocognitive health [53,54]. Although the directionality of these relationships is unclear, one study of older adults suggested that loneliness mediated the association between sleep and psychosocial health [55,56]. --- Cognitive Outcomes Associations with Cognitive Function Of the studies reviewed, low levels of social isolation have been associated with better late-life cognitive functioning [4]. Inversely, social isolation has been associated with worse executive functioning [57,58] and memory loss [59,60]. In rodent models, social isolation decreased the activity of cAMP response element-binding protein , a transcription factor involved in long-term memory formation [61]. Furthermore, feeling lonely has been associated with an increased risk of all-cause mild cognitive impairment [10,62,63]; social isolation has been associated with global cognitive decline in older adults [64]. Loneliness has also correlated with poorer healthcare and financial decision making in older adults, further implicating executive functioning as a cognitive domain particularly vulnerable to impairment in the setting of loneliness [65]. Although longitudinal studies cannot establish causal directionality, these studies consistently demonstrate an association between loneliness and subsequent cognitive decline [63]. Loneliness has reliably been associated with increased risk of Alzheimer's disease and related dementias [66][67][68][69], in addition to worse behavioral and psychological symptoms of dementia [70]. Moreover, this increase in dementia risk seems to be most relevant for individuals with persistent loneliness compared to individuals with transient loneliness in whom dementia risk remains unchanged [67]. --- Psychosocial Outcomes 4.3.1. Associations with Depression, Anxiety, and Stress During the COVID-19 pandemic, isolated older adults reported higher levels of depressive symptoms, specifically worse social well-being and greater loneliness [71]. In studies reviewed, higher levels of loneliness have historically been associated with increased levels of depression and anxiety [72,73]. Though, in addition to psychiatric symptoms, social isolation and loneliness have been linked with related stress-dependent physiological changes [74]. Individuals who tend to be more lonely, including adolescents, are likely to also experience higher levels of social stress [75]. Furthermore, loneliness has been associated with higher levels of stress hormones that are typically elevated in response to psychosocial stressors [76]. In animal studies, chronic stress from social isolation has been shown to affect group-living animals by triggering anxiety-like behavior. At the molecular level, oxytocin expression and oxytocin-Ca 2+ signaling proteins, which are important for socioemotional and executive functioning, were permanently decreased in the hypothalamus, hippocampus, and prefrontal cortex [74]. Loneliness has been tied to increased hypothalamic pituitary adrenocortical activity, mediating corticosteroid production [57,[77][78][79], which may also increase risk of depression, anxiety, neurodegeneration, and immune and metabolic disorders [80][81][82]. Similarly, evidence suggests chronic loneliness associates with decreased variance in cortisol levels across the waking day as a biological measure of chronic stress [83]. --- Mediating and Modifying Factors Eleven studies investigated sociodemographic factors as potential mediators in the association between loneliness and neurocognitive health. These factors include age, gender, socioeconomic status, and race/ethnicity. Loneliness has closely related with the mental health of both adolescents [84] and older adults [85], though older adults are uniquely susceptible to observed relationships between loneliness and increased risks of physical inactivity, cognitive impairment, fatigue, and impaired activities of daily living [86]. Because loneliness is more prevalent among women [87], gender has been a proposed modifier of the relationship between loneliness and neurocognitive health. Older women are also more likely to be socially isolated based on census data demonstrating that, compared to men, women live alone more frequently [34]. In addition to higher risk for exposure to social isolation and loneliness in women, animal models suggest long-standing sex-dependent effects on abnormal gene expression in the brain related to neurological dysfunction [74,88,89]. While gender and age likely play a modifying role in health and disease mechanisms that relate with loneliness and social isolation, to the best of our knowledge fewer studies have been published that were specifically designed from inception to analyze how race/ethnicity play a role in the complex associations of loneliness and social isolation with neurocognitive health. After adjusting for differences in income, employment status, depressive symptoms, and social network size, compared to White older adults, lonely Black older adults had higher risk of dementia and cognitive impairment [90]. More intervention studies are needed to identify pragmatic, cost-effective strategies that decrease or prevent social isolation and loneliness and can attenuate their associated risks. For the present review, two intervention studies were identified. Examples of existing evidence-based interventions include community initiatives and social prescribing, or establishing a link between health services and social interventions to improve well-being [91]. Other interventions identified in a metanalysis targeted the improvement of social skills, enhancing social support, increasing occasions for social contact, and addressing maladaptive social cognition [91,92]. Successful interventions that reduce levels of loneliness are centered around promoting a sense of belonging and social connectedness [91], which tend to use methods tailored to address the precise barriers that underly an individual's or a group's social isolation or loneliness. For instance, some individuals lack social connectedness due to government orders to socially distance and stay home, and other individuals experience loneliness or social isolation due to a lack of mobility, untreated mood disorder that limits frequency and quality of social interactions, or a lack of skills in interpersonal effectiveness to meet their desire for greater social contact and support. Similarly, some older adults may lack the access or knowledge to use technologies that facilitate virtual or in-person opportunities for interaction. For older adults, interventions have revolved around physical exercise [93], social activities [94], or a mix of these [95]. Importantly, despite examples of significant findings with notable magnitude of effects, there are a limited number of community-based intervention studies compared to the more common primary care and home-based interventions [92]. New research may benefit from recruiting and training members of the community to create and perpetuate intergenerational companionships aimed at reducing the burden of loneliness and social isolation in older adults. Other possible interventions may explore brief yet effective pragmatic strategies to promote social support or rapid screening methods to assess loneliness and social isolation. --- Recommendations to Address Knowledge Gaps First, given existing gaps in understanding how social isolation and loneliness both modify and mediate pathways of experience-induced neuroplasticity and physiological responses to environmental and psychical stressors, studies to clarify specific mechanisms and pathways concerning inflammatory, neuroendocrine, and vascular dysfunction pathways can help to remediate the implications of broken or small social networks. Characterizing the intricacies of the effects of social isolation and loneliness on these biological pathways-through experimental and observational studies-will inform strategies that are better targeted to reverse such effects through medical or psychosocial interventions, or both. Second, additional studies are needed that not only characterize the pathways of impact in the human brain, but also identify how these socioeconomic-based factors may compound these pathways. Future longitudinal studies designed to clarify the role that race and ethnicity plays in the effect of social isolation and loneliness on brain health are required to develop successful public health interventions. Third, policy initiatives to support this research and that promote and enhance supportive social connections should be prioritized. This may include supporting and further highlighting the need for psychosocial intervention studies or efforts to increase technology and internet access for older adults. After the pandemic subsides, the long-term impact of increased levels of loneliness and social isolation will remain to be seen, but building on prior work to address the important knowledge gaps recommended above creates a valuable opportunity to radically improve public health and well-being in the decades to come. As a result, it is critical that all members of the community, from healthcare workers to politicians to scientists, come together to address the potential consequences of social isolation and loneliness. --- Conclusions Prioritizing studies that identify and characterize the most critical pathways that underlie the associations of social isolation and loneliness with neurocognitive health and disease states is of high importance, because insights from this research will inform better intervention trials. This includes adequately accounting for relevant factors that may both alter risk and advance health equity . Knowledge gaps in this area of research must be addressed to better understand the long-terms risks and benefits of public health interventions that are likely to influence levels of social isolation and loneliness within our communities. --- Supplementary Materials: The table of articles included in the review are available online at https:// www.mdpi.com/article/10.3390/ijerph18147307/s1. Table S1: Summary of Literature Review. Author Contributions: Conceptualization, J.S. and A.K.; methodology, J.S. and A.K.; validation, J.S. and A.K.; investigation, J.S. and A.K.; writing-original draft preparation, J.S. and A.K.; writingreview and editing, J.S. and A.K.; visualization, J.S. and A.K.; supervision, J.S. All authors have read and agreed to the published version of the manuscript.

Social distancing has been a critical public health measure for the COVID-19 pandemic, yet a long history of research strongly suggests that loneliness and social isolation play a major role in several cognitive health issues. What is the true severity and extent of risks involved and what are potential approaches to balance these competing risks? This review aimed to summarize the neurological context of social isolation and loneliness in population health and the long-term effects of social distancing as it relates to neurocognitive aging, health, and Alzheimer's disease and related dementias. The full scope of the underlying causal mechanisms of social isolation and loneliness in humans remains unclear partly because its study is not amenable to randomized controlled trials; however, there are many detailed experimental and observational studies that may provide a hypothesis-generating theoretical framework to better understand the pathophysiology and underlying neurobiology. To address these challenges and inform future studies, we conducted a topical review of extant literature investigating associations of social isolation and loneliness with relevant biological, cognitive, and psychosocial outcomes, and provide recommendations on how to approach the need to fill key knowledge gaps in this important area of research.

Introduction Higher education institutions in Ireland, as elsewhere, are facing severe challenges on a number of fronts. While, on the one hand, increasing enrolment figures coupled with dwindling state support leaves them facing severe financial challenges, on the other, the very idea and fundamental role of higher education is being challenged through the shifting nature of knowledge and the changing needs of an increasingly complex global society. Of course, higher education has always been and remains a highly contested concept. From liberal conceptions derived from nineteenth century ideals of 'knowledge for its own sake' to the new language of the 'knowledge economy' emphasising competencies, enterprise, skills and outcomes , debates on the role, quality and relevance of higher education continue apace. The exigencies of the contemporary globalised knowledge economy tend to favour a more vocational function for higher education, with its role now almost universally seen to lie in equipping students with the skills to work in and promote this global economy. Yet, despite being equipped to be employed within it, how well do our students and graduates understand the workings of this economy? How conversant are they with its social and political exigencies and effects? And, more to the point for us as teachers, mentors and sociologists, how well are we equipping our students to critically engage with, mediate and, if necessary, challenge the global system in which they live and work? In this article I argue that students and graduates are increasingly ill-equipped to comprehend and critically engage with the multi-faceted challenges posed by our contemporary, networked economy. The reason for this, I argue, is our persistent reliance on an outmoded, apolitical 'us' and 'them' dichotomy within our universities which relegates so-called 'development' or 'third world' issues to the margins of our teaching curricula as we concentrate on issues which affect 'us' and retain a stubborn myopia in relation to their complex, intertwined relationship with 'them'. I go on to argue that the dominant concept of development education or global citizenship education as promoted within the development sectorthe sector through which many students gain some insight into this complex worldis also limited as, equating global citizenship and activism with consumerism, it depoliticises and individualises acts of engagement, thereby eroding the potential for collective transformative action. I develop my argument as follows. In the following two sections I discuss the changing role of higher education in two respects. First, I examine its changing role in the context of the insertion of national economies into the global capitalist economy. Drawing briefly on my own work within the Democratic Republic of the Congo , I highlight the role of the global economy in fostering and consolidating poverty, insecurity and violence in the region. I also highlight the power of global networks of solidarity and activism in this regard. In the second section, drawing on the rich theoretical work of both educational theorist Ronald Barnett and critical theorist Robert Cox, I explore the thorny yet critical question as to what is 'higher' about higher education in this context, concluding that it as much about developing the skills, competencies and capacities to critically engage with the politics of the global economy as it is about securing the core competencies to operate within it. Within the challenging context of the corporatisation of higher education, I go on to argue that this poses a challenge to us as sociologists. I then go on in the third section to draw on the results of two surveys to highlight the prevalence of an apolitical, individualised 'us' and 'them' understanding of global inequality among Irish students. Drawing on relevant excerpts of the strategic plans of the seven universities in the Republic of Ireland together with their graduate attributes as available, I demonstrate how the survey findings mirror the conception and approach to global citizenship across the university system more broadly. The individualisation and commodification of the concepts of citizenship and activism within the development education sector is the focus of the fourth section leading on to my conclusion where I argue for a renewed focus on collective political activism and agency within our curricula in this context. --- Globalising economies, states, societies and education The story of the remarkable turnaround in the Irish economy during the 1990s and early 2000s has now been well rehearsed. While the causes of this transformation are still the subject of much debate, there is agreement that one key factor driving country's economic success was the proactive role played by the state in the attraction of almost 1,000 foreign-owned companies . While political stability coupled with a range of favourable tax incentives offered by the state combined to produce a climate attractive to this investment, a key contributing factor was also the high-level educational skills and knowledge base nurtured through a rapidly expanding higher education sector . The influential strategy document produced in 1996 by Forfás, the policy advisory and coordination board for industrial development, science and technology, emphasised that the main determinant of the competitiveness of the enterprise sector was the skills and knowledge of the workforce. As White notes, 'The [Forfás] report was indicative of how much the education system had become central to the success of the state's industrial policy'. Thus, higher education, with its role in advancing core knowledge, had come to serve as a key driver for Ireland's insertion into the global economy. While certainly bringing significant opportunities and benefits to many, the congruence of economic globalisation with growing inequality is now well recognised. As Mittelman notes in this context, 'life is marked by a deepening divide between rich and poor'. The specific case of the DRC, a country rich in natural resource wealth yet paradoxically, through the activities of a range of global networks of extraction and accumulation, actually one of the world's poorest, serves as just one illustration of this trend. While the total mineral wealth of the DRC has been estimated at US$ 24 trillion , thereby making it potentially the most wealthy country in the world, it ranks among the poorest. Its gross national income is just $444 per capita and it is ranked 186 out of 187 in the United Nations Human Development Index . Why so? The explanation appears to lie in the global exploitation and expropriation of the country's wealth which, while benefitting a national and global elite, does so at the expense of the rights and well-being of the vast majority of Congolese citizens. A United Nations report on natural resource exploitation in the country is illuminating in this regard. The report cites 85 multinational corporations, many of whom are well-known reputable firms employing our own graduatese.g. Barclays, De Beers, Anglo Americancolluding with local criminal networks in resource extraction . With rebel forces backed by many of these corporations with an estimated 2.6 million people remaining internally displaced as of 2013 i ), retaining an armed stronghold on national resources, the DRC exemplifies the violently dislocating impact of the exigencies of the ever expanding yet ever demanding global economy. Yet, on the flip side, international collective action in collaboration with local actors also reveals the importance and efficacy of global collective activism on these issues. In Europe for example, pressure from 59 global activist groups which, in September 2013, called specifically on the European Commission to introduce legislation to stop global corporations' exploitation in the region, resulted in some regulation in this area with the introduction of a system of self-certification for companies earlier this year ii . Meanwhile in the US, pressure from global activist coalitions such as Global Witness or the Enough Project has led to a series of legal provisions which now require corporations to report on and provide evidence that their raw materials and supply chains are not linked to the Congolese conflict. The Congolese example, therefore, serves to illustrate both the negative and the positive effects of the global economy. While, on the one hand, the drive for profit at seemingly any cost is resulting in egregious levels of immiseration and violence for wide swathes of the country's population, on the other, and in reaction to this, this has given rise to global activist coalitions which, harnessing their collective power, have had and continue to have a significant transformative influenceon both policy makers and on citizens more widely. This section has set out to outline one of the fundamental contradictions in higher education today. While universities are key in promoting and fuelling the global economy, the evidence is now indisputable that the exigencies of this economy are contributing to growing inequality, poverty and, in many instances, violence. So where does this leave us as educators, teachers and mentors? What is the role of higher education in this context? In the following section I consider these questions in the context of broader educational theory and the role of public sociology in this regard. --- What is 'higher' about higher education? Accepting that higher education is a highly contested concept and posing the question 'what is higher about higher education?', educational theorist Ronald Barnett argues that three irreducible characteristics remain at the core of higher education, however conceived. First, higher education is about building 'higher order' concepts and perspectives rather than the acquisition of low level facts and information. These 'higher order' concepts and perspectives, having built upon preceding concepts over time, offer explanatory frameworks for the lower level facts and information. Second, in the post-modern era where the universality of knowledge has been challenged and the search for the ultimate 'truth' abandoned, higher education has become about critical reflection and reflexivity. Thus, as Barnett puts it , 'there is no end point in thought and action, only conversation… and true conversation means taking seriously the critical viewpoints of others, perhaps even entering a different world held open by those others.' So how do these characteristics apply to the quality and relevance of learning within contemporary higher education institutions? According to Barnett 'students on courses of higher education should be encouraged to enter into a continuing conversation, be prepared to take on the point of view of others and become comfortable in conducting that critical dialogue with themselves.'. Thus, students need to be supported and encouraged in developing faculties to critically mediate, negotiate, and critically engage with the increasingly complex world in which they live. It is useful in this context to examine in more detail what is understood by and entailed in critical education at this important historic juncture. The work of Robert Cox is particularly apposite in the light of the globalised shifts within higher education. Cox's critical theory approach, first developed within his work in the field of International Relations , emphasises the importance of standing outside the prevailing order and interrogating how this order came about, together with how and by whom it comes to be reproduced. In particular, Cox focuses on the nature and origins of institutions and their social relations, examining how these function and how they can change . Drawing on Cox's work, Dale and Robertson argue that a critical approach to contemporary education entails an engagement with the wider challenges posed by contemporary globalised, and globally driven, transformations. Specifically they argue for a 'need to get beyond framings and analysis of education policymaking that continue to assume education to be a national enterprise taking place within what has historically been called the "education sector"'. This is because the persistent appearance of national autonomy serves to conceal the real sources of problems and powerwith many of these extending far beyond national borders. This is all complicated however by the increasing corporatisation of universities which, struggling with declining budgets and intensified competition, are responding with market-based solutions, moving them closer to the realm of private corporations than publicly engaged institutions. In this context Henry Giroux, a staunch opponent of such a move, identifies within the corporatist culture thus engendered 'an ensemble of ideological and institutional forces that function politically and pedagogically both to govern organisational life… and to produce compliant workers, depoliticised consumers and passive citizens' . This has particular resonance with respect to the concept of community engagement or citizenship promoted within universities in Ireland and Giroux's assertion that 'education must be treated as a public good and not merely as a site for commercial investment or for affirming a notion of the private good based exclusively on the fulfilment of individual needs ' is particularly apposite in this context. Another sociologist concerned by this trend is Michael Buroway who, in his eloquent Presidential Address to the 2004 American Sociological Association, posed the following questions: 'Is the market the only solution? Do we have to abandon the very idea of the university as a "public" good?' . In this context, Buroway called for a renewed interest in a 'public sociology'a sociology which moves outside the rigid confines of academia to engage with society in explicitly public and political ways. In this regard, as Buroway notes, 'students are our first and captive public'. If we are to serve as public sociologists therefore, we need to move beyond traditional disciplinary and institutional confines to engage in collective public debate and, where necessary, action with our students and with others, on contemporary global issues. In short, higher education in a globalised era is not just about feeding and fuelling the global economy, it is about critically engaging with the politics of this global economy, either as individuals or collectively. In essence, higher education is about fostering critically engaged global citizenship. In the following section, I attempt to examine the extent to which this is taking place within Irish universities. --- Global Citizenship within Ireland's Universities While, given the dearth of data available, it is difficult to make any definitive assessment of the level of global citizenship education and activism within our universities, in this section I draw on two different sources in an attempt to explore this in more detail. First, I draw on two surveys of university students, conducted in 2006/7 and 2012 respectively, to examine both students' understandings of the causes of global inequality and their preferred forms of activism in this regard. Second, I explore the concepts and understandings of global citizenship or engagement as set out in the respective strategic plans of the seven universities in the Republic of Ireland as well as, where applicable, within their lists of graduate attributes. Two surveys, both sponsored by Irish Aid and aimed at eliciting information on student attitudes towards development assistance broadly, were conducted in 2006/7 and 2012 respectively. The survey conducted in the academic year 2006/7 was conducted in a classroom setting across a range of academic departments and disciplines across the seven universities in the Republic of Ireland. A total of 900 useable surveys were taken and a gender balance was ensured. For our purposes here, two findings in particular are of interest. The first concerns students' understanding of the causes of global poverty iii . In a question asking students to rank, in order of importance, 14 different reasons provided for poverty in developing countries, the top three reasons ranked as important or very important appear internal. These are, respectively, 'a lack of education and training' , 'corruption' , and 'war' . The top ranked cause again appears in the following question which asks students to rank a set of judgement statements concerning poverty in developing countries. In a list of nine somewhat arbitrary judgement statements provided , the top three statements scoring an 'agree' or 'totally agree' rank are 'poverty in developing countries exists because they lack education and training' , 'the gap between the rich north and the poor south in the world is unacceptably large' , and 'the debts of developing countries must be abolished' . These findings indicate that the root of the issue appears to be a traditional view of lack of education within countries. However, the structural issue of debt is also highly ranked. Tellingly however, a statement that 'the wealth of the North is based on the poverty and exploitation of developing countries' attracts an 'agree' or 'totally agree' ranking from just 48 per cent of student respondents while 44 per cent either 'disagree' or 'totally disagree' with this statement . The second issue of interest to us is students' views on how they themselves might make a difference. Two questions are of interest in this regard. The first asks 'how do you think you can help people in poorer countries' and provides nine options. This appears to be a tick box option and multiple options can be ticked. The three top scoring options reflect an individualistic, charity-based approach and are, respectively, 'buy fair trade goods' , 'contribute to charities' and 'volunteer' while the lowest ranked options reflect a more political, collective action approach and are 'sign a petition' , 'become involved in a church or campaigning groups' , and 'tourism or travel to a developing country' . These findings are somewhat mirrored in the following question which asks students to rank 'ways in which you can most effectively contribute to reducing poverty in developing countries'. The top first choice option by a significant amount is 'contribute to charity' , the second is 'pay taxes' and 'buy fair trade' or 'work in a developing country' both come in at joint third . In contrast, and somewhat contradicting the findings above, 'travel to a developing country as a tourist' gets 0 per cent of first choice preferences, while the more political options of 'become involved in church or campaigning groups' and 'support socially responsible businesses' attract just 2 and 4 per cent of first choice preferences respectively . Taken together, these findings appear to point towards both a prevalence of an 'us' and 'them' dichotomised understanding of the causes of underdevelopment and an individualised, charity based approach to its solution among Irish students. The findings appear to support the conclusion of the authors that 'there is little evidence of any sophisticated understanding of development issues, or any capacity to rank different explanations of development ' together with their observation that there is a need 'to focus more on creating a better understanding of the causes of underdevelopment and the structural factors relating to interactions between wealthy and poor states. ' . A second survey of third level students was carried out in 2012. This survey, again funded by Irish Aid, commissioned by the Development Education agency Suas and administered by the consultancy firm, Amárach Research, was an online survey of a sample of 1,000 students across both universities and Institutes of Technology with findings broken down by gender, age, social class, region and type of institution . Although a much broader survey than the previous, this recent survey included a number of questions which mirror those of the 2006 survey and are useful to our purposes. Again, of interest here are questions relating to student understandings of causes of underdevelopment and their preferences for activism. Within the former category, the top ranked preferences among university students in relation to a question on the reasons why some countries in the world are poor are 'corruption' , 'war/conflict' , and a 'lack of education' . Somewhat paradoxically, although the fourth highest ranked cause is 'better off countries taking advantage of poor countries' , the lowest ranked cause is 'international trade and economic policies' . These responses therefore show little difference in attitudes and understanding from those of the 2006 survey, with little apparent understanding of the globalised nature of poverty. As with the 2006 survey, respondents were also asked to indicate levels of agreement or disagreement with a series of statements. The specific statements provided however did not mirror those of the 2006 survey. Of the statements provided, 85 per cent of university students agreed or strongly agreed with the statement that 'sustainable development can't happen without political, economical and structural change'. Eighty per cent agreed or strongly agreed that 'the actions of individuals can have repercussions in one own countries as on the other end of the planet', and 72 per cent agreed or strongly agreed that 'it is important to tackle poverty in the developing world because we belong to the same community'. The statements university respondents least strongly agree with are that 'the third world should deal with its own problems and not look to the first world for help' and that 'making societies better is the responsibility of government agencies and/or NGOs, not mine' . These findings are particularly interesting in that they appear to contradict the findings in relation to understanding of causes of poverty in that they do indicate an awareness of global interconnectedness and an attendant collective responsibility to tackle global inequalities. The 2012 survey also includes a question on global activism. In response to a question on the effectiveness of actions that Irish people can take to support developing countries, the top three ranked preferences among university students are, respectively, 'volunteering overseas' , 'volunteering to promote development' , and 'buying fair trade products' . At the other end of the scale, the lowest ranked preferences are 'lobbying the Irish government' , and 'taking part in a public meeting / demonstration' . These findings mirror those of six years previous in that they demonstrate a prevalence of an individualised, apolitical approach to activism with an emphasis on volunteering . Although any overall conclusions in relation to students' understandings of both causes of underdevelopment and their role as global citizens in this context must necessarily be tempered due to the dearth of longitudinal, systematic research in this area, the relevant findings from these two surveys do indicate a relatively poor understanding of the globalised roots of localised pockets of poverty, inequality, conflict and violence. Moreover, they strongly indicate an individualised, apolitical approach to activism in this area, with activism reduced to individual acts of charity and/or consumerism. From where do these attitudes and understandings emanate and what role do our universities play in this context? This is the subject of the following subsection. Up to this point I have attempted to a) demonstrate the inextricable interconnectedness between increasing integration with the globalised capitalist economy and growing poverty, inequality, conflict and violence in many locations around the world, and b) the role of higher education in not just fuelling this economy with skilled graduates but also about fostering a critically engaged global citizenship among these same graduates. The survey results above indicate significant shortcomings in this latter endeavour. In an attempt to understand why this is so, I now explore the concepts and understandings of global citizenship or engagement as set out in the respective strategic plans of the seven universities in the Republic of Ireland as well as, where applicable, within their lists of graduate attributes. My assumption is that these institutional conceptualisations inform teaching and learning within these institutions, thereby influencing student and graduate attitudes and actions. While again, owing to the opacity and relative ambiguity of the language employed within these documents, this is necessarily an imprecise exercise, it does nonetheless highlight some interesting and illuminating overlaps with the findings from the survey research discussed above. The key concepts as employed within each university are examined in turn below . --- Dublin City University DCU's Strategic Plan, entitled 'Transforming Lives andSocieties' includes a section on Graduate Attributes which it claims are 'integrated into all our degree programmes' . These, it is asserted, 'aim to shape our students into adaptable, rounded individuals who are Creative and Enterprising, Solution-focussed, Effective Communicators, Globally-aware, and Active Leaders. . While the Strategic Plan stops short of any further elaboration, the institution's website includes a dedicated section on these. Here the 'globally-aware' attribute is interchangeable with 'globallyengaged' and this is defined as follows: 'to value tolerance and cultural diversity, and to be committed to civic engagement' iv . Elsewhere again v 'civic engagement' is described as comprising three elementsuniversity-community dialogue; incentives and resources for educational growth and development in the wider community; and sustainability. Although the 'wider community' in this context is not specified, a global component is not explicitly noted. Global engagement or awareness therefore appears limited to personal values of tolerance and respect, mixed with volunteerism. --- National University of Ireland Galway NUIG's Strategic Plan asserts a commitment to 'a holistic educational and life experience' which fosters 'a wide range of life skills in our students, including vocational, sporting and cultural skills, by providing service learning and volunteering opportunities and through supported extra-curricular activities' . The Plan sets out eight aims for its undergraduate teaching . The fifth of these is the 'wholehearted commitment by staff and students to 'good citizenship' through active engagement in civil society'. There is, unfortunately, no further elaboration on what is meant by this 'good citizenship' and 'active engagement' although the University does once again note its commitment to volunteering and service-learning . The holism in learning appears closely linked with volunteerism here also therefore. --- National University of Ireland Maynooth The Strategic Plan of NUIM speaks of 'a distinctive Maynooth model of liberal undergraduate education, forming graduates competent in their chosen disciplines, with the fundamental intellectual skills of analysis, reflection and critical thinking, and fostering an appreciation of the breadth and richness of human knowledge and culture' . Objective eight of the nine curricular objectives set out in the plan talks of 'service learning and civic engagement opportunities' again in the context of work-based learning. No further elaboration on this is provided. --- Trinity College Dublin TCD's Strategic Plan makes reference to both 'engaged citizenship' and 'volunteering, public service and civic engagement' although no specific reference is made to global citizenship or global engagement in this context. Engaged citizenship includes the dissemination of research as well as bringing 'major international thought-leaders to Ireland for public discussions'. --- University College Cork UCC's Strategic Plan -entitled 'Sustaining Excellence' and highlighting its role as an 'engaged university', has possibly the most to say in relation to global citizenship. Noting the University's commitment to 'adopting a global perspective in all of our activities' it asserts that 'the institution's pan-university Centre for Global Development provides a context in which we recognise that global challenges can only be addressed in collaboration between the developed and developing worlds.' . What forms these collaborations take remains unexplored. However, civic engagement of the form highlighted within the other universitiesi.e. volunteeringis also noted. 'Closer to home, we are actively engaged with our local community through staff and student partnerships and volunteering activities with a range of social and civil society organisations.' . --- University College Dublin UCD 's Strategic Plan , interestingly entitled 'Forming Global Minds', makes explicit reference to the role of higher education within the global economy at the outset, strongly echoing the vocational role attributed to higher education as discussed earlier in this article. The Plan notes that Ireland can and should lead the way in developing the higher-education system that produces the new graduates to create, adapt and thrive in the global economy. The universities are central to ensuring Ireland continues to advance this objective. Investing in universities means investing in new and more knowledge and innovation capacity, in the production of a competent and flexible labour force. Within this framework UCD sets out three Graduate Attributes , the third of which is 'globally engaged'. This includes 'an appreciation of the richness and diversity of human cultures… an awareness of his or her responsibility as a global citizen [this remains undeveloped]… and a commitment to equity, inclusion and diversity in his or her work and life context'. --- University of Limerick Finally, UL's Strategic Plan , which seeks 'to produce critical-thinking, creative, innovative and entrepreneurial graduates who will be leaders in society and will exhibit strong ethical, cultural and community-focused values.' , asserts that it will 'provide students with experiences that instill the spirit of European and global citizenship.' . As elsewhere however, what precisely is meant by 'the spirit of European and global citizenship' is left to the reader's imagination. Elsewhere within the plan reference is made to the 'social and cultural role of universities' , with universities seen to 'play a key role in 'the development of students as imaginative critical thinkers and socially responsible citizens.'. This theme of 'responsibility' again appears within the six Graduate Attributes vi where it is defined as: Adopting a responsible, civically aware and engaged approach to their [students'] actions and decisions at work and in society; exploring issues of corporate and social responsibility, ethical practice and sustainability; adopting a global perspective, recognising both the local and global impact of decisions and actions; being personally and professionally responsible, orientated towards making substantial and positive contributions to society. What is striking from this admittedly limited exercise which attempts to explore dominant conceptions of global engagement / citizenship / social responsibility across the university sector is the similarity between university conceptions and those of of students, as reflected in the two survey findings outlined above. Although in some cases reference is made to global interconnectedness and corporate responsibility, the overwhelming emphasis is on personal responsibility and volunteering. This echoes the conception of global citizenship promoted more broadly across the OECDa conception which Jefferess critiques as a new form of imperialism which normalises the conditions of privilege which allow some to be in the position to help by defining the global citizen as one who helps an unfortunate 'Other'. With universities, enmeshed within global corporate networks, thus failing to challenge these conditions of privilege and produce critically and politically engaged global citizens, this task is being increasingly entrusted to the informal development education sector. In the following section I argue that this sector, with its own its own resource constraints and pressures vii , has its own limitations in this regard. --- Activism as consumerism: The Limits of Development Education I have already argued that our formal higher education system proves ill-equipped in preparing students to critically engage in the globalised world in which we live and operate. Given this scenario, increasing emphasis has been placed, by Irish Aid and a range of NGOs, on popularising 'development' issues more broadly through 'Development Education' or 'Global Citizenship Education' . Indeed, many third level institutions now have some form of student 'development' association, public debates on global issues are common, and organisations like Suas viii frequently run short development courses. Given its relative importance to third level students therefore, in this section I examine this concept and its associated project more closely. My overall argument is that, while DE/GCE certainly has merit in highlighting the interconnectedness among people and global structures, as a tool for global political awareness and agency, it remains somewhat limited. This is because, in equating global citizenship and activism with consumerism, it depoliticises and individualises acts of engagement, thereby eroding the potential for collective transformative action. A good place to begin this argument is perhaps with an examination of different definitions of DE/GCE and what it means in action across a number of its principle proponents. We begin with a definition from Oxfam. Global citizenship education aims to empower pupils to lead their own action. Along with the knowledge and values that they have gained from learning about global issues, pupils need to be equipped with the necessary skills to give them the ability and confidence to be pro-active in making a positive difference in the world. Source: http://www.oxfam.org.uk/education/global-citizenship/what-is-globalcitizenship Oxfam's target appears to be a somewhat younger generation and includes three main componentsthe acquisition of 'knowledge' and 'values' on global issues and also an action component. Moving on to Trócaire, its target is also clearly a younger generation and their educators, and the emphasis is more on reflection and interaction on global connectionsa more active form of knowledge acquisition, together with action. Trócaire's Development Education work engages children, young people and educators through a process of interaction, reflection and action…. They are supported to make connections between their own lives and international social justice issues, and be empowered to make a positive difference in the world. Source: http://www.trocaire.org/education/development-education Somewhat similarly, Irish Aid also talks about making connections but also stresses individual rights and responsibilities, proposing the purchase of Fair Trade products as one example of individual action that can be taken. Making connections between how we live in Ireland and how this impacts on the lives of people in the developing world is at the heart of development education. Buying Fair-Trade products for example can make a real difference in the lives of producers in developing countries. Development education programmes provide an opportunity to challenge ourselves and find out more about our rights and responsibilities as global citizens contributing to change -act locally, think globally." The focus on the younger generation may be simply reflective of the fact that much of the focus and resources of DE/GCE in Ireland is at primary and second level. The reasons for this remain unclear and, given it is now universally acknowledged that reflection, analysis and understanding is a life-long process, certainly merit fuller investigation. This falls beyond the remit of this article however and, for now, I want to focus on the other striking aspect emerging from this brief reviewthe individualisation and, as we will see, increasing commodification of agency and action. --- Activism as consumerism: The commodification of agency One of the key distinctions between DE/GCE as an educational project and its more specialist, academic counterpart 'Development Studies' which also explores global interconnectedness, is the inclusion of a citizenship or action component in DE/GCE ix . As we have seen within Irish Aid's definition as well as within student survey findings, one form of action proposed is the purchase of 'Fair Trade' products. Fair Trade has become increasingly popular in recent years. While certainly meritous in both drawing attention to inequities within the global trade system and reportedly guaranteeing a better price for producers, Fair Trade is somewhat problematic on that it reduces activism to consumerism. While no doubt assuaging some individual consciences, it fails to tackle the overall structural issues in the system. Moreover, its benefits to producers remain contested While it is difficult, indeed churlish some might say, to criticise charity and seemingly well-meaning attempts to raise funds for essential development purposes, we need to think long and hard about the long-term impacts of such forms of agency and 'activism' on our understanding and 'ways of being' in the globalised world. The commodification of agency epitomised by the 'shopping to save the world' approach is symptomatic of the primacy of markets over social and political life. Difficult questions need to be asked as to whether such an approach can or will ever address the drivers of global inequality. It is important to be careful that, through our own actions, both as consumers and educators -as 'global citizens', we do not end up legitimising and reinforcing an inherently inequitable, exploitative and unsustainable system. As Danai Mupotsa, a PhD student following the phenomenon from South Africa, observes I just don't buy the "buy, buy, buy" approach to making a better world. The "Africa" issue of Vanity Fair [a special issue produced in July 2007] is selfcongratulatory and problematic in my estimation. Yet, while I have a decided position on this campaign, as a young African feminist and scholar, finding the language to critically engage with Product Red and its implications has proved challenging. Analysing the celebritisation of advocacy and activism in Australia, April Biccum argues that rather than promoting a sense of political literacy, this new approach is narrowing the definitions of 'poverty' and 'development' and 'modelling a form of entrepreneuralised activism that promotes market-based solutions to development and is aimed at producing neoliberal subjectivity' ). At a time when official aid flows are dwindling and private investment now accounts for over 80 per cent of all aid flows , we have indeed entered a blurred and increasingly blurry world where it can certainly be difficult, and indeed perhaps damaging, to engage too critically with contemporary trends. Yet, to put it bluntly, we are not going to be able to buy ourselves out of the mess that, through our global economic and political networks of accumulation and expropriation, we have created and continue to perpetuate. To suggest that we can is both intellectually lazy and politically irresponsible. To be clear, I am not arguing here that there is no place for ethnical consumerism, but I am arguing that this will not adequately tackle the global structural injustices created and reproduced through the global network economy which is, in part, fuelled by our own educational institutions. This begs the question where do we go to from here? With the atomisation and individualisation of agency promoted by contemporary DE/GCE campaigns, the challenges seem vast and a pathway out impossible. Yet, we need to remember of the different forms of agency, activism and citizenship possible. In this regard, the recent events of 2011 and beyond prove both inspiring and instructive. --- Beyond activism as consumerism: 'Networks of outrage and hope' Few can forget the momentous political events of 2011 where, beginning with the toppling of the dictatorship of Tunisia's Ben Ali in January and moving on to Egypt, the rest of the Arab world, Spain, London and New York, people mobilised to express their rejection of and outrage at the injustices meted out by governments placing their own interests, together with those of the global economic networks in which they were embedded, above the interests and rights of their citizens. Manuel Castells eloquently captured the moment when he described how collective movements of 'ordinary' people moved the world from a darkened time of economic distress, political cynicism and personal hopelessness as they 'turned fear into outrage and outrage into hope for a better humanity ' . Ireland also played host to such movements. In October 2011, the global Occupy movement spread to Dublin and on to Cork, Limerick, Galway, Waterford, Letterkenny and Athlone, opening up a much needed space for debate, deliberation and articulation of alternatives to the now discredited global system. And possibly the most powerful and inspiring example of all is the example set by the citizens of Ballyhea in North Cork who, bravely, zealously and literally marching against the consensual grain of Irish rural social life have, every Sunday since November 2011, marched in protest and anger at the bondholder bailing outs. As any Irish rural resident knows , such an act takes tremendous courage and determination. It demonstrates a solid courage of convictions and is all the more inspiring for it. These real contemporary events are an important reminder that we are not limited or indeed isolated to the 'power of one' in our actions and activism -as implicitly promoted by DE/GCE proponents. There is no better time than this critical moment in global history to re-examine, through our teaching and curricula, what is meant by 'the political'. In this regard, given recent tumultuous global events, Chantal Mouffe's assertion that '…the political is from the outset concerned with collective forms of identification; the political always has to do with the formation of an "Us"...' merits some reflection. Activism and citizenship is not an isolated, individual act. And, in a world where power is concentrated in globally networked chains of extraction and accumulation, a countervailing collective power is required. Bearing in mind that the fundamental power struggle in today's world is the struggle for meaning, understanding, and 'truth' in people's minds, it behoves us as teachers and public intellectuals to equip our students with the capacities to interrogate, critique, re-vision and re-imagine alternative and multiple meanings, understandings and 'truths'. At this critical juncture in our collective history , it is perhaps an opportune moment to reflect on what such a 'collective forms of identification' might mean in relation to our teaching, how they might be forged, and what role they might come to play in moving beyond consumer activism and shopping to save the world to a more transformative global citizenship as a way of meaningfully, critically and constructively engaging in our globalised world. --- Conclusion There can be no doubt that for us, as educators and as global citizens, we live in extremely challenging times. The evidence has mounted and is now indisputable that the global system in which we live, work and spend is not just economically unsustainable, it is also socially and politically so. If we are to take the consequences of this seriously and if we are to engage our students in doing so also, this demands profound changes in how we live our lives, how we relate to each other, how we relate to our structures of power and their representatives, and how we educate our students to operate in this context. These challenges are all the greater because we are taking them on from institutions which are feeding and fuelling this globally dislocating system. With the waning and ultimate disappearance of the healthy and robust debates of the 1980s on vocationalism versus education as priority within higher education, the demand from higher education institutions today, as represented in in the media and in popular debate, is that we produce skilled yet intellectually sterile graduates ready for the global production line. As then Minister for Education and Skills Ruairi Quinn, TD asserted earlier this year, The third-level sector has made an enormous contribution to the challenges that this country has faced in the last number of years. Our highly skilled workforce is the key to increasing Ireland's competitiveness for foreign investment and for the growth of indigenous industries that will lead our country out of recession. April 1 st , 2014 -Address by Minister for Education and Skills, Ruairí Quinn T.D., at the USI Conference, Athloneemphasis added. As reflected here and as outlined earlier in this article, the dominant vision for higher education in contemporary Ireland, educational theory to the contrary, is to substitute critical enquiry for skills development; education with training; and active questioning and exploration with passive absorption and assimilation. As such, it forecloses the opportunities and imaginaries of students and graduates and it minimises our role as teachers and mentors. If, as Mamdani in a somewhat different yet politically relevant context asserts, we are citizens and not subjects -therefore active and not passive, we need to reclaim the concept of global citizenship within our institutions. We need to remind ourselves and our students that global citizenship entails critically interrogating the dominant narrative -always asking why. It entails acting accordingly -not as atomised, alienated individuals, but together, to collectively imagine, design and begin to build a more sustainable, just and equitable global ix I am grateful to Eilish Dillon, Kimmage Studies Development Centre, for helping clarify this point. x Fair Trade argues that it benefits farmers by providing better prices, decent working conditions, local sustainability, and fair terms of trade yet the few academic studies conducted in the area have failed to uncover any empirical evidence for this claim . xi See http://www.red.org/en/shop, accessed September 14 th , 2014. xii A percentage of profits from the sale of 'Red' goods goes to the Global Fund for HIV/AIDS. --- society. And, most of all, it entails taking responsibility for our own actions and critically interrogating others, at all levels in politics and society, on theirs.

Patterns and causes of poverty and underdevelopment have shifted considerably over the last two decades. Growing global inequality within and between nations is now inextricably linked to both the exigencies and impacts of the global economy. In this article I argue that our universities, while developing students' core skills and competencies to work within this global economy, fall short in providing them with the contextual competencies to critically engage with the multi-faceted challenges posed by it. In other words, our universities are failing to produce critically engaged global citizens. As universities opt to leave this contextual educational component to NGOs within the development sectora sector with its own challenges and limitations -I go on to argue that global citizenship education as popularly promoted within this sector is also limited. In equating global citizenship and activism with consumerism, it depoliticises and individualises acts of engagement, thereby eroding the potential for collective, transformative action. I conclude by urging that, as teachers, mentors and public sociologists, we reclaim global citizenship as a collective project engaged in the political struggle for meaning and 'truth' within our classrooms and institutions.

I. INTRODUCTION The area of Human-Artificial Intelligence interactions research considers the psychological and social interactions, as well as the methods used to facilitate engagement between AIs and humans as though it were a human-to-human interaction. Over the years, conversational AI has evolved and become more useful to daily work. Since part of the conversational AI role and competence is to seamlessly emulate the likeness of humans, the relationship between the two should present lesser gaps and ethical concerns [1]. These interactions are usually achieved by the use of social robots [2] which are AI systems designed to interact with humans and other robots whiles conforming to rules attached to social behaviours. In more recent times, one of the most sought-after AI technologies is chatbots, which have been integrated on many software platforms. From Facebook's platform which allows The associate editor coordinating the review of this manuscript and approving it for publication was Jerry Chun-Wei Lin . developers to create bots, to Slack's Kip, which helps to order office supplies right from your conversational channel with your co-workers [3]. Today, conversational AIs are used by a large part of the population: the world population uses 3.25 billion digital voice assistants in 2019 [4]. Notably, in this COVID-19 season where it has become necessary for less human-to-human interactions, AI's come in handy for educational institutions, entertainment, and trade. Our current society cannot do away with the exponential growth in the fields of intelligence and technology [5]. Unfortunately, black people fall in the minority when it comes to technologies such as facial recognition. However, the risk of not taking opportunities and not using technologies due to fear seems to grow, especially in most parts of Africa [6]. Since the technologies would keep evolving it is best to intensify knowledge into their creations, use them and act to mitigate their risks [7]. It is necessary to make sure AI applications are guided to fit into the cultural and ethical values of the future society [8]. Questions arise as to how AI-based software be regulated and certified based on compatibility with social and technical norms. Our paper focuses on the concerns that are being raised about the interactions between humans and AIs and the current and future needs of emotion recognition. This involves understanding the role that it plays in our future society considering all stakeholders and societal factors to be able to cater for regulatory issues that may arise. We highlight the major gaps in Human-Computer Interactions with regards to emotion detection in Section 2. We then focus on mitigating some of the biases that occur during the development and deployment of the machine learning models. We provide a better model which focuses on model pre-processing and post-processing stages by incorporating an Audio-Frame Mean Expression. The key methods used in building the Convolutional Neural Network ML model for both image and audio data are described in Section 3. This includes data balancing, pre-processing, and augmentation processes used to mitigate bias in the model. Section 4 provides detailed discussions and explanations based on the results from section 3. It also justifies the reasons for considering image and audio datasets and highlights the importance of the new approach used in mitigating bias. Finally, a summary of the entire paper, findings on emotion detection, and recommendations for future work are captured in section 5. --- II. RELATED WORK Emotions are one of the key drivers in human social life [9]. Humans tend to develop emotions for human and sometimes non-human entities, including robots and interactional systems. By this, scientists began designing and creating robots to assume the physical embodiment and image of humans' nature. Constant interaction between AI and humans seems to create a special attachment between the two parties. Expressions of some form of emotions could further lead to emotional trust in human-AI interactions. Ekman [10] proposed six major emotions of interest in modelling AI's, which include fear, anger, disgust, happiness, sadness, and surprise. In 2017, a prototype was created to detect these major emotions including sarcasm from posts made by Facebook users [11]. The hybrid approach which included using the substantivized terms, similarity measure, polarity correction, and pattern analysis allowed for the detection of emotions with grammatically correct sentences. Large image and text-based datasets made available from companies such as Microsoft, IBM, Reddit, and Twitter have been used in several Machine Learning research to create diversity and help improve existing models. An instance is the automatic tagging of prosodic phrases which are segments of speech that occur with a single pitch was employed to extract natural language data from real-life conversations using the support vector machine model [12]. This approach aided in the segmentation of words and phrases including nonverbal content. Achieving a 52% accuracy using this Natural Language Processing model, the result showed that even with the seven major emotions, non-verbal sounds played a crucial part in achieving high accuracies for emotion detections. Faces or facial expressions have also been one major and effective way of detecting emotions. It exposes the state of mind of an individual and could also help in determining other social and mental characteristics or responses [13]. When considering only speech emotion recognition, physiological stress response seems to be key in order not to misunderstand the intentions of the speech. Acculturative stress can also be seen as similar among people of the same cultural group [14]. Moreover, since facial expressions are also often similar among people of the same cultural group, it is usually easier for understanding and interpretation of emotions shown by individuals of similar cultures. A new system model took into consideration two people of a small social group to identify the patterns that affect nonverbal interactions [15]. In doing this, the system did not only take into consideration the characteristics of the individual but also paid particular attention to the social environment where this interaction is being held [15]. The approach goes beyond reliance on only the thoughts, emotions, and influence of a person's interaction. Hence, supporting that ecological factors are provided by some psychological effects which affect emotion recognition. However, with regards to macro and micro expressions, most standalone facial expression recognition systems tend to perform well in identifying macro expressions. These are expressions that can be noticed on a large area of a person's face and are visible for about 0.5 and 4 seconds [16]. Unlike micro-expressions, which happen spontaneously , macro expressions exhibit facial structural movement which can be easily noticed. This usually causes attentional bias and may be overlooked in the process of designing conversational AIs [17]. Puri et al. [18] implemented the Open-Source Computer Vision Library to detect faces and predict the same 7 major facial expressions. The OpenCV library has over 2000 machine learning image processing algorithms. However, the detection algorithm only worked best on images that have been cropped to the size and properties of training data and this could not be used to process real-time data. Similarly, a comparison using autoencoders [19] and an 8-layered CNN algorithm showed that by performing relevant hyperparameter tuning, CNN models [20]- [22] provided better results. AI Fairness 360 was also introduced by IBM to help mitigate some algorithmic and data biases in building AI models [23]. It tests for the possible causes of biases in data or AI models and provides recommendations for mitigating such biases. Most of the bias mitigation could be achieved during various processes when building the machine learning pipelines. This includes the during, the pre-processing, in-processing, and post-processing stages. The dataset is biased on the underrepresented group in 4 out of 5 metrics computed. Using re-weighing mitigation techniques to improve the dataset, reduced the bias to acceptable levels. Recently, several CNN architectures [20]- [22] were experimented on including Google's Inception-v3, ResNet 18, 34 and 50, VGG-16, and DenseNet-161. The models also considered datasets that showed several profiles of the face aside from the popular frontal image. The results showed that DenseNet-161 performed better with an accuracy between 96.51 and 99.52 percent [24]. Now the models described above tend to focus only on either static images or speech which works well for basic emotion detections with little focus on diversity, microexpressions, and real-time detection [2]. Our solution focuses on maintaining the credibility of an emotion recognition system in conversational AIs. The Convolutional Neural Network has been implemented on both facial expression recognition [25] and speech emotion recognition datasets [26]- [29] to be able to cater for tests on video frames. In addition to the CNN implementation, we introduce a new mathematical approach, termed the Audio-Frame Mean Expression to validate and improve the result from the neural network. --- III. MODEL DESIGN We combine the Facial Expression dataset and randomly collected data from social media pages of African descent and perform rigorous data pre-processing to balance the data representation and identify relevant features for training the machine learning model. This model is then trained using the Long Short-Term Memory and Convolutional Neural Networks with different hyperparameter values. Further, we propose a new mathematical model which is incorporated to provide better accuracies for all emotions described as shown in Fig. 1. --- A. ENVIRONMENT SETUP Our model is built using the Python Programming Language in the Jupyter notebook environment with libraries such as Numpy, Pandas, and Matplotlib. --- B. DATASET Our model depends on two main sources of data to build and train the machine learning models. The Facial Emotion Recognition datasets and the Speech Emotion Recognition datasets . The sources of SER datasets were: • Crowd-sourced Emotional Multi-modal Actors Dataset -CREMA-D [26]. • Ryerson Audio-Visual Database of Emotional Speech and Song -RAVDESS [27]. • Surrey Audio-Visual Expressed Emotion -SAVEE [28]. • Toronto emotional speech set -TESS [29] Apart from images gathered from the FER dataset, we extracted 1000 extra locally generated Ghanaian images. This data includes 75 happy, 145 surprises, 150 fear, 150 angry, 75 sad, 75 neutral, and 320 disgust faces with the final representation as shown in Fig. 2. Sample images that were gathered to complement the open-source data are shown in Fig. 4. This approach is to make sure the algorithm understands some expressions which are peculiar to the African . --- C. DATA CONVERSION AND PRE-PROCESSING To use the image dataset to train the model we formatted all images since the Convolutional Neural Networks are known to work best on grayscale images. The FER dataset already had images as 48 x 48 grayscale pixels. The additional local datasets as originally shown in Fig. 3 were also further converted from their original 365 colours pixels to grayscale images using the luminosity methods. With this approach, the intensity of red is decreased whiles the intensity of green is increased. The blue colour is moderately increased in between red and green. The output of the conversion is shown in Fig. 4. Grayscale = + + This same process could also be achieved using the average method although this might not work in all cases and sometimes converts images to black. We used this method because, in as much as balancing the dataset was necessary, the goal is to improve and reduce bias. Using the Dlib python image processing library, we perform abstractions on the image to carefully map out features of the face. The facial landmark predictor is used to localize the structures of the face consisting of 68 facial landmarks including the eyes, nose, mouth, lips, eyebrows, and jawlines . Once the features have been carefully outlined, we used the OpenCV library to select the most prominent features necessary to train the model. This included 5 features each for the left and right brows, 8 feature points for the eyes and 17 landmark points for the jawlines. The CNN local receptive fields, shared weights, and pooling layers were used to carefully extract the features. In most macro expressions, regions of expression usually span a larger area of the face therefore, placing a central motion region allowed for a great amount of time to observe expressions as seen in Fig 5 . It also clearly observed that the philtrum, which is the space between the nose, represented by 9 points, and upper lip seem to reduce across the spectrum of emotions. The entire mouth is represented by 20 points having a special influence on the type of emotion shown. It can be seen that the right image has fewer points since both the upper and lower lips are close together. Now, we performed the extraction of audio files which consists of two components; the sample rate and sample data. Each of the audio data samples is taken through the following steps: • Conversion of audio to .wav file format • Loading the audio and analyzing the frequency-time transformation. • Feeding the audio into a Speech recognition system for transcription. • Apply Natural Language Processing to the transcribed output for classification. Transformation of the audio data into three-dimensional representation helps for easy transformation and computation. The amplitude-time graph is represented in Fig. 6. Also, the Fourier transform of the signal is computed using the values from both the amplitudetime graph and the frequency-time graphs as shown in Fig. 7. --- D. PREDICTION MODEL This research implements the popular Convolutional Neural Network to classify the data into their various emotions. We used CNN because it can work better on images in two dimensions without having to convert them to one dimension as in the case of using Neural Networks. Two different CNN models were used to train the image and audio datasets respectively. Three blocks of CNNS were used to train the dataset. we chose 3 blocks as ideal for our model since experimenting with the single block provided an accuracy of 72% whiles overfitting the test data. Using 3 blocks of CNN improved the accuracy significantly while addressing the rapid overfitting of the test dataset. Other regularization approaches were applied as explained in section IV. Each block contained a 2D convolutional network whose outputs were passed as inputs to a batch normalization layer. It is passed to an activation layer which in this research represents the ReLu activation function. This is then fed into a max-pooling 2D layer of pooling size 2. The final layer in the convolutional block is a dropout layer. The unit size of the initial block is 64 and this value increases by a multiple of two in the other blocks. The VGG16 is a CNN architecture for image recognition that aims at improving the accuracy of the model. Similar to the CNN architecture with convolution and max-pooling layers, it also has two fully connected layers with a final SoftMax layer. After training image datasets to cater for predictions from image frames, we trained another model to detect emotions from the speech. The research considered two possible scenarios during the testing phase of the speech model. This includes speeches from video and audio feed . --- E. LIBRARIES USED IN TRANING THE AUDIO DATA • Zero-Crossing Rate: ZCR is the rate of change in signal from the highest value to zero mark to the least value and its reverse order in a specified time frame. • Chroma Vector: It identifies the spectral energy using 12 binary values denoting the pitch sounds. • Chroma Deviation: This is the variation of the Chroma Vector values from the mean which is represented by its standard deviation. • MFCC: Mel Frequency Cepstral Coefficient is the representation of the power spectrum of the audio. This is obtained by taking the Fourier Transform of the signal and locating them unto the Mel-scale. • Root Mean Square value: RMS is the quadratic mean which represents the square root of the mean square of the signal. • MelSpectogram to train our model: A representation of the signal to time in a spectrum. --- IV. RESULTS AND DISCUSSIONS A. CNN MODEL RESULTS In the beginning, a higher loss and lower accuracy are recorded in the training model as Fig. 8 shows a sturdy linear rise in the accuracy after each epoch. Meanwhile, the loss also keeps reducing which explains that the model is getting better and learning from past epochs. In Fig. 9, it can be seen that getting to the end of the 15th epoch, the accuracy rises to 65.23 per cent however a higher loss is also recorded. This means that our initial mode was not learning well and is very likely to give more predictions with errors hence the need to adjust the model parameters further. --- B. LEARNING RATE SCHEDULER, DATA AUGMENTATION, RANDOM OVERSAMPLING, AND RE-WEIGHTED We observed that using only the time-based, stop or exponential decay learning rates had resulted in higher accuracies but also overfitted the model. Another issue was that since the learning rate's hyperparameter values had to be pre-defined and may need to be updated with sparse data. And also, we introduced the Adam optimizer to address the learning rate and also reach global minima. A learning rate of 0.001 was used while the other hyperparameter values were left at their default. Maintaining the learning rate, while experimenting with different epoch values, it can be seen from Fig. 9 that after 30 epochs there is a steady increase in the accuracy which peaks between the 46th and 50th epoch. The loss value also drops significantly from the first 10 epochs and maintains a constant linear drop through the epochs left. This was an effect of lowering the learning rate while the decay constant was increased which reduced the momentum of the optimizer hence reducing the oscillation in the accuracy and loss values. --- C. GAP Difficulties in spotting micro expressions in non-static frames. This was as a result of the following reasons: • Color/Complexion of faces in contrast with the background. • Use of facial accessories including but not limited to makeups, eyeglasses. Increasing the number of features to train the model, as well as the number of epochs, provided a much better result as the accuracy increased to 82.59 per cent. This also had an impact on the loss value decreasing to 47.21% per cent as shown in Fig. 9. Finally, the confusion matrix demonstrated a clear count of the emotions detected to the actual and predicted values. --- D. MITIGATING FALSE POSITIVE AND TRUE NEGATIVES The Convolutional Neural Network has been implemented on both facial expression recognition and speech emotion recognition datasets. The approach mixed with 20% well-labelled localized datasets to be able to cater for tests on video frames and micro-expression is proposed. In addition to the CNN implementation, a new mathematical approach termed the Audio Frame Mean Expression is used to validate and improve the result from the neural network. Due to the nature of the dataset described in section 3 above, some emotions such as Fear, Disgust and, Surprise were misclassified especially by using the algorithm. For example, from Table 1, some elements of sadness were predicted as neutral, fear, and disgust. This number of misclassified emotions constituted close to one-third of the total number of fear test data. There were also some occurrences of edge cases whose emotions lay between two contrasting emotions. To mitigate such misclassifications, this research introduced the Audio-Frame Mean Expression. This algorithm is to validate emotions since we were considering both image frames and audio This simply means, in each video to be classified, sub videos in the range of 5-8 seconds were taken. These sub videos were taken in such a range to avoid missing out on micro-expressions. Out of the sub videos, each of the unique expressions identified using the ML algorithm was represented as discrete random variables, X. Three values of the variable X at which the probability mass function takes the maximum values are stored from both the image and audio classifications . Now, the algorithm relies on the emotion spectrum stipulated by Plutchik [30] and assigns weights to the emotions. This spectrum enables the algorithm to predict near values of emotions which lies in between two primary emotions on the wheel. Different classifications from both videos and audios which were at the extreme ends of the wheel denoted sarcasm. For example, we tested our model on a public youtube video of a Nigerian writer [31]. Fig. 10 shows the captured micro frames within the 5th-6th seconds and the words spoken in that interval. The happy emotion was expressed within this interval however the extracted audio was classified as Anger. Using our AFME algorithm we were able to extract these emotions and compared them on Plutchick's wheel of emotion [30]. After, comparison and identifying that the separate emotions were extremely contrasting, the algorithm hence detected sarcasm. This approach does not only seem to improve the outcome of the classification but is also an effective and optimized way considering the number of variables present. Table 2 compares the output of the recall, precision, and F1 scores of each of the experiments performed based on the values recorded for the True positives, true negatives, false positives, and false negatives. It can be observed that the accuracies improved as compared to similar research . However, based on the precision and recall values, we noticed a small number of misclassifications which means that the introduction of the AFME provided better predictions on the test data and also detected sarcasm. --- G. REASON FOR CONSIDERING BOTH SPEECH AND IMAGE FRAMES ASSOCIATED WITH SPEECH 1) SARCASM Sarcasm may have different text matching a particular facial expression also known as visual paralinguistic [33], therefore cannot be overlooked [11]. Most often, context could be used to detect sarcasm in cases where there is a slight or vast difference relating to the subject matter. The tone and gestures expressed while speaking could create cues to detect whether a particular emotion is characterized with humour or irony. --- 2) RATE OF SPEECH Automatic tagging of prosodic phrases which are segments of speech that occur with a single pitch is employed to extract natural language data from real-life conversations using the support vector machine model [12]. This approach aided in the segmentation of words and phrases including nonverbal content. Achieving a 52% accuracy using this Natural Language Processing model, the result showed that even with the seven major emotions, non-verbal sounds played a crucial part in achieving high accuracies for emotion detections. --- 3) NON-VERBAL COMMUNICATION AND CUES Non-verbal communication is a huge part of our communication kit. This is where body language or facial expression is used while speech is minimal or non-existent. Recently, due to the introduction of text messaging-based software such as WhatsApp, telegram, and Facebook, people have found ways to express sentiments and tone within the text using emoji. This creates a big difference when an individual receives a text saying ''okay'' and an ''okay:)''. In as much as there might be cases where wrongful usage of emojis may lead to a misleading interpretation, a person's psychometric characteristics can be measured using self-identification with emojis. --- H. RECOMMENDATION ON STRUCTURE OF DESIGNING CONVERSATIONAL AGENTS • Conversational agents need to be designed to strongly meet the following criteria: • Perceive emotions and surroundings. • Respond to emotion and communicate with high-level dialogue. • Recognize emotion recognition models of other agents. • Create social relationships and maintain them to remain competent -learn social qualities leading to trust. • Depending on natural cues. --- V. CONCLUSION Limitations such as access to African data might take some time to be solved. Until there can be access to a readily available well-structured dataset on the emotions of Africans, there needs to be algorithmic and dataset restructures. By balancing the datasets, and adjusting our new Audio-Frame Mean Expression, we designed a better model to predict emotions on black demographics. We relied on the use of CNN to provide good accuracies for the classification of the model on both speech and text data. From our model results, we identified that the standalone results are not enough to accurately predict the emotions on black faces. The performance analysis of the results before and after the mitigating techniques were applied showed an improvement in the F1-score, Precision, and Recall of the model. Our goal here is to increase the number of true positives and false negatives while strategically reducing the number of false positives and true negatives. We also identified that the implementation of other traditional mathematical techniques to the modern machine learning models would help mitigate false positives and true negatives. --- VI. FUTURE WORK For future research, the dataset used could be first subjected to IBM 360's model [23] to identify other areas of bias within the dataset. We propose an implementation and comparison of different mitigation techniques proposed by the IBM 360 model to find an optimal Emotion Recognition model. Although this method might be tedious and time-consuming, it serves to also validate the causes of bias mentioned in this paper. Secondly, more attention could be paid to the different features that classify faces and voices amongst different groups of people. This could be introduced as a new parameter for model detection.

Valuable decisions and highly prioritized analysis now depend on applications such as facial biometrics, social media photo tagging, and human robots interactions. However, the ability to successfully deploy such applications is based on their efficiencies on tested use cases taking into consideration possible edge cases. Over the years, lots of generalized solutions have been implemented to mimic human emotions including sarcasm. However, factors such as geographical location or cultural difference have not been explored fully amidst its relevance in resolving ethical issues and improving conversational AI (Artificial Intelligence). In this paper, we seek to address the potential challenges in the usage of conversational AI within Black African society. We develop an emotion prediction model with accuracies ranging between 85% and 96%. Our model combines both speech and image data to detect the seven basic emotions with a focus on also identifying sarcasm. It uses 3-layers of the Convolutional Neural Network in addition to a new Audio-Frame Mean Expression (AFME) algorithm and focuses on model pre-processing and postprocessing stages. In the end, our proposed solution contributes to maintaining the credibility of an emotion recognition system in conversational AIs.

adolescents are frequently faced with choices that affect other individuals, including those closest to them. In the current study, we investigated whether adolescents alter their decision making behaviors when their family stands to gain or lose as a result of their decisions. --- Social Context Modulates Adolescent Risk Taking Prominent models of adolescent development explain risk taking as an imbalance between developmentally heighted sensation seeking ) and slow-todevelop cognitive control . Theoretically, it is posited that adolescents find rewards to be more hedonically pleasurable than children or adults and do not have mature impulse inhibition systems to regulate themselves in the face of risky scenarios that may yield such rewards. Extant work does indeed show that adolescence is a period of increased risk taking . However, adolescents' risky tendencies are not ubiquitous across all contexts. Importantly, adolescents are sensitive to the social context in which risk taking occurs and subsequently augment or attenuate their rate of risky decisions when other individuals are present. Teenagers look to peers and parents for important social information and are highly swayed by their influence . It is perhaps for this reason that studies have found adolescents to be more likely than adults or children to take greater risks in the presence of a peer compared to when alone . Similarly, adolescents can also be swayed to behave more safely, as they are less likely to take risks when in the presence of slightly older adults or their mothers . Prior work has focused on adolescent risky decisions that solely affect the individual adolescent. For instance, existing protocols for investigating the social context of teenage risk taking involve informing participants that another individual is passively watching them complete a risk-taking task with no stake in the outcome to test whether the mere presence of others alters adolescent decision making . Other studies present adolescents with information on how their peers, parent, or adults behaved in the same situation to see if adolescents change their decision-making behaviors when exposed to explicit social influence . While such experiments have significantly contributed to our understanding of adolescent decision making, prior research has not examined how adolescents' decisions change when they take risks that affect individuals other than themselves, a type of behavior that occurs frequently in adolescents' daily lives. For example, consider an adolescent who takes the family car on a joyride. By doing this, he is not only risking his own safety but he is also placing his family at risk if he totals the car since this would cause significant financial and emotional strain for his family. An existing body of supporting work suggests adolescents may alter their decision making behaviors as a function of who is affected . For instance, Crone and colleagues found that adolescents understand that other individuals have different risk-taking preferences than their own, suggesting that they may be cognizant of others' perspectives when making risky choices that affect others. Similarly, neuroimaging research has shown that adolescents are sensitive to vicarious rewards for others stemming from decisions they made . These results suggest that adolescents are not only capable of taking others' perspectives while risk taking but that they may be motivated to behave differently in order to achieve a specific outcome when someone else is affected. --- Family Relationships and Adolescent Risk Taking Of the many relationships that populate the adolescent social ecology, those between teenagers and their parents tend to exert a profound influence on behavior. Although adolescence is a period where individuals begin to spend more time with peers than parents , adolescent-parent relationships still play a prominent role in the lives of teenagers. On average, adolescents report valuing their parents despite also reporting developmentally typical increases in family conflict . Prior experimental studies have shown that adolescents take fewer risks in the presence of their mothers than when alone or in the presence of an unknown adult , suggesting that adolescents think about their parents when taking risks. Because many of adolescents' risk-taking decisions not only affect themselves, but also affect their parents, adolescents likely decrease their risk-taking decisions when their parents stand to gain or lose due to their risky choices. However, there is a great deal of heterogeneity in the quality of adolescent-parent relationships . Although adolescents may take fewer risks overall when their parents are affected, this likely depends on facets of relationship quality between parents and teens. Family conflict tends to increase during adolescents , with heightened family conflict serving to increase adolescent risk taking . Thus, in low conflict relationships, adolescents may change their behavior to be less risky, but in high conflict relationships they may increase their risky behavior. Indeed, research has shown that the mere psychological representation of a relationship partner , even in her absence, activates and guides behavior . In particular, social influence extends to the "psychological presence" of significant relationship partners, such that cognitive representations incorporate the goals, values, and expectations of these close others, thereby influencing self-regulation . Indeed, when in the "psychological presence" of their father, students show decreases in cognitive persistence in low cohesion families but increases in persistence in high cohesion families . Thus, representations of close others from high conflict relationships can actually impair cognitive control . Therefore, making decisions in the context of a highconflict family may cause teenagers to poorly regulate their behaviors. By comparison, adolescents who report relatively low levels of conflict with their parents are perhaps more likely to display the opposite trend. They may be particularly motivated to obtain rewards for their parents, opting to take fewer risks in order to avoid harming their parents. --- The Current Study In the current study, we utilized a well-validated risk-taking task in which participants' choices between certain and uncertain outcomes were associated with specific probabilities of monetary outcomes. We implemented a novel manipulation, in which adolescents completed the task twice: once during which their decisions impacted only themselves , and another during which their decisions impacted only their parent's outcomes. This manipulation allowed us to understand how adolescent behavior during risk taking changes as a function of who is directly affected by their decisions. Thus, our manipulation captures a previously unexamined element of the adolescent risk-taking ecology-how one's risks affect their parents. Adolescents also completed self-report measures to assess family conflict. Since research has indicated early adolescence as a crucial time of dynamic change in both risktaking behaviors and family relationships , we specifically focused on 12-14 year olds in order to understand this important period during which teenagers begin to show peaks in risk taking and family conflict. We sought to address two key questions. First, we tested whether adolescents altered their decision making behaviors when their parent was affected. We expected that, overall, adolescents would take fewer risks for their parents than when playing for themselves. Second, we tested whether adolescent decision making for self and parent differed as a function of perceived family conflict. We expected that adolescents with greater experiences of family conflict would be more likely to make greater risky decisions during the risktaking task when playing for their parents compared to themselves. Conversely, we expected that adolescents with fewer experiences of family conflict would be less likely to take risks for a parent compared to themselves. --- Methods --- --- Self-Report Measures Family conflict-Family conflict was assessed by asking adolescents to complete an 8 item measure indicating how often they fight, disagree, or argue with their parents . Example items include "you and your parents yelled or raised your voices at each other" and "you and your parents ignored each other." This measure has been previously used in adolescent samples to assess normative levels of family conflict and links to risk taking and substance use . Risk-taking behaviors-In addition to examining risk taking during the experimental task, we controlled for self-reported risk-taking behaviors using a modified, 12-item version of the Adolescent Risk Taking Scale . Participants were asked to rate how often they engaged in a range of risky behaviors along a four point likert scale . Example items include "I have snuck out of my house without my parents knowing" and "I have raced a car or motorcycle". . --- Risky Decision-Making Task To measure risky-decision making, we employed a computerized version of the Cups Task , which has been frequently utilized for examining decision making in developmental populations . Participants completed two runs of the task , once while making risky decisions that affected their own earnings, and once while making risky decisions that affected the earnings of their parent who accompanied them to the visit. The order of conditions was counterbalanced between participants. During each trial, adolescents were shown a set of overturned cups on a computer screen. A vertical line divided the row of cups into a left side with one cup and a right side with many cups . Participants were told that +/-$2 was always hidden beneath the single cup on the left side, whereas +/-$4, $6, or $10 was hidden beneath one of the many cups on the right side. Participants were instructed to pick between the two sides and were told that the computer would then randomly select a cup from the chosen side . Participants could gain money on half of the trials and lose money on the other half. Therefore, choosing the left side was associated with a 100% probability of gaining or losing $2 whereas choosing the right side contained a 50%, 33% or 20% probability of gaining or losing a result greater than $2 . These probabilities were presented ex ante to the participant, yet varied slightly in reality so as to artificially boost outcome variability. Participants had three seconds to make their decision for each trial and were informed that a failure to respond would result in no outcome for that trial. There were 9 combinations of reward/loss outcomes and risk probabilities . Six trials per combination were presented to the participant in each run, half of which were gain trials and the other half were loss trials. The order of risk probabilities was presented in a fixed order to participants, in a such a manner that appeared random, while the trial type varied randomly between subjects. Participants were told that the reward results for each trial were not cumulative. Instead, the computer would randomly select the outcome of one of their decisions at the end of the task and add that amount to their study compensation. The experimenters emphasized to participants that money could be won or lost for themselves and their parents. Because adolescents and their parents were each receiving $30 for participating, the loss was subtracted from their overall earnings, whereas the gain was added. In reality, adolescents always received $4 when playing for themselves and $2 when playing for their parent. Parents were not made aware prior to the task that their child was completing a round of the task for them. The $2 reward for their parent was delivered to the parent in front of the adolescent at the end of the study session. Mathematical decision making model-Techniques from the field of behavioral economics have been applied to developmental science, allowing researchers to study the extent to which different subcomponents of risky scenarios affect decision making using precise, formalized mathematical models . Specifically, such models, termed risk-return decomposition models, break down risk taking into its underlying components: risk and reward . Other scholars have noted these two elements of risky decisions are often conflated in studies of adolescent risk taking, and it makes it difficult to determine whether adolescent risk taking is driven by pure risk or pure reward. By decomposing risky decisions into risk and reward, we sought to gain better insight and a more nuanced understanding of the contextual factors that influence adolescents risk taking. Although such techniques have been frequently conducted with adults, they are relatively lacking in the developmental literature . We employed an analytic technique adapted from prior work to fit our task parameters , in which we decomposed risk taking into two components, the effect of reward and the effect of risk. Consistent with recent work , the effect of reward was operationalized as the expected value of a risky choice while the effect of risk was operationalized as the standard deviation associated with the potential outcomes of a risky choice. Mathematically, Reward EV was defined as: EV = Risk SD was defined as: SD = 2 ) Thus, for a trial in which +$10 was hidden under a set of three cups, the Reward EV would equal 3.33 and the Risk SD would equal 3.85 2 )). Given our win/loss probabilities and outcomes, the Reward EV ranged from -5 to +5, and the Risk SD ranged from 1.41 to 3.85. As previously mentioned, our use of this modeling approach is important because the effects of reward and risk are often conflated in risk taking tasks and they have not been frequently used in developmental samples . We analyzed our data using hierarchical linear modeling to investigate how the social context of decision making and the effect of reward and risk influence the likelihood of making a risky versus safe decision and how individual differences in family conflict and risktaking tendencies moderate the link between these variables. We estimated the following equations: Level 1: Logit = π 0t + π 1t + π 2t + π 3t + ε it Decisions for a particular trial for a particular individual was modeled as a function of the context or for their parent ). Reward and risk were coded as the reward EV and risk SD, respectively, for a particular trial. Because individuals tend to take risks differently depending on whether they risk gaining a reward or avoiding a loss, we ran this model separately by trial type . Additional HLM models were analyzed to test whether the effect of context, reward EV, and risk SD on risky decisions depends on the quality of parent-child relationships. In addition, self reported risk-taking and gender were included as controls. The models included the same level-one equation described above but with the inclusion of the following individual level equations. Level 2: The intercept and the trial-by-trial associations of decision making with context , reward , and risk were modeled as a function of average self-reported family conflict and average self-reported risk taking. Family conflict and risk-taking scores were grand mean centered. Gender was dummy coded 0 = male, 1 = female and entered into all our models. We added self-reported risk taking at the second level to determine how realworld risky-taking tendencies relate to in-task risk taking 1 . π 0t = --- Results In-Task Risk Taking for Self and Parent First, we examined the level 1 model described in equation 1 to test how the social context and the effects of risk and reward for a given trial affect adolescents' likelihood to make a risky decision. We ran these analyses separately for gain and loss trials because gain and loss trials in the task are framed differently and therefore may have different effects on behaviors . As shown in Table 1, we found significant associations between the tendency to make a risky decision during a given trial and the effect of reward for both trial types, such that a greater EV for a given trial was associated with a greater propensity to make a risky decision. We also found a significant association between the tendency to make a risky decision and the effect of risk during loss trials, such that adolescents tended to make more risky decisions as the outcome became more uncertain. However, there was no such effect for gain trials. The context was not associated with the propensity to make a risky decision during a given trial for either condition. Thus, overall, adolescents were no less likely to vary their risk taking purely as a function of social context . --- Family Conflict Moderates In-Task Risk Taking for Self and Parent Next, we examined the level 2 models described in equations 2-5 to test whether the trialby-trial associations between social context and decision making differed as a function of self-reported family conflict. Family conflict , which was entered as a continuous measure and grand mean centered, moderated the trialby-trial association between social context and risk taking for gain trials but not loss trials . In order to probe this effect, we split our sample into high and low family conflict groups by taking the highest scoring third and lowest scoring third . We found a significant positive association between the social context and risky decisions in the high family conflict group , and a significant negative association between the social context and risky decisions in the low family conflict group . That is, adolescents reporting high family conflict were significantly more likely to make risky decisions for their parents compared to themselves, whereas adolescents reporting low family conflict were significantly less likely to make risky 1 We also examined whether the influence of social context is dependent on the effects of reward EV or risk SD, we ran additional models in which we computed Context x Reward EV and Context x Risk SD interaction terms and entered them into additional first level equations. Because analyses with these interaction terms yielded insignificant results, we have excluded them here for the sake of parsimony. decisions for their parents compared to themselves. As shown in Figure 2, individuals from both high and low family conflict groups showed relatively more similar risk taking when playing for themselves compared to when playing for their parent. Adolescents reporting high family conflict changed their risky behavior when their parents were affected by their decisions, such that they took significantly more risks for their parents. In contrast, adolescents reporting low family conflict changed their risky behavior in the opposite pattern, such that they took significantly fewer risks when their parents were affected by their decisions. Family conflict did not moderate the association between risky decisions and any of our other predictor variables . --- Gender and Self-Reported Risk Taking Moderate In-Task Risk Taking Although not the focus of the current manuscript, we also examined how our control variables modulated in-task risk taking. As shown in Table 1, gender and risk-taking tendencies moderated adolescents' risky choices. In terms of gender, gender moderated both effect of SD and EV on in-task risky choices. Selfreported risk taking , which was entered as a continuous measure and grand mean centered, moderated the trial-by-trial association between reward value and risky decisions for both gain and loss trials. Additionally, as shown in Table 1, self-reported risk taking moderated the trial-level association between in-task risk taking and Risk. Both gender and self-reported risk-taking results are probed and discussed in the supplementary materials. --- Discussion In the current study, we sought to investigate how the social context influences risky decisions when adolescents' behavior affects their family using a formalized risk-taking model. Interestingly, the social context does not have a global impact on adolescents' decision making. That is, at the main effect level, adolescents do not differentially take risks for their family and themselves. Importantly, we show that adolescents alter their decision making behaviors when their risks affect their family based on their experiences of conflict with their parents. Specifically, adolescents who reported greater family conflict were more likely to make risky decisions when the outcome affected their parents, but not themselves, whereas adolescents reporting lower family conflict were less likely to take risks when the outcome affected their parents. The current study significantly contributes to our understanding of how social contexts shape adolescent decision making across risky scenarios. That teenagers change their decision making behaviors when their parents stand to lose or benefit suggests information about who is affected by their risks plays a meaningful role in shaping adolescents' risky behaviors. Intriguingly, we did not find an overall main effect of context on adolescent risk taking. That is, on average, adolescents did not take fewer risks for their parents compared to themselves. This null main effect was qualified by a significant interaction, such that adolescents' only made fewer risks for their parents when they reported low family conflict. This speaks to the importance of adolescents' perceived family conflict in determining how they will make risky decisions on the behalf of their family. Just as self-oriented adolescent risk taking behavior is not necessarily stable across all contexts , neither is parent-oriented risk taking stable across relationships of differing levels of family conflict. These findings are noteworthy because they not only highlight how social influences do not exert uniform effects on behaviors but that they depend on the quality of the relationship. Similar to previous work examining how family and peer conflict impact adolescents' risk taking when it affects only the adolescent , we found that individuals who report high levels of family conflict were more likely to make a risky decision, however this time at the expense of their parents. Conversely, individuals who report lower family conflict were less likely to make risky decisions when their parents were affected. One explanation for this is that activation of parental representations when playing for a high conflict parent actually impairs cognition and self-regulation, whereas adolescents reporting lower levels of family conflict experience the opposite. This may be because playing for a high or low conflict parent changed the goal structure that adolescents had with respect to our task . It is also possible that living in a high or low family conflict home is related to different orientations towards approaching and pursuing rewards, and that activating the psychological representation of a parent then affected how adolescents played the task. In fact, adolescents reporting higher levels of family conflict may not be trying to harm their parents or even showing little regard for them; instead, taking more risks for their parent may be an acceptable way, in the context of this relationship type, to try to help one's parents. In contrast, playing it safe may be a more appropriate way for adolescents reporting low family conflict to help their parents. Perhaps their goal structures incorporate values that favor certainty and stability, even if it means they may not acquire greater rewards. Regardless of the exact reason, these findings highlight a potential caveat to the burgeoning work showing that parental presence influences teens to make safer decisions , and suggests that negative family relationships may actually push adolescents towards engaging in negative behaviors, particularly when their decisions affect their parents. Interestingly, it was only during gain trials and not loss trials in which adolescents reporting high family conflict took greater risks on the behalf of their parents, whereas adolescents reporting low family conflict took less risks when their decisions affected their parents. Increased risk taking for individuals reporting greater family conflict may actually reflect heightened approach motivation when faced with the opportunity to gain money, compared with a chance to avoid losing money. This would imply that the psychological representation of a high conflict relationship affects one's motivation to approach a reward relative to their motivation to avoid a loss . Similarly, the representation of a low conflict relationship may differentially alter the extent to which one chooses to approach positive rewards and not the manner in which they avoid potential losses. The lack of social context effects on behavior for losses between adolescents who report high versus low family conflict may be the result of a ceiling or floor effect when assigning subjective weights to loss outcomes . That is, the subjective weights of losing may be more or less 'fixed' and relatively immutable to social influences, whether it be because losses are too salient or because they adolescents show blunted sensitivity to loss . The results reported here show that adolescents likely consider their parents' viewpoints when taking risks. This particular element is absent from current theories of adolescent risk taking and should be incorporated in order to yield a more complete understanding of adolescent decision making. Indeed, current theories of risk taking in adolescence may only apply when adolescents are making self-oriented risky decisions-an entirely different account may be needed to explain other-oriented risk taking in adolescence . Our findings raise the possibility that contexts may exist in which adolescent risk taking tendencies are attenuated or exaggerated when they consider that their parent is going to be affected. This notion not only has theoretical implications, but also possesses practical value. Scholars have suggested that cognitive reappraisal strategies, in which individuals change the ways they think about a stimulus so as to modulate its affective meaning , may offer a promising avenue for reducing health compromising behaviors during adolescence . Our study may serve as the basis for future studies to explore contexts in which adolescents decrease their risk taking when others stand to gain or lose. Such work may subsequently inform the development of interventions centered on modifying cognitive reappraisal strategies so as to remind adolescents of who else will be affected by their risky decisions. Since adolescents take others' perspectives into account when taking risks and are motivated by vicarious rewards , the use of such reappraisal strategies may be one effective candidate for inducing behavioral change in adolescence. Yet, without taking into consideration the quality of their relationships, interventions could have iatrogenic effects if adolescents are encouraged to take the perspective of a high conflict family member. While our findings provide the first evidence that adolescents alter their decision-making behaviors when their behavior affects another individual, our study focused specifically on family relationships. Given the importance of peers to adolescents, future studies should examine whether a similar effect occurs when teenagers take risks that affect those of their friends. Additionally, our study only tested early adolescence. Future research should examine whether other age groups, including children, late adolescents, and adults differentially modify their decision-making behaviors in a social context to determine whether the effects observed here change across the lifespan. Lastly, our experiment could have benefitted from a larger sample size and the subsequent boost in power. However, we do note that our 54 trials per run of the task are consistent with, or higher than, the typical number of events in statistical models that rely on hierarchical linear modeling . In conclusion, our results contribute to the growing body of work highlighting the importance of social contexts in individuals' decision making behaviors. No other study to our knowledge has examined how adolescents behave under risky circumstances when their parents are affected by their risks. Our results highlight that the extent to which adolescents change their decision making behaviors when their risks affect another individual is dependent upon family conflict. These findings lend greater insight into the fabric of adolescent decision making processes. An example gain trial of the cups task. Participants had the option to choose between the certain outcome on the left, which guaranteed $2, and the uncertain option on the right, in which they had a 50% chance of winning $4 or nothing; Reward EV = 2; Risk SD = 1.41. Participants played one round for themselves and another for the parent whom accompanied them to the experiment. The association between social context and trial-level risk-taking as moderated by family conflict . A greater value on the y axis indicates a higher likelihood of making a risky choice. Trial-by-trial association between risky decision making and study variables, broken down by trial type. Robust standard errors are reported from a population-average model. Note. Gender was coded Male=0, Female = 1. Context was coded such that a 0 indicated playing for oneself where a 1 indicated playing for ones parents. EV ranged from -5 to 5 and SD ranged from 1.41 to 3.85. B's represent expected changes in log odds for a given variable over and above other variables in the model. Dev Sci. Author manuscript; available in PMC 2019 July 01. --- Supplementary Material Refer to Web version on PubMed Central for supplementary material. --- Research Highlights --- • Prior work examining risk taking behaviors in adolescence focuses on how adolescents take risks that only affect themselves. --- • We employed a novel experimental paradigm in which adolescents made risky decisions that affected their parent and themselves. --- • Adolescents reporting high conflict with their parents made more risky decisions when their parents were affected. --- • Adolescents who reported low conflict with their parents made fewer risky decisions when their parents were affects. --- • These findings have implications for theories of adolescent risk taking.

Numerous studies have established that the social context greatly affects adolescent risk taking. However, it remains unstudied whether adolescents' decision-making behaviors change when they take risks that affect other individuals such as a parent. In the current study, we sought to investigate how the social context influences risky decisions when adolescents' behavior affects their family using a formalized risk-taking model. 63 early adolescents (M age=13.3 years; 51% female) played a risk-taking task twice, once during which they could make risky choices that only affected themselves and another during which their risky choices only affected their parent. Results showed that adolescents reporting high family conflict made more risky decisions when taking risks for their parent compared to themselves, whereas adolescents reporting low family conflict made fewer risky decisions when taking risks for their parent compared to themselves. These findings are the first to show that adolescents change their decision making behaviors when their risks affect their family and have important implications for current theories of social context and adolescent risk taking.

The neurophysiological disposition to reciprocate is a product of human evolution and plays a crucial role in the emergence of social networks. Network ties emerge and exist in the form of episodes of social exchange, beginning with the initiation of an exchange, its progression over time, and its end. According to goal-framing theory , a goal frame limits the scope of social cognition and decision-making. When reciprocating, the normative goal frame usually strives for the cognitive foreground and pushes other goals into the background. Based on the goal-framing perspective, which is a refinement of Dunbar's "social brain" hypothesis, the present study analyzes the effect of reciprocity on the evolution of social exchange networks. Results of longitudinal analyses of network evolution show that the normative goal frame, and the resulting commitment to reciprocity, is highly important during an ongoing social exchange episode. However, the inclination to reciprocate is considerably lower in dyads of different ethnic background. Network segregation along ethnic boundaries emerges not only from opportunities to initiate a network tie but also from the ongoing social exchange process and varying commitments to reciprocity. It will be argued below in the "Theory and Research" section that goal-framing theory is superior to "classic" rational choice theory when explaining the emergence of network ties and the ethnic segregation of networks. Goal-framing theory describes human social cognition in a more realistic way: "Rational choice reconstructions of solidarity … more or less ignore the architecture of the social brain and thereby also cannot deal with the non-strategic aspects of cooperative behavior" . Our understanding of networks, social cohesion, and ethnic boundaries remains incomplete if we ignore the neurophysiological architecture of the social brain and its evolution. Multilevel selection during human evolution enhanced the ability to cooperate, but also to distinguish between in-and out-group. According to the "social brain" thesis , human sociality became physically embodied by the coevolution of brain size, particularly the neocortex, and the size of cohesive groups. Cognitive capacities to recognize others' intentions gained in importance in increasingly complex social settings. Evolution favored the "intentional stance" , the life-saving assumption of being surrounded by subjects who might intend, for example, to eat, to escape, or to mate. In conjunction with pair bonding and "cooperative breeding," this further developed into the capacity to selfregulate, to think about others' mental states, and to apply complex "theories of mind" . Acting in such a way as members of larger groups is a distinctive feature of humans. While the neurophysiological foundation of social cognition and morality is now taken for granted in evolutionary anthropology and psychology , sociology could also improve some of its core concepts, such as cooperation, reciprocity, and social cohesion, by systematically considering the intrapersonal dynamics of cognitive modes . Assuming different cognitive modes is in line with the "social brain" thesis, with recent developments in the neuroscience of social decision-making , and also with the assumption of a "natural" disposition to reciprocate . This disposition appears as "self-organization" at the aggregate level of the social network: network ties occur because other ties already exist. The present paper elaborates the following argument: social interaction in modern, diverse mass societies requires a specific capacity of self-regulation to calibrate different goal frames, and to regulate the interplay between normative, hedonic, and gain goal frames in a manner appropriate to a given situation. Cohesion of social networks requires reciprocity resulting from a strong normative goal frame which, however, is comparatively weak in social exchange between different ethnic groups. Using data on school-class networks of children's and adolescents' birthday parties , empirical results of stochastic actor-oriented models for the evolution of networks support the hypothesis that the reciprocity effect is considerably smaller in dyads of different ethnicities. --- Theory and Research By inviting peers to a birthday party or by accepting an invitation to one, children's and adolescents' friendships are publicly confirmed, so that birthday parties become important for a child's position in the prestige hierarchy of the peer-group. From the parent's point of view, birthday parties are an exchange of goods and children between families and households , where norms of reciprocity are particularly strong. Figure 1 shows the evolution of a network in three different dimensions in the fifth, sixth, and seventh school grades. The network generator of the outcome variable is the following: "Whose birthday party did you attend?" Gray indicates pupils from migrant families; white, from nonmigrant families. Circles indicate girls; squares, boys. How can we explain the dynamics of the birthday party network? "Self-Organization" in Social Networks The concept of "network self-organization" became prominent in the 1970s, when neurobiologists were looking for a theory to explain the reestablishment of network topologies in damaged neural systems. A purely genetic theory of regeneration due to cell-by-cell genetic determination would require an unrealistic amount of genetic information. The reestablishment of the neural network can be modeled much more simply by mutual reinforcement of cellular activity in neighborhoods. Assuming basic axonal activities in a simulation model, such as continually putting out branchlets which become withdrawn if not reinforced, and genetic information limited only to a small set of "polarity marker-cells" as landmarks in the topological map, sufficiently explains the reemergence of the structure . In social networks, persons decide whether they will establish, maintain, or dissolve ties. Nevertheless, "network self-organization" is more than just a metaphor for the evolution of networks. The concept draws our attention to constraints on social decision-making. The way we interact in everyday life and react to other people is anything but arbitrary. It is highly structured by our institutionalized environment, but also influenced by our biology. After an exchange relationship has been initiated and accepted, reciprocating is often regarded as a taken-for-granted matter, so the choice-set becomes strongly limited . From a macro perspective, the network appears to an observer as an evolving social system, in which existing ties stimulate the emergence of new ties. For instance, "social capital" is the realistic expectation of getting support from the social network. Social capital is not exhausted by use, but can even be enhanced when expectations of reciprocity emerge . The basic idea of network self-organization is similar: the presence of ties in a network increases either the stability of other existing ties or the probability of new ties-for example, by transitive closure or reciprocity . Although network research is commonplace in the social sciences today, it lacks a systematic foundation in a theory of human action and behavior which combines arguments on appropriate action in a given situation, or "rational choice," on the one hand, and network self-organization. on the other. Most real-life networks result from opportunities and choice, but also from taken-for-granted routines and emotions, which appear as "self-organization" at the network level when actors strongly tend toward reciprocity. This argument will be elaborated in the following section, where three propositions related to the microfoundation of network ties will be made. First, instead of misconceiving network ties as stable entities, the focus should be on their dynamics . Network ties are episodes of social exchange. Second, cooperation and reciprocity have a neurophysiological basis in the "social brain." Third, when applied to network ties, behavioral theory should distinguish between different goal frames , activated by situational cues. --- Network Ties as Episodes of Social Exchange Sociological network researchers in the 1970s, particularly those at Harvard, developed a variety of global and local network measures , but most of them were cross-sectional. The flipside of the Harvard Structuralists' great success was the reification of the network as a given social structure: "Sociological research has focused extensively on networks in stasis, paying far less attention to how individual exchange relations emerge, evolve, stabilize or vanish over time" . Cross-sectional manifestations of networks are only snapshots of dynamic sequences of decisions on tie creation, maintenance, or dissolution at the micro level . Research on social exchange, in contrast, analyzes the dynamics in "episodes of reciprocal exchange" . In working groups, exchange often begins with rational reasoning and instrumental motives, but during recurrent interactions over time, positive emotions gain in importance . Kuwabara and Sheldon study different dynamics of social exchange, which they call "testing the water" and "leap of faith." The former is a tentative, incremental development of social commitment in a situation of uncertainty and perceived risks, whereas the latter indicates a nearly immediate onset of frequent "high-stakes interactions." If interethnic network ties tend to develop more in terms of "testing the water" and have a lower likelihood of reciprocity, ethnic segregation will also result from the exchange process itself, and not just from preferences when initiating a tie, given the respective opportunity structure. The following sections further elaborate why cognitive modes becoming active during the exchange episode can further increase ethnic network segregation. --- The Social Brain and Reciprocity Evolutionary anthropology and psychology agree that reciprocity, cooperation and investment in collective goods pay off for the group. Between-group competition or conflict has been an evolutionary driving force to solve the free rider problem: cooperative groups had an advantage over noncooperative groups but also had to defend their resources against intruders from the outside. This led to parochial altruism, a form of solidarity in which actors are well aware of group boundaries and favor the in-group or even show negative feelings toward the outgroup . Studies in the neurosciences support the notion of a strong tendency toward reciprocity and cooperation. In a series of experiments, Sakaiya et al. showed in an iterative prisoner's dilemma study that others' nonreciprocity correlated with activation in the amygdala . Nonreciprocal partners stimulate negative feelings, whereas reciprocal partners stimulate positive ones, which is reflected in correlated brain-area activation. Experiments on neural activities in social interaction highlight how specific brain regions are coordinated when persons reciprocate trust . Indirect "pay-it-forward" reciprocity corresponds with neurologically measurable emotional rewards . Actors who break a given promise to reciprocate trust show higher activity in brain regions that are usually involved in cognitive conflict and control. Our inherited disposition to reciprocate is even strong enough to become exploited for manipulative purposes . Violating expectations of reciprocity is a psychological challenge, as J. Rilling and A. Sanfey conclude in their overview: "whether through innate, genetic predispositions or through socialization, the tendency to reciprocate altruism appears to become ingrained in our biology and overridden only with cognitive effort" . Reciprocal altruism became part of human nature during the autocatalytic take-off period of gene-culture coevolution , when group and brain size suddenly increased and social interaction became more complex , as proponents of the cumulative cultural brain hypothesis argue. As a result, cognitive states change when persons process new information while deciding either on initiating a network tie or on reciprocating. In addition, the micro-level effect of reciprocity in a network's process of self-organization might be moderated by the salience of objects , in particular by the ethnic origin of other persons involved in the exchange. --- Reciprocity in Goal-Framing Theory and Ethnic Boundaries Although fast vs. slow cognition might play a role in social tie creation , there usually is some time during an exchange episode to reflect on the relationship and on reciprocity. Lindenberg's goal-framing theory is a more appropriate approach to explain how our social brains are involved in social networks and in the reproduction of ethnic boundaries: because of the advantage of collective goods at different levels of aggregation, humans developed social rationality or group-mindedness . Since the working memory's capacity increased during human evolution , humans became increasingly able to keep track of who initiated which actions, to develop a "theory of mind," and to cognitively master higher-order intentionality: a person can assume that another person thinks about a third person's intention to betray an incautious fourth person . In addition, social order became dependent on individuals' capacity of self-regulation , which is either a result of multilevel selection or of ostracism of uncooperative individuals, free riders, or "bullies" from the community. According to the former argument, selection operated at the individual and at the group level, but potentially at opposite directions: whereas uncooperative cheaters might increase their individual fitness within the community, communities with many cheaters fail to provide collective goods and are therefore outcompeted at the between-group level-by conflict or simply by niche competition . According to the ostracism thesis, selfcontrol resulted from group punishment against bullies and free riders. Ostracism and capital punishment severely reduced the fitness of deviants and altered the gene pool : "we may assume that thieves, cheaters, and, especially, alphas were not going away quietly; that many were killed or otherwise disadvantaged along their way; and that the human capacity for self-control was advancing as a result of all this drastic social selection" . One outcome of these selective processes is the highly social nature of humans. Being concerned about personal reputation became a crucial aspect of our moral consciousness, so that moral emotions and the capacity of self-regulation seem to be human universals . Both selective mechanisms stabilized the human capacity to calibrate a complex set of overarching goals, also called "mindsets" . Once active and in the cognitive foreground, overarching goals organize the framing of the situation. Goals frame situations and stimulate specific cognitions and evaluations . Goal-framing theory considers three "master goal frames" . First of all, when the hedonic goal frame is in the cognitive foreground, actors are interested in satisfying basic individual needs. The normative goal frame, in contrast, facilitates the generation of collective goods and implies sensitivity toward social expectations, reputation, and reciprocity. The mindreading, or "mentalizing" , virtuosity "to put oneself in the shoes of others" is perhaps one of the most important mental changes in human evolution . Its signature "is enhanced by the fact that it is linked to social emotions, such as guilt, shame, and gratitude" . Finally, the gain goal frame is a mindset related to investments into one's future resources, made possible "by the ability to put oneself into the shoes of one's own future self" . Since the gain goal frame is weaker than the hedonic goal frame, it needs institutional support, as Max Weber highlighted in his famous elaboration of the modern, Western conduct of life . These three overarching goal frames are often antagonistic, and their calibration requires considerable self-regulatory capacities. Each goal advances to the cognitive foreground by pushing the other goals to the cognitive background, whereby the relative importance of each goal depends on the perceived situational context . Lindenberg's goal-framing theory does not simply assume an internalization of norms. It depends on situational cues as to whether a person is in a normative goal Fig. 2 The "social brain" and network segregation along ethnic boundaries in episodes of social exchange frame or not. If he or she is in a normative goal frame, the subsequent problem is to find out which behavior is required in order to meet others' expectations. To this end, a mental model represents the normative aspects of the situation . However, the stability of normative goal frames requires compatible gain-related or hedonic goals in the background -in other words, the desire to avoid public shaming. Goal-framing theory is focused on actors' capacities to calibrate these goals in a situationally appropriate way, rather than distinguishing between slow, automatic-unconscious vs. fast, deliberate-conscious cognitions . It fits better to the analysis of social order and ties in social exchange networks because there is usually a considerable timespan between gift and return . The normative goal frame is active when actors discuss or think about situations where reciprocity is expected. Humans are social creatures. They tend toward "hot cognitions" in social situations such as joint laughter. In "hot cognitions," neuropeptides provide a neuropharmacological basis for prosocial behavior. Their effect, however, is parochial altruism rather than unlimited prosociality-neuropeptides make us more prosocial within our own group, but potentially more aggressive toward out-group members . Since group-mindedness and "strong solidarity" mostly apply to the in-group, perceived group boundaries possibly moderate our disposition to reciprocate, also because of the influence from background goals , which can weaken the normative goal frame. Within societies, there usually is sufficient taken-for-granted consensus about which goal frame should be in the cognitive foreground in a given social situation. This consensus might differ, however, between cultures and societies: "It does happenparticularly in complex, multiethnic, rapidly changing societies-that two or more people interacting with each other are applying different models to any given aspect of the interaction. When they do this, recriminations, conflict, and a breakdown of trust almost inevitably result, because adherence to one model usually violates the standards of any other" . For instance, one party regards an interaction in terms of authority ranking , whereas the other party applies the normative goal frame of reciprocity. Goal-framing theory suggests that such situations can negatively affect the higher-order self-regulation concerning the clarity of one's own self-schema. Cultural confusion can reduce the clarity of a person's cultural self-that is, who one actually is-which can have negative consequences for the capacity to calibrate goal frames . On the other hand, our evolutionary past as hunters and gatherers favored cognitive conditions for "fissionfusion" processes, particularly parochial altruism, but at the same time a remarkable flexibility of group identification . When societies became larger, more inclusive, and more diverse, exchange between different people and groups required "weak solidarity," meaning that the "legitimately expected sacrifice for solidarity is likely to decline with increasing inclusiveness" . Although we are social beings, our inclination toward solidarity declines the more different-culturally or socially-the respective other is. Humans do not just interact in small groups, as apes do. We are, in J. Haidt's words, 90% chimp and 10% bee. The 10% bee component enables us to go beyond our 150 familiar network ties and to interact in highly inclusive, anonymous, and culturally diverse mass societies , for which we need "weak solidarity" and a flexible adjustment of our goal frames. From this perspective, ethnic network segregation results from different ways of how persons or groups calibrate their mindsets and how they construct mental models of the normative aspects of the situation during an episode of exchange. Network segregation along ethnic lines partially results from selective choice, given the opportunity structure, limited information, and perhaps a higher risk of signal error in interethnic dyads during the initiation of a relationship. Moreover, if the normative goal frame is weaker in interethnic dyads and the normative aspects of the situation have a different meaning than in intraethnic dyads, the likelihood of reciprocity might also be lower than in same-ethnic dyads . When deciding on reciprocity, the normative goal frame is active at each momentfor example, when parents and children discuss whether a particular child should be invited to a birthday party or not. On the one hand, the normative goal frame is difficult to override or to push back into the cognitive background in social situations. On the other hand, "weak solidarity" in highly inclusive and ethnically diverse societies makes a difference between intra and interethnic social exchange, which might further stimulate ethnic network segregation and thereby further rigidify ethnic boundaries. The concept of ethnic boundaries explicitly disagrees with essentialist views of ethnic groups and cultures, instead highlighting the social-constructivist aspects of intergroup relations . Ethnic boundaries are subject to agency, to practices, identity politics, and response to stigmatization but can also result in "assimilation" when these practices blur group boundaries in the long run . If the commitment to reciprocity strives for the cognitive foreground and starts framing the situation , substantial cognitive and emotional effort will be required to deny a reciprocation once the actor has accepted a gift. According to "parochial altruism" and "weak solidarity" , the ethnic category of the other person might moderate our social preference for reciprocity. Once an episode has started, the normative goal frame and "neurologically wired" social cognition become important drivers of ties in intra and interethnic dyads, but this cognition makes a difference between in-group and out-group interaction. Network segregation along ethnic boundaries results from two mechanisms: first, from rational choice when persons bring an exchange episode into operation, given the uncertainty in intercultural settings , opportunities, and third-party intervention . Second, ethnic network segregation results from a combined effect of reciprocity and parochial altruism during an ongoing episode if the normative goal frame is not sufficiently supported by the background goals in interethnic dyads, or if the normative aspects of the situation are not interpreted in a way that triggers reciprocity. In a study analyzing longitudinal networks of children's visits at their peers' homes, a continuous-time simulation of a stochastic actor-oriented model showed a strong effect of reciprocity on tie creation . In the empirical part of the present study, in contrast, social networks of adolescents' birthday party invitations will be analyzed, where children and gifts are exchanged and the norm of reciprocity is generally high. Once a person has accepted an initial offer, however, he or she becomes liable to the strong norm of reciprocity. The normative goal advances to the cognitive foreground and the disposition toward reciprocity becomes important in the process of tie formation. Considerable cognitive effort is now required to override the normative goal. In the longitudinal analysis below, the effect of reciprocity will be tested not only for intraethnic dyads, but also for dyads of any other ethnic constellation. Combining the normative goal frame of strong reciprocity with parochial altruism and "weak solidarity" leads to the hypothesis that the reciprocity effect is considerably smaller in interethnic than in intraethnic dyads. --- Data and Methods --- Longitudinal School Class-Based Network Data The empirical analysis is based on longitudinal, school class-based network panel data. The data has been collected for grades 5, 6, and 7 in the years 2011, 2012 and 2013 in the German city-state of Bremen. Pupils' average age over this period is 11.5 years. The focus of this study is the interplay of multiplex networks , ethnic segregation, educational achievement, and wellbeing in school. Response rates of pupils varied from 75.4% in wave 1 to 80.4% in wave 3. Since the participation of schools depended on the school principals' consent, as well as on the teachers' willingness to support this study, there was considerable nonresponse at both the school and class level; one third of all classes in the population did not participate. Since the quality of social network data depends on participation rates within classes, only classes in which either 75% or at least 17 pupils participated have been analyzed. The final analysis was limited to classes that participated in all three waves, so a maximum of 501 students in 21 school classes were available for the analysis. Pupils completed the questionnaire under the guidance of the interviewer in the classroom, so information on networks is available within classes. In accordance with data privacy regulations, the network generator worked in the following way: Clearly visible ID numbers were placed on each desk and lists with first names and numbers were stored in the schools in order to link the observations between the panel waves. Reliability analysis supports the procedure: Matching the information on ego's attendance at alter's birthday party from both perspectives-hosts and guest-leads to a rate of agreement of 95.44% , and a good interrater reliability of 0.725 . Tables 1 and2 show the descriptive statistics of the dyadic and the actor attributes used in the empirical analysis. --- Modeling Network Evolution Stochastic actor-oriented models have been developed for the empirical analysis of network evolution over time . Since panel data is discrete in time , SAOMs estimate the parameters by simulating microsteps between discrete measurements. Based on the model specification and the empirical data, the SAOM simulates actors' decisions during a microstep. They can decide to dissolve or establish a link, or maintain the presence or absence of a tie in a multinomial logit choice model. The model estimates effects on log odds of creation, dissolution, and maintenance of ties. In line with the assumption that each "actor has his or her own goals which he/she tries to advance in accordance to his/her constraints and possibilities" , actors' decisions depend on the evaluation of the utility of each option. Starting values for the utility function are taken from the first observation of the network at time t and become updated with the empirical information of the network at time t + 1 … t + k. For instance, if the first network shows a higher tendency toward reciprocity or gender homophily, a high utility weight will be assigned to decisions in favor of these states. Models run separately for each network, so results are combined in a random effects meta-analysis. Owing to nonconvergence in some networks, the final meta-analysis is based on a maximum of 18 networks. Fig. 3 illustrates the effect of reciprocity on tie creation in the SAOM. During a microstep in a given moment t ego during the simulation, the focal actor "ego" already has an incoming tie from alter. If the utility of reciprocity on tie creation is high, ego will be highly inclined to reciprocate at t ego + Δt , given that there is no better alternative, according to the utility function. Keep in mind that the term "utility" in the theory of the SAOM comes from the econometric literature on discrete choice-models and does not mean that people always behave in a perfectly "rational" way . It has been argued in the present study that reciprocity results from the normative goal frame, which also has a "wired" emotional component. However, since "weak solidarity" and more-abstract norms gained in relevance in modern and diverse societies , there is increasing variation in how people construct mental models of the normative aspects of situations. Not to reciprocate is costly with regard to reputation and feelings of shame, but possibly less costly in interethnic dyads given the tendency toward parochial altruism and weak solidarity. This effect can be identified by estimating the interaction term "reciprocity on creation × same ethnicity." --- Results Table 3 shows four SAOM meta-analyses of the evolution of birthday party networks. Despite the simplicity of the SAOM model specification, the models and data fit quite well, which is also due to strong and robust effects of the dyadic covariates "spatial proximity" and "friendship ties" . These networks capture an important part of network structural effects. Models 1 and 2 estimate the effect of "reciprocity" on creating a tie; models 3 and 4 estimate its effect Fig. 3 Effect of reciprocity on tie creation in a microstep at a given simulated moment on maintenance of a tie. Each first model estimates only the main effect of reciprocity on tie creation; each second model estimates the interaction effect "reciprocity × same ethnicity." To begin with, we focus on the effect of reciprocity on tie creation in M1 and M2. First and foremost, both models show a strong, positive and highly significant effect of reciprocity on tie creation. In addition, the effect of transitive triplets has been estimated. Transitive triplets are transitive triads in which there is a tie from actor A to actor B, from actor B to C, and from actor A to C . In contrast to cyclic triplets, with ties from A to B, from B to C, and from C to A, transitive triplets are a main structural characteristic of human social networks. They are a network-structural expression of social-cognitive balance in terms of "friends of my friends are my friends" . Transitive triplets show a positive and highly significant effect. The same is true for spatial proximity between ego's and alter's residential locations and the effect of friendship ties on birthday party networks. Unsurprisingly, the latter is strong, significant and positive as well. Birthday party networks are segregated along gender lines. The effect of "both are girls" is strong and significantly positive in all four models: the log odds of observing a tie in the birthday party network are considerably higher for two girls compared with dyads of two boys, or mixed dyads. Overall, we also find a positive effect of similarity in grades in M1, but the effect turns insignificant in M2. Furthermore, spatial proximity and contact among parents tend to increase the log odds of a tie in the birthday party network. Important for our research question is the interaction effect in M2. Here, the interaction of ethnic categories with reciprocity on tie creation is significant and positive. How should we interpret this interaction? In M2, the odds ratio for a particular covariate constellation results from combining both terms-main effects and interaction effect. same ethnicity ¼ exp 1:1325 þ 0:1121 þ 1:0365 ð Þ ¼ 9:78 other ¼ exp 1:1325 ð Þ¼3:10 Figure 5 gives a visualization of the overall effect. Recall that the effect of reciprocity on tie creation is the effect of an incoming tie on reciprocation when it has not yet been reciprocated . It is the reciprocity effect compared with a situation without an incoming tie. The overall effect of reciprocity on tie creation is very strong in dyads of same ethnicity , but reciprocity is also strong in all other dyadic ethnic constellations . Following from this, boundary-crossing social exchange is certainly possible. Actors deliberately decide whether to start an exchange episode or not, and whether to offer or accept a "gift" or not. Given their preferences, they evaluate the utility of becoming involved and develop a subjective expectation of how likely they are to realize benefits by doing so . Once an exchange episode has come into operation, in contrast, the strong tendency toward reciprocity drives the further evolution of the network. According to the theoretical arguments, network selforganization by reciprocity and the normative goal frame become important during the exchange process. Overriding the disposition toward reciprocity, which is ingrained in human biology , requires cognitive and emotional effort. This tendency toward reciprocity is generally strong, also in interethnic dyads, but particularly strong in intraethnic dyads. An additional mechanism of network segregation along ethnic boundaries is thus the ongoing exchange process and the difference in the tendency toward reciprocity between intra-and interethnic dyads, which might result from "weak solidarity" in more diverse and inclusive societies . In models 3 and 4 in Table 3, "maintenance" means that a tie which is already mutual will be kept at a given moment. This is not the case empirically. The results highlight the importance of a strong commitment to reciprocity, but having a mutual tie does not necessarily result in a sustainable social relationship in the birthday party network. Ethnic origin can affect network segregation when making or accepting a gift during the initiation of a tie, but also when deciding on reciprocity during the ongoing exchange. Goal-framing theory makes an important contribution to reconceptualizing network ties in a longitudinal perspective. Of course, in our daily activities several cognitive modes are always active: the hedonic, gain, and normative goal frames . During an ongoing exchange episode, actors sometimes think about whether or how they should further engage. Network self-organization at the macro level results from the fact that the relevance of a cognitive mode can change in the course of an episode of social exchange at the micro level-or, in other words, the shifting of a goal frame between cognitive foreground and background. If the normative goal frame is in the cognitive foreground, actors must invest considerable emotional and cognitive effort to "override" the biologically ingrained tendency to reciprocate , once an initial offer has been made. On the other hand, the normative goal frame becomes weaker in interethnic dyads in highly diverse and inclusive societies. Interestingly, results in Table 3 do not show any significant effect of reciprocity on the maintenance of ties. Consequently, the strong tendency toward reciprocity exists only in each particular round of "tit-for-tat"-cards seem to become reshuffled after reciprocation of an invitation. --- Summary and Conclusion Recent developments in social network analysis focus on the evolution of networks over time. Longitudinal network data in combination with appropriate simulation methods of network evolution between discrete measurements leads to a redefinition of a core concept in social network analysis, namely the edge or network tie, the link between two nodes. Focusing on exchange relationships gives way to the analysis of social network ties as episodes . Episodes have a starting point, they proceed over time, and they usually also have an ending point. Having dissected a social exchange episode into different elements, we can identify different mechanisms of how network segregation along ethnic boundaries emerge. Following the arguments in the theoretical section of this study, rational choice might explain the initiation of a social exchange episode, given the respective opportunities, whereas the normative goal frame of reciprocity is important during the ongoing episode. In social network analysis, the term "self-organization" describes the macrolevel manifestation of our ingrained tendency toward reciprocity at the microlevel. Based on neurophysiological structures, reciprocity in networks is definitely an important aspect of a network's self-organization. Reciprocity is also a strong and robust effect in birthday party networks. It has been estimated on the creation of ties, which indicates the propensity to reciprocate a tie when it has not yet been reciprocated. The effect of reciprocity is generally strong, but even stronger in dyads of same ethnicity . The interaction "reciprocity × creation" with same ethnicity partly explains ethnic segregation in networks: it represents the process of reciprocity within one's own group, whereas the reference group "other" represents the dynamics of boundarycrossing social exchange. These differences in reciprocity on tie creation within and between ethnic groups show ethnic boundaries at work. First, network segregation along ethnic boundaries results from the selection of partners with whom actors initiate a social exchange relationship. This is usually driven by the hedonic or gain goal frame , given their respective opportunity structure. The initiation period of the exchange episode ends when the initial offer has been accepted. Second, accepting an initial offer activates the normative goal frame. According to the considerable strength of the reciprocity effect on tie creation, even in the ethnically heterogeneous reference group "other" , it seems to be difficult not to reciprocate once an initial offer has been accepted. Nevertheless, following from the difference between these effects, an important part of the ethnic segregation of networks is due to the fact that boundarycrossing exchange has a lower likelihood of being reciprocated. It is known from cooperation experiments that actors "favor in-group members not because of altruistic sentiments toward those who are similar to themselves, but because they expected reciprocation from in-groupers and not from out-groupers" . This is in accordance with Greene's argument that less positive emotions and negative associations are more prevalent in intergroup relations , even though, of course, "being wired for tribalism does not mean being hardwired for tribalism" . Calibrating different goal frames depends on the capacity to self-regulate. Self-regulation is a crucial aspect of Dunbar's "social brain" , which, in turn, is a product of human evolution . Social networks and ethnic network segregation are indeed results of our social brains. The result is also in line with the distinction between "leap of faith" and "testing the water" -interethnic social exchange seems to be closer to the latter type. Regarding network ties dynamically, as exchange episodes, is appropriate to an agency theory based on dynamic cognition: hedonic or gain goal frames are in the cognitive foreground when deciding to start an exchange episode or not, given the opportunity structure, whereas norm-oriented behavior moves to the cognitive foreground when responding to an initial offer and deciding on reciprocation. In modern, inclusive and diverse societies, "weak" solidarity leaves uncertainty on normative aspects of social situations. Therefore, hedonic and gain goal frames sometimes remain strong in the cognitive background. Proponents of rational choice could object that neuronal activity remains unobserved in network studies based on survey data. Fair enough, but the same applies to actors' internal computations . Contrariwise, given the evidence cited in this study, it is rather difficult to explain why the neural basis of different cognitive modes should not influence ethnic boundaries. Combining social network analysis, goal-framing theory, and research on ethnic boundaries is not yet common in the field of immigrant integration research. Hopefully, an interdisciplinary perspective is currently emerging . Future research should consider more systematically the contextual embeddedness of network processes, and studies on ethnic boundaries should combine the episode concept of network ties with network ecologies, as it has been done in a recent study .

How does segregation along ethnic boundaries emerge in social networks? Human evolution resulted in highly social beings, capable of prosociality, mindreading, and self-control, which are important aspects of the "social brain." Our neurophysiologically "wired" social cognition implies different cognitive goal frames. In line with recent developments in behavioral theory, the present study defines network ties as episodes of social exchange. This dynamic definition can account for shifts in goal frames during an exchange episode: whereas deliberate choice and hedonic or gain goals drive the initiation of a tie, given the opportunity structure, the normative goal frame activates a strong dynamic effect of reciprocity, which limits actors' choice set and appears as "self-organization" at the network level. Longitudinal analyses of 18 birthday party networks comprising 501 students support the definition of network ties as exchange episodes, as well as the relevance of humans' inherent tendency to reciprocate. However, reciprocation is much stronger in dyads of the same ethnicity than in dyads of different ethnicities. Network segregation along ethnic boundaries results from deliberate decisions during the initiation of an episode, but also from different commitments to reciprocity during the ongoing exchange process, depending on intra or interethnic dyadic constellations.

Background Psychoactive substance use, such as drinking alcohol, cigarette smoking, khat chewing, cannabis use, and use of illicit drugs, is a public health concern among youth worldwide . Its negative consequences including academic failure, risk behaviors including risky sexual behavior, substance use disorders, and disability, become major threats for the youth population including university students [1,2]. Literature shows prevalent substance use among college students [3][4][5], including those attending universities in low and middle income countries such as Ethiopia [6][7][8][9][10][11]. In Ethiopia, the youth demographic aged 15-29 years accounts for 28% of the total population [12][13][14] and the number of young people joining Universities is increasing over time. Students from different areas of the country where substance use may be prevalent attend Ethiopian universities for higher education. Among Ethiopian Men, 46% use alcohol 27% Khat and 4% Tobacco. In Tigray region, where Mekelle University is based, 91% of men surveyed and 71% of women surveyed, consume alcohol [12]. Psychoactive substance use has become a pressing concern among students in Ethiopian Universities, where rates range from 16 to 62% [6,7,15]. Students often stay for three to six years on campus to attend higher education programs in Ethiopian universities, which could make them vulnerable to harmful behaviors like PS use. However, the drivers of the use among University students remain poorly documented. Understanding these factors that drive behavior through association, though not necessarily causation, will be an important step towards designing effective preventive measures. Previous studies exist, but most of those have been quantitative studies. These studies revealed factors related to PS use including peer influence, academic reasons , recreation, and anxiety management [7,9,[15][16][17]. Mass media advertisement of alcohol beverages for example, is also reported as a factor [11,[18][19][20]. However, the quantitative approach used in previous studies resulted in restricted capacity to explore the range and depth of the these associated factors to use substance among this population. In addition, there is a dearth of evidence or detailed description of the drivers, the context. and how these interact to clarify PS use. This research gap decreases the ability of policy makers and programmers to use existing literature to design effective preventive measures for treatment of youth. The investigators of the current study followed a qualitative approach to facilitate wider and deeper understanding of the drivers to use PS. Interventions to reduce the health burden of substance use are more effective if programs are backed by contextualized evidence. Thus, the current study aimed at exploring the driving factors for tobacco, alcohol, Khat, cannabis and illicit drugs use, here after collectively referred as PS use, among Mekelle University undergraduate students with the intention to assist in development of future interventions. The inclusion of these specific substances follows the WHO Alcohol, Smoking and Substance involvement classification found at http://www.who.int/substance_abuse/activities/assist/en/. --- Methods and participants --- Study setting The study was conducted among undergraduate students attending Mekelle University from April to May 2017. MU is located in Mekelle town, the capital of Tigray regional state, Ethiopia. In 2018, the University had 26, 371 undergraduate students in six Campuses [21]. The study was part of the baseline assessment for a large scale study on stage specific behavioral therapeutic intervention for PS use among Mekelle University students, Ethiopia. A quantitative study was conducted to determine the prevalence of problematic PS use among MU students followed by a qualitative exploration of the driving factors. Specifically, the current article aimed to explore contextual drivers for PS use among University students. --- Study design An exploratory qualitative study design was employed to understand the drivers, defined as likely associated factors not proximal causes, for PS use among University students. --- Sample size and sampling procedure Five focus group discussions each with 8-10 participants were conducted. In succession to the FGDs, 11 in-depth interviews were conducted; seven with students , two with proctors and one with a bar owner. Participants, including proctors of student dormitories and bar owners , were chosen due to the likelihood of having information on University students' substance use. Participants were selected purposively [22] based on their characteristics and expertise in the subject matter. The investigators also asked participants follow up questions for issues raised during the discussion/interview that need to be completed, confirmed, clarified. In addition to the FGDs and IDIs, the study also utilized a Key Informant Researchers' approach to better capture drivers for PS use. Four key informant researchers , two substance user students and two non-users students, were purposively recruited with the role of providing information, introductions, and interpretation as well as access to observations that an outsider would not normally have [22,23]. They were trained and oriented to explicitly observe and search out salient views to illustrate the complex webs of driving factors. They used informal discussions and non-participant observations with substance user students, drug vendors, proctors, security/ guards, and also conducted observation of evidence of substances previously used in the MU compound to broaden their understanding. Each KIR was interviewed three times within two weeks interval for new insights and understandings in the regard. Semi-structured guides with open ended questions were used for the FGDs and interviews. The FGDs were conducted first to explore the range of opinions on the subject matter followed by interviews for deeper understandings. Guides were continuously modified as the data collection moves forward to capture emerged issues. FGDs and interviews were conducted in place convenient to the participants where privacy is kept and recording is possible with minimal sound disturbance. --- Trustworthiness The investigators reflected on and considered their prior conceptions, expectations, and experiences before the study began, to reduce introducing potential bias while they collected, transcribed, coded and analyzed the data. Data from FGDs, interviews with key informants and KIRs were triangulated for similarities and variations. The authors adopted an inductive approach and conducted analysis side to side of the data collection to catch the emerging issues in the succeeding discussions/ interviews. Investigators also conducted debriefing sessions on a daily basis. --- Data analysis Investigators conducted data collection and analysis concurrently. Audiotaped data were listened to repeatedly for comprehension and familiarity, these were transcribed verbatim and imported into Atlas.ti qualitative data analysis software version 7.5 for coding and analysis. Field notes and investigator memos were also linked to respective files to assist analysis. Independently, two investigators openly coded the data. Then, the two investigators came together to check and discuss the inter-coder reliability. Followig this, similar codes were systematically categorized and unique themes emerged. After themes emerged in first round analysis, the investigators again reviewed transcripts for a second round of analysis aimed to check whether codes and themes were grounded in the data and if important insights and dimensions of each theme were fully recognized. --- Ethical consent Ethical approval and clearance was obtained from the ethical review board of the College of Health Science at the Research and Community Service office, Mekelle University . Written consent was sought from each participant. --- Results --- Participant socio-demographic characteristics The age of the students ranged from 20 to 27 and all were the second year students and above . The driving factors emerged were feeling of helplessness following detachment from family, prior experience of substance use, socialization reasons, low academic performance, physical environment, and sub-optimal organizational support . Lack of support from the community was also repeatedly reported as sub-optimal, which left students feeling helpless and lonely. In high school, your teacher worries about his student's future career. He tries to help you to succeed to the edge of your potential. But here [in University], it seems it is not their concern if you are going to be dismissed; it is not surprising to them. Therefore, you feel that there is no one around you: no one is there to help you. Then, you will make the substance as an alternative. [20-years-old,Female-student]. Absence of parental support also led to mismanagement of pocket money provided by family, which often led them to PS use. Participants repeatedly mentioned that students with relatively greater amount of pocket money often got involved in extensive and poly-substance use. Participants also frequently mentioned that the University's administrative body, the student's union office and the proctors in University rarely offer help to the students, which make them feel helpless. This view was captured in the quote below. … After their life gets ruined due to substance use, the worst [problem] on the campus is that there is no care provided to them even the students themselves" [Male-proctor]. Participants also mentioned that students coming from areas where substance use is common share the community's positive salient belief that favors that substance use. For students who come from areas of the country where Khat chewing is common, Khat could be seen as means of entertainment and socialization [ KIR 2]. Another student also reflected how his parents' Khat use influenced him to use it in University. I was observing my family buying Khat every day at home for consumption. Then I feel there is a reason why they use it. Then I was planning to experiment with it one day and I used it when I joined University" [21 years old,male]. --- Theme 3: Socialization reasons Reasons related to socialization were the most frequently cited driving factor for PS. Peer pressure, curiosity, feelings of inferiority, local or cultural proverbs that justify PS use, poor socialization skills, and social celebrations were among the sub-themes emerged. --- Peer pressure Peer pressure was reported among the students. Students experienced peer pressure from other students when encountering dormitory life, classmates, older or more 'experienced' students, groups and the networks they establish. Here [in University], you're eager to build a friendship with other students. Unfortunately, you may come across students with exposure to substance use. […] Then, what comes is invitation, just to try it. We all are young and the peer influence is stronger [23 years old, 5 th year]. Freshmen students often experienced peer pressure from older students on campus, and were influenced by socialization cues. Conversely, senior students purposefully approached freshmen students to benefit from sharing the younger students' money in order to cover the cost of substances. Consequently, the older students facilitated freshmen initiation of substance use. One KIR stated: Fresh[men] students come with more money while they join University. Then, they build a friendship with senior students who smoke a cigarette, chew Khat or drink alcohol. Therefore, the freshmen start using substance following the pressure of the senior students [KIR-2]. Freshmen students' discomfort with refusing peer invitations to experiment with PS made them vulnerable to the use. A male user underlined this view: […] actually, you may refuse once or twice; but if a user convinced you that it doesn't have any consequence it will be difficult for you to resist more [21-years, 3 rd -year]. Participants also frequently mentioned that students consider using substances as an indication of worldliness or being more modern. Freshman students and those from the semi-urban residence are often motivated by this factor. One user's FGD participant stated this: Smoking is mostly done because others are doing it. We consider that he is smoking because he is modernized , so, someone wants to looked modernized and smoke [22-years, User]. --- Feelings of inferiority Participants reported student variations in residence background, academic performance, pocket money they receive from family, dressing, and communication styles influential in making students feel inferior to their peer. In particular, students from rural or semi-urban residence feel inferior, which pushes them to PS use relieve associated anxiety linked to it. One PS user KIR reflected: We may get relaxed for the moment in the dorm following the substance we used. The non-users are considering it as an indication of joy and pleasure. They assume that we are from richer family while they are not. [KIR-2]. Such feeling was also evident among those who used PS in lesser amounts, the less costly type and for shorter periods of time. The situation drove them to diminish the difference whenever they got an opportunity. --- Poor socialization skill Participants also reported that students' poor skills for creating and maintaining social relationship made them isolated from peers, thus linking with PS use. In addition, students who quarrel with dormitory mates or classmates, or those with recent breakups of friendship preferred to spent most of their time alone and restrict their social interaction. According to the participants, this situation motivated students to consider PS use as means of getting relief. A male user stated,: One year back, one student was involved in excessive drinking and cigarette smoking following break up with his girlfriend. Finally, he commits suicide [27years old, 3 rd -year]. KIRs also shared their experiences that students often participated in extensive substance use following someone declining their request for friendship or after a breakup with opposite sex. --- Ceremonies & Festivities Participants also disclosed that events like cultura holidays and birthday celebrations facilitated initiation of PS use, particularly alcohol drinking. A KIR underlined that the majority of students left off of campus for an event celebration, which constituted a breakdown event for most. They then wanted to repeat it again and some continued to use PS frequently. A female non-user stated her observation: … A female student who never drank alcohol may go to her friend's birthday celebration. […] After drinking, she may get out of her control and involve an activity that she may not want to do in normal condition" [2nd-year, female-student]. --- Theme 4: Physical environment Easy access to substance use, the absence of alternative entertainment activities and excess free time also emerged as drivers for PS use. --- Ease of access Participants repeatedly mentioned that easy access to khat, alcohol, and cigarettes around the campus drives students to use it. The numbers of Khat Vendors, Shisha houses, and bars are increasing with time around the gates of the campuses. A female user in an FGD stated it this way: "… when you fail to handle the academic issues in the university, you would look out to the bars in front of the gates. No need to expense a lot, no need to be tired because it is just there in front of the gate" [21 yearold,3 rd year]. Participants also stated that it was common to see students making a line at shops in front of the gate to buy cigarettes after lunch. Participants also noted that easy access to substance contributes to relapse of use after quitting. A female student stated it like this: "Let say, you have decided to cut it down. Then, the problem would be where would you spend your time? You are already surrounded by the substances. You may decide to sleep without taking alcohol; however, you are hearing disturbing music from the bars for the whole night, perhaps it may be the music you like. Then, you [feel the] urge to go there" [21-years-female user]. Similarly, a female smoker stated," Sometimes when there is no class, I visit my aunt for a week. I totally stop smoking then. But, when I come back again to the campus, I would start it again" [KIR-2]. --- Shortage of alternative entertainments Participants frequently mentioned the shortage of alternative entertainment activities drives students to PS use. The university compound has only a limited number of entertainment areas, which causes students to feel frustrated. This pushes the students to use PSs. A male user stated it: There are no entertainment centers in the compound. The students are closer to the substances than to other alternatives to spent time. Fresh students are often attracted to the substances because there are no other alternatives [21-years-old,3 rd -year]. --- Excess free time Along with the shortage of alternative entertainment centers, presence of excess free time was also reported to be linked with PS use. It was particularly reported during the first and second months of each academic semester because instructors do not start class on the expected start date, which creates an opportunity to have excess free time for PS use. Theme 5: Sub-optimal institutional support Low administrative support was also reported to be linked with PS use. Participants mentioned three issues: the lack of alternative entertainment centers, poor enforcement of rules that restrict access to and use of PS around the campus, and low availability of interventions that offer help to quit PS use. Weakness in enforcement of the regulations related to substance use inside the university compound also resulted in continued use by students subsequently. A member of the student representative office also mentioned: Had it been followed by serious administrative measurements and I became aware of it, I would use it less in the compound" [23-years old, 4 th -Year]. Some participants also raised the issue of advertisement for alcohol beverages around campus as one that also drives students to consider using the substance. Posters, billboards, other media, and campaigns for concerts around the campus were all reported as contributors to intention towards and use of substances among students. --- Theme 6: Dissatisfaction with academic conditions Participants reported dissatisfaction with academic conditions as frequently related to PS use. The participants explained this link in relation to low academic performance , low quality of education provided, and hopelessness regarding future education and career. --- Perceived and actual academic failure Fear of academic failure was reported as closely linked with students chewing khat, which becomes much more apparent when exams approach. Students assumed that it would help them to stay alert for reading. However, after their first use, they reported continuing to use it even after the exams were over. An FGD discussant reported, […] the main reason why students do start substance use on this campus is during stress preceding an exam. If students do not cover the handout provided or if they know that they scored lower on the exam. They start smoking and khat chewing to relief the anxiety [22-year-old,5 th year]. Participants also mentioned students start to use substance at the end of the academic year following low academic performance. An FGD discussant stated:Think! If the efforts you made over the year were not fruitful, it is really disappointing. Students fail to score pass mark in our department and many of them initiate substance use [22-years, 2 nd -year]. --- Factors related to quality education Participants mentioned that University instructors' sub-optimal effort to educate the students is also implicated in PS use. Instructors were reported as reluctant to start and finish the course in a timely manner. Thus, some chapters of the course were often left uncovered and given to students as a reading assignment for the final exam. In addition, there were reportedly instructors who did not suggest reading materials, did not account for student's variation in receptiveness to the class material, did not show scores for assessment, and were not transparent while grading. Participants reported that the psychological burden related to these issues was linked with PS use. A female FGD participant stated: It is common for instructors to provide us reading material today for an exam on the following day. He may also tell us to read ourselves for all the uncovered chapters. He is [beyond questioning] in grading. Additionally, the students mentioned that dissatisfaction with the limited educational inputs, including for example a shortage of books in a library and internet connection to download supporting materials, mediates low satisfaction, and is linked with PS use. --- Feeling hopelessness about future and career Though students mostly reported initiating substance use for reasons like entertainment, a way to pass time, for studying, as well as others, one very relevant factor was hopelessness about their future life and career. A 3rd-year female substance user stated: Alcohol gives pleasure and entertainment while it is in a limited amount and occasionally. However, what makes you repeat it is hopelessness: hope regarding your future life and career [21-years, 3 rd -year-Female]. A KIR also stated: For many senior students, their future life looks empty. They have lost the thoughts they build during preuniversity but [are] filled with none in the University. You may see that your previous wisdom and thought has collapsed in the new environment [university] but you didn't get its replacement. This creates a vacuum and leads you to propose life is empty! Everything is empty! […] and students find substance use as the place to prove their proposition [KIR-1]. Freshmen students may be dissatisfied with their assignments based on their self-evaluation related to a future career. The poor perception of possibility getting a job in their area of the study also creates anxiety for students, which in turn predisposes them to PS use. An additional file also provides more quotes on each theme . --- Discussion The study identified a range of individual, interpersonal and organizational drivers for PS use among university students. Initially, the students suffered from loneliness and feelings of helplessness related to lack of parental oversight. Loneliness, defined as a subjective deficiency of social relationships in a quantitative or qualitative way, was reportedly associated with indulging in PS use [7,24]. The levels of moderate to severe loneliness experienced among university students were reported to be 35.6% in Germany [25], and 60% in Turkey [26]. Loneliness, which is likely to be more frequent among first year students, is also correlated with poor parental status, divorced families, and low levels of engagement in romantic relationships [26]. Conversely, parental supervision and living with family reduces risk of substance use [27][28][29]. Our results, and those of other studies thus suggest that absence of parents, and loneliness, may drive students to consider PS use. Students' previous exposure also emerged as being an associated factor for PS use in our study and in others. Lifetime experience of substance use before students join university and common use among the peer community may contribute to use in university [12,[30][31][32][33]. In addition, students who have lived in a place where PS use is common are more likely to use it in university [34,35]. In addition, students with family/relatives who use PS such as alcohol, khat, and cigarettes [6,7,9,20] are more likely to use these substances in university. Peer pressure emerged as a prominent socialization-related factor linked with PS use. Students used PS to be accepted in their social circles. This finding is consistent with previous studies in Ethiopia and abroad [4,7,36,37]. Psychoactive substance user students often perceived that their peers also used them, sometimes more frequently than themselves [7,29]. The current study explored the powerful influence of local norms in creating peer pressure. The norms communicated the benefits of use, inciting new students to experiment. In addition, students' feeling of inferiority was another factor related to in relation to PS use among the students. Feelings of inferiority among young people were described to be associated with anxiety and depression, leading students to consider using PS for status reasons. Students entering universities could potentially vary in socio-economic background, academic performance, and intellectual ability, which could be related to feelings of inferiority. Similarly, previous international studies also show that university students' feelings of inferiority could result in stress and procrastination [38][39][40][41]. In these situations, the students may consider PS use as coping up mechanisms for the inferiority. To establish and maintain relationships is not an easy task for university students. Failure to establish or maintain relationships or friendships with the same or opposite sex could be followed risky behaviors like problematic PS use, as was reported in our study. Other studies identified the use of PS as a means to get relief from anxiety [8,17,29]. For example, Alcohol is perceived to make people more sociable, braver and stronger, relieve anxiety and reduce fears of conflict situations [17,35]. Event celebrations including birthdays, holidays, post-exam parties, and others also was also found as strong socialization reason for PS use among university students in our studies. These are also acknowledged in previous studies [42][43][44]. Physical environments conducive to PS use around campuses similarly were reported as being linked with PS use in our study. With the limited range of recreational alternatives inside the university compound, students considered PS use to relax and pass time. Use of substances to relax is among the most commonly mentioned reasons for PS use among university students in other studies [7,8,29]. In addition, the perceived and actual ease of access to the PS created motivation to use it among participants of the current study. Access to PS use influences young people's PS use [6,35,45,46]. This may imply a need to impro theve range of recreational alternatives for students. Universities in lower income countries may apply less attention to provision of quality and quantity recreational options for the students, which should be remedied. The current study also suggested that there is sub-optimal institutional support to restrict access to PS use around the campuses, and to assist students who may be suffering from substance abuse. The perceived ease to access PS in our study was high. Moreover, there was weak enforcement of organizational rules and regulations to restrict access. Media campaigns and promotion of substances around campuses was also reported. Previous studies have illustrated that media predisposes experimentation with PS use among university students [36,45,47]. Dissatisfaction with academic conditions was reported in relation to PS use in the current study, and was explained by dissatisfaction with: the assigned field of study, anxiety related to future employment opportunities, poor academic performance, and low quality of education provided. Academic dissatisfaction was also reported as reason for PS use in other Ethiopian settings [34,48]. Students in our study and in others reported use of stimulants to help them concentrate [7,15]. An important finding here was that hopelessness about career and future life in general was linked with consistent PS use. This was similarly reported in relation to cigarette smoking among college students in Turkey [49]. A previous study in Ethiopia also linked feelings of hopelessness with PS use among senior students [48]. Students' principles, salient beliefs, and their approach to life may transform as they proceed through university with multi-dimensional exposure to the environment and campus life. Failure to successfully to adapt may result in hopelessness, and association with self medication using PS. --- Strengths and limitations of the study While the study benefitted from strengths including local research team who had expertise in qualitative research and were aware of cultural and social context within the student and university environment, the study is not without limitations. The first limitation is the potential reliability of self-report by participants on their substance use . Self-report may be incorrect or incongruent, and individuals with substance use issues may lack insight into their own motivations. In addition, participants may have omitted information on the basis of social desirability, leading to some bias. --- Conclusions and recommendations University students in Ethiopia, and particularly in Mekelle, reported experiencing multiple factors linked to psychoactive substance use. These factors, or drivers, were found at students' individual and interpersonal level, and were also evident at structural and organizational levels. Loneliness and previous exposure were linked with PS use among university students. Students' inability to overcome stressful issues such as social setbacks and university conditions may be an important factor related to substance use disorders. In addition, academic matters, sub-optimal physical and organizational environment, were reported to be linked with PS use among this population. The current study suggests an urgent need to provide proactive multilevel interventions to address a range of driving factors among university students to prevent morbidity and disability arising from substance use disorders. Further stronger studies such us grounded theory approach may be helpful to consolidate the drivers for PS use among students. --- Additional file Additional file 1: Codes-quotations list. --- Availability of the data and materials The tools used for the study and the data that supports the findings in the study are fully available through the authors. --- Author's contribution AG and ZH conceived and designed the study; lead the data collection process. ZH analyzed the data and wrote the first draft of the manuscript. AG and AB reviewed the draft critically for content and language, and all authors revised and approved the final draft. --- --- --- Competing interest The authors declare that they have no competing interests. ---

Background: Psychoactive substance (PS) use is a public health concern among University students. Understanding the factors underlay the use helps to underpin effective preventive interventions. However, there is dearth of exploratory studies on the drivers of psychoactive substance use in Ethiopian universities. Here, we aimed to explore the drivers for psychoactive substance use among Mekelle University undergraduate students. Methods: Exploratory qualitative study was conducted from April 1 to May 30, 2017. We conducted five focus group discussions (FGDs) and eleven in-depth interviews (IDIs) with students, proctors and bar owners. We also conducted three round interviews within two weeks interval with each of four key-informant researchers (KIR). Participants were selected purposively and the investigators conducted the discussions and the interviews using semi-structured guides. Data were audio-recorded, transcribed verbatim and imported into qualitative data analysis software for coding and analysis. An inductive approach was applied to crystalize non-repetitive emerging themes overarching the drivers for psychoactive substance use among university students. Results: The following themes emerged as drivers for psychoactive substance use among University students; (1) feeling helpless following detachment from family, (2) prior experience with substances, (3) socialization reasons, (4) low academic performance, (5) physical environment (explained by easy access to substance and limited recreational alternatives), and (6) sub-optimal organizational support. Conclusions: Multiple drivers that range from individual to structural levels are involved in university student's use of psychoactive substances, with socialization process at the center of the factors. Thus, the study appeals for a range of multifaceted interventions directed to the individual, interpersonal and organizational level factors.

Introduction Social simulation consists in the modelling of social systems, including economics, organization, politics, history or social-ecological systems , for the study of their behaviour and emergent properties by the performance of computer simulations . Regarding the simulation of social relationships , Sibertin-Blanc et al. proposes a formalization of the Sociology of Organized Action which studies how social organizations are regularized, as a result of the counterbalancing processes among the power relationships of the social actors. According to this theory, the behaviour of each actor is strategic while being framed by his bounded rationality . In this approach, the interaction context defines a social game, where each actor adjusts his behaviour with regard to others in order, as a meta-objective, to obtain a satisfying level of capability to reach its goals. The aim of a social game is to find stationary states, i.e. a configuration where actors no longer modify their behaviour because each one satisfies himself with the level of capability he obtains from the current state of the game, so that the organization is in a regularized configuration and can durably operate in this way. The formalization implemented in the SocLab platform enables to define the structure of an organization as an instance of a generic meta-model, to study its structural properties with analytical tools, to explore the space of its possible configurations , and to compute by simulation, as a result of the social game, how it is plausible that each actor behaves with regard to others within this organizational context. The SocLab framework has been applied to the study of concrete organizations on the basis of sociological inquiries. However, in some cases, the simulation algorithm that makes actors to play the social game provides results about the behaviour of some actors that do not accurately match the field observations. This gap between the observed and the computed behaviours can be ascribed to the fact that SocLab neglects emotions. However, it is well known that, along phenomena such reputation and trust , social emotions are an essential driver of the regulation of actors' behaviours within organizational settings. Consciously or not, social actors seek to experience positive emotions and to avoid negative ones . Thus, they anticipate the possible outcomes of their behaviour on themselves and on others in proportion of their moral sensitivity. Thus, a moral sensibility parameter has been introduced in the SocLab's decision-making process of actors. This parameter incites an actor to select a behaviour that satisfies not only its own capability to reach its goals but also its contribution to the capability of others and so the proper working of the whole organization. By the way, the consideration of this individual parameter shed light on the social emotions that actors are likely to feel within organizations. To this end, we follow the Ortony et al. theory of emotions Ortony, Clore and Collins to propose a quantitative measure of moral emotions assessed in terms of the actor's situations at SocLab regulated configurations, that is configuration resulting from simulations. A preliminary work was presented in Terán et al. . To illustrate this proposal, simulation results of a Free Rider model are offered, in which we have found the following tendency: when some actors have their largest value of moral sensibility , and consequently are strongly collaborative, other actors take advantage of this and exempt from collaborating. Thus, the best level of collaboration within a System of Organised Action is reached when actors' ms is somewhere below the maximal value ). The paper is organized as follows. The second section introduces the SocLab modelling framework. The third section gives a short overview of the OCC theory. Section 4 explains how the moral sensibility parameter is introduced in the learning algorithm, and defines some quantitative measures of emotions. Section 5 presents simulation results for a Free Rider model. And, finally, Section 6 depicts some conclusions. --- SocLab To enable the modelling of social relationships between the actors of an organization, SocLab proposes a meta-model that catches the common concepts and properties of social organizations and is instantiated on specific cases as models of concrete or virtual organizations or, more generally, SOA . Accordingly, the model of the structure of an organization is composed of instances of the Actor and Relation types that are linked by Control and Depend associations. Figure 1 shows the meta-model of organizations' structures as a UML class diagram. A relation is founded on an organization's resource, or a set of related resources, that is controlled by a single actor. Resources are material or cognitive elements required to achieve some intended actions, so that their availability is necessary for some actors to reach their goals. The state attribute of a relation represents the behaviour of the controller actor with regard to the availability of the resource for the ones who needs it. Its range of value SB goes from the least cooperative behaviour, -1, of the controller preventing the access to the resource, to the most cooperative behaviours, 1, favouring this access, while the 0 value stands for neutral behaviours. The stake attribute of the dependence of an actor on a relation corresponds to the actor's need of the relation to reach its own goal, on a scale: null ¼ 0; negligible ¼ 1; . . .; significant ¼ 5; . . .; critical ¼ 10: The effect function evaluates how much the state of the relation makes the resource available to the actor, so that effect r : A × SB r → [-10, 10] has values in: worst access ¼ À10; . . .; neutral ¼ 0; . . .; optimal access ¼ 10: In addition, actors may have solidarities the ones with regard to others, defined by as function: solidarity a; b ð Þ-À1; 1 ½ ; where negative values correspond to hostilities and positive values to effective friendships. Defining the state, or configuration, of an organization as the vector of all relations states, each state of the organization determines on the one hand how much each actor has the means he needs to achieve his goals, defined as: satisfaction a; s ð Þ ¼ X c A A X r A R solidarity a; c ð Þ n stake c; r ð Þ n effect r c; s r ð Þ: influence a; b; s ð Þ ¼ X r A R; a controls r X c A A solidarity b; c ð Þ n stake c; r ð Þ n effect r c; s r ð Þ: This interaction context defines a social game, where each actor seeks, as a metaobjective, to obtain from others enough satisfaction to reach its goals and, to this end, adjusts the state of the relations he controls. Doing so, it modifies the value of its influence and therefore the satisfaction of actors who depend on the relations it controls. The end of a social game is to reach a stationary state: there, actors do no longer change the state of the relations they control, because everyone accepts his level of satisfaction provided by the current state of the game, so that the organization is in a regulated configuration and can steadily work in this way. The actors' strategic behaviour is framed by their bounded rationality , where the actors' decision-making process is implemented as a process of trial and error based on a self-learning rule system. Each actor manages a variable that corresponds to his ambition, and the game ends when the satisfaction of every actor exceeds his ambition for details about this collaborative learning process. To sum up, each simulation run yields a regularized configuration which associates to each actor numerical values for its satisfaction and its influence, and these values may be used to determine whether this configuration is able to arouse a kind of emotion. --- The OCC theory of emotions Emotions are a very active field of research in many scientific domains , leading to a fragmented view of this notion. We characterize emotion by using the theory of Ortony et al.'s OCC which relies on the appraisal view of emotions . This model of emotions is well funded and widely recognized as a standard in computer science, notably in Multi-Agents-Based Simulation, and it deals with all social emotions we have to consider. Following OCC, emotions are linked to events, to actions of people or to objects. Emotions are either positive or negative and classified in a tree structure , as follows: first, in case the linked element is an event that affects the achievement of a goal, the outcome of the event is appraised either as desirable or as undesirable, and the actor feels either pleased or displeased, correspondingly; second, in case the linked element is an action that complies or not with a behavioural norm, the actor appraises the action either as praiseworthy or blameworthy, and his reaction will be either approval or disapproval; third, in case the linked element is an object, the actor appraises the object either as appealing or unappealing and so he will either likes or dislikes it. In SocLab only the two first kinds of emotions appear: goal based and norm based since actors do not face objects. Emotions related to prospected events can also not be considered, because the SocLab model of actors accounts just their current situation, not their expectations. A SocLab event corresponds to the fact that a simulation experiment puts the organization in a certain configuration. Then, the feeling of an actor corresponds to its positive or negative appraisal of its contribution to this configuration. Despite the highly fragmented and confuse ideas about emotions regarding, for instance, emotion regulation and its consequences, proposed by the diverse theories in the literature , OCC has become a standard in computer science, artificial intelligence and simulation. However, this does not mean either that OCC is necessarily better than other theories of emotions existing in the literature, or that it has successfully solved the difficulties to cope with emotions, but rather that it offers attributes appropriate for many applications. Notably, this theory is very coherent internally and presents a very good structure of emotions, it covers a large range of emotions and it is well suited to formalize and implement in computer. --- SocLab decision-making algorithm and the quantification of emotions In the original SocLab actors' decision-making algorithm, actors seek to maximize their satisfaction. In the new algorithm being tested in this paper, each actor is equipped with a moral sensibility parameter and the maximizing of its own satisfaction is replaced by maximizing its aim that also considers its contribution to the well-being of others. The aim of an actor is defined as a linear combination of its satisfaction and its influence , weighted by its moral sensibility parameter, as follows: Aim a; s ð Þ ¼ 1Àabs ms a ð Þ ð Þ ð Þ n Satisfaction a; s ð Þ þ ms a ð Þ n Influence a; s ð Þ; where abs is the operator absolute value; Satisfaction is what the actor a receives from others at the configuration s, ); Influence is what the actor a gives to others at the configuration s ); and ms is the moral sensibility of the actor a defined in the interval [-1, 1]. The ms parameter of each actor quantifies the relative importance of its instrumental and moral goals. The higher the value of this parameter, the more the actor considers its contribution to the satisfaction of all others and thus the well working of the organization. Usually, it takes values in [0, 1], as negative values mean that the lower the actor's collaboration the higher will be the actor's achievement of its aim, what rarely occurs. Moral sensibility corresponds to the disposition to give importance to moral issues, including the feeling of moral emotions such as shame or pride: the larger the moral sensibility of an actor, the higher the actor's feeling of both positive and negative emotions. --- Quantifying emotions in SocLab Table I shows the emotions a SocLab actor is likely to feel in a configuration of the organization. The occurrence and intensity of an emotion at a configuration are given in pairs, defined as a potential and two thresholds. If the potential is above the high threshold then the positive emotion occurs, and if it is below the low threshold then the negative emotion occurs. In case the potential is between the thresholds then no emotion appears. The potential of an emotion is defined in proportion as a ratio between what actually happens and what could happen . Indeed, a social actor "appraises" the situation in the context of the possibilities available for it. The real emotional interpretation of the values of each index depends on the very nature of the organization under consideration and of individual traits of each actor. Globally, considering as an example the Joy/Distress emotion, one could consider that Joy appears above 70 per cent and distress under 50 per cent . These indexes are based on essential properties of configurations, i.e., what is given by a to b, and what is received by a from b, where a and b may be a particular actor or the whole organization, as shown in Table I. The higher the value of ms of an actor, the higher its concern for collaboration, and so what it purposes to give to others, that is: first, the higher will be the contribution of a to positive emotions of actors who depend on the relation a controls, for instance their joy ; and second, the higher will also be the intensity of emotions such as Pride of a, which depend on what it gives. We will use short names for the variables: Sat for Satisfaction, Inf for Influence, minSat ) for the minimal satisfaction a can receive from others. Because of the lack of space, we give the complete definition only for the first emotion, and short summaries of some others . 4.1.1 Well-being emotions: joy/distress. The OCC model defines joy as to be pleased about the occurrence of a desirable event. In the SocLab model of an organization, the occurrence of such an event corresponds to reaching a regulated configuration that is satisfying . Joy/Distress of an actor a is given as: Potential: propSat a; s ð Þ ¼ Sat a; s ð Þ À minSat a ð Þ ð Þ= maxSat a ð Þ À minSat a ð Þ ð Þ; which value is in 0; 1 ½ : Thresholds: J oyThresh a ð Þ and DistressThreshðaÞ are the thresholds making actor a liable to these emotions Intensity: J oy a; s Thus, the pride/shame of a when it evaluates what b gives to c will be : ð Þ ¼ max 0; propSat a; s ð Þ À J oyThresh a ð Þ È É Distress a; s ð Þ ¼ max 0; DistressThresh a ð Þ À propSat a; s ð Þ È É : 4. Pride a; b; c; s ð Þ ¼ max 0; propI nf b; c; s ð Þ ð È À PrideThresh b; c ð ÞÞ n cogU nit a; b ð Þ n cogU nit a; c ð Þg; Shame a; b; c; s ð Þ ¼ max 0; ShameThresh b; c ð Þ ð È À propI nf b; c; s ð ÞÞ n cogU nit a; b ð Þ n cogU nit a; c ð Þg; where: propI nf b; c; s ð Þ ¼ I nf b; c; s ð Þ À minI nf b; c ð Þ ð Þ= maxI nf b; c ð Þ À minI nf b; c ð Þ ð Þ; cogU nit a; b ð Þ ¼ ms a ð Þ n Sol a; b ð Þ: provided that cogUnitW 0 and cogUnit W 0, otherwise both pride and shame are null. So, we define pride/shame as the product of a measure of actor a's approval of the action of b ), multiplied by the cognitive units of a with b and with c. This is in accordance with the extension of OCC proposed by Steunebrink et al. . The case for Admiration/Reproach is similar but a sees b as another, i.e. cogUnit is null and so it is not taken into account. Also, a has a positive cognitive unit towards c and it evaluates the influence of actor b on c. 4.1.3 Well-being/attribution compounds emotions: gratification/remorse and gratitude/anger. OCC defines gratification as being pleased about a desirable event or situation that results from oneself action and thus entails the approving of one's own praiseworthy action. As said above, an event is related with the action of the whole SOA, which results from action of individuals. If the actor feels Joy about the situation of the SOA and it considers himself as responsible for it, then it will feel Gratification/ Remorse, as follows: Gratif ication a; s ð Þ ¼ max 0; ð propGSat s ð ÞÀGratif Thresh a ð ÞÞn ms a ð ÞnpropI nf a; s ð Þ È É ; Remorse a; s ð Þ ¼ maxf0; ðRemorseThresh a ð ÞÀpropGSat s ð ÞÞ n ms a ð Þ n proI nf a; s ð Þg; where propGSat is the global proportion of satisfaction the SOA has. Gratitude is a similar case to gratification , but it regards what is given by someone else instead of what is given by oneself rather than proInf. --- A case: the Free Rider model This model includes four actors and four relations, where actor Ai controls relation Ri, for i ¼ 1, …, 4. As shown in the left side of Figure 3, A1 depends on the three relations controlled by the other actors with a stake of three on each. Actors A2, A3 and A4 highly depend on the relation controlled by A1 and every actor depends much more on others than on the relation it controls, in the proportion 1/9. There is no relationship between any pair of actors A2, A3 and A4. The right side of Figure 3 shows the effect functions: for each relation, the functions to the controller actor and the other actor have opposite slopes, that is, the interest of each actor on the relation it controls is contrary to the interest of other actors. --- Behaviour entailed by the moral sensibility parameter The simulation experiments usually converge towards the configurations given in Table II, where each configuration represents a norm of behaviour: either all actors collaborate or only one of the actors defects , rarely two of them defect , not often A1 defects , and never three or all of them defect. When ms ¼ 0, the reference case, A1 collaborates in any case and, in most cases, either A2, A3 or A4 defects while benefiting from the cooperation of the two others. The graphs in Figure 4 show the frequency of configurations for the following exploration of parameters: structure of the model, which takes the distribution of stakes 1/9 and 2/8; and moral sensibility of the actors varying in [0, 0.1, 0.2, …, 1.0]. Each experiment consisted in 200 runs. We can observe a noteworthy tendency: too much collaboration from one or several actors is not good for the whole organization, as other actors take advantage from this. Let us explain using the graphs: • case 1: until A3.ms ¼ 0.6, there is no significant change. Then, the higher A3.ms , the higher the number of C1 until A3.ms reaches the value 0.8; when A3.ms is larger than 0.8, the higher the value of A3.ms, the lower the number of C1 since the number of defections of A2 and A4 increases considerably. • case 2: the higher the ms of actors A2 and A3, the higher the number of C1 up to ms ¼ 0.8 because A2 and A3 collaborate more and more while A4 keeps the same behaviour. When ms ¼ 0.9, the number of C1 decreases because A4 collaborates less; 127 experiments converged to the configurations C1 or C7, and four to the configuration C8. For ms ¼ 1 we had difficulties to characterize the simulation output, as the regulated configurations feature intermediate values -for instance [8.5, 3.75, 3, 10] -which are not in the set C1-C8 . Because of such a difficulty, this set of experiments will not be taken into account in Section 4.2. 1 1 1 1 1 1 C1 C1 C1 C1 C1 C1 C2+C4 C2+C4 C2+C3 C2+C3 C2+C3+C4 C2+C3+C4 C3 C3 C4 C4 C8 C8 C5+C7 C5+C7 C5+C6 C5+C6 C5+C6+C7 C5+C6+C7 C6 C6C7 • case 3: the higher the disposition to collaborate of actors A2-A4, the higher the number of C1, up to the point where it reaches its maximal value ; when these actors collaborate unconditionally , A1 does not need to collaborate anymore and C8 appears. These results indicate that the best level of collaboration is between 0.7 and 0.9 rather than 1.0 . This is consistent with the well-known Prisoner Dilemma experiences, where the tit-for-tat strategy is better than all other strategies and especially than unconditional collaboration . --- Joy/distress of actors and state of the relations This subsection studies the intensity of Joy/Distress, which is selected because it shows the overall state of each actor. We will consider three cases of variation of the moral sensibility parameter: ms of A3 in [0,1]; ms of A2, A3 and A4 in [0,1], and finally ms of A1 in [-1,0]. Only the model with the distribution of stakes 1/9 will be considered. 5.2.1 Case 1: moral sensibility of A3 takes the values 0, 0.1, 0.2, …, 1.0. Table III indicates that joy of A1 is maximum when A3.ms is 0.7 or 0.8 because it corresponds to the maximum collaboration of all others; joy of actors A2 and A4 keeps somewhat stable with intensity around 93, while joy of A3 decreases slightly. Joy of A1 decreases when ms of A3 is over 0.8, because A2 and A4 use the high collaboration of A3 to give less. In the lower part of Table III, we see how A3's collaboration increases while the one of A2 and A4 decreases. This result confirms the findings described above that actors A2 and A4 benefit from A3's unconditional collaboration. 5.2.2 Case 3: moral sensibility of A2, A3 and A4 takes the values: 0.1, 0.2, …, 1.0. Table IV shows how A1 benefits from the higher collaboration of A2, A3 and A4 as their ms increases. The joy of A2, …, A4 suffers only slight changes. The highest collaboration of A2, …, A4 is reached when ms ¼ 0.7, and stays at that level for higher values. Interestingly, when actors A2 to A4 do collaborate unconditionally , A1 defects because it no longer needs to cooperate to obtain the others' collaboration. In this case joy of A1 reaches its maximal value , while actors A2, …, A4 are strongly distressed. 5.2.3 Case 4: moral sensibility of A1 takes the values: 0, -0.1, -0.2, …, -1.0.. As A1 always cooperates in the reference case , the question arises until how low moral sensibility it does so. When ms of A1 decreases from zero towards negative values, A1 collaborates less and less, reaching the lower point from ms ¼ -0.5 . As A1 collaborates less, A2, A3 and A4 also decrease their level of collaboration. Surprisingly, when A1's ms decreases from -0.1 to -0.2, the collaboration of A2, …, A4 increases considerably, as if they tried to induce A1 to do the same. However, when collaboration of A1 is below -0.3, there is no incentive for other actors to collaborate and they renounce to do so. From 0.5, only the worst configuration C9 occurs. --- Conclusion and further research This paper has shown the introduction of a moral sensibility parameter in the SocLab actors' decision-making process. This allows the definition of social emotions together with quantitative measures of their potential arousal by actors within organizational settings. The level of its moral sensibility parameter affects the collaboration of an actor, what it gives to others, and consequently the intensity of positive emotions felt by actors who depend on it, including itself. The introduction of the moral sensibility parameter allows actors to orient their selection of a behaviour not only towards their instrumental satisfaction, but also to the search for positive emotions and the prevention of negative ones. It will hopefully permit to overcome some limitations of SocLab, to represent more suitably social organizations and get better results in further research and applications. Some simulation results about actors' collaboration and emotions in the Free Rider model were presented. A noteworthy tendency is that actors' unconditional collaboration, which occurs when their moral sensibility reaches its highest value, is not so good since it exempts other actors from collaboration , while values of moral sensibility somewhat below the highest value still induces collaboration from others. This finding shows how specific simulation experiences that include modelling of emotions might bring in valuable conclusions for public policy. To be able to quantitatively measure emotions in organizational setting would help us in diagnosing the actual state of actors' emotions, defining a desirable/ideal state of emotions of actors in the organizational setting, and inspecting and tracking changes of emotions over time, in order to compare a desirable state with the actual state. All this, in turn, allows managers and policy makers to give appropriate feedback to organizational management via decision making, in order to direct emotions in the organization towards the desirable state, supporting the management of emotions, and helping in detecting the effects of implementing certain forms of emotion regulation. Of course, these applications require a previous validation and theoretical support in relation to emotion regulation and other issues associates with management of emotions, taking into account existing research such as that of Leventhal and Gross . Considering emotions in social simulations allows us to introduce emotions as a factor in simulation scenarios analysis. This, in turn, permits to use the SocLab virtual laboratory to learn about the impact of emotions on organizational performance, and to take into account emotions in a large variety of organizational management. Consequences of all this have a strong potential to impact the whole society, as a result of the improvement of organizational performance and satisfaction of the organization workers. It includes benefits to public policy, since organizational efficiency and effectiveness would be increased -emotion management will accompany and become an ally, to organizational and institutional improvement. Further research will consider the inclusion of a parameter to represent actor's Group Identification , which might be more suitable than the moral sensibility parameter to model actors' organizational commitment and motivation. Group identification is understood as an actor's self-concept derived from its awareness of its membership in a group, along with the value and emotional significance of that membership. This notion is also important to determine emotions to actor's cognitive unit with others.

Purpose -The purpose of this paper is to present how to model moral sensitivity and emotions in organizational setting by using the SocLab formal framework. SocLab is a platform for the modelling, simulation and analysis of cooperation relationships within social organizations -and more generally Systems of Organized Action. Design/methodology/approach -Simulation results, including an interesting tendency for a Free Rider model, will be given. Considering that actors' decision-making processes are not just driven by instrumental interest, the SocLab learning simulation algorithm has been extended to represent moral sensitivity, making actors trying to prevent bad emotions and feel good ones. Findings -Some simulation results about actors' collaboration and emotions in a Free Rider model were presented. A noteworthy tendency is that actors' unconditional collaboration, which occurs when their moral sensitivity reaches its highest value, is not so good since it exempts other actors from collaboration (they take advantage from the unconditional collaboration), while values of moral sensitivity somewhat below the highest value (between 0.7 and 0.9) still induces collaboration from others. Originality/value -The research and results presented in this paper have not been presented in other papers or workshops. The presented quantitative definition of emotions (determining indexes of emotions) is different to previous approaches -for instance, to Ortony, Clore and Collins (OCC) qualitative descriptions and to logical descriptions. Similarly, simulation of morality in organizations is a new research field, which has received scarce attention up to now.

Interculturality refers to the interactive process that is produced between different cultures based on ethnicity, nationality, gender, sexual orientation, or age. Interculturality is not a conciliatory theoretical concept, because it places in contact that which is culturally different. Or, in the words of Malgesini and Gimenez , interculturality is an 'evolving term, a concept of which we cannot be sure will be its acceptations and principal and distinctive content in the near future.' However, interculturality has been studied from various perspectives , and its use as a noun or an adjective is becoming more frequent in multiple public discourses, as in academic texts from various disciplines including mathematics , philosophy , and politics , just to name a few. Nevertheless, the spread of its use has not supposed its conciliation. As Demorgon reminds us, 'The very notion of the word intercultural poses several problems. It's very easily used as an adjective. Even though it has been made into a noun using the same term or preferably the word interculturality.' But there is more to it than the term used, because the meaning given to the concept of interculturality is not always the same. From a theoretical point of view, the concept of differentiation, the encounter between different groups, is relevant to interculturality: 'Intercultural communication occurs when large and important cultural differences create dissimilar interpretations and expectations about how to communicate competently' . From the perspective of psychology, Barrett affirms: Interculturality, defined in this way, enables people to act as mediators among people of different cultures, and to explain and interpret different cultural perspectives. It also enables people to function effectively and to achieve interactional and conversational goals in situations where cultural otherness and difference are involved. Interculturality is a concept that has been linked to important social transformations, to the point where it is considered as existing not only in cultural origins, but also in the processes of globalisation . In fact, some authors discuss the interculturalisation of the world and they suggest that interculturality lies within a Third Space , in interstices , in hybridisations , creolisation , or in intermixing . In a world characterised by interculturality, it is interesting to study the phenomenon in a country that considers itself a mix of cultures, ethnicities, and nationalities: Spain. Garcia Canclini points out that since the mid-twentieth century Latin American societies have been marked by transnational electronic communications, the global marketplace of cultural property, and migration. We could say the same thing about Spain, a country that has undergone an important transformation with respect to cultural hybridisation in recent decades.The country that was once a nation of emigrants is already considered multi-ethnic, and has become a nation of immigration, officially recognised as such in 2000-2001. In fact, in 1981 Spain had 200,000 immigrants, compared to the millions of foreign born residents today, making it the greatest recipient of immigrants in the European Union and the second greatest in the world, after the United States, relative to the absolute number of immigrants received . In 2014 the immigrant population grew to 4.5 million people, according to data from the Spanish Statistical Office in 2014, which represents 9.7% of the total population. The predominant nationalities are Romanian and Moroccan, who represent 14.9% and 13.6% of the immigrant population , followed by the UK , Ecuador and Colombia . The situation of the immigrant population in general, is rather precarious, as foreigners have an unemployment rate of 32%, higher than that of the entire EU, far from the average which is situated in 16.8% . On the other hand, there are various Spanish agencies that keep track of immigration, like the regional observatories in Tenerife, the Basque country, Andalusia and Navarra, as well as a national observatory, the Permanent Migration Observatory . Even though these kinds of studies are necessary, as they provide information on a reality that does not always have a voice in the public sphere, institutional studies examining the interactions between immigrant and autochthonous populations are few and far between: as reflected in the latest report published by the OPI , the analysis of intercultural relationships between immigrant populations lies outside the realm of their activities. Additionally, from the perspective of social analysis, this is not an area that has a great deal of consolidated methodology. There are no common indicators within the EU that help to consolidate this field of study . If we focus on the media, similarly we find an absence of studies on the part of Spanish Public Radio and Television of content dealing with interculturality. There is also not much in the way of academic work analysing intercultural interaction in the media. The few academic approaches on the construction of intercultural communication belong to the field of cinema studies and especially television . The scarce research on the construction of interculturality contrasts with the relevance that the analysis of the construction of the immigrant's image has had in Spain, probably one of the intercultural topics with the longest trajectory in the country . In this context, the goal of our research is to study the media discourse surrounding interculturality in Spain, offering a critical description of the devices utilised to represent and construct interculturality in Spanish media. This objective is tied to the fact that interculturality is inextricably linked to the phenomenon of communication. As Halualami and Nakayama observe: Interculturality as a metaphor and movement of power represents a form of articulation and communication that sutures into place as a homology the seemingly natural linkages between a place, group, and subjectivity . . . This notion could be productively deployed to examine the different relationships of power within and across contexts. From this point of view, interculturality would be, in fact, a form of communication which is also a manifestation of power relations. That is why it is so pertinent to the perspective of Critical Discourse Analysis-from now on CDA-which we adopt in this study. As Van Dijk points out: One of the crucial tasks of Critical Discourse Analysis is to account for the relationships between discourse and social power. More specifically, such an analysis should describe and explain how power abuse is enacted, reproduced or legitimised by the text and talk of dominant groups or institutions . From there derives the importance that the constructed representations of interculturality take on in different discourses. As Dervin has noted, 'what is interesting for researchers working on interculturality is to look at how representations that are presented to interlocutors are expressed and constructed.' Although there is no doubt about the importance of how interculturality is constructed, or the role that media discourse can play in this construction, it has not always been a topic of study. It must be remembered that for some traditions, intercultural communication principally refers to interpersonal communication. We are reminded that the 1994 edition of Samovar and Porter's wellknown reader had only one reference, and a very tangential one at that, to mass communication. Similarly, intercultural interaction has been analysed in interpersonal and group contexts, more from psychological, sociological or educational perspectives than from communicative perspectives . Intercultural communication is related to the interaction between different cultures. It is a very broad question, for which our objective is exclusively to analyse how the media represents the intercultural interaction established between, for example, the immigrant and the autochthonous populations. Even though the concepts of interculturality and identity are usually presented as though they were interrelated , the production of studies on the representation of identities in the media , as well as the bibliography on diversity-for example, the MEDIVA data base -or on identities-see the well-known work of Castells -contrast with the fact that research on the construction of interculturality in the media supposes a knowledge gap. On this point it is well worth it to distinguish clearly between the studies on the 'other,' or on other groups, or on other minorities, and the research on interculturality. Among the few studies that have specifically analysed how the media construct and/or represent the interaction between different cultures, we can cite Roy , whose study analysed the press, or Dervin and Gao , Kuppens and Mast and Martínez Guillem , whose studies focused on television. In summary, interculturality mediated by television has not received a lot of attention. This is why we consider that our study represents a novel approach, as it attempts to fill a void by critically analysing the representation of interculturality. On the other hand, given the importance of television as a socialising agent, as well as its influence on the construction of the culture, we consider that the study of televised communication could shed light on the basic parameters of the media narrative on interculturality. Therefore our objective is to examine the representation and the construction of interculturality on television news broadcasts. Based on the theoretical framework and the research goal presented earlier, we propose the following research question: RQ1. How is interculturality represented and constructed in Spanish TV news? --- Method In order to operationalise the way interculturality is represented on Spanish television, we determined the possible kinds of topics on intercultural communication. As a result, we formulated three macro-topics, namely: 1) Possible interculturality. This is based on messages that construct a friendly, possible, desirable, necessary interculturality. There is no polarised and/or subordinated Us versus Them , but instead collaboration and coordination or, in the worst-case scenario, at least peaceful interaction. 2) Conflictive interculturality. In this discourse, interculturality is not feasible, and intercultural interaction is an impossible encounter between civilisations . Interculturality is a polarised interaction between a dominant Us and a minority Them defined by the status quo. 3) Unresolved interculturality.This third macro-topic encompasses those news stories that do not fit into the other two propositions on interculturality. It addresses interculturality in a neutral, aseptic way, and the audience does not know if the intercultural encounter is possible. The former general categories are applied in an initial screening of all the videos, in order to obtain the main percentages. In addition to this quantitative analysis, we fundamentally use the methodology of CDA, 'a type of discourse analytical research that primarily studies the way social power abuse, dominance and inequality are enacted, reproduced and resisted by text and talk in the social and political context' . In the case of the media representation of interculturality, this methodological approach can provide us with the tools to verify if the media legitimates asymmetrical situations of power in the context of the relationship between cultures. The tools provided by CDA will help us get a glimpse of how intercultural interaction is represented, such as how the discourse on interculturality is constructed in the media and more specifically, what is the media representation of the in-group and the out-group , of Us and Them, which will be relevant to obtaining a description of the interaction between cultural groups. To achieve this we use the following analytical concepts and tools, which relate to processes and strategies of discourse: Topics. This represents the themes that provide the discourses with global coherence, and are accounted for by the semantic macro-structures which, at the same time, derive from the propositions expressed in the text. This is on a macro level, the most general of those which we put forth in our methodology. 'Thus, a summary or headline typically expresses some or all of the macro-propositions that form such a macrostructure' . The analysis of the semantic macrostructures supposes the study 'of global meanings, topics or themes. These are what discourses are about. . . they embody the most important information of a discourse. . . and perhaps most importantly, they represent the meaning or information most readers will memorize best of a discourse' . Lexicalisation. This consists of the selection of word meaning . On this lexical micro-level, we carry out the analysis of sentences, nouns, adjectives, etc., determining how a discourse, whose theme has been defined on a semantic structural macro-level, is constructed, keeping in mind the analysis of the nuances of the meaning . Propositional framing. This is based on the assignment of certain roles to certain actors . In this context, an interesting aspect of propositional structures is the semantic role of propositional arguments such as Agent, Patient, Object, etc. If a social group is shown as an agent responsible for negative actions, this propositional framing is added to the negative portrait of said group. This same group can also be represented in a non-agentive, non-responsible role by being the agents of positive actions, and vice versa when We are represented as responsible agents of positive actions, and when our negative actions are deemphasised, by assigning ourselves a more passive and less responsible role . In conclusion, propositional framing may establish a dichotomous Us-Them relationship . Conceptual polarisation. Polarisation is the tendency to make a positive presentation of Us and a negative presentation of Them, emphasising good things about Us and bad things about Them, while the importance of the bad things about Us is diminished, as well as the good things about Them . Focus. This is related to the idea of background and foreground information, propositions, or parts of propositions . Focus can favour one point of view within a discourse, while obscuring another. As Van Dijk points out : 'Thus, in a crime story we may foreground or background the information about the ethnic group membership of suspects. . .'. The methodology used in this paper is based on a selection of specific case studies to which we apply the before-mentioned tools of analysis. However, this qualitative approach is framed within a larger research project which has quantitative elements. The cases come from a consistent sample of televised news stories which address the interaction between different cultures. The sample is drawn from a selection of newscasts from 6 television stations in Spain. The set of newscasts collected for the study comprises all those broadcast in the evening, at 'prime time,' on Monday, Thursday, and Sunday, between May 15th and July 15th, 2012. These two months were chosen because there was no special event occurring at the time which might have conditioned the sample. We sought a period in which news coverage would be about normal, day-to-day events, not exceptional ones. The Olympic Games in London, for example, which began on July 27, 2012 would have provided a lot more coverage of interculturality but these news stories would have the bias of the media event that was the Olympic Games. The six stations selected include Antena 3, Canal Sur, Telecinco, Telemadrid, La1, and TV3. Represented were broadcasts from both national and regional television stations , as well as public and privately-owned stations . All these stations offered generalist programming in Spanish, except for TV3, whose main language is Catalan. The three national stations lead in audience ranking, with market shares of 13.9% , 12.5% , and 12.2% . Insofar as the sampling and coding of news stories for the analysis is concerned, two coders analysed a total of 4184 stories, excluding sports and weather forecasts. It must be pointed out that the news stories classified as "interculturality" can be thematically diverse. Regardless of the substance of the story, coded variables included whether the story had a national or international nature, set in a separate category. This was determined on the basis of the geographical domain to which the content of the news was related. "National" news were stories that referred to Spain exclusively, whereas "international" news were events that combined references to other countries . National stories referring to foreign matters were coded as international. From the initial number of 4184 items, 157 news clips about 'Interculturality' were selected as units of analysis. More specifically, the 'Interculturality' category considered all stories showing interaction, dialogue, communication conflicts, or misunderstandings between people with different nationalities or ethnic backgrounds. --- Results On the most general level , the analysis of the news clips reveals a discourse that presents interculturality as a conflictual encounter. On this point, the data obtained from a previous quantitative analysis of the same sample are revealing. Data indicate that conflictive interculturality almost doubles possible interculturality , while the percentage of unresolved interculturality is the lowest -in absolute terms, 90 news clips showed conflictive interculturality, while 48 news clips showed possible interculturality, and 19 represented unresolved interculturality. Judging from this first macro level, television as a medium seems largely uninterested in the process of intercultural communication. Yet what is more, and when it does turn to this topic, it is to present fundamentally conflictive interculturality marked by misapprehension. More specifically, the data indicate that-except in the case of Canal Sur, Andalusia's public television stationinterculturality is presented primordially as a source of conflict, reaching percentages of 17.2% for conflictive interculturality on national Spanish public television, 14% on Telecinco, and 12.7% on Madrid's public television. While unresolved interculturalty does not reach even 4% of the representations on any of the channels, possible interculturality reaches 10.1% on Spanish public television, but is very rare on other public and private stations-on private channel Antena 3, for example, it reaches barely 2.5%. In short, globally speaking, the general panorama is that television tends to represent interculturality as conflict in almost 60% of the cases. For instance, television discourse communicates that the Gibraltar police 'harass' Spanish fishermen , we critically analyse, in greater depth, two events that received media coverage on various channels. On the one hand, the arrest of an immigrant who was allegedly selling pirate copies of CDs in Madrid, and on the other the presence of Latin gangs, organised groups framed within criminality and street disturbances. In the first case, Telecinco reports on the controversy generated when a plain clothes police officer fired warning shots while making an arrest, in conjunction with another officer, in a centric area of Madrid, Lavapies. The two officers were arresting a sub-Saharan African who was allegedly selling pirated copies of CDs. BROADCAST JOURNALIST: The police are handcuffing the Senegalese suspect. . . when one of his colleagues, armed with a shoe, tries to stop them. The officer feels intimidated and takes out his baton. Pay attention now, the second police officer, who is holding down the detainee, is aiming his authorised firearm. The officer with the baton continues to struggle with the immigrant, while some residents approach, throwing objects, from the balconies too. . . he fires the first warning shot into the air. . . a group of neighbours follow from a distance and the officer fires the second warning shot. . . the local government say they do not consider the use of the firearm excessive, and among the objects thrown, some stones were found. . . It is not the first time the police have been forced to retreat from the neighbourhood. The particular topic or semantic macro-proposition that gives this news clip unity is the idea that the police must defend themselves from the harassment of the immigrants, a theme that can be inferred from diverse, isolated propositions. Even though the news also shows two accounts of people who were presumably sub-Saharan Africans , the general semantic structure of this case of conflictive interculturality revolves around the presentation of the out-group as a threat against which it is necessary to use force. It is interesting, as well, that none of the statements favourable to the immigrants come from the Spanish, which could connote the idea that the out-group and the in-group are cultural worlds apart. This macro-proposition is reinforced by the foregrounding of the information through the conclusion of the text , which adds to the quote above: 'Last summer, they had stones thrown at them,' the broadcaster says referring to the police, 'they were harassed, and resigning themselves, they put up with it.' Also when examining the focus of the news story, it is notable that the fact that the detainee was Senegalese was placed in the foreground, clearly accentuating the involvement of an immigrant, a non-Spaniard, thus drawing a line between Us and Them. Concerning the lexicalisation, the linguistic choices of discourse converge on the above-mentioned topic of defence from aggression. To start, the out-group is represented as a threat through expressions such as 'a colleague, armed' or 'some residents approach, throwing objects.' In counterposition, and despite the fact that it is the police who use a firearm, Telecinco makes lexical choices that result in the idea that it is law enforcement who feel threatened . Consequently, the out-group is presented as a collective of dangerous individuals who put the forces of law and order in check . In any case, the most important term to represent the actions in the news is 'harassment,' which is mentioned by the newsreader as well as by the mayor of Madrid, Ana Botella, in fragments of statements inserted into the news, as well as by the broadcast journalist, Pedro Piqueras. PIQUERAS: one of the police officers, there you have him, facing harassment from several people, decides to fire shots into the air BOTELLA: I believe they felt attacked PIQUERAS: The municipal police officer, when he saw himself being harassed, well, he fired a shot into the air. The use of the term 'arm' in the news is also quite interesting. On the one hand, it is specified that the pistol used by the police officer was 'authorised,' in other words, the weapon was used within the law. By using the qualifier 'authorised,' there is an attempt to communicate that the use of the pistol was within the established canons of normality. But the most attention grabbing is the specification that the detained immigrant's friend is 'armed with a shoe.' By choosing the term 'armed,' the journalistic discourse equates the use of a shoe to the use of a pistol, when it is obvious that the degree of danger of a pistol is much greater than that of a shoe. In addition, in no case is the cultural significance of threatening with a shoe explained. In Islamic cultures, it is the equivalent of an insult, but in Spanish you cannot affirm that one is 'armed with insults.' To conclude, this news report increments, discursively, the level of dangerousness attributed to the collective in Lavapies, an area of Madrid that is characterised by the large number of immigrants that live there-it should be taken into account, from a contextual point of view, that Africa is traditionally one of the most important zones of origin of immigrants that come to Spain . The news includes a statement from a citizen that reinforces the macro-proposition of the story: CITIZEN: And if they hadn't taken out their guns, the police would have been killed. The media coverage of this same intercultural incident by Antena 3 also reinforces the construction of a discourse based on the opposition between the 'officers' and the 'illegal CD pedlars'-known as manteros in Spanish, because of the blanket they spread their wares on. Antena 3 presents a decontextualised event that shows the officers surrounded by the illegal CD sellers, and it employs a lexicalisation similar to the one used by Telecinco, to make very clear that the out-group are immigrants . The macrostructure of law enforcement officers defending themselves from the aggression of the immigrants can also be gleaned from some of the phrases used in the news report , as well as the propositional framing set out in the expression 'The officers, receiving more and more harassment, open fire again,' which presents the police as subjects who suffer the negative actions of others. The second case study selected responds contextually to the increase in immigration from Latin American countries. Compared to 18% of immigration coming from Latin America according to statistics from 1998 , the most recent data show that today a considerable amount of immigration to Spain comes from Latin America . In this context, television shows a special interest in the worrying presence of the so-called Latin gangs, frequently associated with violence. The news report on Antena 3 of July 18, 2012 involves the death of a seventeen-year-old minor at the entrance of a discotheque, presumably stabbed by members of a Latin gang. The theme or macro-proposition is rivalry between Latin gangs, a circumstance that threatens the public well-being in a neighbourhood in Cornellá de Llobregat . It is not treated as an isolated incident, but rather as an authentic social problem which has developed over time. We find ourselves with a problem that has been woven into the social fabric and that will be ongoing. BROADCAST JOURNALIST: The incident occurred in an area of town known for its pubs and nightclubs where fights between rival Latin gangs have occurred before and ended in tragedy . . . the residents of the area have complained about the noise and the constant brawls which take place almost every weekend. The subjects of the news are, on the one hand, young Latin American immigrants , who are supposed members of organised gangs, and on the other hand, the neighbourhood residents who endure the violence in their streets. Thus a clear polarisation between the actors is implied: it contrasts an Us, native-born Spanish residents of an affected area versus a Them, Latin Americans associated with violent groups. In this sense, the out-group has the role of instigator of social violence, while the in-group endures that violence . The two eyewitness accounts of young Latin Americans are framed in anonymity, which emphasises the otherness with which the members of these gangs are constructed. It could be said that the fact that the witnesses of the crime hide their identity emphasises the focus based on the foreground, where the dominant perspective is that of an Us, who must endure the conflict, because of a Them who lack a human face. That is to say anonymity, and as we will see, the merely descriptive character of the eyewitness accounts of the Latin Americans privileges the dominant viewpoint of the Us as victims. As well, the semantic charge of the nouns utilised-'fights, ' 'tragedies,' 'stabbings,' 'brawls,' 'revenge,' etc.-supposes a lexicalisation that sustains the conflict. The violence that is at the centre of the news piece is detailed by means of the inclusion of testimony by a Latin American witness: 'He fell to the ground. We realised that he was asking for help and we saw the police running towards the boy. He was bleeding heavily' . Even though the news clip includes the testimony of two youngsters that hide their faces, these declarations exacerbate the polarisation of Us against Them even more, given that despite the cruelty of the event, the witnesses do not denounce or condemn what happened, nor do they call for an end to the violence. Indeed, the testimony of the second witness simply reiterates what the journalist says, the perpetuation of violence through the course of time: 'There is going to be a vendetta for sure because they are already looking for the ones who did this' . The preoccupation with the existence of Latin gangs and the conflicts that are generated in the neighbourhoods where they are present, is an issue that also appears on the news on the regional public television stations Telemadrid and TV3 . The latter reports on the increase in membership of Latin gangs among young people, which rose from 400 in 2005 to 3500 in 2012 . This news clip reports on the issue from a more complex perspective that the increase in the number of gangs has not corresponded to an increase in the level of violence. They also mention that more preventive measures need to be taken on a policy level, which implies a certain 'decriminalisation' of the Latin gangs or at least the need for cooperation to solve the existing social problem. REPORTER : Latin gang membership has increased but social unrest has not . . . social services that work directly with the issue insist that belonging to a gang is not the same thing as being a delinquent, but they warn that there need to be more preventive measures, due to the fact that these have been decreased in recent years. The macro-proposition is the potential for conflict among the Latin gangs which requires special attention on the part of the local authorities to prevent possible outbreaks of violence. The social problem is still present , and for this reason it is necessary to take measures of social mediation in order to 'pacify' these groups. The notion of conflict continues to be a modifier that defines their identity. The subjects of the news are the authorities and experts in cultural mediation from the in-group compared to the out-group of the gangs who speak through a member of the Association of Latin Kings and Queens . There is polarisation in which the ingroup is presented in a positive light as the necessary mediator to 'pacify' the possible violence of the out-group. In other words, the problem of potential social unrest needs to be addressed by Spanish government authorities and/or experts in mediation. Thus, the propositional framing of the in-group goes from that of being the victims to being that of the agents who help not to solve the problem but to 'pacify' or placate the situation. The role of the out-group is still that of the instigator of conflict, but now it has a human face and sometimes it collaborates with the in-group, as in the case of the cultural mediation project 'unidos por el flow' . BROADCAST JOURNALIST: [images from the project United by the Flow] The Latin Kings and the Ñetas, two historically rival groups, are collaborating on a project of musical mediation. This was in 2006, when the phenomenon of Latin gangs first emerged in Catalonia. In that case prevention helped to bring about peace between the two groups. Those who participated remember the event as a great success . . . . Additionally, the need for social policies that 'prevent' and 'bring peace' to the 'episodes of violence' brought about by Latin gangs is called for. The lexicalisation of the Latin gangs on the part of the in-group includes the following expressions: 'delinquents,' 'rival groups,' 'episodes of violence,' 'endemic problem,' 'criminal organisations.' The presence of several actors from the in-group making references to the out-group consolidates a dominant focus of Us against Them. In short, interculturality is still an interaction laden with conflict that needs social mediation, but that does not deny the possibility for approximation between the in-group and the outgroup. An approximation, as we said before, that is framed within the domain of the institutions. --- Discussion In this article we have tried to respond to the question of how interculturality is constructed and represented on Spanish televised news. Our analysis reveals how intercultural conflict constructed by TV news is based on the discursive processes of lexicalisation, conceptual polarisation, focalisation, and propositional framing. If the concept of differentness is crucial to interculturality, on Spanish television the encounter between different groups is usually problematic, creating an abyss between cultures. Dervin's and Gao's study on the Chinese television program The Foreign Wife in Our Village indicated that intercultural couple-hood was built on the narrative structure of a typical fairy tale ; our analysis however, shows that there is also a televised representation of intercultural interaction as social conflict . In this context, our data coincide with the idea that migration has become a theme of public interest in Spain, and that it is focused more and more from an emotional point of view . On public and private stations alike, interculturality is shown on Spanish television as a polarised interaction between a dominant in-group and a minority outgroup, and it is defined by the status quo. Those with whom it is impossible to come to an understanding belong to the other group, and They are the ones who encumber cultural interaction, as opposed to an Us who must endure the consequences of the conflict or be the ones who show up on the scene as the mediators capable of pacifying the situation. Relative to the assignation of roles to subjects, minorities are represented as a threat to the majority, or they are constructed through the actions of the majority. Our research sheds light on the phenomena of stereotyping and misrepresentation in the media , as immigrants are represented in a stereotypical manner through tools such as lexicalisation and semantic macropropositions. Our analysis, therefore, is in line with the idea that one of the features that characterises Western news discourse is 'the ethnocentric, stereotypical portrayal of Third World nations and peoples' . Specifically, the cases analysed offer examples of 'hetero-stereotypes, which are related to an out-group ' . The news also provides examples of 'othering,' a kind of social representation which is related to stereotypes and is based on the objectification of the other person or group, leading people to differentiate between the in-group and the outgroup with the aim of reinforcing and protecting the Self , as occurs in the news about citizens in Madrid enjoying the Manzanares River while Romanian individuals poach there. Spanish television portrays a conflictual interculturality that is not limited to disagreement. However, peacemaking depends on being channelled by the in-group. Consequently, the out-group is not usually presented within a positive propositional framing, but rather as a source of conflict and difficulty that the Spanish must endure or help fix. This may be in line with the notion that immigrants are sometimes victimised by the media, thus reinforcing their status as Others . Ironically, interculturality is presented as something that is possible when we find ourselves facing a positive or neutral representation of groups that are richer or more powerful than the Spanish in-group. Thus, it cannot be said that television news systematically constructs an image of foreigners or immigrants as a threat; what it does is assign them positive roles or negative roles depending on how wealthy they are. The representation of well-to-do Chinese immigrants would be an example of this. Therefore it would be appropriate to consider the treatment of interculturality on television looking at variables such as power relations or social-economic factors, more than intrinsically cultural characteristics. It should be taken into account that the degree of national power is one of the main factors that determine news selection, as it is indicated by Hanusch's study about intercultural interaction in newspapers. As a result, the frame that studies intercultural conflict from a macro point of view, including the impact of the media and political and economic factors , is relevant to the discussion of our findings, because Spanish television tends to represent situations of conflict when cultures that are less influential or wealthy than Spanish society are involved. Given that context is fundamental to the methodology of CDA , the idea of a conflict depending on the level of wealth should perhaps be understood in the context of the financial crisis that began in 2008, the effects of which have been particularly devastating in Spain, as far as the impoverishment of the population is concerned. It is also interesting to frame our findings with regard to an event that changed Spanish politics: the "15-M" movement that started with a demonstration in May 15, 2011 in several cities. Preceded by civilian platforms targeting the situation that started with the 2008 crisis, 15-M protesters set up camps in the main squares of numerous Spanish cities to protest high unemployment, the lack of a truly representative democracy, cuts to social programs, or corruption. The camps in the main cities lasted until June 2011, with the development of popular assemblies in the squares. Although the movement was heterogeneous, its discourse focused on a criticism of politics, the capitalist economy, or the construction of a system that only benefits "1% of the population" . Since issues related to immigrants or interculturality were non-significant, the question of intercultural communication is far-removed from the Spanish social mobilisations. Apparently, the organisation of left-wing popular assemblies was not enough for a critical visibilisation of intercultural relationships and problems. From a comparative point of view, our study also has implications with regard to the processes and flows of international communication as they are depicted by the Spanish media. If the concept of interculturality may be understood 'as a metaphor and movement of power' , the kind of interculturality represented in Spanish television is permeated by power relationships in two ways: on the one hand, a dominant discourse that marginalises impoverished cultures; on the other hand, a submissive discourse that tries to please influential international actors. Thus, Spain emerges as a middle-of-the-road nation that misrepresents the poor and hails the powerful. This idea of Spanish media draws attention to the context of the positive intercultural function that the media could have in general. As indicated in a quantitative study by Reis , on the influence of English and Portuguese-language mass media on how Brazilian immigrants in Los Angeles adapt, the use of the media correlates positively with cultural adaptation. However, another quantitative study looking at the German-language weekly Costa Blanca Nachrichten indicates that the publication is not hybrid or integrated enough to be an intercultural product, because it is dominated by the German-speaking communities' culture -again, the predominance of a powerful western culture. On the other hand, although a comparative focus lies outside of our objectives, it is interesting to highlight that there are indications supporting the idea that television portrays the poor in a negative light. This is observed in the invisibilisation and demonisation of a part of the poor in a telethon on Irish television , while at the same time the TV media broadcasts 'elements and symbols of supranational culture which are identical and affordable only to the rich and socially superior groups in the country', as Vilanilam points out in his study on television advertising in India. Within the frame of conflict-laden interculturality, the media's idea of a Spanish culture threatened or harassed by hetero-stereotyped elements from another culture could help justify certain types of tough institutional and social responses. Although the media may be used in order to transform conflicts , Spanish television is not acting as a frame of encounter and coexistence between different cultures. To the contrary, it is creating a conflictual, negative portrait of the poor, immigrants, and the marginalised. For segments of the population where the technologically-mediated experience substitutes the non-mediated experience , a discursive representation of this sort could provoke attitudes of social rejection towards immigrants and minorities; especially if said segments of the population do not have access to alternative sources of information or direct contact with other cultures. As a result, intercultural communication between Spaniards and people from other countries may be distorted. According to the latest CIS survey in 2014, Spanish citizens did not perceive immigration as a problem. Only 2.5% of those surveyed cited immigration as a problem, far from what the survey's participants pointed to as the main problems, which were unemployment and corruption . Consequently, the televised discourse could be making a problem out of something which is really not perceived as an issue. Our analysis was performed on the basis of television newscasts. In this regard, it is interesting to contextualise our findings pertaining to the depiction of interculturality in other formats. Dervin and Gao point out 'othering' processes in the above-mentioned Chinese intercultural show , and Martínez Guillem's study indicates that the Spanish public service programme Babel emphasizes the need for intercultural dialogue and the benefits derived from cultural exchange , while at the same time conveying the idea that '. . . the possibilities for intercultural dialogue are intrinsically tied to the perceived potential for immigrants to contribute to a 'productive Spain'' -that is, a treatment of interculturality related to social-economic factors, which is consistent with our results. Additionally, a construction of the Other can also be found in the Flemish intercultural reality television programme Ticket to the Tribes, which builds 'on a post-colonial exoticisation of the Other: non-western peoples are presented as primitive, savage, simple, authentic, close to nature, dirty, and the like, while westerners are represented as the exact opposite' . With regard to propositional framing, our results are in line with the notion-pointed out by Johnson et al. when referring to American news talk show The O'Reilly Factor-that the Other is established as guilty, and the Us as blameless. Thus, it can be concluded that some trends in the depiction of interculturality cross television formats. This article has attempted to fill the existing void in the academic literature on the media narrative on interculturality, but it has its limitations. One of these is related to the nature of the medium studied, given that television constructs an idea of interculturality that is both linguistic and audio-visual. Therefore we consider that it would be interesting to conduct additional studies on images as a discourse-building element. We also consider it would be interesting, as a complement to CDA, to conduct a quantitative study on the specific subjects and actions that receive news coverage. Lastly, a study on how interculturality is constructed on television in other countries could shed additional light on the way the media represents the interaction between different cultures in an international context. --- .html

Garcia-Jimenez has taught and researched in US, Spanish, Swiss and Mexican universities. She has completed more than fifty works (conferences, articles, books, etc.) in culture, communication and media theory.

However, the sources of the COVID-19 differences have been more challenging to analyse compared to establishing the existence of such disparities [5]. Previously it has been suggested that culture can also interplay with virus spread through behavioural and societal variances, including health-seeking behaviour and intergenerational cohabitation [6]. In theory, several factors may heighten the risk of COVID-19 transmission in CaLD communities, including extended family groups living together , higher religiosity, collectivist approaches to childcare and the cultural expectation of family members providing care for each other when sick [7][8][9][10]. Several authors have also pointed towards socio-economic factors, including housing arrangements , income, access to insurance and stable housing and occupation [11,12]. Previous work has also identified that residents located in low-income neighbourhoods are less likely to be able to stay home in response to COVID-19. This can relate to work-related demands [13]. Workers in specific industries, such as meat processing plants, aged care, and hospitality, have been the most impacted by COVID. These jobs tend to be lower-waged and usually comprised of workers from CaLD backgrounds [14]. The Federation of Ethnic Communities' Councils of Australia reported that '40 per cent of skilled migrants still work in lower-skilled jobs' across Australia [15]. This equates to a higher proportion of people from CaLD backgrounds working in publicfacing occupations, including retail, transport or service, occupations where there is little opportunity for physical distancing and higher levels of interaction with people. In April 2020, letters were sent to federal, state and territory health ministers from 16 critical organisations, including the Ethnic Communities Council of Victoria, Settlement Services International, Migration Institute of Australia, and HOST International, which raised several key concerns about the Australian Governments' COVID-19 responses. They spoke about a lack of consideration for CaLD communities, including access to appropriate and reliable in-language COVID-19 information and, most specifically, behaviour change advice and directives. Their call to action to the government was to make sure "that CaLD communities are not left behind in their access to and understanding of COVID-19 and are not made more vulnerable than other parts of the Australian community because they have become an afterthought in the rapid response to-curbing infections. " To support enhancements to Australia's COVID-19 pandemic response, with a particular focus on communication and engagement with CaLD communities, this study aimed to understand the factors impacting pandemic response efforts from the perspective of key CaLD community stakeholders and opinion leaders. --- Methods Semi-structured in-depth telephone interviews were undertaken with key stakeholders and opinion leaders, of approximately 30-40 min in duration, between January-April 2021. The collective term 'Culturally and Linguistically Deeeeee ' refers to "the non-Indigenous cultural and linguistic groups represented in the Australian population who identify as having cultural or linguistic connections with their place of birth, ancestry or ethnic origin, religion, preferred language or language spoken at home" [16]. The Human Research Ethics Advisory Panel at the University of New South Wales reviewed and approved this study . All the methods used in this study were performed per the guidelines outlined by The National Statement on Ethical Conduct in Human Research, published by the Australian Government. --- Sampling Participants included those who have an active role in delivering services via multicultural health and other support services via migrant resource centres, refugee health services, settlement services, community-based organisations, translation services and primary care settings. In addition, we sought to include people in senior leadership positions in multicultural health and diversity-related activities, whether through advocacy, policy/program development or research. This principally encompassed personnel such as those from government agencies, CaLD community peak bodies/Councils, and CEOs of community organisations. This study used a range of national-local-personal approaches to recruiting participants. Firstly, an online search of relevant websites was conducted to identify potential participants matching the eligibility criteria. Each potential participant was then contacted via email with an invitation letter. Secondly, interested participants were asked to recommend any colleagues who may be willing to participate directly. Lastly, emails were sent directly to known contacts of the research team working in the relevant sectors. An effort was made to recruit at least one person from Australia's States and Territories to capture a broad range of views. However, we were unable to recruit any participants from Northern Territory. Participants were included in the study on receipt of informed verbal consent. This study did not collect any identifiable personal information from the participants. --- Data collection and analysis An interview guide was developed based on a scoping review of the literature and the observations from a research team member working within the multicultural sector. The remaining researchers reviewed the tool to ensure that key areas of interest for the study were included. Open-ended questions focused on the following broad topics: perspectives towards the current communication approach being used by the government, factors affecting communication and engagement with CaLD communities, the communication roles and influences of different multicultural services, and suggested options that could be adopted to enhance communication and engagement with CaLD communities around the COVID-19 vaccine program. Additional items and modifications were added iteratively as interviewees raised new relevant issues unforeseen by the study team. All interviews were recorded using a digital recorder and fully transcribed with interviewee consent. Thematic analysis was undertaken using NVIVO 12, informed by a realist approach [17]. The analysis steps included familiarisation , code generation , probing for preliminary descriptive themes, and then reviewing and modifying the identified themes. The final stage involved finding associations between themes in order to generate explanations for them. Two authors read the transcripts, who independently generated initial codes and categories. Any similarities, differences and clustering were noted, and agreement was reached on initial descriptive themes. The descriptive themes were then shared with the remaining research team for further refinement until consensus was achieved. --- Result Fifty-seven people were contacted to participate, of which 46 interviews were undertaken with key stakeholders and informants across Australia. The characteristics of the interviews are described in Additional file 1 using the CORE-Q reporting format [18]. --- The digital divide and how to really connect with people Before COVID-19, outreach activities with the community were undertaken mainly face to face via caseworkers visiting clients, walk-in appointments/consultations, or group meetings . Social participation was encouraged: "language-specific social support groups to citizenship classes, sewing classes, just social classes as well, and lot of information sharing, parenting classes. We had that kiddies' playgroups and mothers' groups" . Following the emergence of localised COVID-19 outbreaks in Australia, participants spoke of the "frantic" need to transfer to virtual or telephone mode to continue the delivery of routine services. This included conducting meetings via teleconferencing platforms to support engagement opportunities and to replace those face-to-face meetings that needed to be suspended. The virtual engagement approaches aimed to ensure that community members received relevant COVID-19 information, including physical distancing measures, lockdown requirements, testing recommendations, and the COVID-19 vaccination program. Not having access to a computer or the internet, having low digital or English literacy levels, and language barriers were all raised as barriers affecting the community. It was not just the community members who lacked the hardware or internet access to switch online but also staff members from some community organisations. In these situations, many were heavily reliant on their mobile phones. To support those without the hardware, donated laptops and Wi-Fi dongles were used to ensure case workers and community members could continue to connect. Video conferencing sessions were given to help those in the community who were unsure about how to use Zoom, FaceTime, Viber, What-sApp or other chat and conference platforms . Whereas in other settings, telephone contact continued with clients and community members: "for a lot of the older community, it's very oneon-one. We implemented the phone checking service where we were identifying the most vulnerable and providing them support and information" . In one situation, a community organisation started up a Saturday night free call teleconference service to connect women "who can't read or write in Somali, but want to know stuff about COVID. " . Participants reported a preference for smartphonebased platforms such as Viber, Facebook Messenger, and WhatsApp compared to computer-based platforms such as Zoom. Some organisations started to connect with communities via WhatsApp. However, they reflected that it took time to set up the connections, and the messages were very static. --- Information voids being filled by international material It was acknowledged that while Australian mainstream media was a good source of disseminating information at large, participants raised concerns that mainstream media may not reach CaLD communities. Participants spoke about "voids or gaps" occurring during the pandemic regarding the availability of COVID-19-related news and government information. These gaps were linked to delays in getting official information translated or materials not being available in all languages. In almost all interviews, participants spoke about the reliance on overseas news programs or the fact that some community members preferred international media that they streamed from their country of origin. Concerns were raised that the information coming from overseas did not reflect the situation in Australia nor the rules/ recommendations around COVID-19 pandemic control measures. This issue may have led to some communities misunderstanding their risk of COVID-19. For example, early in the pandemic, there were few COVID-19 cases in Africa, so some community members originating from Africa thought they might be protected from the virus just through their ethnicity. Confusion amongst community members regarding the COVID-19 vaccines, including about which vaccines are recommended or licensed for use, was also linked to CaLD community members watching news channels from abroad. --- "I had a conversation with my auntie one day; she watches Greek streaming…, and she was telling me something. I said, "No, that's not exactly the case because they're giving us different information here. " She goes, "Yes, but in essence, it's the same. " She was comfortable receiving the information coming from Greece without having any clue what the Premier was saying, for example, every morning when she was coming out on TV. "The other thing was the absolute confusion…It's complicated to understand full stop, but if you consider that most obviously, everyone in all our communities comes from somewhere else, and most of those places in the world have had a very different experience of COVID. I don't think that in New South Wales, we were fast enough to provide the messaging to the community, and so we allowed that void to be filled" Compounding this issue was some COVID-19 resources, as they included "technical jargon", which may have been confusing for people with low literacy or health literacy levels, even if English was their first language. Government materials were not available across all languages, nor were they always available in simplified English that was "accessible" to communities. "There are some communities that are missing the information. If we take the example of the South Sudanese community…. Dinka is one of the tribes among 64 other tribes. It means you provide information to one tribe; there are 63 missing. That's what I mean by saying, yes, there's some information there, but it doesn't capture everybody. . Participants spoke about interpreting the information to "make it real" in some settings. For some communities, data was unavailable in their local language: "we can see the Department of Health information flashed in Arabic and Chinese, but no African languages were available". . In these situations, it was stressed that community language radio and online information sessions delivered in language were critical. Lastly, there were mixed feelings about Australia's multicultural and multilingual broadcaster role in disseminating information. Some participants described it as brilliant; others were more reserved in their comments and felt it failed to capture what was needed. --- "My mother or auntie, there's no connection to SBS as it used to be years ago. Why would they even go in and watch the Greek news if they can watch it directly from Greece? Why would I wait for the last night's news if I can watch them live?" "Stop wasting money on things like ethnic press and TV. Sure, they do a good job and are important to a degree. Still, theree is always going to be a gap that you're not going to be able to plug unless the community takes ownership and gets them to do the communication themselves to the people they are close to". One suggestion that was put forward was to have community leaders talk in the language during the news programs on mainstream media channels or for messages to pop up. However, others felt this was still missing the mark. --- Differentiating established with new and emerging communities' needs There was not a consistent picture when it came to identifying which community groups should have support/ resources directed to. Some participants suggested that newly emerging communities would be most at risk of missing out on messages and support services. One key factor contributing to this was the focus on providing translated COVID-19 information to "high volume" community groups versus "high need" groups. Another issue identified was that established communities have 'infrastructure' in the form of community organisations, community leaders, in-language newspapers, radio stations etc. "I think "it's the newly arrived communities with minimal infrastructure that are the most vulnerable. Particularly in small communities like the Rohingya, who have only had a written language since the '80 s, and hardly anybody can read those". . However, not all participants agreed with this sentiment. Participants also highlighted that Governments did not consider those individuals who come from cultural groups with oral traditions or who are illiterate in their language: "One of the first outbreaks I think in our region was in the meat works, and most of the employees at the meat works work from Karen and Burmese heritage. Many people in those communities don't read or write in their own language either, so thanks to the local community leaders, we set up a testing site, and most people heard of it from word of mouth. That's how, but we do have Karen information written, but we also had some videos made". Having verbal messages was identified as being critical. In some suburbs, organisations resorted to door-knocking to encourage people to go and get tested. The ability to navigate websites was also emphasised as an issue for some community members. Especially at the beginning of the pandemic, it was not easy to locate relevant information on the government's websites. While participants acknowledged improvements, challenges remained for those community members who did not read in English. Even if online information was translated, there was often the requirement to browse the website in English to find the relevant language: "The really common accessibility issues were languages were ordered. You had to browse in English alphabetical order. Look, most people know their language's name in English, but you also need to know the other language". Participants noted that not all the COVID-19 resources available online were translated into every language. --- Speaking COVID-19 Issues around low levels of understanding about COVID-19 and increasing amounts of misinformation triggered some organisations to offer online community forums. These forums were provided for interpreters, case workers, and community leaders and often featured bilingual GPs and government officials to offer updated COVID-19 information and answer any questions. In some settings, these sessions were held weekly or fortnightly. --- "We've had GPs; we even had an orthopaedic surgeon present weekly COVID updates to audiences, getting the accurate advice, wash your hands, keep your distance, do all that, and talk about the specifics in the community. " Other forums were set up to provide updates to local community leaders so they could pass on relevant information to their communities: "We established what we called the Greater Western Sydney Community Leaders Forum. What we did was we invited community leaders from across Western Sydney. We had Zoom meetings, initially weekly ones, and we started bringing in the police, for example, to talk about the fines and what was legal or not, and health practitioners to talk about the virus. Then we brought in some tax agents to talk about work, the job seeker and job keeper sort of stuff. " . Whilst resource kits were available from the government to support outreach efforts, criticisms were raised that the kits were just information. What was lacking during the early part of the pandemic were training sessions to support the adoption of the resource kit. As one participant indicated, there was a need to provide examples of what other organisations or community groups were doing. Lastly, participants also identified that there was a need to offer training forums to case and settlement workers, as well as translators/interpreters, to support their understanding about COVID-19: "We ran workshops called Speaking COVID. We've focused on engaging with the interpreters in workshops…. We did those bi-language group, and we had some content that talked about what does airborne transmission mean and what's a droplet, what does isolation mean, and does quarantine mean, and all of the terms that became really common in that period and explained those in ways that the interpreters could understand so that they could, in turn, interpret them appropriately for the clients. " . --- Ineffectiveness of direct translations of English language resources Understanding and acknowledging the different cultural beliefs about illness and COVID-19 was critical to developing resources. However, in many settings, participants spoke about the fact that COVID-19 education resources were often created in English and then translated. Potentially as an outcome, participants talked about mistrust and misunderstanding amongst community members, linked to the fact that resources were not tailored to their beliefs or practices: One story that someone told me is the true story of an older woman in a smaller community who contracted the virus. In that culture, when someone's sick… you go and visit them". . The problem is that the education resources did not account for these practices. Other participants spoke about the words/phrases that were in translated materials that were nonsensical or gave the wrong message: "when we hear the media or the government saying, 'We've produced the written material, you have to be careful on what you're saying because no one's vetted the accuracy of that material. That's where I'm suggesting that it seems on the surface that the right thing's been done, but when you look at the content, it's highly questionable" . As a solution, it was suggested that education resources be developed from scratch with the targeted communities, which are not only language-specific but also count for the nuances within the community. The videos should include local faces and phrases known in the community". "In other words, you end up with 20 slightly different documents. They're not all the same, but that's okay, as long as the basic information is the same, the way it's presented is slightly different". . Beyond having resources developed in collaboration with the target community, there is still a need to have bicultural workers available to help with supporting community members' understanding of the information. For example, it was recommended that people avoid 'share-plates' . However, it is common practice for many Arabic-speaking and African communities to sit and eat communally, with everyone taking food from the main platter. Therefore, bicultural workers were critical in helping break down the messages and reassuring the community that they could still have dinner with their direct family members. These workers do not necessarily have a health background, but they can speak the language and read and write in English and their language. They are seen as having some influence and visibility within their community. In some settings, training was provided to the bilingual workers to become the 'face' of the COVID-19 communication strategy, working in partnership with the health officials. "We paid our bilingual educators to make calls to people, the networks they had, give them targets, and say, "Try and call at least ten women that you can. " They also enabled two-way feedback and the capacity to hear from the community members regarding any ongoing issues or factors impacting public health strategies such as testing. While participants spoke of the value of these workers, in reality, not all geographic areas had these workers available. --- "We hired eight bilingual workers in various language groups so that they can speak to callers to a particular language-specific phone number to ask for guidance on COVID-related matters. Not to be a substitute for the COVID helpline, but to be able actually to speak to someone in your language, ". --- Coordination is needed to avoid duplication and address gaps The issue of duplication was raised in terms of the development of resources and videos for different community groups: "What you ended up having was this website with collections of stuff in different languages often saying the same thing, but slightly different. It was a disaster" . Participants spoke about confusion amongst their community members when there were differing regulations across the different states/territories. They also cited confusion when organisations didn't "sing from the same songbook" or when messages were not consistent: "the service providers might send them something, Department of Health sends them something, and then their workplace sends something else, so it creates a lot of misunderstanding, but it creates a lot of confusion for the young people" . To reduce these issues, one participant suggested that it would be great to have a "one-stop-shop where GPs and community members also could access accurate health information according to language that they could easily search up and share with other members of the community". In putting for this suggestion, they acknowledge that a considerable amount of work was being done to develop resources but that they were not always stored in an easily accessible format. They were identifying the different needs of communities and the funding available, which needed to be promoted one state to introduce a community connector advisor, who was tasked with getting organisations to talk to each other. Other participants also endorsed the need for coordination at a state level, who felt that coordination of efforts could not be done at the district level: "Coordination is key… It's essential to have functioning networks with good information-sharing and healthy relationships to avoid that". . However, duplication was not always framed as having a negative impact on pandemic efforts as in some instances, having multiple videos outlining the public health requirements or promoting the COVID-19 vaccine may be helpful as each community organisation will 'add their own jargon" and will have a close relationship with the community they serve . As one participant stated: "In Queensland, we have quite strong regionalism, and people in the region are sometimes sick of being told what to do by Brisbane all the time. The decisions are from Brisbane in an urban area, and they don't always understand what's happening". It was acknowledged that if bottom-up approaches like this are going to be done, health experts must also be involved to ensure the messages are accurate. --- Recognising the improvements in governments' approach Participants raised concerns that early in the pandemic, the Australian and state governments did not seem to have plans for multicultural communities. Issues were raised with governments, but there wasn't the sense that organisations were 'heard' . Participants acknowledged that the government was only "15 min ahead of us in terms of the decisions and duration of the roll-out, in terms of the policy. A lot was happening, and it was swift. They just didn't take their time, and maybe they didn't have that time. . At a regional level, local government organisations undertook rapid consultations with community members to understand their perceptions of the pandemic and their concerns. Using this information, they could influence the local district response, including the visual and digital resources. --- "The advantage of this was because the community came on board in terms of what should go in, how should it be said, we were able to address the immediate fears and concerns of communities. We were able to have their people as the front face so that we could get the messages across. . Two events were signalled as the triggers for the governments revising their approaches. The first event was the hard lockdown in nine public housing towers in inner Melbourne, Victoria. There were significant delays in preparing and distributing materials about the lockdown in community languages and an absence of interpreters. The second event was the issue regarding the translation of COVID-19 materials and the mix-up in languages, including one document with mixed Farsi and Arabic words. As one participant indicated, at that point: "the Department of Health said, "Well, okay, let's get this done properly and listen. " Following those events, COVID-19 advisory groups focused on multicultural communities, bringing together academics, practitioners, GPs, and community members. This sense of a shift in the government's approach from mid-2020 was a consistent message across all the interviews. As one participant suggested, "they very clearly heard the message from communities, which is stopped doing it to us and start doing it with us". Representatives from different community organisations spoke about meeting with federal ministers/policy advisors via Zoom meetings. While there appeared to be improvements, issues were still raised regarding the responsiveness of the different government teams, including the policy versus communication teams. My criticism of the Department is that the policy side of the policy team is switched on, and they're with it; they're listening to the advice we're giving them. We're on the same page. Whereas the communication team, we keep saying the same thing over and over and over again. In the meetings, they say, "Yes, that's a good idea, and we'll go away", and we just keep seeing the same mistakes come up. We see things as fundamental as ensuring that English material is in plain simplified English before it goes to the translators. I think I've said that about 12 times. In the initial phase, funding was made available however it was directed towards peak bodies instead of going directly to the community. It was on the peak bodies to organise the distribution of funds via multicultural COVID-19 community grants, which local organisations could apply for to support local activities. For example: "one community ended up getting some funding,… the women were keen to watch the news and find out what happened, but the news is all in English. They had someone who was taking the announcements… three or four days' worth and putting it into one chunk of text and having that translated and then shooting that out via WhatsApp or WeChat or something, one of those platforms, to all of the members of the community group. . Lastly, criticisms were made of the funding that was directed towards consultants and creative agencies, as opposed to giving the money to the community to produce locally tailored content: "just give the money to the communities. They know the communities best, they know what the issues are. It's targeted, they're very local. " . --- Discussion By undertaking interviews with stakeholders involved in providing support to people from CaLD backgrounds, we were able to gain a rich understanding of the critical challenges encountered around communication and the attempts being used to engage with community members regarding the COVID-19 public health measures and restrictions. Our study results echo the concerns raised by multicultural networks and consumer council reports published since the start of this pandemic [19][20][21]. The remainder of this paper will focus on consolidating and reflecting on the critical lessons in order to inform ongoing pandemic efforts and revisions to pandemic plans/ guidelines. These lessons will centre on three key areas: partnerships and governance processes, supporting community ambassadors, and funding support and mechanisms of distribution. --- Partnerships and governance processes Throughout this pandemic, the issues of information/ resource overload and duplication of efforts have been contrasted with issues regarding community members' ability to access culturally tailored resources and in relevant modes of delivery. One possible strategy to reduce these issues in future events is to develop a management plan to support the response efforts focused on CaLD communities. A similar document is available to help the emergency response management and operations focused on Aboriginal and Torres Strait Islanders [22]. It outlines the critical partners' roles and responsibilities, including federal, state and territory governments and sector support organisations. Importantly, it outlines the need for coordination, with emphasis placed on identifying appropriate ways to engage with sector organisations and community stakeholders, establishing meetings for regular updates and sharing of important information, and establishing systems to build trust. Lastly, it also recognised the need to fund dedicated surge capacity to support relevant workers. The need for an advisory group was established early and included Public Health Medical Officers and leaders from the Aboriginal Community Controlled sector; Aboriginal Health Services; state and territory government public health and medical officials; Aboriginal communicable disease experts; the Australian Indigenous Doctors' Association; and the National Indigenous Australians Agency. In comparison, the need for a dedicated and tailored management plan for CaLD communities has not been historically outlined. Coming into this COVID-19 pandemic, Australia's response was traditionally guided by the Australian Health Management Plan for Pandemic Influenza [23], which was last updated in August 2019. This document acknowledged the need for Australia's public health response to be guided by the need to ensure equity in providing care and recognise the cultural values and religious beliefs of different community members. However, beyond that reference, the only other acknowledgement of the need to bring in other sector parties was linked to the delivery of the pandemicspecific immunisation program, with the recognised need to have education sessions delivered by CaLD community groups. With the emergence of COVID-19 came the release of an updated response plan, the Australian Health Sector Emergency Response Plan for Novel Coronavirus [24]. The document was published early in the pandemic and only referenced the need for potential support to be provided to remote and rural communities if needed. However, it took until December 2020 until an advisory committee was constituted focused on CaLD communities [25]. The advisory committee was constituted for the duration of need . It had three separate working groups focused on communication, vaccination, and data. The purpose of the advisory group was to advise the Department of Health on the 'experience of culturally, ethnically and linguistically diverse people and communities about the COVID-19 pandemic' . Looking beyond the COVID-19 pandemic, there is a need for a national advisory board to be created earlier in pandemics and large-scale emergencies to support meaningful partnerships and streamline the dissemination of communication and resources in a timely way. It could also have greater oversight into how funding is used to support communication efforts and signal to governments where barriers remain. The need for a national advisory group has been recently echoed by others [26]. At a state or district level, the value of having an interagency collective approach was outlined in a report focused on the network response that occurred in Queensland [27]. The initial core group was based on pre-existing collaboration between hospitals, health services, primary health networks and refugee health networks, with additional partners representing key multicultural agencies, settlement services, community councils, and government. This informal interagency network aimed to engage with all stakeholders and work with Queensland Health to facilitate COVID-19 public health messaging. An evaluation of the interagency collective approach highlighted that a strong partnership between the agencies has been formed and that there was a high level of satisfaction, despite the time requirements [27]. Regarding deliverables, the interagency collective demonstrated significant inputs and outputs as part of the collective response, including regular meetings, community and leader information/training sessions, newsletters and translated resources. One of the partners involved with the collective response stated, "We have achieved a great amount collectively in an everchanging environment with multiple players and complexities. This could not have been achieved without the partnership approach. " [27]. However, it was acknowledged that more work was needed to clarify and formalise partnership structures and processes. While these partnerships may have also been in place in other settings around Australia, to our knowledge, this was the largest, representing a broad scope of partners. Understanding the enablers and the structures and strategies that could strengthen the partnership would assist other States in introducing these collectives for both pandemic and nonpandemic emergencies. --- Supporting community-based ambassadors The need to support CaLD community leaders, faith leaders, and multilingual and settlement sector workers to be able to communicate about COVID-19 was a key message that came through all the interviews. These practitioners have been described as the "conduit between the Government and communities" based on their role in ensuring that messages are accessible, meaningful, and effective for communities [19]. The need to provide opportunities for education and training was identified early by some of the stakeholders we interviewed and acted on, with virtual meetings organised by local health districts and state health departments. But there was certainly no real sense whether these information/training sessions were available across all States/Territories or consistently delivered to all sectors. The need to provide the latest information on COVID-19 and medical and community resources to community leaders was highlighted in an article by Panagis Galiatsatos and colleagues [28]. The article outlined a program that commenced in early March 2020 for faith community leaders, which involved twice-weekly 60-min conference calls [28]. Beyond providing information to participants, the sessions also allowed the leaders to voice concerns and ask questions. As the pandemic continued, the spectrum of participants extended to representatives from religious communities, senior centres, hospitals and other health care centres, community service organisations, and the local government. Beyond supporting the understanding around COVID-19 of those on the calls, the authors also identified that the information from the community calls was being "shared by phone calls, texts, and e-mails. Other participants have shared the information with caregiver support groups, book clubs, community associations, Sunday school classes, and colleagues" [28]. Beyond ensuring community leaders and other stakeholders can receive the latest guidance about the situation and ask questions, there is also the need to consider broader training opportunities during pandemics or other emergencies, as well as ways to expand the potential pool of practitioners rapidly in response to pandemics and health emergencies [29,30]. Potential focus areas for training could be around strategies that support communication, discussing vaccines and effectively addressing misinformation. Other possible locations could be around developing resources for the community which account for health literacy needs. 'Community ownership' was a phrase that was repeatedly used by participants during the interviews, with emphasis placed on engaging communities in the development and testing of messages and audio/ visual materials. The need for bottom-up communication approaches involving stakeholders and tailored materials has been repeatedly echoed in the published literature , as it enhances accessibility, usability, and inclusiveness [26,31]. A bottom-up approach starts with understanding the targeted community, their information needs and what information/resources will satisfy these needs. This also means engaging different community actors, including the community, faith leaders, and those seen as trustworthy and relevant [32]. However, these processes require funding to support the development and time of the people involved. It is also critical that local public health units work closely with community actors to ensure that the health messages are accurate and reflect recommendations. Issues have been reported during the COVID pandemic regarding the accuracy of statements, the variability in health messages translated by community leaders, as well as situations where the values/beliefs of community leaders have not aligned with the health experts and government policy, and so conflicting messages, for example around the COVID-19 vaccine have been promoted. In some situations, anti-vaccination messages have been sent out by religious leaders [33][34][35]. To reduce this, it is suggested that health units and governments work closely with the community leaders, whereby community leaders and representatives write the materials for their community. Then the senior medical advisor fact-checks the resource. Lastly, while participants spoke about the close networks with community leaders and ambassadors, concerns were still raised about how actively governments engage with these actors. Efforts must be taken to explore the feedback mechanisms being used and to ensure that feedback is being collected from all of the different CaLD communities, as well as across urban, regional and remote areas. One suggestion is to establish WhatsApp groups with community ambassadors or community volunteers to collect questions, tips, and concerns. However, collecting this information is not enough; it must be discussed and shared across the response sectors. --- Funding support and mechanisms of dissemination The lack of resources and funding to support local initiatives was raised as an issue by the participants. It is important to note that challenges around funding for the community sector were evident before the COVID-19 pandemic [36]; however, these issues were heightened with some in the industry speaking about the challenges of the 'inflexible funding' that was made available and their inabilities to provide appropriate levels of support to community members or to pay staff appropriately. A report focused on the impact of COVID-19 on the community sector identified issues, including the ongoing struggles of organisations to meet the workloads and the reliance on volunteers [36]. Without the efforts of community leaders and volunteers, the response would have been grossly inadequate. Based on feedback from community sector workers and organisational leaders, it was suggested that funding needed to be increased from government sources and businesses and philanthropic funders are required to offer more significant financial support to community organisations. Importantly, given the level of uncertainty and change, funding must be flexible. In planning for future events, there is a need to ensure that consideration of CaLD communities must be incorporated into Commonwealth and state and territory planning. In addressing the specific needs of CaLD communities, recognition must be given to the diversity within and between communities. A one size fits all approach is not likely to be effective, acknowledging that some communities can mobilise their resources and staffing [37]. Our participants spoke about the need to support those communities that were recently established in Australia, whereas others have suggested that CaLD communities living in regional and remote areas need particular attention. Another suggestion is to ensure funding is available to CaLD media outlets. --- Limitations The study team acknowledges that CaLD communities are distinct yet heterogeneous groups with unique health delivery needs [38]. Efforts were therefore made to ensure stakeholders were recruited across a range of different CaLD communities. However, it should be acknowledged that we could not include participants from all the other CaLD communities in Australia. The following are noted as limitations for this work: interviews were only undertaken with a select group of participants, so the possibility of other important themes emerging cannot be ruled out; the use of snowball recruitment may have also reduced the range of opinions amassed from participants; and specific details regarding the participants' role was also not collected. However, the concordance across all states and territories and different CALD groups/roles of participants gives credibility to our study results. --- Conclusion During the COVID-19 pandemic, there have been issues around the poor quality, delays in the materials available to communities, and conflicting messages. There is an urgent need to capture these key lessons and use them to strengthen not only Australia's pandemic response but that of other countries with diverse communities, to ensure that future responses are equitable, represented and appropriately resourced. Alliances must be set up that can be activated in the future to reduce issues around resource development, translation, and dissemination of messages to minimise gaps in the response. Financial assistance must be provided in a timely way to local organisations to support the development of culturally appropriate communication materials. Not all communities require translated materials, so it is essential that tailoring and targeted approaches are used to ensure those community members who may be more vulnerable in public health events are not left behind. • 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 biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? Choose BMC and benefit from: ? Choose BMC and benefit from: --- --- --- --- --- --- Competing interests None. ---

Background: Since the emergence of COVID-19, issues have been raised regarding the approach used to engage with Culturally and Linguistically Diverse (CaLD) communities during this public health crisis. This study aimed to understand the factors impacting communication and engagement efforts during the COVID-19 pandemic from the perspective of crucial CaLD community stakeholders and opinion leaders. Methods: Forty-six semi-structured telephone interviews were undertaken with key stakeholders who have an active role (established before the pandemic) in delivering services and other social support to CaLD communities in Australia.Seven key themes emerged: (1) the digital divide and how to connect with people; (2) information voids being filled by international material; (3) Differentiating established with new and emerging communities' needs; (4) speaking COVID-19; (5) ineffectiveness of direct translations of English language resources; (6) coordination is needed to avoid duplication and address gaps and (7) recognising the improvements in governments' approach.Alliances must be set up that can be activated in the future to reduce issues around resource development, translation, and dissemination of messages to minimise gaps in the response. Financial assistance must be provided in a timely way to community organisations to support the development and dissemination of culturally appropriate communication materials.

Background Intimate partner violence is a prevalent and pressing public health issue, especially among women with young children in socio-economically deprived communities [1]. IPV can be present prior to pregnancy, continue or commence in pregnancy or start in the postnatal period [2]. It is clearly associated with detrimental health effects on women, their children and families [1]. Isolation, maternal depression and parenting stress are common consequences for abused mothers [3,4]. Early government policy responses to IPV in Australia, as elsewhere in Western countries, prioritised crisis intervention from police, legal and domestic violence services. More recently, a fervent debate about health care professional IPV screening and early intervention has included a focus on the lack of evidence for effective interventions [5]. While professional intervention has been recently examined, [6] less research attention has been paid to the potential contribution of non-professional support for primary care patients. Pregnant women and those with young children frequently attend primary care [7] General practice and maternal and child health clinics are universal, accessible and affordable primary care services in Melbourne, Australia. Thus, there are opportunities for prevention and early intervention strategies offered by the less stigmatising, confidential environment available in primary care. However, clinicians are often hampered by a range of individual and contextual barriers [8,9]. Inadequate training and support for identifying and managing IPV is complicated by limited evidence for what subsequent interventions to which they could refer, are beneficial for women from primary care settings [10,11]. Peer support and home visiting strategies have been shown to reduce maternal depression in the postnatal period, [12][13][14] but the picture is less clear when IPV is present [15]. In the most recent Cochrane review of IPV advocacy interventions, Ramsay et al argued for an increased range of intervention studies overall, but in particular for women remaining at home with perpetrators [6]. The MOSAIC model trialled in the current study combined evidence for the benefits of social support, [16] advocacy, [17] and antenatal mentoring [18] to reduce partner violence and improve women's mental and physical health. We located the study in primary care to contribute to the limited evidence about effective referral and intervention strategies in this setting and because mothers experiencing IPV are more prevalent in these populations. The development of the study is outlined in more detail in the published protocol [19]. In a pragmatic cluster randomised trial, we tested the effectiveness of the model to reduce partner abuse and depression and improve women's health and attachment to their children among pregnant or recent mothers identified in primary care. This paper reports on the primary outcomes of the study. --- Methods Figure 1 graphically summarises the trial and intervention processes. More detail of clinician and participant recruitment, clinician training and ethics is provided in the published protocol [19]. --- Cluster and clinician recruitment and randomisation Seven hundred and ninety general practice clinics and 12 MCH teams in the NW Melbourne region were eligible for recruitment. We targeted those GP clinics which offered shared care . Twenty-four practices and eight MCH teams were recruited and signed a memorandum of understanding to participate in IPV training and subsequent randomisation. A bilingual Vietnamese coordinator recruited Vietnamese practices for a Vietnamese sub-study. All participating clinicians undertook six hours of professional development to enhance their capacity to identify, respond to and refer women psychosocially distressed or experiencing IPV to community based services. Training for both MCH nurses and GPs was based on adult learning principles and contained both interactive and didactic elements. Clinicians were also provided with: referral booklets for IPV services; posters for waiting rooms; pocket-sized cards for women with local referral options and opportunities for further training. After training, clinic randomisation occurred at two public meetings to which clinicians were invited. Sealed opaque envelopes contained the randomisation possibilities and a guest external to the project made the selection. GP clinics were randomised by number of GPs participating . MCH clinics were randomised by team to avoid contamination within teams and teams were stratified by numbers of births per local government area. Given the cluster randomisation and the integration of the mentor model with enhanced primary care, clinicians were not blinded, nor were research staff, who fully briefed participants in the intervention arm about the mentoring program, negotiated informed consent and collected follow-up data about mentoring from participants in the intervention arm. --- Mentor recruitment and training Following the appointment of two mentor coordinators, we advertised widely in local newspapers, schools and radio for women from the NW Melbourne suburbs to become mentors. The major criterion was that mentors be mothers with good listening skills and an open, compassionate and non-judgmental approach. Potential mentors phoned and applied in writing, were interviewed twice by coordinators, provided three references and a police check. MOSAIC provided initial fiveday funded training that included befriending, domestic violence advocacy, working with depression, parenting support, safety and self care and then mentors met at regular intervals for further training and support. The MOSAIC training manual provides details of the mentor recruitment, training and support processes and is available online [20]. --- Participant referral and recruitment Women aged 16 and over attending GPs or MCH nurses were eligible to be referred to the study if they were pregnant or had at least one child five years or younger, and disclosed IPV or were psychosocially distressed. Psychosocial distress included women who had not disclosed but whose symptoms were indicative of abuse. Women were ineligible if they had a serious mental illness and were not taking medication, or their English was inadequate for informed consent, except for Vietnamese women, as Vietnamese bilingual staff and mentors participated in a sub-study. From Jan 2006 to Dec 2007, clinicians were asked to identify consecutive eligible women and invite their participation in a study of enhanced primary care for mothers' emotional health. They requested and then faxed safe contact details of women willing to consider participation. Research staff then contacted women and visited at a safe time and place, provided more information, negotiated consent and gave all women a resource card for new mothers, which included contacts for family violence services [19]. Mentoring then commenced in the intervention arm . Ethics approval was received from the Human Ethics Committees at both La Trobe University and the University of Melbourne . --- Objectives The primary aims of the trial were: • to reduce IPV and/or depression among women pregnant and/or with children under five whom GPs or MCH nurses identify as abused or at risk ; and • to strengthen the general health and wellbeing and mother-child bonding of abused or at-risk women. --- Main outcome measures We measured IPV using the Composite Abuse Scale , a well-validated and comprehensive measure [21]. An accepted cut-off score of ≥7 [5] was used to indicate IPV. Maternal depression was assessed as a score of ≥13 on the EPDS, now validated for use outside the immediate postnatal period [22,23]. General health and wellbeing were assessed with the SF-36 [24], and mother-child bonding expressed as parenting stress and attachment with the Parenting Stress Index Short form [25]. Social support was assessed with the Medical Outcomes Scale Short Form [26]. These measures were all included in the baseline and 12 month follow-up questionnaires, combined with questions about women's use of and satisfaction with their primary care services. Resources used for training and support of clinicians and mentors and in mentor support of women were measured from study records and time use logs kept by research staff and mentors. Costs from a health sector perspective of women's use of health care services over the 12 month period of the intervention were estimated using standard unit costs and presented in A$ 2009. --- Sample size MOSAIC aimed to detect a difference of 16% in IPV or depression a year after recruitment with traditional levels of 80% power and 95% confidence. This was estimated to require 165 women in each trial arm with individual randomisation, from a level of any prevalence value for either IPV or depression between 30% and 70% in the control group. With cluster randomisation, assuming an intra-class correlation of 0.02 (previously found in a GP partner violence study [27], the sample size required increased to 190 in each arm. Given the mobility of this vulnerable, sometimes fearful population we conservatively estimated an attrition and loss rate of as much as 45%, requiring at most 350 to be recruited in each arm. Due to lower than expected numbers of women referred and recruited by the end of the trial, we estimated prior to data analysis that the achieved sample size would have 80% power and 95% confidence to detect a reduction of 22% for IPV, 18% for depression and a difference of two units in the mental component score of the SF36. --- Documenting the intervention for process and impact evaluation Comprehensive process evaluation is detailed in the protocol [19]. This included: interim and impact surveys of participating GPs and nurses; fortnightly mentor contact sheets; four, eight and twelve month coordinator interviews with participants; and a supplementary impact questionnaire for intervention participants about the experience of being mentored . Qualitative semi-structured interviews with a diverse sample of mentored women about their experiences and also of their mentors' experiences were undertaken and will be published separately. An economic cost-consequences analysis was also conducted. --- Analysis Descriptive statistics of the characteristics of the intervention vs. comparison groups at recruitment were calculated to check that cluster randomisation resulted in similar groups. The main analysis was conducted as intention-totreat and included a comparison of the primary outcomes pre-and post intervention. These pre-specified measures are the proportion and means of those experiencing abuse , depression , mean scores on the Mental and Physical Health Component Scores of the SF36, the mean score on the Parenting Stress Index and the mean subscale on parent-child interaction. Due to an imbalance in the numbers of women recruited in the two arms of the trial, a propensity score analysis was also undertaken to balance the arms for potential confounding from possible selection bias, [28,29] after multiple imputation [30] for missing data using the ICE and MIM routines in Stata10 [31]. In the outcome models, the intervention effect was estimated adjusting for the baseline measure of each outcome variable as possible effect modifiers. Results are presented before and after inclusion of the propensity score that adjusts for possible selection bias. Multivariate logistic regression analyses were carried out using STATA 10, [31] and all were adjusted for the cluster design. --- Results Figure 2 describes sample recruitment and retention in the trial. Over the two years of recruitment, clinicians from 65/106 centres identified and referred 258 women, of whom 215 were eligible. Similar proportions of GPs and nurses referred no women at all, and only 7% of nurses and 11% of GPs referred 6 or more women . MOSAIC recruited 174/215 of the eligible women referred to the study and retained 76% at twelve months . Thus, 62% of referred and eligible women were both recruited to, and completed the study . This consisted of 90 women in the intervention arm and 43 in the comparison arm. All women were included in the intention to treat analysis, even though, as often in pragmatic trials, 10 women refused the intervention and one woman in the comparison arm mistakenly received it. --- Baseline characteristics Table 1 compares the characteristics of women recruited and retained in the trial with those subsequently lost to follow-up. At baseline, there were few differences in the socio-demographic profiles of participants retained in the study. Both groups included a high proportion of disadvantaged women, compared with non-Aboriginal Australian women giving birth in Victoria [32]. Around 70% in both arms had a health care card compared with 22% of Victorian women aged 15-44 [33], over half were dependent on a pension or benefit and over a third were born overseas, compared with 24% in Victoria. At baseline, measures of abuse were similar between groups [19], but the intervention group displayed higher levels of probable depression and parenting stress and significantly lower social support. Common to IPV studies [5], women lost to the study were more likely to be more severely abused. --- Intervention fidelity and women's feedback about the intervention Of the 90 retained women randomised to the intervention, 86 completed supplementary questions about their mentoring experiences. Of these, 10 women declined mentoring due to lack of time or perceived need and 76 women received some mentoring support. 58/76 received 12 months mentoring and 10.5% between three and nine months. The remainder were mentored for less than three months. A majority of women reported meeting weekly with their mentor, 18% fortnightly and 20% reported no regular pattern. Women met with their mentor in the woman's home , or elsewhere . Most women reported that the time they spent was just right, with 10.5% believing it was not enough and 2.5% that it was too much. Women reported being offered information most often about legal, self-care and parenting services but self care, educational, parenting and legal services were those that women reported they had most often actually used. Twice the proportion of mentored women 29/90 had taken up new studies or training or returned to further training or education over the past 12 months compared with non-mentored women -7/43 . --- Changes in primary and secondary outcome measures Table 3 outlines the analysis of observed differences in means and proportions between the intervention and comparison arms for all outcomes, with adjusted odds ratios with and without propensity scores . Only one outcome provided evidence of a true difference in abuse values. All other outcomes, with or without propensity scores, offered weaker or no evidence of a true difference, while indicating a trend in the directions expected. --- Partner violence The adjusted difference in the total CAS score from baseline was greater in the mentored compared with the nonmentored arm , but the evidence for this difference was weaker after PS adjustment. The odds of experiencing violence at follow-up, adjusted for baseline abuse were 0.47 . --- Depression Observed reduction in depression mean scores from 15.0 to 8.9 in the intervention arm compared favourably with non-mentored women , but the adjusted difference of -1.90, 95% CI -4.12 to 0.32, did not reach conventional statistical significance. The reduction from 72% to 22% of mentored women scoring as depressed compared with 60% to 33% in nonmentored women AdjOR 0.42, 95%CI 0.17 to 1.06). --- General health and wellbeing There was weak evidence for a difference between the intervention and comparison arms in general wellbeing improvements at follow-up, while mean adjusted differences on both the Mental and Physical Components Scores favoured the intervention arm. --- Parenting stress and parent child dysfunction The proportion of women experiencing parenting stress did not appear to be affected by the intervention. --- Costs There were no significant differences in use of health care services between groups over the 12 month followup period. Health sector costs were A$ 5,738 per woman higher in the intervention group. However, this estimate is arguably inflated by the artificial trial setting, as 60 mentors were trained but only 32 provided mentoring . At a predicted mentor capacity of 4 women per year with biannual training, predicted costs would be A$2,313 per woman. --- Discussion and Conclusion The evidence for effective interventions to reduce IPV and improve abused women's wellbeing is very limited, especially for women still living with partners, which includes half the participants in this study. In this first primary care randomised trial of non-professional mentor support for women abused by intimate partners, there was evidence of a true difference of reduced partner violence between mentored women referred from primary care populations compared with those not mentored . There was weak evidence for other findings suggestive of mentor benefit in reducing depression and improving physical and mental wellbeing. All findings were consistently in favour of the intervention arm, and the lack of stronger evidence for the differences may be due in part to the smaller than anticipated numbers of participants, resulting in reduced power to detect small, but meaningful differences. Despite substantial efforts to enhance clinician IPV knowledge, skills and resources, and clinician agreement to the randomised trial design, MOSAIC suffered from low rates of identification and referral from both nurses and doctors, particularly in the trial's comparison arm. There is evidence from clinician interviews of two problems. The first is that despite considerable training, many clinicians continued to feel under-confident to ask about IPV. We conclude that major systemic challenges remain to be overcome before health care providers feel sufficiently supported and confident to identify and effectively care for the abused women in their respective populations. Second, there was clearly a reluctance to refer women in the comparison arm in comparison with the intervention arm, due to a perception of no benefit for this group of vulnerable women even after feedback of positive comments about participation from women recruited to the comparison arm. This may also contribute to bias. Thus, the major threat to the validity of the study was clinician non-blinding [34]. This aspect of the design was thought to be unavoidable, as the mentor-mother program was designed to be integrated with primary care and women did talk about mentoring with their clinician. Low referrals overall and the 2:1 ratio of recruited women in the intervention versus comparison arms, introduced potential selection bias and had a substantial impact on our final sample size and our power to provide better evidence for intervention effects. Our approach to addressing selection bias involved adding PS to our analysis. While the PS analysis did result in altered effect sizes, it did not alter the direction of effects. The PS analysis did not alter the consistent trend towards more favorable outcomes in the intervention arm of the trial. Could we have avoided the problem? One solution would have been to randomise individual women once they had been referred to the research team. With hindsight this has some merit, given the small number of women any individual clinician actually referred, which meant that contamination may have been unlikely. However, it is also unclear whether the trial would have experienced even lower numbers of referrals if clinicians had known that women referred would only have a 50:50 chance of receiving the offer of a mentor. The self-report nature of the measures and the fact that we measured outcomes immediately after the intervention was completed, may be additional sources of bias. It remains unknown if any beneficial effect was sustained beyond 12 months. In the only other mentoring study -Madres a Madres, a study among an abused pregnant population where the majority of mentoring was provided by telephone and only up until the time of birth-McFarlane et al found that the benefits of mentoring during pregnancy were not sustained to 18 months after birth [35,18]. Birth and infancy are periods of considerable strain among families where there is no IPV, so the additional stress for mothers experiencing IPV is self-evident, whenever the abuse commenced. The emotional and practical support from mentors during this infancy period, sustained for up to a year as in the current study, may explain why our findings suggest some benefit. Our study findings are consistent with the growing number of studies providing evidence of the benefit of home-visiting for vulnerable mothers [36][37][38]. Yet, in the * 86/90 women in the intervention arm completed the supplementary survey reporting their mentoring experiences, however 10 women did not want a mentor. Percentages do not add to 100 as women could nominate more than one service if they were offered or used more than one. great majority of these, home visiting is provided by nurses and there is no evidence to date that nurse visits are effective when there is IPV present [15]. Nurses are often mandated to report child abuse and many women affected by IPV are fearful of losing their children or have many professionals already involved in their care. Given the findings of the current study we suggest there is a role for non-professional befriending models in the spectrum of professional and non-professional responses to IPV. Further research is needed to confirm the findings of MOSAIC and to determine whether positive effects can be sustained over the longer term. MOSAIC will contribute to the small but increasing trial evidence for advocacy interventions for women in health care settings, demonstrated in the recent Cochrane systematic review [10]. Given the problems experienced in the current study with clinician identification and referral, despite significant investment in upskilling and support resources, the question of what more can be done to enhance clinician care when IPV is present -for women, their children and in management of abusing partners -requires further investigation. --- Authors' contributions AT had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. AT was responsible for the study concept and study supervision. AT, RS, KH, LW, JL designed the overall study. LG designed the economic evaluation. LW, AT, RS, KH analysed the data and LG the economic evaluation. AT, LW, RS and LG drafted and were responsible for critical revision of the manuscript for important intellectual content. All currently employed authors reviewed and approved the final manuscript. --- Competing interests The authors declare that they have no competing interests. --- Pre-publication history The pre-publication history for this paper can be accessed here: http://www.biomedcentral.

Background: Effective interventions to increase safety and wellbeing of mothers experiencing intimate partner violence (IPV) are scarce. As much attention is focussed on professional intervention, this study aimed to determine the effectiveness of non-professional mentor support in reducing IPV and depression among pregnant and recent mothers experiencing, or at risk of IPV. Methods: MOSAIC was a cluster randomised trial in 106 primary care (maternal and child health nurse and general practitioner) clinics in Melbourne, Australia. 63/106 clinics referred 215 eligible culturally and linguistically diverse women between January 2006 and December 2007. 167 in the intervention (I) arm, and 91 in the comparison (C) arm. 174 (80.9%) were recruited. 133 (76.4%) women (90 I and 43 C) completed follow-up at 12 months. Intervention: 12 months of weekly home visiting from trained and supervised local mothers, (English & Vietnamese speaking) offering non-professional befriending, advocacy, parenting support and referrals. Main outcome measures: Primary outcomes; IPV (Composite Abuse Scale CAS) and depression (Edinburgh Postnatal Depression Scale EPDS); secondary measures included wellbeing (SF-36), parenting stress (PSI-SF) and social support (MOS-SF) at baseline and follow-up. Analysis: Intention-to-treat using multivariable logistic regression and propensity scoring. Results: There was evidence of a true difference in mean abuse scores at follow-up in the intervention compared with the comparison arm (15.9 vs 21.8, AdjDiff -8.67, CI -16.2 to -1.15). There was weak evidence for other outcomes, but a trend was evident favouring the intervention: proportions of women with CAS scores ≥7, 51/88 (58.4%) vs 27/42 (64.3%) AdjOR 0.47, CI 0.21 to 1.05); depression (EPDS score ≥13) (19/85, 22% (I) vs 14/43, 33% (C); AdjOR 0.42, CI 0.17 to 1.06); physical wellbeing mean scores (PCS-SF36: AdjDiff 2.79; CI -0.40 to 5.99); mental wellbeing mean scores (MCS-SF36: AdjDiff 2.26; CI -1.48 to 6.00). There was no observed effect on parenting stress. 82% of women mentored would recommend mentors to friends in similar situations.Non-professional mentor mother support appears promising for improving safety and enhancing physical and mental wellbeing among mothers experiencing intimate partner violence referred from primary care.

Background To encounter the pressure of population ageing on the social security system and the expected shortage of workers in the next decades in many developed countries [1], there is a societal need for workers to prolong their working life. Many European governments responded to this need by increasing the statutory retirement age and discouraging early exit from the workforce. Working beyond retirement may also provide in the need for prolonged working lives. Although previous research has identified a variety of factors that influence early exit from the labor market, still little is known about the factors that impact working beyond retirement. Retirement does not necessarily mean a final farewell to the labor market. In the Netherlands, a growing number of retirees engage in work activities between the end of their career employment and complete labor force withdrawal, which is often referred to as bridge employment. The percentage of people in the age group 65 to 70 years that works for at least 12 h per week, increased from 3.4 % in 2001 to 8.6 % in 2014 [2]. In comparison, these numbers are much higher in the United States where 30.8 % of the age group 65 to 69 worked at least 35 h per week, in 2010 [3]. Although previous research has shown that health, job characteristics, skills and knowledge, and financial and social factors may push or pull workers from work to early retirement [4][5][6][7][8][9][10], still little is known about the factors that impact working beyond retirement. It is unclear whether this is just predicted by a beneficial status of factors that influence early retirement, or whether also additional factors play a role. Second, it is unclear whether different factors predict working beyond retirement among retirees who retire 'on time' compared to retirees who retire early. Third, occupational epidemiologists often focus on health, work ability and physical job demands in relation to work force participation, whereas psychologists focus on motivational processes and psychosocial job demands, and economists focus on financial factors. To understand the complexity of working beyond retirement a broader perspective is needed. --- Theoretical background The life course perspective provides the opportunity to get a better understanding of the different factors that influence working beyond retirement. According to this perspective, it is expected that transitions, i.e. changes related to entering or exiting roles, such as the transition from work to retirement and vice versa, are embedded within multiple interdependent trajectories, i.e. within the life spheres health, work, family and leisure [11]. Working beyond retirement cannot be fully understood in isolation of a person's health, work and motivation to work, skills and knowledge, and financial and social situation . In the present study we will use the life course perspective as a framework to understand determinants of working beyond retirement by focusing on the life course principles 'human agency' , 'linked lives' , and 'timing' [11]. 'Human agency' implies that individuals actively create their own lives and choices, but that this is done within a set of opportunities and constraints that come with one's history or that exist in one's environment. Previous research showed that work motivation and motives are important predictors of early retirement intention and working beyond retirement, respectively [12,13]. A study showed that the most important reason to work beyond retirement, is that someone enjoys working [13]. Health problems can be considered as a constraint to continue working, since it predicts early retirement [10,14]. Job characteristics, such as physical work demands and high work pressure, may also hinder continued working [8,15]. On the other hand, psychosocial job characteristics, such as appreciation at work, could facilitate continued working [5]. Financial factors can also be considered as a constraint or an opportunity to stop working. Previous research showed that the financial possibility to retire early strongly contributed to early retirement [5]. The life course perspective also emphasizes the social embeddedness of transitions, by pointing to the principle of 'linked lives'. This principle refers to the interdependence of lives and it states that the lives of individuals are bound to the lives of others [11]. Transitions from work to early retirement are shaped to a large extent by social relationships, i.e. within the family and at work. Previous research showed that having a partner increased the likelihood of early retirement [8]. Also support of the partner to continue working or to retire early predicted retirement at older age and early retirement [5,16]. Another principle within the life course perspective is 'timing' , which refers to the age at which an experience occurs and how it is experienced [11]. Transitions can occur 'on time' or 'off time'. Transitions that occur off time ensure that persons do not have the chance to go through anticipatory socialization, and that they lack peers to provide social support and to share experiences regarding the transition [11]. Therefore, 'off time' transitions might be experienced as involuntary. In recent decades, there has been a strong 'early exit culture' in the Netherlands [17]. However, several pension system reforms have been implemented, such as the increase of the statutory retirement age from 65 years in 2012 to 67 in 2021 [18]. In addition, there is an extensive public debate on the need to prolong working life, and hence, the social norm may have become more favorable with respect to prolonged careers. Retiring at the statutory retirement age can be considered as 'on time' retirement, and retiring before the statutory retirement age can be considered as 'off time' retirement. Although early retirement is often considered as one of the more 'voluntary' pathways of early exit from the workforce, especially as compared to disability pension and unemployment, a recent qualitative study showed that early retirement is not always experienced in this way [19]. In this study employees with poor health sometimes retired early because they felt pushed out by their employer, although they themselves did not experience a reduced ability to work. In addition, such involuntary transitions from work to early retirement may have negative financial consequences, in situations where there was actually a financial need to continue working until the statutory retirement age. --- Research questions and hypotheses In the present study we investigate which factors influence working beyond retirement from a life course perspective. We aim to gain insight in how the timing of retirement could define subgroups of retirees regarding influential factors. Our first research question is: What is the influence of individual characteristics, work motives and motivation, health, job characteristics, skills and knowledge, and the financial and social situation on working beyond retirement? Our second research question is: Are there differences in the factors which influence working beyond retirement between those retirees who reached the statutory retirement age of 65 years, and thus retired 'on time' , and those who did not yet reach the statutory retirement age, and thus retired 'off time' ? In line with the principle 'timing' of the life course perspective, we expect that 'on time' retirees are intrinsically motivated to work beyond retirement, e.g. because they enjoy working, find their work meaningful or interesting, or think it offers opportunities for learning and development, whereas 'off time' retirees are extrinsically motivated to work beyond retirement, e.g. for financial reasons or because others expect them to do so. --- Methods --- Design and study population The current study is part of the Study on Transitions in Employment, Ability and Motivation [20]. STREAM is a Dutch longitudinal study among 15,118 persons including employees , self-employed persons , and persons without paid employment aged 45 to 64 years [20]. Persons participated in the GfK Intomart online panel and yearly filled out an online questionnaire in October/November 2010 , 2011 , 2012 , and 2013 . Participants come into the internet panel in various ways: via national representative research carried out by GfK Intomart , via contacts of persons already included in the panel , via newsletters , via banners , or because they applied for the internet panel themselves . They were paid to complete a questionnaire, i.e. for every completed questionnaire, the savings balance of the participant was increased by about €3.00. Persons who participated at baseline received all follow-up questionnaires, except for those who stated they did not want to participate in the GfK Intomart panel and on-going studies anymore. Approaching participants for the follow-up questionnaires took place in the same way as for the baseline questionnaire. The study population of STREAM, including the way of approaching participants, was previously extensively described elsewhere [20]. In the present study, we used data of all waves of STREAM. The study population of the present study consisted of persons who were employee at baseline , who retired at one of the follow-up measurements and who were aged 56 to 64 years at baseline . We chose 56 years as a lower age limit, since the proportion of employees that had retired after one, two or three years of follow-up strongly increased from this age onwards. 64 years was the upper age limit, because this is the maximum age of persons included in STREAM at baseline. Persons who retired at baseline were excluded, since we were interested in job characteristics as one of the domains of determinants in the present study. Also persons who lacked information on one of the determinants or the outcome variable were excluded from the present study. In total, 1,054 persons were included . To determine whether loss to follow-up was selective, we compared baseline characteristics of non-responders and responders using independent t-test. At baseline persons loss to follow-up were more often women , had more often low or medium educational level , and reported a slightly lower focus on development of knowledge and skills . --- Measurements All independent variables were derived from the baseline questionnaire and the outcome variable, i.e. working beyond retirement, was derived from the follow-up questionnaires. --- Fig. 1 Flow of the study population --- Working beyond retirement The outcome measure of the present study was working beyond retirement on one of the follow-up measurements. Working beyond retirement referred to working as an employee or self-employed person, while also receiving some form of retirement pension . Those who worked next to receiving a pension were compared with those who received a pension and did not work anymore. Information on work and retirement was derived from one question asking persons to indicate their employment status with, among others, the following answering options: a paid job or multiple paid jobs as an employee, self-employed, early retirement and retirement. The Dutch pension system consists of three pillars: the state old-age pension, supplementary pension schemes by virtue of the employer or sector , and private savings. The statutory retirement age at which persons receive their state old-age pension was raised from 65 years in 2012 to 67 in 2021. In this study retirement referred to employees who were aged 65 years or older and that they retired. Early retirement referred to those who reported that they retired early or those under the age of 65 years, whereas they reported that they retired. Persons with and without an interruption of not working immediately after retirement fall within this definition. We do not know the percentages of persons who continued working without an interruption and who started working after an interruption of not working, but in a subsample of persons who worked beyond retirement and who participated in all four measurements, the percentages were 61 %, and 39 % respectively. --- Individual characteristics Educational level was measured using a question on the highest level of education completed with a diploma, and categorized into low , intermediate or high . Mastery was measured using the Pearlin Mastery Scale, which reflects the degree to which persons feel they are in control of matters that affect their lives [21]. This scale consists of seven items with a 5-point answering scale ranging from 'totally disagree' to 'totally agree' . A higher score reflects a higher degree of mastery. Mastery was analyzed as a continuous scale. --- Work motives and motivation The following work motives were measured: working because someone likes to work, working because someone finds work meaningful, working for financial reasons, and working because others expect them to do so. Working because someone likes to work was measured using a scale consisting of three items . Working because someone finds work meaningful was measured using a scale consisting of two items . Working for financial reasons was measured using one item: 'I work to earn money'. Working because others expect them to do so was measured with one item: 'I work because people in my environment think it is important'. All items on work motives could be answered on a 5-point answering scale ranging from 'totally disagree' to 'totally agree'. Due to the skewed distribution of the two scales and the two separate items on work motives, the variables were dichotomized. Work engagement was measured using the dimensions vigor and dedication of the Utrecht Work Engagement Scale [22]. Vigor refers to having a lot of energy at work and mental resilience, feeling strong and fit, and not getting tired from work very fast. Dedication refers to enthusiasm, inspiration, proud, and job satisfaction. The dimensions vigor and dedication were combined to one scale for work engagement . Items could be answered on a 7-point scale and a higher score reflects a higher work engagement. In the analyses we considered work engagement as a continuous variable. --- Health Perceived physical health and perceived mental health was measured using the physical component summary scale and the mental component summary scale of the Short Form-12 Health Survey respectively [23]. The scales range from 0-100 . An example of a PCS item: 'Does your health now limit you in climbing several flights of stairs?'. An example of a MCS item is: 'Have you felt downhearted and blue?'. Due to the skewed distribution of both scales, the interquartile range was used to distinguish between poor, moderate, and good health. --- Job characteristics Physical demands were measured using a scale consisting of six items on regular use of force, the use of vibrating tools, awkward postures, prolonged standing, and prolonged squatting based on the Netherlands Working Conditions Survey 2009 [24] and the Dutch Musculoskeletal Questionnaire [25]. A 5point answer scale was used ranging from 'always' to ' never'. Due to the skewed distribution, the interquartile range was used to distinguish between high, moderate, and low physical demands. Job demands and job autonomy were measured using four and five items, respectively, all derived from the Job Content Questionnaire [26,27]. A 5-point scale was used ranging from 'always' to ' never'. An example of a job demands item is 'Do you have to work very fast?'. An example of an autonomy item is 'Are you able to decide for yourself how to do your work?'. Higher scores reflect higher job demands and higher job autonomy. Job demands and job autonomy were analyzed as continuous scales. Furthermore, employees indicated on a 4-point scale whether the following aspects are present at work: appreciation, interesting work, and opportunities for learning and development [28]. The answers 'not present at all' and 'somewhat present' were classified into 'not present' and 'rather present' and 'highly present' were classified into 'present'. In addition, social support of colleagues and supervisor was measured using a 4-item scale derived from the Copenhagen Psychosocial Questionnaire [29]. Employees indicated how often their colleagues or their supervisor helped or supported them and how often they were willing to listen to their work-related problems. A 5-point answer scale was used ranging from 'always' to 'almost never'. Lower scores reflect higher social support from colleagues and supervisor. Social support of colleagues and supervisor was analyzed as a continuous scale. --- Skills and knowledge Developmental proactivity was measured using a 4-item scale derived from Van Veldhoven and Dorenbosch [30]. This scale reflects the extent to which persons actively search for activities in their job that allow them to expand knowledge and skills and adapt their knowledge and skills to changes in their jobs. Items could be answered on a 5-point scale . A higher score means a higher focus on development of skills and knowledge. Developmental proactivity was analyzed as a continuous scale. --- Financial situation In the domain of financial situation, the financial situation of the household was measured using the following item: 'What is the financial situation of your household now?'. Answering categories were 'very short of money', 'somewhat short of money', 'just adequate', 'some money left' and 'a lot of money left'. The categories were classified into 'money left', 'just adequate', or 'short of money'. Furthermore, the financial possibility to stop working before age 65 was measured. Employees were asked: 'Could you financially afford to stop working before the official retirement age?' This question could be answered with 'yes', 'no', or 'don't know'. --- Social situation Participants provided information on their household composition. In the analyses we distinguished between persons with and without a partner. Also, employment status of a partner was assessed. In the analyses we distinguished between non-working and working. In addition, participation in informal care and voluntary work were assessed. --- Analysis Regarding the first research question predictors of working beyond retirement were studied by logistic regression analyses. Odds ratios and 95 % confidence intervals were calculated to express the probability of working beyond retirement. In the first step of the analyses, univariate associations between individual characteristics, work motives and motivation, health, job characteristics, skills and knowledge, and financial and social situation at T1 with working beyond retirement on one of the follow-up measurements were established. Second, multivariate analyses were performed for all variables in the univariate analyses with p < 0.20, using stepwise backward elimination. Variables with p < 0.05 were retained in the final multivariate model. Age and gender were included in all analyses by default. To answer the second research question about differences in determinants of working beyond retirement between persons who retired 'off time' and persons who retired 'on time' we performed stratified analyses for these groups. We followed the same procedure as for the whole group. Groups were defined on the basis of timing of their retirement: 'off time' retirement for persons who retired before the age of 65 or 'on time' retirement for persons who were 65 when they retired. All statistical analyses were carried out using SPSS Statistics 22. --- Ethical issues The Medical Ethical Committee of the VU University Medical Center Amsterdam declared that the Medical Research Involving Human Subjects Act did not apply to STREAM. The Medical Ethical Committee had no objection to the execution of this study. In the information for participants that accompanied the online questionnaire, it was emphasized that the privacy of participants was guaranteed, that all answers to the questions were treated confidentially, and that all data were stored in secured computer systems. --- Availability of data Data that were used for the present study are available on request . --- Results Table 1 shows the characteristics of the study population . In total, 25 % of the employees at T1 that retired at T2, T3 or T4, worked beyond retirement . 137 persons worked beyond 'off time' retirement and 127 persons worked beyond 'on time' retirement. --- Determinants of working beyond retirement In the univariate logistic regression analyses, older persons, those who work because they like to work, and those with higher degrees of work engagement, appreciation at work and interesting work, those with good physical health, those with a high focus on development of skills and knowledge , those who participate in voluntary work and those who have a poor financial situation, worked beyond retirement more often . In the multivariate analyses, older age , being male , high work engagement , good physical health , participating in voluntary work and a poor financial situation , predicted working beyond retirement. --- Determinants of working beyond 'off time' and 'on time' retirement In the multivariate analyses within the group of persons that retired 'off time' , being male , high work engagement , good physical health , participating in voluntary work and a poor financial situation predicted working beyond retirement . The ORs were comparable to the ORs of the total group of retirees. In addition, not having a partner and not having the financial possibility to retire before the age of 65 predicted working beyond retirement. In the multivariate analyses within the group of persons that retired 'on time' , older age , high work engagement and a poor financial situation predicted working beyond retirement . The ORs were comparable to those of the total group of retirees. In addition, persons who experienced more social support from colleagues and supervisor and persons who did not have the financial possibility or did not know whether they had the financial possibility to retire before the age of 65 worked beyond retirement less often. --- Discussion and Conclusion This study aimed to gain insight in the influence of individual characteristics, work motives and motivation, health, job characteristics, skills and knowledge, and the financial and social situation on working beyond retirement and to investigate whether there are differences between 'on time' and 'off time' retirees. Regarding the first research question, our study showed that work motivation, health, and the financial situation influence working beyond retirement. This is in line with the principle 'human agency' of the life course perspective and with previous studies on predictors of early retirement [5,6,9,10,12]. The results showed that persons who were highly engaged in their work were more likely to work beyond retirement, which confirms findings from a previous study that showed that intrinsic motivation was related to the willingness to continue working [31], and a study that showed that a lower motivation to work was associated with intention to retire early [12]. Previous research showed that selfperceived poor health predicts early retirement, but that specifically mental health problems are not related to early retirement [10]. Indeed, the opposite seems true with regard to working beyond retirement; good physical health predicts working beyond retirement and good mental health does not. Hence, even though our study population probably is a selection of the more healthy employees, since the unhealthy ones partly have left the workforce through disability benefits in previous years , physical health predicts working beyond retirement. Contrary to what we expected, work motives, job characteristics, and skills and knowledge did not predict working beyond retirement multivariately, whereas the enjoyment motive, appreciation at work, interesting work and developmental proactivity predicted working beyond retirement in the univariate analyses. This may be explained by work engagement, which was moderately interrelated with these variables . In line with the principle 'linked lives' of the life course perspective, we expected that having a partner, and employment status of the partner are related to working beyond retirement. However, our study found no effect. This contradicts previous research that showed that having a partner increased the likelihood of early retirement [8], and that the attitude and support of the partner about continuing to work or early retirement predicted retirement at older age and early retirement, respectively [5,16]. However, persons who participated in voluntary work were more likely to work beyond retirement, which is an indication that working beyond retirement is embedded in someone's social situation to a certain degree, and that it cannot be seen in isolation from other social relationships. Regarding the second research question, our study showed that determinants of working beyond 'off time' retirement and working beyond 'on time' retirement were largely comparable. However, two remarkable differences should be mentioned; in the group of 'off time' retirees, not having the financial possibility to retire early predicted working beyond retirement, whereas in the group of 'on time' retirees persons who did not have the financial possibility to retire early were less likely to work beyond retirement. This partially supports our hypothesis that 'off time' retirees are extrinsically motivated to work beyond retirement to a larger extent than 'on time' retirees. This might indicate that the group of 'off time' retirees partly consisted of persons who experienced their transition from work to early retirement as involuntary, for example because they felt pushed out by their employer, whereas they actually wanted to continue working or could not financially afford to retire early, and therefore started to work beyond retirement. Unfortunately we did not have information on voluntariness of the transition. Future research might investigate whether the retirement context, i.e. the reason for retirement and voluntariness of retirement could be important characteristics to define subgroups of retirees with regard to working beyond retirement. Persons who were highly engaged in their work, were more likely to work beyond retirement, both in the group of 'off time' retirees and the group of 'on time' retirees. This is contrary to our hypothesis that 'on time' retirees would be intrinsically motivated to a larger extent than 'off time' retirees. Although timing of retirement could partially define subgroups of retirees, the pattern regarding intrinsic and extrinsic motivation is not as clear as we would have expected based on the timing principle of the life course perspective. This may indicate that there are also other characteristics that could define subgroups of retirees, such as educational level. It may be that within our study population, educational level explains why we found that both intrinsic factors and extrinsic factors predicted working beyond retirement. We tested this possibility by post-hoc analyses stratified by educational level . The results indicated that within persons with a higher educational level, having the financial possibility to retire early predicted working beyond retirement, whereas within persons with a lower educational level having the financial possibility was not related to working beyond retirement. However, the role of work engagement was comparable for persons with a low educational level and those with a high educational level. Hence, also educational level could only partially explain which factors predicted working beyond retirement. This may imply that either there are no clear subgroups of retirees regarding working beyond retirement, or that other characteristics, which were not incorporated in the present study, play a role. Although our study involved a broad range of variables in a diversity of domains, we did not consider different 'types' of retirement. We were not able to distinguish between retirement schemes, e.g. an early retirement scheme via employer or sector, retirement because someone reached a job-specific retirement age, part-time, or full-time retirement. Especially the degree to which working beyond retirement is financially attractive might differ between different retirement schemes. Future research might further investigate whether education and 'type' of retirement are relevant characteristics to define subgroups of retirees. Strengths of the present study are the longitudinal character of the large dataset, and the fact that variables frequently studied in different areas of expertise, i.e. work motives and motivation, health, job characteristics, skills and knowledge, and the financial and social situation, were all included in this study. Moreover, we had low drop-out in the present study; 79 % of the participants of interest at T1 also participated at T2, T3, and T4, which can be considered as a high response in longitudinal research. However, this study also has limitations. First, all data relied on self-reports. A drawback of measuring employment status relying on self-report is that it is dependent on the interpretation of the participant and it is thus not defined by, for example, the main source of income as registered by a tax institution or the government. A second limitation is the relatively short [4]. In addition, this study showed that later labour market entry and late transitions into parenthood were associated with a lower likelihood of early retirement, and that part-time work before the age of 50 years resulted in a higher likelihood of early retirement. Third, selection bias may have occurred as a result of selective entry in this internet panel. Certain groups of persons, i.e. without internet access, illiterate persons and persons who do not master the Dutch language, may be underexposed in an internet panel. The findings of the present study may not be generalizable to these groups. Selection bias may also have occurred as a result of selective non-response at follow-up. However, the response of the study was high, i.e. 79 %, and differences between respondents and non-respondents on baseline characteristics were small, and considered as not relevant. As previously described, future research is needed to investigate the role of the retirement context, i.e. the reason for retirement and voluntariness of retirement, as well as differences in educational level and 'type' of retirement with regard to working beyond retirement. Besides, we used the statutory retirement age of 65 years to distinguish between 'on time' and 'off time' retirement. Since not only institutional but also cultural and individual norms determine the 'right' time of a transition, future research is needed to determine where the line should be drawn. Furthermore, future research should explore further possibilities of using the life course perspective to understand factors that influence working beyond retirement. There is still little understanding on how different determinants influence working beyond retirement and why persons work beyond retirement. Especially the group of persons who works beyond early retirement is of interest, since an alternative career path for these persons may have been to retire at later age. Finally, it is unclear whether working beyond retirement mostly occurs in an employment contract with same employers and occupations or different employers and occupations, and whether it can be seen as a sustainable way of prolonging working life. We recommend future research to give more insight in these characteristics of working beyond retirement. In conclusion, our results indicated that especially the motivation to work, physical health, the financial situation of the household, and participation in voluntary work played an important role in working beyond retirement. This supports the idea that the human agency principle of the life course perspective is useful to understand factors that impact working beyond retirement. Since social situation did not play a role, except for voluntary work, less evidence was found for the linked lives principle. Also timing seemed to be less relevant, since hardly any differences between 'off time' and 'on time' retirees were found. --- --- Competing interests The authors declare that they have no competing interests.

Background: There is a societal need that workers prolong their working lives. By adopting a life course perspective, this study aimed to investigate the influence of work motives and motivation, health, job characteristics, skills, and financial and social situation on working beyond retirement, and differences between 'on time' and 'off time' retirees (retirement age 65 and <65 years, respectively). Methods: Retirees aged 57 to 67 years (N = 1,054) who participated in the Dutch Study on Transitions in Employment, Ability and Motivation were included in this study. Participants filled out a questionnaire in 2010, 2011, 2012, and 2013. Predictors of working beyond retirement were identified using logistic regression analyses, and stratified analyses were performed to investigate differences between 'off time' and 'on time' retirees. Results: High work engagement (OR = 1.3), good physical health (OR = 1.8), poor financial situation (OR = 2.4), and voluntary work (OR = 1.5) predicted working beyond retirement. For 'off time' retirees, no financial possibility to retire early (OR = 1.8) and not having a partner (OR = 1.9) predicted working beyond retirement. 'On time' retirees reporting more support at work (OR = 0.7) and without the financial possibility to retire early (OR = 0.5), worked beyond retirement less often.The results indicated that especially the motivation to work, physical health and the financial situation were the most relevant aspects with regard to working beyond retirement, which supports the idea that the principle of 'human agency' of the life course perspective is useful to understand factors that impact working beyond retirement. Most aspects of the life course principles of 'linked lives' and 'timing' seemed to be less relevant.

rate of and increase treatment for hepatitis B infection in the San Francisco Bay Area, starting in 2007, the San Francisco Hep B Free Campaign drew together a comprehensive coalition of key leaders and organizations from media, health care, government, community, and business sectors within and beyond the Asian American community. The key priorities of the SFHBF campaign are to create public and health care provider awareness about the importance of testing and vaccinating Asian Americans for hepatitis B, to promote routine hepatitis B testing and vaccination within the primary care medical community, and to ensure access to treatment for chronically infected individuals. SFHBF has created and implemented a dual-pronged comprehensive media campaign to communicate Asian American-targeted screening, vaccination, and treatment messages and broader awareness messages that raise consciousness and support in general society and mainstream institutions. --- SFHBF Campaign: Delivering the Message Through PSAs Taking lessons from other health movements impacting subpopulations in the USA , SFHBF organizers were determined to utilize unique characteristics of Asian American communities to create an effective health care movement. SFHBF started with no funds nor identified funding sources. Individuals donated time, and organizations donated staff and office support. In one of their first actions, organizers gained strong public statements of support from two of the highest level officials in San Francisco: Mayor Gavin Newsom and then Supervisor Fiona Ma giving legitimacy to the campaign. Ma helped break down the stigma surrounding hepatitis B through her willingness to talk publically about her own chronic HBV infection. Mayor Newsom made it his goal for San Francisco to be free of hepatitis B and to serve as a public health model for the nation. In spring 2007, bus signs and billboards with images of Ma and Newsom introduced San Franciscans to the SFHBF campaign and the concept of getting tested. With Asian Americans living and working throughout San Francisco, the ad campaign implemented an innovative combination of mainstream media that included select billboards in Asian American neighborhoods and on those transit lines with high Asian American ridership. The ads featured three large images: Mayor Newsom, Assemblywoman Ma, and the SFHBF logo. A simple message stated "B Sure. B Tested. B Free." In 2008, the "B a Hero" ad campaign featured Asian Americans with drawn cape and Superman hero costumes superimposed on their everyday clothing, with a "B" appearing in place of the Superman "S." The concept was that anyone could be a hero by getting tested for HBV and talking to friends and family about being tested. The "B a Hero" logo easily translated to t-shirts, media outreach, flyers, and capes. An annual "B a Hero" award, including a crystal sculpture and a superhero cape, were awarded at the annual "B a Hero" gala. This campaign presented a positive, upbeat approach to destigmatize the issue among Asian Americans. Launched in 2009, the third phase of the advertising strategy was the "Which One Deserves to Die?" campaign. This campaign broke new ground in messaging for Asian Americans, utilizing virtually all forms of media including television, radio, print, outdoor, and social media . The campaign leveraged cash to in-kind contributions, garnering five times the media coverage for every dollar spent. All 60 models were local volunteers representing a diverse range of Asian ethnicities. The use of people from the community helped foster a sense of community pride in a historical community movement. Unlike the "B a Hero" campaign, the message, "Which One Deserves to Die?" was designed to motivate people to take action and get tested by speaking to the seriousness of the disease . Two 30-s public service announcements were developed. One features Asian American beauty pageant contestants. The voice-over asks, "Out of these ten women, which one deserves to die?" As the voice-over continues, saying, "One in ten Asian Americans is infected with hep B, the leading cause of liver cancer," the camera pans in onto the women's faces as they look startled and frightened. Then, a light bulb in a chandelier turns on while the voice says, "but hepatitis B can be treated, even prevented. Get tested. Stop liver cancer by stopping hepatitis B." The second commercial is an Asian American intergenerational family getting ready to take a formal family photo. The messaging is the same as above. The ads end showing the text of the campaign slogan, "B a Hero. See a Doctor Who Tests for Hep B." --- Educational, Entertaining, and Culturally Sensitive Narratives and --- Respected Leaders This is the first research study examining the role of influential Asian American leaders, celebrities, and others in health promotion campaigns. According to Valente and Pumpuang , opinion leaders in a community can serve vital functions in a health campaign, including providing legitimacy to other influential individuals, entities, and organizations to get involved, serving as role models for behavior change and conveying health messages [5]. A key practice of SFHBF has been the use of visible and highly respected voices in San Francisco's Asian American community, ranging from community and political leaders, to celebrities and physicians. SFHBF is also the first effort to use a "narrative" approach to engage Asian Americans. Studies have shown that narrative communication is becoming an important tool for health campaigns generally [6]. According to Schank and Berman , narrative communication can take multiple different forms-including official stories, invented stories, and personal stories-to educate about a particular health issue [7]. In racial and ethnic minority communities, personal experience narratives have been shown to be effective in promoting cancer screenings as demonstrated in the Witness Project, a program in which local African-American breast and cervical cancer survivors, called "witness role models," talk about, or "witness," their cancer experiences. Women who participated in such "witnessing" had increased "buy in" to the program because the "witness role models" were from the community and shared similar cultural values and understandings [8,9]. Previous work on Asian Americans and hepatitis screenings has shown that sources of messages make a difference in how the targeted audience responds. For example, in a study comparing community mobilization versus media campaigns in a campaign to promote hepatitis B vaccinations among Vietnamese-American children, investigators found that both media education and community mobilization successfully increased the number of Vietnamese-American children vaccinated [10]. Others have used community health promoters and lay health workers [10]; student-led educational workshops [11]; low-cost, affordable screening, and vaccinations [12]; and direct mailings of audiovisual and print materials [2,10]. Although the effectiveness of these particular interventions has been studied, there is a lack of in-depth analysis on health communication and narrative practices used to effectively outreach to Asian Americans. --- Methods This study primarily sought to determine what messages and modes of communication regarding screening, testing, and vaccination about the hepatitis B virus have resonated with the San Francisco Asian American community. Twenty-three individuals, including community members, health care providers, media and political leaders, and leaders of Asian American community organizations were interviewed about and their thoughts on effectiveness and best practices in terms of health communication strategies of the SFHBF campaign. The interviews were tape-recorded and then fully transcribed. In the first iteration of qualitative analysis, the data were coded using grounded theory analytical methods [13] to identify themes, trends, and patterns about the successes and challenges of the health messages presented by the SFHBF campaign. --- Results According to these key informants, this campaign proved successful in moving community views of hepatitis B from stigmatized taboo to a community-wide health and wellness cause. Several themes occur repeatedly across the interviews and in the field notes, including destigmatizing and depersonalizing hep B to be not about bad people or bad behavior, utilizing public disclosures as an avenue to disseminate this message, emphasizing that "We" and "You" can effect change and connecting individual and collective actions. --- Destigmatizing Hep B: Not About Bad People or Bad Behavior In many Asian countries, infected patients are acculturated to feel ashamed or fearful, and consequently hide their disease. SFHBF aggressively reframed the discourse through factual information on transmission, emphasizing medical solutions, and creating positive emotions and feelings of empowerment. According to key informants, a major challenge in overcoming stigmatization is the association in Asia of hepatitis B with "bad people" and "bad behavior." The common presumption in Asia is that those infected somehow deserve it. This cultural stigma can carry over to Asians in America, causing social exile for those with and creating silence around hepatitis B. San Francisco Board of Supervisors President David Chiu suggests that SFHBF shifted this paradigm by providing multiple opportunities for the Asian American community to talk about hepatitis B openly and educationally: I think addressing the stereotype that somehow people who get hepatitis are bad people or that it's sexually transmitted to only certain populations is important. And I think because of that, there's a cultured stigma within our community to not talk about it. And I think what we've done is bring it out of the closet. We've explained that it is a disease that you can pick up from many places. Chiu, whose supervisorial district includes Chinatown, cites the power of SFHBF to destigmatize hepatitis B by teaching people to teach others that hepatitis B is not simply transmitted by "bad behavior." Francis Tsang, an aide to then San Francisco Mayor Gavin Newsom, drew comparisons with other stigmatized diseases: It is something that has a lot of stigma like HIV AIDS and some cancers, you have these stigmas about Hep B; when you start talking about the stigmas it's removed a little bit because people are talking about it being treatable or preventable, not curable, but …it's something we can eliminate over time. Destigmatization is not only a first step, but is also a process that needs to be continually reiterated. Jason Liu, an activist and premedical student, says that even when educating Asian Americans that their primary mode of hepatitis B infection is from fluids transferred during the birthing process, the stigma is still difficult to eradicate given that hepatitis B can be transmitted sexually or through drug use. Liu says changing this stigma requires a multilevel, continually reinforced process because people are "afraid of being stigmatized by the message. So, even though we talk about getting screened, and it's important for stopping liver cancer, there is still stigma." --- Moving Stigma Aside: Utilizing Public Disclosures All key informants discussed the importance of well-known and respected Asian Americans speaking out; by virtue of their media presence or political standing, they influence community leaders and members to see hepatitis B as a significant and an urgent issue. Many said personal disclosures by well-known Asian Americans such as California Assemblywoman Fiona Ma and local ABC affiliate news anchor Alan Wang destigmatized hepatitis B. These two individuals' highly public and positive stories put the San Francisco Hep B Free campaign at the forefront of the minds of local Asian Americans. Assemblywoman Ma has been featured in stories, events, and ads as someone living with hepatitis B. Supervisor Chiu cited this as an important factor in shifting attitudes about hepatitis B: "putting… people who have the disease who speak up, has been remarkably effective. Saying, 'Hey Fiona Ma has it,' is, I think, probably the most powerful." Mayoral aide Tsang adds I see Fiona Ma being the poster child for hep B, you know, since she's infected with hep B; also, I think that the focus of celebrating Asian Americans with Asian American Heritage month is raising awareness about hep B. Ma herself has seen the impact of publicly sharing her story: "Some people have said, 'You saved my life because I didn't know I had it, and now I'm able to treat it before it got too late.'" She adds, "For Asians, [often,] their relatives have died from it, they didn't know why, maybe. And now they're actually going to get tested and screened and making sure their family members are doing it. So I feel good about that." Ma believes in using her political office to be a voice to serve the community. She says, "I talk about anything and everything and I think it's why I'm in an elected office, and I should use my position to be a voice. Otherwise, why bother being here?" Jeanette Tam, who works for a health plan focused on Chinese-Americans, also cites Ma's impact, saying, "this is not something that Chinese people and Chinese families discuss: weaknesses. And so with Fiona Ma coming out and talking about that, it was an eye opener to me." That a public figure would risk her public image coming forward impressed Tam enough to encourage her to speak up as well. Tam states, "And even if you choose to tell someone to get prevention, get tested, and get vaccinated, that's good. And if it goes as far as, 'You know what? I'm going through it too,' it puts a human face on it so that people don't have to feel secretive." Each disclosure has helped others to find courage to take action. Alan Wang reveals that he was inspired to open up about his hep B status by Fiona Ma and her openness to share: It was very shocking to me. But that is what dawned on me, …because I have kind of hidden behind it myself. As a news anchor, as a public figure, I was afraid-it's very similar to AIDS in many ways…. [Now] I have spoken about it on the air, I've covered stories with it, and actually kind of given a full disclosure in my story explaining my situation and my family. In an on-air piece, Wang described discovery of his own infection status, and his on-going monitoring and treatment to prevent liver cancer. He has proven to be a key resource and voice for the campaign by talking about his hepatitis B infection openly. Dr. Ed Chow, medical director of the Chinese Community Health Plan, says these public disclosures have been monumental: "the fact that we can now talk about hepatitis B and have it as an open discussion and that there is opportunity for prevention." --- Motivating Action by Emphasizing Solutions: We Can Do Something About This! According to key informants, focusing on the message that this is a problem that can be solved has encouraged greater involvement by members of the community. This is coupled with the message that up to two thirds of infected Asian Americans who are infected are unaware of their disease and potential for liver cancer. Thus, a start to destigmatization and action involves making clear that this disease can be prevented through combined community efforts. SFHBF's "B a Hero" campaign was built around the idea that addressing hepatitis B is a heroic cause and that "we," everyday people, can make a difference. Chinese Hospital's Dr. Stuart Fong states, "We want people to be a hero. … getting themselves tested, knowing their status and if they need to be vaccinated to get vaccinated." Being proactive as individuals is important, but the "B a Hero" campaign also considers the importance of encouraging family members to get screened, tested, and vaccinated. Another best practice of this campaign, according to respondents, is refocusing attention onto solutions such as vaccination and treatment availability and shifting the paradigm of the disease away from the impression that it is a death sentence. Thus, the taboo against discussing "bad news," especially news related to death, can be subverted by the message that the community working together can prevent hepatitis b disease and liver cancer. Through it all, Dr. Chow emphasizes the importance of providing a way for Asian Americans to discuss it and credits the campaign with doing so. He states: The fact that … there is opportunity for prevention, I think that's a very important message that … allows hep B to be discussed. And then the fact that … by identifying a carrier and then placing them on observation and treatment if necessary we can avoid liver failure or liver cancer. Several participants mentioned that hepatitis B has been "destigmatized" by developing the message that something could be done to stop hepatitis B disease. According to Asian American community activist Mary Jung: Here was something that we could actually do something about. Sort of like malaria, like back last century. Or polio where people just made a concerted effort. And you know, almost eradicated it, right? Unlike many other illnesses, the negative effects of hepatitis are preventable with the concerted effort of education. So hepatitis B is one of these ones where you say, 'Okay, it affects a large part of the Asian population… you can actually do something about it.' Jung says the ability of individuals working together to make a difference gives participants a positive outlook: "Isn't it nice to work on something that's preventive? …. Instead of always earning money for research like for cancer, or something like that." Jung's attitude reflects a high level of enthusiasm for the belief that everyone has the opportunity to become a hero. It also contributes to the powerful energy driving the SFHBF campaign and is driven itself by the possibility that one of the deadliest diseases facing Asians and Pacific Islanders -liver cancer-can come to an end through community-wide collaboration. The fact that hepatitis B can be prevented and controlled means it can be seen as different from cancer, which many Asian Americans associate with a death sentence. Peter Swing says It's vaccine preventable, it's treatable. And so it's almost like .… it's the cure for liver disease, liver cancer. Who's not going to take that up? …Why aren't people going to get involved if it's something that you can do so easily in relation to, … diabetes for example, HIV, and AIDS? Those are diseases that don't have a 'cure'. --- The executive director of the Asian American Theater Company, Darryl Chiang, agrees: There should be very low barriers to people actually resolving the situation and if we work together we can do a lot to stop the spread of it. If we all took action collectively, that would solve the problem pretty easily. Many respondents indicated it has been easier to destigmatize among Asian Americans born or raised in the USA, as opposed to those who are first generation adult immigrants. Although preexisting barriers and stigma affect many Asian immigrants, respondents suggested that through SFHBF, US-born Asian American were better able to communicate across generations the importance of addressing hepatitis B. Swing sees global implications, suggesting "that Asian American can be the conduit, the link of providing that knowledge to other Asians. …And I think Asian Americans doing work in hepatitis B can definitely translate that across overseas to places like China." --- Discussion This key informant study illustrates how SFHBF used multiple approaches to destigmatize hepatitis B. Although there is little information on Asian Americans and health communication practices, according to Hinyard and Kreuter [15], in order for health communication to be culturally tailored and effective in racial/ethnic minority communities, it must include packaging the campaign, demonstrating the importance of the illness/disease to the community, and delivering the messages in culturally meaningful ways that appeal to the community [14]. The SFHBF Campaign incorporated many of these components including packaging and evidence that would appeal to Asian Americans. SFHBF ran the first major US market ad campaign featuring all Asian American models. Ethnic and general media campaigns were closely coordinated in five languages, but primarily in English and primarily through general market outlets. By highlighting that one in ten Asian Americans were infected by hep B, this campaign demonstrated that this was indeed a community issue. Moreover, images were presented in Asian American social and cultural contexts. SFHBF outreach focused on developing multilevel strategies for reaching different generational levels as appropriate linguistically and culturally, but with messages that could be discussed and shared within the family unit. The campaign also used narrative as a powerful form of health communication to reach Asian Americans. Respected leaders such as State Assemblywoman Ma and widely known local broadcaster Wang both provided public faces and offered personal narratives to talk about hepatitis B. Ma and Wang shared their fears and concerns and talked about the steps they took to protect their own their families' health. Further, they each encouraged Asian American community members to become hep B heroes. Stories of everyday community members were also emphasized through a speaker's bureau and by featuring everyday community members in ads like the "B a Hero" campaign. The "B a Hero" slogan emphasized that ordinary members of the Asian American community can make a difference in ending hepatitis B. The message jump-started a community-wide discourse on hepatitis B, while the next campaign, "1 in 10: Which One Deserves to Die?" was designed to provoke action by featuring groups of ten smiling Asian Americans-pageant queens, family reunion photos, etc.-superimposed with the bold question, "Which One Deserves to Die?" The campaign also informs the public that, starkly contrasting with the infection rate of one in 1,000 in the general population, one in ten Asian Americans is chronically infected with hepatitis B. Respondents point to this evolutionary aspect of SFHBF messaging as part of its effectiveness. SFHBF continually updated health communication practices and messages to reflect the dynamic and diverse nature of the Asian American community and to reflect how the community processes information. Key messages that resonated with Asian Americans included reframing of the hepatitis B narrative away from the stigma of "bad behavior," to the normalization of hepatitis B discourse with public stories from high profile and ordinary people talking about their hepatitis B status, and finally, the idea that the Asian American community working collectively could effect an end to the scourge of hepatitis B and related liver cancer. --- Implications This study illustrates the importance of utilizing both Asian American opinion leaders and everyday community members. The findings also illustrate the importance of how messages around health promotion are conveyed. For example, respected leaders and local celebrities serve as models by sharing their experiences and also by demonstrating to the community that action can be taken to prevent hepatitis B infection. These role models play a key factor in normalizing and destigmatizing discussions within the community on the importance of testing, vaccination, and follow-up care. Other racial/ethnic minority communities such as African-Americans have used similar approaches [16]. In 1991, when Magic Johnson came out about being HIV positive, he provided a way for many African-Americans to talk about HIV [16]. The SFHBF Campaign may provide a new model for community organizing around health care issues in the Asian American community. A constellation of partnerships created one of the first health movements focused on Asian Americans in the nation. Ultimately, this social movement has changed how hepatitis B is perceived by Asian Americans. The key elements include destigmatizing, utilizing public disclosures, and motivating action by emphasizing solutions. This campaign has implications for various racial/ethnic communities who are working to destigmatize illnesses and diseases. Moreover, it has implications for the Asian American community working on difficult health issues or concerns that are still heavily stigmatized including cancer and mental illness.

Compared to any other racial/ethnic group, Asian Americans represent a population disproportionately affected by hepatitis B virus (HBV) infection, a leading cause of liver cancer. Since 2007, the San Francisco Hep B Free (SFHBF) Campaign has been actively creating awareness and education on the importance of screening, testing, and vaccination of HBV among Asian Americans. In order to understand what messages resonated with Asian Americans in San Francisco, key informant interviews with 23 (n=23) individuals involved in community outreach were conducted. A key finding was the ability of the SFHBF campaign to utilize unique health communication strategies to break the silence and normalize discussions of HBV. In addition, the campaign's approach to using public disclosures and motivating action by emphasizing solutions towards ending HBV proved to resonate with Asian Americans. The findings and lessons learned have implications for not only HBV but other stigmatized health issues in the Asian American community.

One of the most dramatic changes affecting the American family over the past 50 years has been the rise of premarital cohabitation. Interest in how premarital cohabitation affects the individuals in these unions and the quality of the marriages they form has motivated research on the topic since at least the 1970s . Since then, cohabitation prior to marriage has become normative, with more than half of all current marriages preceded by cohabitation . A major reason for social scientific interest in cohabitation and marriage is because how and why individuals enter and exit romantic relationships have important implications for individuals and society writ large. For individuals, the quality and stability of romantic unions have been tied to adult physical and mental health , and social, psychological and academic outcomes for children . Because of this, marriage and cohabitation are contested areas of cultural debate , largely because welfare and tax policies can encourage or discourage one form of relationship over the other . For instance, because many cohabiting relationships involve children, implications of cohabitation for the stability and quality of a future relationship likely also have repercussions on the well-being of the partners' offspring . Thus, as cohabitation becomes prevalent, any benefits or detriments associated with cohabitation may be realized by an increasing proportion of the population, with both individual and societal implications . Scholarly interest in the relationship between premarital cohabitation and marital outcomes has focused on differences in both marital quality and marital instability between cohabitors and noncohabitors, with results generally supporting the proposition that, on average, cohabitors tend to report poorer marital quality and experience greater marital instability than those who move directly into marriage . However, the true effect of cohabitation on marital quality, to the extent that it exists, cannot be reliably estimated simply by including a variable for whether an individual has cohabited or not prior to marriage. This is because the observed relationship between cohabitation and marital outcomes comprises at least two parts: selection into and the experience of cohabitation. Consequently, scholars have proposed two theories focusing on each of these aspects of cohabitation. The first, which we term the social selection perspective, posits that people who cohabit are different from people who enter directly into marriage, and it is these differences between the two groups that are responsible for the negative relationship outcomes that cohabitors experience. In contrast, the second theory refers to the experience of cohabitation. Scholars highlighting this perspective suggest that there may be something about cohabitation itself that increases the risk of marital disruption beyond one's characteristics at the beginning of the union. To date, available research has provided conflicting evidence regarding why those who enter a cohabiting relationship prior to marrying report lower marital quality, on average, than those who enter directly into marriage. As a result, researchers have struggled to come to firm conclusions regarding the causal processes behind the differential marital quality among those who married directly and those who cohabited first. This difficulty exists because most studies on the topic have not been able to simultaneously test both theories. In what follows, we describe both the social selection into and experience of cohabitation and articulate three problems that may be partly responsible for the inconsistent findings on the selection and experience perspectives in the literature. We then propose, develop, and test a model for exploring the effect of both the social selection and the experience perspectives in the same model to compare the marital quality of women who cohabited with women who entered directly into marriage. This improves our ability to make claims regarding causal processes because we pay particular attention to the time ordering of variables, leading to less biased and more efficient estimates of both the social selection and experience perspectives. --- Two Perspectives on Premarital Cohabitation and Marital Quality The first perspective, social selection, suggests unmeasured differences between cohabitors and noncohabitors govern the decision to cohabit and future marital quality. Unmeasured differences like nontraditional values, attitudes or poor relationship skills may increase the risk of marital instability, poor marital quality, and cohabitation. Other studies have identified those who cohabit tend to be less religious , advocate greater gender equality , report lower levels of education and come from less stable family backgrounds , potentially resulting in more pessimistic views of the stability of intimate relationships. Consequently, these individuals may also be more accepting of relationship dissolution than those who do not cohabit. Such beliefs could result in poor-quality marriages. Additionally, selection mechanisms regarding homogamy may be at play. Mate selection studies find that, compared with cohabiting couples, married couples are more homogamous in age, religion and race/ethnicity. Although sig-nificant, any marital issues arising from these differences appear to be modest and declining over time . The second theory refers to the experience of cohabitation. Scholars highlighting this perspective suggest there may be something about cohabitation itself that increases the risk of marital disruption. There may be aspects of cohabitation that change individual's attitudes, beliefs or behaviors that are also associated with poorer marital outcomes. Although this perspective has received less attention, it has received some support. For instance, Axinn and Thornton found individuals who cohabited expressed more favorable attitudes toward divorce after cohabitation, net of prior divorce attitudes. Thus, because cohabiting relationships tend to be relatively short-lived, individuals who experience cohabitation may be more likely to embrace the temporary nature of romantic relationships. For example, awareness of relationship impermanency may reduce investment, potentially resulting in a poorer quality marriage and a lower threshold for dissolution . Similarly, there is evidence that people are less religious after cohabitation . Because attendance at religious services has been tied to greater marital quality and stability , reduced religious activity may translate into decreased marital quality . Cohabitors have also been found to espouse less traditional attitudes than noncohabitors , as well as less confidence in the relationship's future . These differences may stem largely from cohabitation's lack of institutionalization . In spite of its diffusion, cohabitation is not yet governed by strong consensual social norms and formal laws. Consequently, cohabiting couples may not receive as much social support as married couples due to disapproval of cohabiting relationships or because of uncertainty in dealing with certain social situations . Furthermore, the stress from this lack of social support may result in lower marital quality; this stress effect may amplify throughout the life course . Additionally, relationship "inertia" may lead some couples to "slide into" cohabitation rather than making an explicit decision, resulting in some suboptimal marriages, in part because of marriage-specific capital accumulated during cohabitation . Recent research also supports the experience perspective. Kamp-Dush, Cohan and Amato found even when accounting for mechanisms through which individuals select into cohabitation, cohabitors continued to report poorer marital quality and increased marital instability. --- Issues in Previous Work Previous research comparing cohabitors' and non-cohabitors' marital quality has identified two distinct possibilities, social selection and experience, for explaining why those who cohabited report lower marital quality than those who did not. However, our ability to adjudicate between perspectives is hindered by at least three difficulties involving the time metric, temporal ordering, and model specification. One problematic issue in past research has been the proper measurement of the time metric for cohabiting relationships. Previous work has often used the beginning of the marriage as the start of the time metric. While this may be intuitive , using the beginning of the marriage as the first time point can lead to ambiguous findings because of the well-established negative relationship between marital duration and marital quality . If relationship quality declines as a romantic relationship matures, one would expect premarital cohabitors, a priori, to report lower levels of marital quality at every marriage duration because they have been living together longer than those who married directly. The solution is to use the beginning of the coresidential union as the time metric, rather than the beginning of the marriage. Failure to do so confounds any effect of cohabitation with the influence of relationship duration, leading to ambiguous interpretations regarding whether findings support the social selection perspective or the experience of cohabitation proposition. Second, the temporal ordering of variables matters because a true selection effect can exist only when selection processes or mechanisms occur prior to relationship formation. Perhaps an example using educational attainment can illustrate. Much work on selection into cohabitation has found those with lower educational attainment are more likely to cohabit. However, there is little evidence individuals forgo cohabitation to pursue education. In fact, there is evidence that the pursuit of education is more compatible with cohabitation than marriage , meaning cohabitation often precedes final educational attainment. However, only current, not final, educational attainment can act as a selection factor into cohabitation.1 If postcohabitation factors are included in a model estimating the effect of premarital cohabitation on subsequent marital quality, we lose our ability to distinguish between social selection and the experience of cohabitation because such factors cannot have selected the individual into the cohabiting union. It is necessary to insure proper temporal ordering. Otherwise, one is, in essence, conflating the effect of factors selecting individuals into cohabitation with any effect the actual experience of cohabitation may have, thereby contaminating the estimate of social selection with the experience of cohabitation, and vice versa. Conclusions can also be misleading because of a third problem -the inability to include measures of both social selection into and the experience of cohabitation. Most work has been unable to directly test both theories because of the difficulty involved in specifying the model by explicitly and simultaneously incorporating both perspectives. This is largely due to the difficulty of parsing factors that act as selection mechanisms into cohabitation from factors that result from the experience of cohabitation. To deal with this, previous work has often estimated the zero-order effect of cohabitation on marital quality, and then included variables thought to influence both the likelihood of cohabitation and an individual's marital quality. If the observed negative effect of cohabitation decreases in effect size or loses significance, this is seen as evidence against the experience of cohabitation in favor of the social selection perspective. However, such conclusions could be inaccurate representations of the social processes thought to govern the relationship between cohabitation and marital quality because the two perspectives are not both represented in the model. It is also difficult to know whether the decreased effect size or lack of significance is because the relationship is spurious, per social selection, or if the newly included variables mediate the path between cohabitation and marital quality. Thus, it is not an explicit test of experience versus selection; rather researchers pursuing this line of inquiry must rely on inference and theory for support of the social selection perspective. Any conclusions drawn are tenuous because adjudication between the two theories requires the presence of both in the same statistical model. Without explicitly including the social selection perspective in the same model with a measure of the experience of cohabitation, we are limited in what we can say about why couples who cohabit prior to marriage tend to report lower levels of marital quality than those who enter directly into marriage. --- A New Model for Examining the Effect of Cohabitation on Marital Quality Figure 1 presents the proposed model for this paper. The model is comprised of two components, one for addressing how precohabitation characteristics influ-ence the likelihood of entry into premarital cohabitation and another for examining how factors that occur after the cohabitation begins affect marital quality. Precohabitation traits, including nativity and assimilation features, attributes of the family of origin, demographic and labor market characteristics, attitudes toward gender issues and family formation and religious orientation are first used to estimate the likelihood an individual will cohabit, and then postcohabitation factors such as the number of hours worked, income, educational attainment, the number and age of children in the household, length of relationship, and race-ethnicity are modeled to examine the effect of both the experience of cohabitation and social selection on marital quality. Our theoretical model addresses the three weaknesses outlined by exploiting the strengths of several statistical techniques, such as propensity score and random effects models, leading to more efficient, less biased estimates of both the selection into and experience of cohabitation perspectives. 2First, we incorporate the length of relationship as our time metric. This is important because claims regarding the relative strength of social selection or experience of cohabitation without first controlling for the length of the relationship are dubious. In our model, relationship length is allowed to span cohabitation and marriage and is modeled as a predictor of marital quality. Thus, in our model, any negative effect of either selection into or the experience of cohabitation cannot be attributed to cohabitors' lengthier coresidential unions. Second, the model distinguishes between factors that occur before and after the beginning of the cohabitation. This mitigates concerns that time-ordering problems influence the results because only factors occurring prior to entry into cohabitation affect our measure of selection and only factors that occurred after the cohabitation are allowed to affect measures of marital quality. Because we exercise great caution regarding the temporal ordering of variables, we are able to more precisely represent the social selection and experience perspectives. Thus, the results from this model will yield more accurate estimates of selection and experience than those from previous work. Third, our model allows a large number of predictors to influence social selection. Previous work examining mechanisms selecting individuals into cohabitation has been hampered because incorporating information on the individual's nativity and assimilation features, attributes of the family of origin, demographic and labor market characteristics, attitudes toward gender issues and family formation and religious orientation, as we do here, required the inclusion of each variable separately, exhausting many degrees of freedom and potentially leading to model overspecification and collinearity issues. Essentially, this model allows us to retain many of the benefits a propensity score offers but allows us to use it in a larger, causal model while using up only one degree of freedom. This approach, then, couples the advantages of statistical parsimony with the exigencies of empirical rigor. --- Measuring Marital Quality Before proceeding further, a quick note on how we measure marital quality is in order. Marriage scholars have articulated three perspectives regarding measurement of marital quality. The first perspective, marital adjustment, rooted in marital therapy, seeks to improve marital functioning by identifying factors associated with troubled and well-adjusted marriages . Scholars who embrace the marital adjustment perspective often pursue a single ordering of marriages, ranging from well-adjusted to troubled marriages. The second perspective, or global evaluation, argues partners' subjective evaluations of their union quality, reflected in global happiness or satisfaction, are the most reliable indicator of marital quality. Studies focusing solely on marital satisfaction or marital happiness can be said to be in accord with this perspective. However, each of these perspectives is limited because of conceptual and analytical weakness in implementing them. For example, because the marital adjustment perspective seeks a single ordering of marriages, it is difficult to disentangle the positive and negative dimensions of marital quality . Additionally, using marital quality to refer only to global assessments of the marriage does not allow for the measurement of behavioral and evaluative components tapping the dynamic nature of marital relations. Because of these weaknesses, we use a third approach to measure marital quality. Our approach conceptualizes and operationalizes marital quality as a multidimensional construct. Rather than attempting to delineate a single ordering of marriages or employing a single dimension, we see marital quality as a set of traits, attitudes and behaviors that together compose a reliable and valid measurement of marital quality, which serves as an umbrella term grouping distinct concepts. Researchers influenced by this perspective often tap multiple, separately measured dimensions of marital quality . By including a scale tapping happiness or satisfaction with marriage, like the subjective evaluation perspective, and by including measures of other dimensions, such as conflict and interaction, like the marital-adjustment perspective, scholars can incorporate many of the benefits gained from the marital adjustment and evaluation perspectives while mitigating several potential limitations. This paper builds on this perspective by examining the effect of premari-tal cohabitation on multiple dimensions of marital quality using nationally representative data covering nearly three decades of cohabitation and marital experiences of young women. Furthermore, the novel method we employ allows us to explicitly measure both selection into and experience of cohabitation on subsequent marital quality, something previous studies have rarely achieved. Most research examining the relationship between premarital cohabitation and subsequent marital quality has employed either a global measure of marital happiness or satisfaction or some measure of marital adjustment . In this study, we employ three separate measures of marital quality: happiness, communication and conflict. Marital happiness is the most commonly used measure of marital quality and previous research has tied pre-marital cohabitation to marital happiness . Research on premarital cohabitation has also shown couples who cohabited prior to marriage tend to have poorer marital communication and greater marital conflict compared with noncohabitors. --- Methods --- Data To examine the relative strength of the selection into and the experience of cohabitation perspectives on marital quality, we employed the nationally representative, longitudinal data available in the National Longitudinal Survey of Youth 1979 . A total of 12,685 people, born between 1957 and 1964 and aged 14-22 years when first interviewed in 1979, were interviewed annually between 1979 and 1994, and biennially thereafter, the last available wave in 2008. However, because only women's marital quality was ascertained at all available time points , we restrict our analyses to women who reported being married at some point during our observation window. We further restrict our sample to women in first marriages for whom we have information about their cohabitation history, thereby excluding those who were married at the first wave. We also exclude those who report cohabitation at the first wave because we have no information prior to 1979. This brings our final analytical sample size to 2,898 women, with 21,245 person years between 1992 and 2008. Although exploiting the repeated measures of marital quality in the NLSY79 is an improvement over prior research, the NLSY79 is also limiting. First, we are missing many "starter" marriages that began and ended prior to 1992 , although the often conflictual and unstable nature of these unions may render our estimate of cohabitation's impact on subsequent marital quality conservative. Second, the 2-year intervals between interviews exclude some short-duration marriages. Third, the extent to which the findings generalize to men is unclear, a point to which we return in the discussion section. --- Variables Table 1 displays descriptions, means, standard deviations, and ranges for all variables. Measures of marital conflict and marital communication were standardized. --- Missing Data Like most surveys, the NLSY79 has missing values. Although the amount of missing data was almost never more than 10% of the sample and usually around 3 percent, missing data can influence the coefficients and standard errors . Using Stata's ice program, we generated five datasets of values to represent the distribution of plausible values . These datasets were jointly analyzed to adjust for possible bias caused by missing data. After imputation and before analysis, the data were examined for irregularities that may have occurred during the imputation process. No meaningful variations were found in the means, standard deviations or ranges. --- Research Procedure We estimate a two-step model. First, we use propensity score matching methods to estimate the propensity someone will cohabit. Second, we use a random effects model to compare the effect of selection into and experience of premarital cohabitation on marital happiness, communication and conflict. To measure social selection, we include the propensity score estimated in the first step. Our measure of experience of cohabitation is a dummy variable for whether a person has cohabited or not. 3 We also control for the effects of time-varying covariates such as the number and age of children living in the respondent's household, the number of hours the respondent worked as well as their income and educational attainment. Because research has identified race/ethnicity and the relationship length among the most important predictors of marital quality, we include these in the second equation as well. Step 1: Estimating the Propensity Score Previous research, as noted above, has identified a plethora of mechanisms thought to influence selection into cohabitation. Simultaneous inclusion of all these variables in a single equation, however, is cumbersome and makes heavy requirements on data quality. Given the strong preference for statistical parsimony in quantitatively driven fields, a more simple approach incorporating such variables is desirable. To further our knowledge regarding the selection and experience perspectives, we use a novel way of measuring selection into cohabitation by borrowing from propensity score models . Although subject to critique , propensity scores have one very appealing feature: the propensity score itself, which, if estimated correctly, can be thought of as the latent probability of cohabiting, whether one has done so or not. 4 We use the following binary logistic regression equation to estimate the propensity to cohabit: where χ i is a vector of covariates associated with the probability of cohabiting and potential confounders in the relationship between marital quality and cohabitation. β i represents the estimated slopes associated with each covariate, and T i = 1 if individual i cohabited. This model permits the inclusion of a very large number of predictors of the propensity score, limiting the ability to model selection into cohabitation only by the richness of our data rather than the confines of our model. Decisions regarding which variables were entered into the equation predicting selection into cohabitation were carefully undertaken. Variables such as current educational attainment, parental background, age, income and hours of employment, religion and religiosity, gender beliefs, attitudes toward marriage, race, etc. were all measured prior to entry into cohabitation. For women who have not cohabited, we use values at the median age at cohabitation to estimate the propensity of cohabitation. In our second equation, we include race-ethnicity as well as all information from our time-varying covariates that occurred after the cohabitation began; these include relationship duration, the number and age of children in the household, income, education and the number of hours worked by the respondent. Functionally, propensity score models use observed covariates to estimate the latent propensity score distribution of observations in the treatment and control groups, the treatment being cohabitation. By performing significance tests across the entirety of the distribution of the propensity score, estimation of the propensity score ensures the treatment and control groups are homogenous on all observed variables. Homogeneity across treatment and control groups ensures the propensity score is a more efficient, less biased measure of selection into cohabitation than those employed in previous work because it incorporates information from a large number of mechanisms thought to influence selection into cohabitation, such as nativity and assimilation features, 5 attributes of the family of origin, demographic and labor market characteristics, attitudes toward gender issues and family formation, and religious orientation. Thus, one way we build upon previous work and advance knowledge is by including this propensity score 6 in an equation including whether one cohabited in a model predicting marital quality. Although not new to sociological studies , this method, which to our knowledge has never been used to address differences in premarital cohabitors' and directly marrieds' marital quality, enables us to simultaneously test both the social selection and the experience of cohabitation 4 Some respondents with a high estimated propensity to cohabit did not cohabit, whereas others with low propensity to cohabit did. 5 Non-Natives often hold high aspirations for marriage but may be less likely to marry and more likely to cohabit due to low socioeconomic standing . 6 Note that we do not employ propensity score matching models. perspectives and examine their independent effects on marital quality while controlling for the impact of the other. --- Step 2: Estimating the Random Effects Model The second step involved the estimation of a random effects model to ascertain the relationship between the social selection and experience perspectives of cohabitation on marital quality, as shown in equation 2. where ξ it is as follows: Thus, marital conflict, happiness and communication, respectively, are modeled as a function of an individual-level intercept and coefficients estimating the association between marital quality and selection into and the experience of cohabitation . Also included are the other covariates of marital quality, as well as an error term comprised of two components. Here, ζ j is a time-constant error component varying between individuals. ε it is a transitory error component varying both within and between individuals, representing the effects of time nested within individuals and any other error. Both errors are assumed to be independent, normally distributed, with a mean of 0. Each of these terms is represented as a random effect in the tables that follow. b stands for estimated parameters, i indexes individuals, and t marks time periods . Estimating this two-step model offers advantages beyond alleviating the three problems previously articulated. For instance, although propensity score matching methods can produce less biased and more efficient estimates of an independent variable on an outcome, such methods may be biased if a significant amount of time lapses between the measurement of the independent and dependent variables. This is because confounding variables not included in the propensity score equation may have influenced the outcome beyond the impact of the observed traits used to create the propensity score. Our model, in contrast, uses the propensity score in a larger causal model and controls for confounders potentially altering our estimate of the relationship between cohabitation and marital quality. Another advantage of the random effects model is the ability to employ a time-varying dependent variable. Because marital quality is known to change across time, the ability to model this is imperative to obtaining reliable estimates. Although other estimation techniques, such as fixed effects, offer the advantage of dealing with unobserved heterogeneity, our research question is focused on differences between individuals who have cohabited and those who entered directly into marriage. Because our two variables of primary interest, selection into and experience of cohabitation, do not vary over time, we cannot employ these methods. Thus, this model provides an estimate of both social selection into and the experience of cohabitation that controls for the influence of the other perspective. Employing random effects models allows us to use longitudinal panel data to examine the question. Our use of the National Longitudinal Survey of Youth 1979 cohort of married women allows us to do so with a nationally representative sample. --- Results We begin by presenting the zero-order coefficients for cohabitation on each measure of marital quality . In line with previous research, the association between cohabitation and marital quality is negative on all measures of marital quality. For marital conflict and marital happiness, the association is statistically significant. On average, individuals who cohabited report lower marital happiness and greater marital conflict than those who married directly.Thirty-seven percent of our sample reported cohabiting with their spouse prior to marriage, similar to the 41 percent reported elsewhere for women in the same time period . Due to space constraints, we forgo discussion of the estimation of the propensity score . Note the equation balanced when including all variables specified in Table 1 and fit the data well, and we exclude observations outside the region of common support in the remaining analyses. We then moved to examine whether the observed negative association between marital quality and cohabitation is driven more by social selection or by the experience of cohabitation. Table 3 presents the results when both selection into and the experience of cohabitation are included in the model, along with time-varying controls for relationship length, income, education, the number and age of children in the household, the number of hours worked in the past year and race-ethnicity. This first column of Table 3 presents the results for marital conflict. We find those who reported experiencing premarital cohabitation on average tend to report higher marital conflict as well. The difference between those who did and did not cohabit is about onetenth of a standard deviation, indicative of a substantively small effect. We find no evidence that selection into cohabitation is associated with marital conflict, net of the experience of cohabitation. The length of relationship is negatively related to marital conflict. In terms of the other predictors, we find women's income and education are both negatively associated with marital conflict, whereas the presence of children and longer work hours are associated with higher marital conflict. We also find evidence of racial differences in marital conflict, with black and Hispanic women reporting significantly higher levels of conflict than their counterparts. For marital happiness, we find a somewhat different pattern. Here, the experience of cohabitation is again significantly and negatively related to happiness, with cohabitors reporting somewhat lower happiness than those who married directly. In contrast to conflict, however, selection into cohabitation here exerts a significant negative effect. A one-unit increase in the probability of cohabiting is associated with more than one-tenth of a point drop in marital happiness, which is nearly three times larger than the comparable effect size of experience. Length of relationship is negatively associated with marital happiness, as is the number of older children in the home. We again find evidence of differences in race-ethnicity, with both black and Hispanic women reporting lower marital quality than the reference group of white and Asian women. In terms of marital communication, we again find the experience of cohabitation appears to exert a negative influence on marital quality. Women who experienced premarital cohabitation report less frequent communication, with an average difference of .06 standard deviations. Similar to conflict, we find no evidence that selection into cohabitation influences marital quality. In terms of the covariates, we find the same robust pattern as in the other models, with the length of the relationship, the number of hours worked and raceethnicity negatively associated with marital communication, whereas a respondent's educational attainment appears to be positively related to communication. The absence of children in the household was associated with greater marital communication. To examine model fit, we employed two information criteria, the Akaike information criterion and Bayesian information criterion , and deviance-based hypothesis tests . Because we use the same set of independent variables, we can use the AIC and BIC to compare the non-nested models predicting marital conflict, happiness and communication, although evidence of differences should be viewed as suggestive rather than conclusive. Our model for marital happiness fits the data better than our models for either marital conflict or marital communication. This is not surprising in light of the influence of selection on happiness; we do not observe the same effect of selection for the other two outcomes. Deviance-based hypothesis tests also confirmed the results. While the addition of the experience of cohabitation to the model improves model fit for all outcomes, the inclusion of selection improves model fit only for marital happiness. The tests in model D attest to this, demonstrating that while experience improves model fit net of the influence of selection for all three outcomes, only the controlled test of selection approached significance. Not surprisingly, the inclusion of our covariates significantly improves the fit of the model to the observed data . However, any claims regarding causality between premarital cohabitation and marital quality must first deal with two problems. We addressed each of these in subsequent analyses . First, the propensity score, our measure of selection into cohabitation, was derived by estimating a logit model where the outcome was a dummy variable with cohabitors coded as 1. Hence, our selection measure is the predicted values from an equation predicting the experience of cohabitation . One would therefore expect the two to be correlated. Further, including the ŷ's and y's in the same equation, as we do in the second step of our model, could be problematic because the variables share similar information, leading to biased, inefficient and unstable estimates. The solution is to make our measures of social selection and experience of cohabitation orthogonal, so the two are uncorrelated = 0) in Equation 2. We did this by saving the propensity score from the original logit equation and the residuals. Because the residuals and the propensity score are, by definition, not correlated, the estimates are free of any bias caused by correlation between our measures of selection into and the experience of cohabitation. Because we took care to ensure proper temporal ordering, the propensity score represents that part of the equation associated with the likelihood of premarital cohabitation , and the residuals represent everything not associated with the likelihood of cohabitation -the experience of cohabitation . We then re-estimated the final random effects model, replacing our dummy variable measure of experience with the residuals. We found the same pattern of results, suggesting our results are not driven by collinearity between our measures of selection into and experience of cohabitation. The experience of cohabitation was related to poorer marital happiness and communication and higher conflict. Again, selection appeared to influence only marital happiness. The second issue deals with bias due to unobserved heterogeneity and omitted variables, which occurs when factors related to cohabitation and marital quality are not controlled in the models. If a variable exerts a significant influence on both, our estimates of the selection into and experience of cohabitation perspectives will be incorrect. To address this possibility, we employed bivariate probit models to simultaneously model entry into cohabitation and marital quality. We first dichotomized our marital quality measures and then included all time-invariant covariates from Table 1 in the equations. We then examined the correlation between the error terms for the two equations predicting entry into cohabitation and subsequent marital quality. A significant correlation parameter indicates the two equations are not independent , which in turn suggests the existence of unobserved factors impacting both outcomes. Results suggest that unobservables likely influence both cohabitation and marital conflict , but less so for marital happiness and marital communication . --- Discussion Previous research has established a relationship between premarital cohabitation and subsequent marital outcomes, with cohabitors reporting, on average, lower marital quality and greater marital instability. However, the mechanisms driving the negative association between premarital cohabitation and subsequent marital quality remain unclear because prior work has been unable to simultaneously include measures of the two most prominent explanations for the relationship between cohabitation and marital quality: social selection into and the experience of cohabitation. Using data from 2,898 women from the NLSY79, we employed a novel method for concurrently examining the impact of both perspectives. By first estimating a propensity score to assess the likelihood a given individual reported premarital cohabitation with their spouse and then employing this propensity score along with a measure of the experience of cohabitation in a random effects model predicting subsequent marital quality, we find that, in line with previous research , selection mechanisms do appear to be linked to both the likelihood of cohabitation and poorer marital happiness, the most common measure of marital quality in the literature. However, we find no evidence the selection mechanisms operate similarly for marital communication or marital conflict. In contrast, the results revealed a robust, negative effect of the experience of cohabitation. The experience of cohabitation itself, net of selection mechanisms, was found to be related to greater marital conflict, lower marital happiness and less frequent marital communication. However, because of heterogeneity among cohabitors, it seems likely cohabitation is negatively associated with marital quality for some individuals, whereas for others it may have a null or even positive effect; this possibility of offsetting effects is likely responsible for the modest results observed. We must therefore be quick to point out the observed differences in marital quality between premarital cohabitors and those who entered directly into marriage are not striking in magnitude. In no case would the aggregated impact of the social selection and experience perspectives amount to more than one-fifth of a standard deviation. In fact, the effect is often smaller. The experience of cohabitation, for example, appears to decrease marital happiness by .03 points on a 3 point scale. Although the effect size is larger for marital conflict, where cohabitors report differences of one-tenth of a standard deviation compared to those who did not cohabit, net of the impact of social selection, the substantive importance of such a difference is modest. Further, these effects may be declining in degree over time . Yet the wealth of factors associated with the decision to cohabit and subsequent marital quality may explain the moderate effect sizes we observe. Future research would do well to pursue the circumstances under which premarital cohabitation is likely to have the largest effect. Although the average influence of premarital cohabitation on a couple's ensuing marital quality may be modest, there are likely to be circumstances under which the impact of premarital cohabitation on subsequent marital outcomes is larger. Tach and Halpern-Meekin and Brown and Booth have already provided excellent starting points for this line of thought, indicating the effect premarital cohabitation can have on marital outcomes depending on whether a couple experiences a premarital birth or plans to marry. The approach we take here is not without limitations. First, because our sample includes only women, our findings may not be generalizable to men. Despite evidence women report lower overall marital quality than men , evidence of gender differences in how cohabitation influences subsequent trajectories of marital quality has not been forthcoming. In fact, some research has found men and women experience marital change similarly . However, theoretical reasons, currently untested, suggest the relationship between cohabitation and marital quality may be stronger for women than men. If cohabiting women are more likely than men to prioritize financial independence, it is possible that egalitarian women may be more dissatisfied with a more traditional subsequent marriage . Second, we do not have full relationship histories for the respondents or their spouses, meaning serial cohabitation could be partly responsible for the observed associations. Third, the threat of bias due to unobserved heterogeneity and omitted variable bias remains ever present. For example, because we do not have information regarding motivations to cohabit, we cannot identify unions resulting from engagements. Because cohabiting unions formed because of an engagement are likely to be a prelude to marriage rather than a replacement for it, cohabitations formed after the couple is engaged may experience better outcomes than those with no plans to marry . Fourth, we cannot measure the influence of cohabitation's lack of institutionalization or attitudes toward divorce. Fifth, the measurement of the length of the relationship is problematized by the difficulty in defining when cohabitations begin and end . Sixth, because the NLSY79 contains data only on the late baby boomers, we are unable to address how the changing nature of cohabitation may influence our results. It is conceivable, and perhaps likely, that the negative association between premarital cohabitation and subsequent marital quality has attenuated, as is the case for marital instability . However, the evidence thus far has not substantiated this proposition. Despite these limitations, this paper advances the literature in several ways. Specifically, the paper makes three methodological contributions. First, the two-step process incorporates more information from the data into the model. Propensity score models allow for the inclusion of a large number of covariates in the equation predicting entry into cohabitation. We therefore obtain a more efficient and less biased estimator of selection into cohabitation than previous work, which in turn allows us to model the impact of factors known to affect selection into cohabitation on marital quality without consuming the numerous degrees of freedom necessary for including them in the model predicting marital quality. This approach couples the advantages of statistical parsimony with the exigencies of empirical rigor. Second, because the model explicitly distinguishes between factors occurring before and after entry into cohabitation, time-order issues in previous work are clarified. Because we exercise great caution regarding temporal ordering, only allowing factors that occurred prior to entry into cohabitation to influ-ence our measure of selection, we are able to more precisely represent the social selection and experience of cohabitation perspectives. Thus, the results derived from this model will yield new information about the estimates of the effect of each perspective. Third, our use of a random effects model enables us to use timevarying variables on both sides of the equation. Because our dependent variables of marital conflict, marital happiness and marital communication are known to change over time , the ability to model shifting components of marital quality and its covariates is essential to ensuring reliable estimates. We also make three theoretical contributions. The first of these is the ability to weigh the relative effects of the two most prominent perspectives vis-à-vis the previously observed negative association between premarital cohabitation and marital quality, namely, social selection into and the experience of cohabitation. Because of the methodological procedures implemented, we were able to test both the social selection and experience of cohabitation perspectives in the same model, something previous work on the topic has seldom been able to do. Our results suggest not only that selection mechanisms negatively influence relationship happiness, as previous research has found , but also provide evidence of a robust effect of the experience of cohabitation. Thus, in overcoming statistical difficulties involved in properly specifying a model including both social selection into and the experience of premarital cohabitation, we found the inclusion of both variables in the model provided evidence for both perspectives, with social selection associated negatively with marital happiness, and the experience of cohabitation negatively associated with marital happiness and marital communication, and positively linked to marital conflict. Second, we extend prior literature showing marital quality covaries with marital duration to demonstrate that marital quality is also influenced by the length of the relationship, whether that relationship began as a cohabitation or not. The idea that premarital factors set the stage for subsequent marital quality supports past work by Huston, Niehuis and Smith , and suggests it is length in coresidential unions, regardless of type, that influences the quality of the those unions. Third, we employ three measures of marital quality, thereby enabling us to speak of marital quality as a multidimensional construct rather than focusing exclusively on marital happiness or marital satisfaction. Although assessments of relationship happiness or satisfaction are certainly important when tapping the quality of romantic unions, the emphasis on marital happiness as the defin-ing feature of a high-quality relationship is likely the result of the cultural value placed on self-fulfillment and self-expression. Different dimensions of marital quality are likely to exhibit different patterns of covariance with time and may have unique sets of correlates . Our findings support this conclusion by showing that although selection factors may influence women's marital happiness, we find no evidence such mechanisms operate to negatively influence marital commitment and marital communication. 7 We encourage the exploration of other dimensions of marital quality, such as divorce proneness, marital interaction, marital problems or perhaps measures of the amount of validation and fulfillment individuals seek and gain from their marriages, because it remains unclear whether the processes governing selection into cohabitation and the experience of cohabitation operate similarly or differently as the ones observed here. Certainly, though, the results presented for the three measures of marital quality used here provide evidence that both social selection into and the experience of cohabitation itself are associated with lower levels of marital quality. On average, women who report having cohabited with their future spouses prior to marriage report higher conflict and lower happiness and communication than women who moved directly into marriage. These effects, however, are but average effects across a very heterogeneous population. Future research should attempt to articulate the conditions under which premarital cohabitation is likely to prove most influential over the life course. Doing so will allow us a better understanding of 7 Bivariate probit analyses suggested the presence of unobserved heterogeneity in the process that governs the decision to cohabit and subsequent marital conflict. The evidence was considerably weaker for communication and conflict. the nuanced and complex pathways between union formation, family structure and marital outcomes.

Using data from 2,898 women from the National Longitudinal Survey of Youth-1979, we employ a novel method to examine two perspectives, social selection and the experience of cohabitation, commonly used to explain the negative relationship outcomes cohabiting women report. Results reveal cohabitation is negatively related to marital happiness and communication and positively related to conflict. As in previous research, selection mechanisms appear to increase the odds of cohabitation while decreasing marital happiness. A closer examination of the problem also reveals a negative effect of the experience of cohabitation. This paper's primary contributions are the ability to model selection and experience in the same model and evidence of a robust effect of cohabitation on marital quality. These results underscore the complex pathways between union formation, family structure and marital outcomes.

regulation, the pathways to strong regulatory development in these children are not well understood, and significant heterogeneity is observed in their outcomes . The lasting effects of exposure to early adversity may extend beyond the effects of discrete CM acts and result from more subtle forms of interpersonal stress in the form of parenting behaviors that are controlling, low in warmth, and/or that thwart children's expression of age-appropriate autonomy , none of which are classified by child welfare agencies. Evidence from two generational studies indicates that parenting characterized by warm guidance and support for children's age-appropriate autonomy is central to the development and internalization of children's capacities to regulate their affect, attention, physiology, and behavior. For example, early autonomy-supportive parenting appears to be a key to the development of executive functioning, such as working memory, impulse control, and set shifting , and the regulatory capacities that underlie successful adjustment and performance in school settings , over and above other factors, such as maternal education, child early general cognitive skills, and child temperament . Conversely, harsh and rigid parental control thwarts children's developing capacities for autonomy-in-connection and is related to poorer task performance , poor inhibitory control , altered physiological regulation , and less autonomous self-regulated behavior . Meta-analysis has shown that CM parents are less warm toward their children; engage in more harsh, aversive control; are less supportive of their children's autonomous strivings; and tend to view their children as hostile and threatening . Because more than 80% of child physical abuse and neglect is perpetrated by parents and modest, yet significant, continuity in CM perpetration exists across generations , multigenerational paradigms that identify factors that predict children's self-regulatory outcomes may provide insight into the mechanisms underlying continuities and discontinuities in CM across generations of a family and help identify intervention targets that are most responsive to environmental influence. In our study, we sought to determine whether aspects of the Generation 1 -Generation 2 relationship between a mother and her own mother influence biomarkers of Generation 3 children's self-regulation. Specifically, we examined the relationship between maternal mental representations of women's G1-G2 autonomous and affiliative childhood experiences with their own mothers and autonomic physiology in the next generation. --- Warm Autonomy-Supportive Parenting and Child Self-Regulation An individual's active striving for self-organization and the self-regulatory structures of the mind are believed to be stabilizing determinants of both psychological and neural development . These homeostatic forces may help account for the substantial variability in the outcomes of maltreated children. Developmental psychopathology provides a useful framework for understanding self-regulatory development in risk contexts by focusing on the role of experience in shaping developmental biomarkers of self-regulation outcomes. As a specific risk context, CM is rooted in the dayto-day interactions between parents and children and lies at the extreme end of the continuum of parenting at risk. As such, the relational context of CM is as important as specific CM acts for understanding the impact of maltreatment on children's developing self-regulation . Convergent theoretical models, each of which emphasizes the relational context underpinning the development of children's regulatory capacity, suggest that parental support for the development of meaningful, reciprocal relationships and a positive, autonomous sense of self are both necessary for adaptive child self-regulation in the face of environmental challenge. For example, in his polyvagal theory, Porges offers a neurobiological model of how safe, supportive, social caregiving systems function to support the development of strong parasympathetic control of heart rate . Attachment theory and family systems theory evoke the concepts of attachment, exploration, and differentiation of self, respectively, to describe processes through which multigenerational family experiences shape children's developing self-regulation. Though diverse in their focus, these approaches show remarkable theoretical and empirical convergence with two-polarity theories of development ) that identify support for autonomy and relatedness as orthogonal axes of relational experience that shape personality across the life span. According to attachment theory , the presence of a secure attachment relationship with one's primary caregiver in early childhood serves as a "secure base" that enables and supports exploration and hence scaffolds the development of children's self-regulation skills. Attachment and other developmental theories suggest that this scaffolding occurs, in part, as children internalize important regulatory aspects of their caregiving environment, which in turn shapes the quality of their relationships outside of the family. Care-giving characterized by CM appears to have a deleterious impact on young children's representations of themselves and others , the latter of which has been associated with indices of poor self-regulation, including emotion dysregulation, aggression, and peer rejection . CM-related differences in children's narrative representations of their caregiving environment may help account for the heterogeneity in CM outcomes, in that negative or conflictual representations appear to partially mediate the relationship between experiences of early maltreatment and poor outcomes, including peer rejection and behavior problems . Conversely, positive/coherent representations have been associated with prosocial behavior and peer preference , suggesting that how CM-exposed children internalize their relationship environment may also play a protective role in buffering them from the effects of abuse and neglect. According to family systems theory , differentiation of self refers to the capacity of a family system and its members to manage emotional reactivity and allow for both intimacy and autonomy in relationships. Parents with higher differentiation of self are less emotionally reactive, better able to regulate emotion, think clearly under stress, more capable of remaining connected, and as such, are thought to promote/support children's developing capacity for self-regulation . Adults at risk for perpetrating CM score lower on a measure of differentiation, relative to low-risk adults . Of particular relevance to our understanding of developing self-regulation is Bowen's proposition that differentiation of self operates on both autonomic physiological and behavioral levels. Consistent with Bowen's assertions, countless studies have shown that self-regulation of emotion and behavior show predictable neurophysiological substrates . --- RSA as an Indicator of Child Regulatory Capacity One physiological marker of children's autonomic reactivity and regulatory development is RSA. RSA is a measure of the change in oscillatory dynamics of the heart across the respiration cycle and is considered to be a measure of the parasympathetic nervous system's influence on cardiac function in response to changing environmental demands . Parasympathetic control of heart rate, indexed by RSA, enables rapid regulation of emotional states in social contexts and thus is of particular interest for understanding how individual differences in regulation may result from variations in parent-child processes and broader multigenerational family system functioning. Resting RSA levels reflect the extent of an individual's regulatory capacity ). Higher levels of resting RSA reflect greater parasympathetic influence and are associated with greater attentional control and regulatory capacity . In contrast, lower resting RSA is associated with negative emotional states and a range of psychopathologies and is thought to reflect a general risk for emotional dysregulation . Research examining RSA levels in the context of challenge shows that RSA levels at rest and in response to challenge offer important information about an individual's capacity for physiological regulation . Decreases in RSA mark withdrawal of parasympathetic influence, leading to heart rate acceleration that supports mobilization and engagement. Increases in RSA mark increased parasympathetic influence , which promotes calm behavioral states, self-soothing, and social engagement . A number of findings have documented RSA increases during positive social engagement , during social self-regulation of emotion with strangers , and during family interactions . Among preschool children exposed to significant early adversity, high vagal tone and vagal augmentation are associated with greater self-regulation and fewer behavioral problems ). A recent metaanalysis of 44 studies documented significant relationships between RSA levels and children's adaptive functioning . --- Parenting Quality and Child Biology In humans, the powerful two-generational influence of parenting on offspring biology is well documented. In line with Bowen's propositions regarding the autonomic substrates of differentiation, more sensitive, skillful, autonomy-supportive parenting is associated with higher resting vagal tone in children . Of particular relevance to child self-regulation, research has demonstrated the impact of low-responsive, neglectful, or abusive parental care on children's structural brain development and stress reactivity, including the responsivity of corticolimbic circuits involved in threat processing , greater right frontal electroencephalographic asymmetry , and altered parasympathetic tone . In the context of proximate early adversity , such increased stress reactivity may be adaptive insofar as it facilitates the swift detection of environmental threat, such as expressions of anger . However, the cost of these adaptations may be high for maltreated children, as CM exposure is associated with adverse outcomes across behavioral and neurobiological domains . By contrast, supportive parenting in early childhood strongly predicts favorable indices of limbic brain development, such as larger hippocampal volume and smaller amygdala volume , biobehavioral recovery from exposure to early neglect , brain electrical patterns consistent with positive emotionality and approachoriented behavior , and vagal indices of child self-regulation . With respect to the latter, both CM exposure and the quality of maternal responses to children's prosocial autonomy have been independently associated with parasympathetic tone in preschool-age children. For example, Skowron et al. found that during a challenge task, children whose autonomous ideas and actions were more often met with maternal harsh control and criticism during parent-child interactions showed lower parasympathetic activity . Conversely, children whose autonomous bids were met with maternal affirmation showed stronger parasympathetic tone . Taken together, these findings indicate that in two-generational contexts, direct experiences of autonomy in childhood with warm, autonomy-supportive parenting relate to physiological indices of child self-regulation, including RSA. --- Multigenerational Links Between G1-G2 Experience and G3 Regulatory Capacity Beyond the direct associations between G2 parenting and G3 children's functioning, ongoing research conducted primarily with rodents and nonhuman primates is documenting links between biology and experience across three generations of families. In other words, a parent's own early caregiving experiences influence not only their own G2 biology and behavior but also the biology in their G3 offspring, particularly systems implicated in offspring self-regulation. In this domain, research indicates that variations in maternal care form the basis for individual differences in offspring stress reactivity by altering the expression of genes that regulate endocrine responses to environmental stress, brain development, and behavior . The broad impact of maternal rearing on DNA methylation in both the brain and T cells suggests that these responses to early-life adversity are both system-and genomewide and persist into adulthood . Moreover, such epigenetic modifications to the genome are transmitted across generations and appear to be reversible with environmental intervention . This suggests that in mammals, biological indices of regulatory capacity are affected, at least in part, by the quality of nurturing parental care they receive, and that variations in such care are best understood in a multigenerational context. As such, in humans, increasing attention has been paid to CM as a multigenerational family problem with biological correlates. According to systems theory, intergenerational continuities in emotional maturity and functioning also exist. Bowen asserted that levels of differentiation of self are transmitted across generations of a family, with the previous generation's level of differentiation roughly constraining the level of differentiation achieved in the next generation. Bowen observed that "all things being equal, you emerge with about the same basic level of differentiation your parents had. This is determined by the process before your birth and the situation during infancy and early childhood" . Bowen's theory asserts that levels of differentiation in one generation of a family shape levels of functioning in the next generation, and differentiation of self operates on both physiological and behavioral levels. In other words, level of differentiation is thought to remain relatively consistent across generations of a family . Therefore, it would stand to reason that behavioral parameters of differentiation of self experienced in earlier generations would correspond with autonomic parameters of differentiation in the next generation. Although no studies have examined this directly, longitudinal research suggests that G1-G2 experiences of abuse do have a deleterious impact on G3 child self-regulation . Extensive work has also documented the links among maternal attachment representations, parental responsiveness, and child attachment . However, few studies have examined the relationship between dimensions of maternal G1-G2 early caregiving experiences of warmth and autonomy support and biological indices of G3 children's regulatory capacity, such as RSA. --- Study Aims and Hypotheses In this study, we sought to examine the relationship between maltreating and nonmaltreating G2 mothers' mental representations of their childhood relationship with their G1 mother and their G3 child's autonomic physiology. Given the developmental importance of early warmth and autonomy support for children's developing self-regulation, we tested a multigenerational extension of this effect by examining the hypothesis that G2 mothers who reported higher levels of early warmth and autonomy support in their G1-G2 relationship with their own mothers would have G3 children who displayed greater parasympathetic tone at rest and in response to a variety of challenge tasks. To this end, we used both observational and self-report measures of parenting quality and electrocardiogram assessments of children and their mothers. Theorizing that associations between maternal mental representations and child autonomic physiology may be transmitted behaviorally and/or physiologically through G2 maternal factors, we examined two types of mediators: observed G2 maternal behavior and maternal parasympathetic tone . Given the abundance of animal studies documenting the intergenerational transmission of stress responsivity through caregiving behavior and human studies linking G2 parenting behavior with positive and with harsh G1 parenting , we hypothesized that the relationship between G1-G2 experiences and G3 child RSA would be partially mediated by maternal warmth and autonomy-granting behavior during parent-child interactions. Some studies have failed to find associations between mother-child resting levels of RSA , and other work has documented concordance between mother-child RSA . We predicted that during challenge, the relationship between G1-G2 caregiving experiences and G3 child RSA might be partially mediated by baseline levels of G2 maternal RSA. Further, because the degree of warmth and prosociality in mothers' narrative representations of their young children predicts individual differences in child behavior under conditions of regulatory challenge , we also investigated the potential mediating role of maternal representations of their G3 children in the relationship between G1-G2 experience and G3 autonomic physiology. Extending previous work that has documented the relationship between exposure to CM and lower RSA observed in preschool-age children , we explored the potential moderating effect of G3 children's CM exposure on the relationship between G1-G2 experience and G3 children's RSA. Reasoning that maltreated children are, by definition, exposed to increased levels of proximate interpersonal stress that itself shapes RSA, we predicted that the relationship between mental representations and child physiology would be stronger among nonmaltreated children. --- Method Participants Participants were 213 mothers and their preschool children ages 3 to 5 years . The majority of children were Caucasian , and 51.6% were female. Mothers' average age was 29.8 years . The majority of the mothers were Caucasian , 41.9% were married, 61.2% had a high school degree or less, and 71.8% reported an annual income of less than $30,000. All CM mothers in our study had Child Protective Services documentation as a perpetrator of maltreatment. Among the CM-exposed children, 22.5% had been physically abused, 66.7% had been physically neglected, and 1.8% had been emotionally maltreated, based on CPS documentation and coded using the Maltreatment Classification System . CM exposure was classified hierarchically such that neglected children may have experienced emotional maltreatment but did not have records indicating physical abuse, and physically abused children may have also experienced neglect and/or emotional abuse. Comorbidity of CM subtypes was observed in 41.7% of the CM group, a finding consistent with those of other studies . Non-CM dyads were drawn from a sociodemographically comparable sample from department of public welfare agencies and a database of birth announcements published in local newspapers, and non-CM mothers consented to verification that their family was free of CPS preventive or protective service records. CM and non-CM children did not differ on dimensions of child age, t = 1.20, p = .23, gender, χ 2 = 0.54, p = .46, or ethnicity, χ 2 = 1.49, p = .69. However, given known associations between child age and RSA, child age was included as a covariate in all analyses. --- Procedures All procedures used in this study were approved and monitored by the Office for Research Protections. Participating mothers were age 18 years or older, fluent in English, and living with their preschool-age child. A three-visit protocol completed by mother-child dyads during a 2-to 3-week period consisted of two home visits and a laboratory visit to enable assessment of autonomy, physiology, and observed parent-child interactions and to collect parent reports of child behavior. Families were paid $150 to complete the study, and were provided transportation, snacks, and small toys/gifts for participating children. Laboratory assessment-Sessions lasted approximately 2.5 hr, during which time children and their mothers completed a 5-min resting baseline while sitting together on a comfortable couch and viewing a relaxing video segment; participated in the preschool strange situation procedure and a 5-min free-play period; and completed four joint challenge tasks . In addition, children completed three individual challenge tasks alone after instructions from an experimenter . In the strange situation procedure , the child experienced a series of separations and reunions with the parent, including periods during which a stranger entered the room. This segment was immediately followed by the free-play task to facilitate recovery. At the end of the free-play period, mothers instructed children to clean up all the toys. During the train task, the child was provided with a disassembled nine-piece train puzzle and instructed to complete it using all the pieces. Children were given 3-5 min to complete the task. In the duplo task , the child was provided a model figurine and 12 disassembled blocks to construct a replica in 3-5 min. During the train and duplo tasks, mothers were asked to help their children build a model using the blocks provided and assist as they might normally but not handle any of the blocks. Next, the mother and child participated together in the wait task , an 8-min, competing-demands task. The mother was instructed to fill out a questionnaire after placing a wrapped prize on a table in view and instructing her child to open the present only after she completed her work. The child was given a broken toy to play with, and mother interacted with her child as needed while she completed her questionnaire. Following the joint tasks, children were given a snack break while their mothers completed the Stroop task. In the 5-min day/night task , the child was introduced to two sample cards and then asked to respond to a total of 16 trial cards. The card to be correctly responded to as "day" was a picture of a crescent moon and stars against a dark night sky, and the card to be correctly responded to as "night" was a picture of the sun . This Stroop-like paradigm requires the child to ignore a dominant perceptual feature of a stimulus for the sake of a subdominant feature indicating level of attentional and overall executive control. In the 4-min shapes task , the child was introduced to six picture cards, each displaying a little or a big piece of fruit, and was given the name of each . During the test phase, the child was asked to point to the little fruit on consecutive trial cards that had pictures of small fruit embedded in a large fruit . These tasks measure attentional/inhibitory control. Children then participated in the 4-min transparent box task , an individual challenge task designed to elicit frustration. The experimenter placed two toys that the child indicated as his/her favorites into a clear box, locked it, and demonstrated to the child how to open the box with a key. The experimenter then gave the child a set of keys that did not work and left the room. After 4 min, the experimenter reentered the room, told the child she had given him/her the wrong key, and opened the box, enabling the child to play with the preferred toys for several minutes. --- Measures Structural analysis of social behavior -The SASB is a circumplex model of interpersonal relations and their internal representations, based on Sullivan's interpersonal theory that has been applied cross-theoretically to test a variety of questions about interpersonal functioning, psychopathology, and psychotherapy. Both the SASB self-report Intrex questionnaires and the observational coding system were used in this study . SASB ratings-Mothers rated the quality of their early relationship with their own mothers , provided ratings of their child's current behavior , and rated their current parenting behavior toward their child by completing 16 short-form items each from the "yourself with your mother " intransitive scales and "your child at best" "your child at worst" intransitive scales. Each item is rated on a scale ranging from 0 to 100 in increments of 10, according to how well it describes the person being rated. Each set of ratings produces a single behavioral profile that comprises twodimensional scores: a summary weighted affiliation score and weighted autonomy score. Thus, G1-G2 affiliation and autonomy ratings reflected the degree of a G2 mother's experience of warmth/affiliation and autonomy, respectively, in relation with her G1 mother. Similarly, G2 mother reports of G3 child behavior reflected maternal perceptions of her child's affiliative behavior and autonomous behavior in their relationship. Higher affiliation scores indicated higher levels of warmth and less hostility, whereas higher autonomy scores indicated higher levels of maternal autonomy support or child autonomous behaviors . One-month test-retest reliability for individual cluster profiles is high at M = 0.87 . The factor structure of the SASB circumplex has been shown to conform to the two orthogonal dimensions of affiliation and autonomy . SASB coding-The SASB observational coding system was used to assess and microcode parent and child behaviors during the joint train and duplo tasks. These interactions were videotaped, transcribed verbatim, unitized, and subjected to SASB coding by teams of two to three trained coders. The process of SASB coding a unit of behavior involves three steps: determining focus, level of affiliation , and level of interdependence . Again, SASB dimensional scores were used to assess observed levels of mother and child affiliation and autonomy. Coders received 60 hr of training by experienced SASB coders, worked with practice tapes to achieve sufficient reliability prior to coding the video recordings, and were blind to families' CM status. Weighted κs calculated on a randomly selected 18% of dyads were strong at M = 0.75 . RSA-Children's cardiac physiology was monitored during the resting baseline, strange situation procedure, joint tasks , and individual tasks . Disposable pregelled Ag/AgCl electrodes were placed in a modified lead II placement on the distal end of the right clavicle, lower left rib cage chest, and the lower abdomen. Data were acquired via Mindware Technologies© ambulatory electrocardiograph MW1000A, sampled at 500 Hz, and transmitted via wireless signal to a computer equipped with data acquisition software. The majority of children provided data for at least one task and 158 mothers provided baseline RSA data. Electrocardiogram data were processed offline, and epochs were visually inspected by trained research assistants. The resulting inter-beat interval time series was subjected to a fast Fourier transformation, and power in the respiratory frequency band was derived from the spectral density function. The RSA frequency bands were set between 0.24 and 1.04 for children and between 0.12 and 0.40 for mothers. RSA values were extracted in 30-s epochs, and epochs were averaged across each task to create single scores for the baseline period , strange situation episodes , joint tasks , and the individual tasks . Mothers' resting RSA scores were examined as potential mediators. Descriptive statistics for RSA scores are presented in Table 1. Composite child RSA variables-There was considerable stability in child RSA from one task to another . Specifically, correlations between the RSA values ranged from .66 to .87 for tasks that the child performed alone, from .61 to .85 for tasks completed jointly with the parent, from .76 to .81 for strange situation episodes during which the parent was in the room, and from .72 to .82 for strange situation episodes during which the parent was absent from the room. In the interests of parsimony, we conducted confirmatory factor analysis on children's RSA data collected during the regulatory tasks to distill the data into meaningful factors. Mplus analytic software uses maximum likelihood estimation to handle missing data, such that those children who had RSA data for at least one task could be included in this analysis. Several theoretically plausible models were compared. The best fitting model was a fourfactor model. Children's RSA during tasks assessing independent self-regulation loaded on Factor 1. Factor 2 included children's RSA scores during the joint tasks completed with the parent . Factor 3 consisted of children's RSA during the "parent alone with child" phases of the strange situation , and Factor 4 included the remaining phases of the strange situation procedure , χ 2 = 194.31, p < .001, root mean square error of approximation = 0.07, comparative fit index = 0.97. Based on this model, composite RSA factor scores were computed for use in subsequent analyses. --- Statistical analyses Analyses proceeded in three major steps. First, we used partial correlations and linear multiple regression analyses, controlling for children's age, to test multigenerational associations between mothers' SASB-Intrex ratings of G1-G2 warmth/affiliation and autonomy with her own mother and her G3 child's RSA. Second, we examined leading candidates for mediation by G2 factors, including G2 maternal RSA and G2 observed parenting with her child. Third, we divided the sample by CM subtype according to the highest classified level of CM, that is, nonmaltreated, physically abused, and physically neglected, and conducted correlational analyses to provide a descriptive picture of the multigenerational transmission processes that characterize each CM subgroup. A small number of children for whom emotional abuse was the highest classified level of maltreatment were not included in this final set of post hoc analyses. --- Results --- Relation of G1-G2 interactions to G3 RSA Table 2 describes the univariate correlations, controlling for child age, between the G1-G2 SASB-Intrex scores and G3 children's RSA measured at baseline and across multiple regulatory contexts. As shown, mothers' G1-G2 autonomy scores correlated with child RSA measured across a number of the regulatory tasks, including snack delay, wait, train, and the strange situation episodes without the stranger, with similar trends noted for baseline RSA and free play. That is, mothers who reported that they were able to be autonomous in their relationships with their own mothers during childhood had children with higher RSA. There were no significant correlations between G1-G2 warmth/affiliation scores and child RSA. A multivariate regression of children's baseline RSA and all four RSA factors scores on G1-G2 autonomy confirmed patterns from the univariate correlations. Specifically, controlling for age, greater G1-G2 experience of maternal autonomy in childhood correlated with higher G3 child RSA at resting baseline , higher RSA solo scores , higher RSA joint scores , and higher RSA SSw-parent scores , although the effect was not significant for the RSA SSchallenge scores . Furthermore, the relations remained significant and of similar magnitude after covarying for household income, maternal education, and maternal depression symptoms. Overall, these findings suggest that greater childhood autonomy in the G1-G2 caregiving relationship correlated with higher G3 RSA at baseline during independent cognitive and emotional challenge tasks and during joint challenge tasks with the mother. --- Examination of potential mediators of G1-G2 intransitive autonomy to G3 RSA The next step was to determine whether G2 maternal physiology or G2 observed parenting mediated relations between G1-G2 autonomy support and G3 child RSA. As shown in Table 3, there were no significant correlations between G1-G2 affiliation or autonomy support and G2 RSA at baseline. In terms of parenting behavior, G1-G2 affiliation correlated with autonomy granting in G2, such that mothers who reported higher levels of warmth in their interactions with their own mothers showed higher levels of autonomy granting when interacting with their children . However, G1-G2 autonomy support was not significantly correlated with G2 observed parenting behavior. Table 4 shows the regression models testing maternal physiology and parenting behavior as mediators of the inter-generational effect of G1-G2 autonomy support on G3 child RSA, controlling for child age, household income, and maternal education. Mothers' resting RSA scores did not correlate with child RSA. Likewise, there was no evidence that the quality of observed parenting mediated the associations between G1-G2 autonomy and G3 child RSA. Moreover, associations between G1-G2 autonomy and G3 child RSA generally remained robust after accounting for these posited maternal mediators. Given that neither maternal physiology nor observed parenting behavior mediated the relation of G1-G2 autonomy to G3 child RSA, we examined correlations among G1-G2 autonomy, maternal representations of her child's warm affiliation and autonomy, and child behavior observed during joint interactions as alternative theoretical mechanisms that could potentially explain the link. As shown in Table 3, there were significant correlations between mothers' recalled experiences with their own mothers and their reports of their children's warmth and autonomy. Therefore, we turned to an examination of how these links might vary by maltreatment status. --- Multigenerational associations vary by maltreatment status Table 5 shows the correlations among G1-G2 interactions, maternal representations of her G3 child, and G3 child behavior during joint tasks by maltreatment group. Table 6 describes a series of regression models relating G2-G3 maternal representations of child and/or child observed warmth/affiliation and autonomy during joint activities to G3 child RSA. Significant associations for each of the maltreatment groups are summarized in Figure 3. Turning first to the non-CM dyads, higher levels of a G1-G2 mother's childhood autonomy were associated with mother perceptions of her child as more warm/affiliative and more autonomous . In addition, among non-CM children, mother perceptions of her child as more warm/affiliative were associated with higher child RSA scores, although this trend reached statistical significance for the solo RSA factor only . Within the physical abuse dyads, a significant trend was observed between G1-G2 autonomy support and mother perceptions of her child's autonomy. However, unlike the association observed in non-CM dyads, this correlation showed an inverse pattern. Specifically, in physical abuse dyads, greater G1-G2 autonomy was associated with the mother's perceptions of her G3 child as less autonomous when the child was at his/her worst. Further, maternal perceptions of her child as more autonomous and less warm/affiliative were correlated with higher RSA scores in physically abused children . In the physical neglect dyads, no associations between G1-G2 autonomy scores and maternal representations of her child emerged, nor were maternal representations related to children's RSA in this group. However, SASB-coded observations of neglected children's behavior while interacting with their mothers showed significant correlations with child RSA scores. Specifically, in the physical neglect dyads, children who behaved in more warm/affiliative ways with their mother while completing the joint interaction tasks showed lower child RSA scores . --- Discussion In this study we investigated multigenerational associations between G1-G2 mothers' early experience of warmth and autonomy in their relationships with their own mothers and their G3 children's autonomic physiological regulation. At the sample level, which included maltreating and nonmaltreating families, we found a robust association between mothers' G1-G2 experiences of childhood autonomy and G3 child RSA at rest and across diverse challenge contexts. Specifically, controlling for child age and household income, G2 mothers who recalled greater autonomy in their childhood relationships with their G1 mothers, between ages 5 and 10 years, were more likely to have preschool-age G3 children with higher RSA during quiet rest, alone while engaged in individual challenge tasks, during social exchanges with their mother in joint challenge tasks, and during the portions of the strange situation procedure when the mother was present. From a family system's perspective, these findings are consistent with Bowen's assertion that the capacity for differentiation of self may be observed in behavioral and physiological systems. They are also consistent with recent empirical work documenting the developmental importance of autonomy support for childhood selfregulation . Mothers' G1-G2 experiences of warm affiliation with their own mothers were not strongly associated with child RSA, suggesting that it is the internalization of autonomy during childhood , rather than the memory of being warmly connected with one's own mother, that predicts preschooler autonomic regulation in the next generation. In an effort to elucidate mechanisms underlying links between positive parenting experienced in one generation and indices of self-regulation in the next, we examined leading candidates for biobehavioral mediation . Contrary to our predictions, neither of these variables mediated the association between G1-G2 autonomy and G3 children's RSA. This was particularly surprising in the case of maternal behavior, because ample animal and human research suggests that parental behavior plays a key role in transmitting regulatory capacity across generations . There are several possible reasons the parenting variables examined in this study did not mediate this association. Because child stress reactivity and autonomic physiology are shaped by parenting beginning in early infancy, it is quite possible that earlier parenting behaviors may be more relevant to the link between mothers' G1-G2 childhood experiences with autonomy and preschooler vagal tone. In particular, early experiences of warm affiliation and contingent responsivity may lay the foundation for later differentiation of self, insofar as these parental behaviors help scaffold the child's ability to become increasingly autonomous with respect to his/her internal and external world. This transactional relationship between experiences of relatedness and autonomy has been described by numerous overlapping models of personality , including Blatt's ) two polarity/two configuration model, Deci and Ryan's self-determination theory, Beck's ) cognitive-behavioral model, interpersonal approaches , family systems theory , and contemporary attachment theory , all of which accord more broadly with articulations of the importance of these developmental lines within the field of developmental psychopathology. Finally, in an effort to better understand how maternal representations of G1-G2 experience relate to CM, we delineated the association between G1-G2 mothers' childhood autonomy and G3 child RSA by CM subtype and explored the role of maternal representations of her G3 child and her child's actual behavior. In the non-CM group, a positive association was observed between a G1-G2 mother's childhood experiences of autonomy and perceptions of her child as more warm/ affiliative when at his/her best and more autonomous when at his/her worst. In other words, nonmaltreating mothers who experienced greater autonomy in their childhood relationships with their own mothers saw their children as more warm/affiliative and more comfortably independent . For these mothers, there was, in turn, a positive association between seeing their children as more warm/affiliative and higher child RSA, indicating greater vagal augmentation, while their children completed the solo challenge tasks. It is notable that these associations were most significant within the regulatory context that requires maximal independent autonomic regulation and that this pattern of associations was not observed in either the physically abusive or neglectful groups. Although a significant trend was observed between G1-G2 autonomy support and mother perceptions of her child's autonomy within the physical abuse group, no significant associations between G1-G2 autonomy and maternal representations were observed. However, abusive mothers' representations of their children as more autonomous when at their worst and less affiliative at their best were correlated with greater parasympathetic tone during the solo and joint challenge tasks in physically abused children. While further work is needed to clarify the developmental significance of higher RSA for other behavioral outcomes in abused children, to the extent that higher RSA represents an index of greater regulatory capacity, these findings suggest that physically abused children whose mothers view them as less connected at best and more psychologically separate/autonomous during times when the child is at his/her worst may be less biologically impacted by their maltreating caregiver. In other words, these maternal representations of a child as less connected and more independent may serve as a protective buffer that facilitates the development of regulatory capacity in the context of a harsh interpersonal environment. For others, perhaps when this buffer is not present, other adaptations may be more salient; for example, some recent research suggests lower levels of RSA can be adaptive in the context of intrusive parenting . In the physical neglect group, no associations between G1-G2 autonomy and maternal representations of her child were observed, nor were maternal representations related to children's RSA. However, observations of neglected children's behavior while interacting with their mothers showed that neglected children who behaved in less warm/affiliative ways with their mother while completing the joint interaction tasks had higher parasympathetic tone at rest and while interacting with their mothers in the joint tasks and during the strange situation procedure. Again, to the extent to which higher RSA is an index of regulatory capacity, these findings suggest that adaptations that distance the child from a maltreating caregiver may be adaptive for autonomic function . Taken together, the findings presented here complement prior two-generational research documenting associations between mental representations of G1-G2 caregiving experiences and G2 parental behavior and extend our understanding of G3 adaptation, insofar as they highlight the importance of considering mental representations of the G1-G2 relationship when investigating the development of child self-regulation. Given the differential associations observed in non-CM and CM dyads, multigenerational representations of parent-child relationship quality and behavior may be important for understanding both the multifinality of outcomes for maltreated children and the differential mechanisms by which abuse and neglect may be transmitted across generations. --- Limitations and future directions Several limitations must be considered when interpreting these results. Because sampling of mother and child autonomic physiology, parent-child interactions, and maternal mental representations of her mother and her own child were all collected within a 2-to 3-week period, longitudinal work is needed to examine the developmental trajectory of child selfregulation as it relates to maternal representations of caregiving in previous generations. In this study, maternal representations of early G1-G2 experiences were measured retrospectively with self-report questionnaires. As such, subsequent studies with observational G1-G2 data may prove fruitful to further explore the mechanisms by which caregiving experiences are internalized and shape physiological indices of self-regulation in subsequent generations. Murray's notion of beta press is relevant here, because in this study it was not G1 autonomy-granting behavior per se that predicted child RSA in the next generation but rather G2 mothers' representations of themselves as autonomous in relation to their G1 mother. In that these data do not allow for a comparison of G1-G2 observed interactions and G2 mothers' mental representations of the quality of caregiving they received from their mother during childhood, longitudinal work that combines both observed interactions and representations is needed to elucidate the developmental origins of the representations themselves and their respective contributions to G3 autonomic physiology. Consistent with strategies chosen by researchers in other studies , we did not control for respiration rate when measuring child baseline and task RSA. In experimental paradigms with a variable activity level, respiration rate may represent a physiological confound. However, the consistency of our finding across tasks with very different demand characteristics and a range of activity levels suggests that the association of G1-G2 experiences of autonomy and G3 child RSA is not likely an artifact of respiration rate. Furthermore, additional physiological markers of mother and child self-regulation were not considered in this study and are needed to further elucidate the relationship between maternal representations and child autonomic response to task demands in high-risk samples, such as those characterized by poverty and CM. Likewise, future work is needed to elucidate mechanisms by which representations of childhood autonomy play a role in transmitting regulatory capacity across generations and to explore the significance of these findings as they relate to other multimodal studies investigating possible correlates of physiological regulation to psychosocial stress. Finally, CM children with a documented history of sexual abuse were excluded from the study, so the significance of the findings for this population remains entirely unknown and should be considered in future studies. Despite these limitations, the results presented here provide preliminary evidence that mental representations of one's ability to be autonomous in relation to one's primary caregiver during early childhood have important implications for children's regulatory function in the next generation. In particular, these representations and other self-regulatory structures of the mind may serve homeostatic forces in complex nonlinear developmental systems, such as those described by Cicchetti and Tucker , which help account for the substantial variability in the outcomes of maltreated children. As such, these findings may have important implications for intervention. Parents with a documented history of maltreating their child and individuals parenting in the context of increased demographic risk , such as the mothers in this study, represent two highneeds groups with limited resources. Although effective interventions for CM exist , historically, CM has been highly resistant to intervention . Hence, a better understanding of the intergenerational processes that confer increased risk for poor selfregulation from one generation to the next may help identify new intervention targets for atrisk families and help elucidate the mechanisms by which effective interventions successfully interrupt the transmission of altered stress physiology from one generation to the next. Two-generation programs that facilitate autonomysupportive parenting may prove to be particularly powerful for atrisk families. Structural analysis of social behavior simplified cluster model. The affiliation axis is the xaxis and the interdependence axis is the y-axis. Labels in bold describe prototypical parenting behaviors directed toward another person and are the focus in this study. Underscored labels describe prototypically childlike actions in response to the other . Reprinted from Interpersonal Diagnosis and Treatment of Personality Disorders , by L. S. Benjamin, 1996, New York: Guilford ---

Despite burgeoning evidence linking early exposure to child maltreatment (CM) to deficits in selfregulation, the pathways to strong regulatory development in these children are not well understood, and significant heterogeneity is observed in their outcomes. Experiences of autonomy may play a key role in transmitting self-regulatory capacity across generations and help explain individual differences in maltreatment outcomes. In this study, we investigated multigenerational associations between Generation 1 (G1)-Generation 2 (G2) mothers' early experience of warmth and autonomy in relation to their own mothers and their Generation 3 (G3) children's autonomic physiological regulation in CM (n = 85) and non-CM (n = 128) families. We found that G2 mothers who recalled greater autonomy in their childhood relationship with their G1 mothers had preschool-age G3 children with higher respiratory sinus arrhythmia at baseline when alone while engaged in individual challenge tasks, during social exchanges with their mother in joint challenge tasks, and during the portions of the strange situation procedure when the mother was present. Although no clear mediators of this association emerged, multigenerational links among G1-G2 relations, maternal representations of her child, child behavior, and child respiratory sinus arrhythmia differed by maltreatment status, thus possibly representing important targets for future research and intervention. Exposure to adverse childhood experiences confers risk in biological and behavioral domains of functioning (Anda et al., 2006;Felitti et al., 1998). In particular, early exposure to child maltreatment (CM) is associated with deficits in children's self-regulatory functioning. Compared with their nonmaltreated peers, children exposed to CM in early childhood are at increased risk for developmental delays (

Introduction A major function of many biological and social systems is to encode, process, and share information. The functional forms of the information-theoretic quantities used to describe these aspects of a system are given to us by deduction from a remarkably small set of axioms. Estimation of these quantities is not trivial. When done carelessly, it can violate these underlying axioms, introduce spurious signals, lead to sensitive dependence on what should be innocuous choices of data representation, and create inconsistencies between estimation methods that otherwise should have been equivalent. This paper addresses this problem. In particular, we first present a method-the statistical bootstrap-for estimating some of the most important information-theoretic quantities. The method preserves, approximately, the relevant axioms. We shall show in particular that it outperforms both "naive" and Bayesian estimators in a regime of particular interest: when n, the number of samples, is at least as large as k, the number of bins, event-types, or categories. Not all empirical work satisfies this constraint, and much effort has been devoted to the under-sampled regime or to continuous data; however, a great many problems do, and these are the ones we are concerned with here. We shall show also that the bootstrap can provide reliable error estimates. At the same time, we introduce, for the benefit of those working in the empirical sciences and who may be less familiar with the utility and power of information theory, the axioms and their direct utility in producing consistent and coherent accounts of the role that information, signaling, and prediction play in the real world. We do so by reference to two real-world examples, so as to provide an explicit guide for how information theory allows the phrasing, and answering, of vital questions. We begin, in Section 2, with the entropy estimation problem. This section introduces the major technical themes of the paper: coarse-graining, the axiomatic foundations of information theory, and the use of the statistical bootstrap. We then consider two uses of information theory in the real world. The first, considered in Section 3, is to measure, in a principled fashion, how much two distributions differ. We describe and interpret two measures, the well-known Kullback-Leibler divergence and the less well-known, but often better-behaved, Jensen-Shannon divergence. We then show that quantifying the differences between distributions allows us to bound the probability of error made by participants in the system. We provide an illustrative example by reference to an on-going research project in the information-theoretic structure of the British Criminal Court system. The second, considered in Section 4, is to measure the extent to which two patterns of behavior are synchronized. We emphasize the advantage of mutual information over less-principled measures such as the Pearson cross-correlation coefficient, with particular reference to the data processing inequality. We provide an illustrative example by reference to an on-going research project in the nature of decision-making in the Afghanistan insurgency. All of the results presented rely on the use of the statistical bootstrap. In Section 5 we detail numerical results on the use of this technique. We show how well the bootstrap corrects for bias, how well it preserves the relevant axioms , and how reliable its error estimates are. Our goal in this section is to provide an accurate guide for practitioners in the use of the bootstrap and to ground the explanations and accounts of the previous two sections. We conclude in Section 6. --- Estimating Entropy Information Theory deals with probability distributions, p, over outcomes. Its most fundamental quantity is entropy, which can be interpreted as the uncertainty of outcome when drawing from p. Shannon's original paper [1] establishes that the entropy function H takes a unique form, given the assumption of continuity and two additional conditions: 1. Uncertainty principle. When all k entries of p are equal, H should be a monotonic, increasing function of k. 2. Consistency under coarse-graining. H is equal to H + H. Condition 1 says that the uncertainty should rise when there are more possibilities . Condition 2 says that if two outcomes are grouped, then the uncertainty is the uncertainty of the more coarse-grained description, plus the uncertainty of outcomes from the grouped category. Condition 2 is not only the central axiom that leads to a unique mathematical form for the previously qualitative notion of uncertainty. Its recursive nature allows one to tie together descriptions of observed phenomena at vastly different resolutions, or coarse-grainings. The analysis presented in Section 3, for example, coarse-grains natural language texts to 116-dimensional feature vectors; however, other coarse-grainings, at 1031-dimensions and 26,740-dimensions in our analysis, are possible, and estimation methods that preserve Condition 2 allow us to ask questions simultaneously about how much information is to be found at each level of description, and how much is lost when going from one description to another. Our goal in this section will thus be the extension of Shannon's theory to discrete counts, n, of observations such that Condition 2 can, in some more or less exact fashion, be preserved. Depending on what limits the axioms are satisfied in , we consider functions to be more or less strict. The strictest demand requires 1 . Uncertainty principle. When all k entries of n are equal, Ĥ should be a monotonic, increasing function of k. 2 . Consistency under coarse-graining. Ĥ is equal to Ĥ + n 2 +n 3 n Ĥ, where n is the total number of observations. 3 . Asymptotic convergence. As n goes to infinity, Ĥ → H. The simplest solution to this problem is to use the so-called naive estimator of the entropy, Ĥ = H n 1 n , . . . , n k n = H) where p is often called the empirical distribution. This satisfies Conditions 1 and 2 by construction, while satisfaction of Condition 3 is a consequence of the Asymptotic Equipartition Property. By a slight abuse of notation, we will write H in place of H). As proven in [2], any estimator of entropy is necessarily biased-meaning that estimates of H made on a finite sample will, on average, disagree with the asymptotic value. It is well known, for example, that the naive estimator above tends to underestimate the entropy of a system, and can be quite biased indeed for small n , or small p i 1/k 2 . In an attempt to reduce the bias on the naive estimator, we can attempt a bootstrap correction. H corr = H -H P -H where n * is constrained to sum to n; here P is the probability of drawing a set of n i observations, n * , from an empirical distribution, p, given by n. Equation estimates the bias of H compared with H by estimating the average distance of H, where n * is given by i.i.d. draws from p, fromH. If the relevant properties of p are captured by p, this should be a reasonable approximation. Figure 1 illustrates explicitly the logic of the bootstrap, the implementation of Equation , and the means by which one can obtain not only a bootstrap-corrected estimate but also error ranges for that estimate. The bias correction of Equation also violates the consistency conditions that should relate H corr computed on fine-vs. coarse-grained distributions . For example, we may expand the H term of Equation as H P = H + n * 2 + n * 3 n H P where a * is {n * 1 , n * 2 + n * 3 }, and b * is {n * 2 , n * 3 }. Conversely, if we had computed Ĥcorr in two steps, on the coarse-grained n and then the fine-grained subspace, the expansion of the equivalent terms would have given us H P = H P + n 2 + n 3 n H P Equations and are identical except for the fact that the second expectation value in Equation fixes the prefactor to the maximum-likelihood value, while the expectation value in Equation places no such constraint. Any coarse-graining enforced post hoc will enforce a condition on the subset that is not enforced, by the bootstrap, in the aggregate. Consistency violations, however, are slight, and are at least a factor of ten less than other estimators in the literature. As we shall show in detail in Section 5, the RMS error, even for n equal to k, can be made quite small: for example, roughly one-hundredth of a bit, or 0.6% of the average entropy value, for a sixteen-state system. We turn now to the properties of information-theoretic quantities for the study of two central problems: distinguishability and synchronization . --- Distances between Distributions In the year 1820, John Long was brought before a judge at the Old Bailey-the central criminal court of London, England-on a charge of breaking the peace. The full transcript of the trial was reported in the court proceedings of 18 September 1820 . Despite the seriousness of the charge the full transcript for Long's trial is just under 400 words . As part of an on-going collaborative research program on the nature of institutional decision-making [3], we would like to know how much information the transcript contains about the outcome. Such a question is naturally phrased in terms of a distance or divergence: how "far apart" are trials, for example, that lead to guilty vs. not-guilty verdicts. A contemporary of Long's, hearing of his being brought to trial, would have had quite a bit of information about what was likely to happen. She might know, as we do now, for example, that roughly three-quarters of all defendants at the Old Bailey the year before were given guilty verdicts . She might know more: that men were slightly more likely to be found guilty than women, for example . Once the trial had begun an observer would expect to refine her beliefs about what would happen. Informally, we say that the transcript carries information about the outcome, and a good observer would be sensitive to it. The transcript carries information, of course, about a great many things, including the legal and moral intuitions of the participants, their relative social status, and more or less reliable information about the actual events that the defendant is accused of taking part in. What we are interested in is the extent to which this talk, truthful or not, provides any signal of the underlying decision-making in the legal system itself. This question is independent of causal mechanisms: whether the transcript records an input to the decision-making process, or whether it is simply a symptom of hidden variables whose values are set by other means. Answering this question will tell us a great deal: not only about the extent to which the goings-on in the courtroom reflect actual features of the decision-making process, but also about the amount of information in principle available to actual observers-including participants who might alter, for strategic purposes, the information content and capacity of their behavior, or who might respond to information contained in the behavior of others. To answer this question, we measure, using the data to hand, two distributions over transcript features. One distribution is constructed from trials with guilty outcomes, and one from those with not-guilty outcomes. As John Long's trial proceeds, we build up an empirical distribution over categories. If the transcript features we have identified are indeed information-bearing, in doing so we will learn something about which of the two distributions the trial is more likely to have been drawn from. We focus on the lexical structure of the transcripts. We first measure how many times different words appear, dropping all information about the ordering of those words within a transcript. We draw on computational linguistic tools to split words by part of speech: for example, we distinguish whether "dog" is being used as a noun or verb. We then map these word counts to a more coarse-grained set of semantic categories, and use this to build up an empirical distribution for the trial at hand. This amounts to an assumption of feature-independence: the claim that, while many aspects of language are clearly order-dependent , we shall consider only features whose arrival order does not itself carry information [4]. Explicitly, then, we can then define two distributions, p , pk = 1 n ng i=1 n ik where n ik is the number of counts of words in semantic category k found for trial i, n g is the total number of guilty trials, and n is the total number of semantic hits . We define q for trials with not-guilty outcomes similarly. These approximations are sufficient to turn a qualitative question about the availability of information in trial transcripts into a form amenable to an information theoretic analysis. We consider two distinct ways to answer the transcript information question. Both are formulated in terms of a distance, difference or "divergence" between the distribution over categories for guilty-outcome transcripts vs. the distribution over categories for the not-guilty outcomes. Both methods seem to quantify essential aspects of the question. The first we consider, the Kullback-Leibler divergence, is well-known, but potentially unsuited to empirical work. The second, the Jensen-Shannon divergence, is sufficiently well-behaved that it allows for bootstrap bias-correction and error estimation. In the final subsection, we show how the Jensen-Shannon divergence can be interpreted in terms of how well an optimal decision-maker can perform in gaining knowledge about the system in question, and present the Bhattacharyya bound, which provides a strong bound on how well a rational observer can perform as more data comes in. --- Kullback-Leibler Divergence The first, Kullback-Leibler divergence, is an asymmetric measure. It can be interpreted as the answer to the following question: if the true underlying distribution is p, what is the asymptotic rate at which evidence accumulates against the alternative q? We can derive the Kullback-Leibler divergence explicitly. We first write the probability of seeing a particular empirical distribution n given p as P = N k i=1 p n k k and similarly for the distribution q; N is a combinatoric constant common to both P . We can then write the asymptotic, geometric average of the ratio as A = lim n→∞ P P 1/n = exp lim n→∞ 1 n log P P Put picturesquely for the case of the Old Bailey, imagine a courtroom observer who has already heard an enormous amount of a trial, and that this trial is drawing from the distribution p. Each new observation will tend to confirm her belief that the trial is, indeed, drawing from p , and will change her estimate of the relative probability of outcome, P /P , by a factor A. The Kullback-Leibler divergence, D, is then defined as the average value of the logarithm of A: log 2 A p . It can be written succinctly as D = k i=1 p i log p i q i (8 ) If there is a non-zero probability in p of hearing a term that is impossible in q-a "magic word" that can only be produced by p-then there is a non-zero chance that the next word the observer will hear will make P zero and so the Kullback-Leibler divergence will be infinite. Furthermore, since there is a non-zero probability for a resampling from p and q to create such a magic word, it is impossible to use bootstrap methods to correct for potential bias or to estimate error bars [5]. These infinities are particularly troublesome in empirical work where sparse sampling can generate magic words that do not reflect truly deterministic signals in the underlying process. In the next section, we investigate an alternative method for estimating the differences between distributions, the Jensen-Shannon divergence, which is better behaved. --- Jensen-Shannon Divergence In contrast to the KL divergence, the Jensen-Shannon divergence is symmetric. It can be interpreted as the answer to the following question. Assume that a sample is drawn from either p or q; p is chosen with probability α. How much is my uncertainty about which of the two distributions was used reduced by this single draw? Again, put picturesquely, imagine our observer walks into a trial at the Old Bailey at random. Given the disposition of the judico-social institution as a whole, she has some belief about the probabilities of outcomes. These leave her more or less uncertain about the fate of this particular defendant. Now she hears a single word spoken in the room. How much is her uncertainty reduced? The answer is the Jensen-Shannon divergence, J α . More formally, the JS is the mutual information between a draw from one of the two distributions, and Z, a binary variable indicating which of the two distributions the process actually chose to draw from. When logarithms are base-two, this means that the Jensen-Shannon divergence is always between zero and unity . The JS divergence has the functional form [6] J α = αD + βD where m is defined as m = α p + β q with α between zero and unity and β equal to 1-α. An equivalent definition, from which some identities become easier to derive, is J α = H -αH -βH While less well-known than the Kullback-Leibler divergence, the Jensen-Shannon divergence is always finite, and so it is possible to attempt bootstrap bias correction and error estimation. When taking the square root, it also satisfies the triangle inequality and so can even function as a metric. Just as for entropy, we have a coarse-graining consistency relationship for the JS divergence. In particular, for two distributions p, {p 1 , p 2 , p 3 } and q, {q 1 , q 2 , q 3 }, we can define the probability of landing in the {2, 3} subspace, p S , as p S = α + β We then have J α = J α + p S J α/p S where we silently renormalize probabilities in the subspace. Again, the consistency relationship shows the nested structure of information-theoretic reasoning: the additional information provided by more fine-grained distinctions appears, in weighted form, in the second term. For two empirical distributions, n and m, we can define the naive estimator using Equation , and from there define the bootstrap correction, J corr = 2 Ĵ -Ĵ P Bias correction, and error estimation, properties of Equation may be characterized in a similar fashion to the more common entropy and mutual-information estimation cases shown in detail in Section 5. As for the bootstrap-corrected entropy and mutual-information, the bootstrap-corrected J α leads to violations of the consistency relation, Equation . Violations are slight, and of the same order as found for the entropy itself. --- The Bhattacharyya Bound We now consider how information theory can place rigorous bounds on the abilities of observers both inside and external to the system. We will consider, in particular, how to measure a maximallyrational observer's rate of error-the fraction of the time we can expect her to be wrong-when inferring facts about the system. Rather than measuring her error rate precisely, we will show how to bound it from above. Bounding the rate, as opposed to knowing it directly, will not be so great a loss. In making our subject maximally-rational, we have at the same time obscured some features of the system available to real-world observers. A real participant would have access to more information and thus be able to outperform the one we can describe. Thus, regardless of how well we estimate the error rate for our fiducial subject, we will only ever have upper bounds. Consider, once more, our observer at the Old Bailey, who watches a randomly-chosen trial and is interested in determining its outcome. Let us take the probability of a guilty outcome to be α; for simplicity, assume that α is greater than 0.5. If our observer knows this, and nothing else, her best guess, "guilty", will be wrong with probability . When the observer acquires new information, her probability of error will decrease. By a theorem of Lin's [6], we can bound this updated probability of error. For a single observation, the probability of error is bounded from above by P e ≤ 1 2 -J α ) In many cases, J α may be very small, and the bound on P e may not differ significantly from the bound given by prior knowledge. Indeed, in many real-world situations, this is to be expected-it would be remarkable, for example, if an observer were able to glean significant information about the progress of a trial from hearing only a single word! Unfortunately, the generalization of P e to the case of multiple observations does not have a simple formulation in terms of the Jensen-Shannon divergence. A number of different ways exist to approximate bounds on P e , the probability of error after n observations. A commonly used one is the Bhattacharyya bound, P e ≤ αβρ n (16 ) where ρ is ρ = i √ p i q i (17 ) The Bhattacharyya bound is an approximation to the stricter Chernoff bound [10]; in practice, it is very close [11,12], and far less computationally intensive to measure. Other approximations exist [13], but the functional form of the Bhattacharyya bound makes it possible to extend the bound to multiple observations. To give an example of the use of the Bhattacharyya bound, we can consider the statistics of criminal trials in the years prior to 1820. In the twenty year period between 1800 and 1820, the probability of a guilty verdict was 76%-and so the associated error rate, before any observations are made, is 24%. The associated Bhattacharyya bound, P e , is 43%-not particularly tight . Indeed, given the ease with which the exact rate can be computed, it is not of great interest. The power of the bound quickly becomes apparent, however. A standard coarse-graining we use in our investigations of this system sorts words into 116 possible categories. For the twenty year period between 1800 and 1820, the ρ term for this particular coarse-graining, splitting guilty vs. not-guilty verdicts, is approximately 0.9980 ± 0.0002-very close to, but not exactly, unity [14]. With knowledge of ρ, we can then compute the probability of error given an arbitrary number of words. The error rate drops to 5% after approximately eight hundred words, and to 1% at 1620. The Bhattacharyya bound has an important limitation: it refers to prediction not upon sampling repeatedly from a particular instance of a class , but on sampling from the overall distribution. These two cases may, or may not, be equivalent. An obvious way for the equivalence to fail is for the underlying bag-of-words model to fail: if a trial's semantic features are not independent draws, but that prior text within the trail alters the distribution from which the remainder is drawn. A less obvious way for the assumption to fail is if there are multiple sub-classes. It may, for example, be the case that a guilty-verdict trial can take two forms: independent draws from p 1 , or independent draws from p 2 . If the two sub-classes are equally likely, then we will measure p to be the average of p 1 and p 2 , but there is no such thing as a trial that draws from p [15]. Note that when the sub-class membership is unknown, the second failure mode also leads to conditional dependence-each draw gives better information about which sub-class has been chosen, and thus alters one's beliefs about subsequent draws. For single draws, this does not matter; it only becomes apparent when making multiple draws; if the n draws are represented as {n i }, and the two sub-classes are equally likely, we have P ∝ α n i=1 p 1 + n i=1 p 2 which is distinct from the single-class case used to derive the Bhattacharyya bound, P ∝ α n i=1 + p 2 ) which contains cross-terms. The functional form of Equation makes it impossible to derive an equally simple version of Equation for the multiple-class case. We can study the validity of the assumptions of the Bhattacharyya bound by comparing the predicted bounds on the error rate with the actual success we have on predicting the outcomes of trials in the dataset itself. Figure 2 plots the Bhattacharyya bound; the error rate if each observation samples at random from the set of all trials with a particular outcome; and the error rate if each observation samples only from a single, randomly chosen, trial ). As expected, is bounded by , but the error rate for actually rises: we do worse at predicting the verdict for a particular trial when given the transcript. Such an outcome strongly suggests, of course, that assumption of a single class is wrong; conversely, that there are different ways to be found guilty, and that these differences leave signatures in the semantic features of the trials themselves. It is a form of ergodicity breaking that one expects to be common in social systems: a single trial will not sample the full space of possible trial features. Correct estimation of the error rate for a real-world observer of a particular trial requires one to estimate the number of sub-classes within each verdict. Prediction error curves and the existence of multiple classes. Solid curve: the Bhattacharyya bound for prediction of trial outcome for the period 1800 to 1820. Triangle symbols and solid line: actual prediction error, when drawing samples from all trials within a class . As expected, the curve lies strictly below the Bhattacharyya bound. Diamond symbols and dashed line: actual prediction error, when drawing samples from a single trial. The prediction error actually rises , suggesting that the underlying model is incorrect. We restrict the set of trials here to those with at least one hundred words, so as to make the resampling process more accurate. --- Summary Measuring the extent to which two distributions differ is a common question in an information-theoretic context. Differences between distributions are naturally interpreted as decision problems: how well ideal observers can distinguish different outcomes. Different measures have different interpretations, and while these differences appear subtle, their properties may make them more or less useful for empirical study. The KL divergence can be interpreted in terms of an asymptotic rate at which information for a particular hypothesis is accumulated, given that the hypothesis is true. It has the unfortunate property of becoming infinite under conditions we would expect in the real world. Meanwhile, the JS divergence is well behaved. It can be interpreted as the amount of information relevant to distinguishing two outcomes that is contained in a single observation of the system. Finally, the Bhattacharyya bound extends the Jensen-Shannon divergence to the case of multiple observations. Care must be taken in its use, since a binary decision task may involve multiple sub-classes; the bound is strictly true only when considering draws from the overall distribution. --- Correlation, Dependency and Mutual Information On 3 April 2005, in Spin Boldak, a town in Kandahar province, members of the Afghanistan insurgency remotely detonated a bomb concealed in a beverage vendor cart. The resulting explosion killed two people: a civilian and a police officer. The full report, as used in the analysis of this section, appears in Appendix Section B. It was one of eight events in the country recorded by members of the International Afghanistan Security Forces that day. To what extent was this event coordinated with others that day, week, or year? The event described above is drawn from the Afghan War Diary database, a remarkably detailed account of the Afghanistan conflict and the actions by both the insurgency and ISAF. The open-source nature of the release has led to a number of efforts to characterize the data [16,17]. It is likely to become a standard set for both the analysis of human conflict and the study of empirical methods for the analysis of complex, multi-modal data. The release amounts to roughly 70, 000 SIGACTs , which record detailed information about individual events. After filtering the data, we distinguish between SIGACTs that record insurgent-initiated events vs. those that record ISAF-initiated events [18]. We then choose either of the two sets, group the events by the day on which they occurred, and generate symbolic time series for each province. We coarse-grain the complex information available in the SIGACT data by means of a four-state codebook, where codes are assigned based on the severity of violence. In order of increasing severity, Code 0 is when no events are recorded in the province that day; Code 1 is when events are recorded, but no injuries or deaths are associated; Code 2 is when one or two injuries or deaths are recorded; Code 3 is when more than two injuries or deaths are recorded. Taking the example of Kandahar province on April 3rd, there was, in addition to the Spin Boldak bombing, one other insurgent-initiated event recorded: a second IED explosion with no reported injuries or deaths. Based on these two facts, we assign the insurgent time stream for Kandahar province Code "2". Central to an understanding of modern insurgencies is measuring the level of communication and coordination among insurgent groups [19]; and signaling of intents and abilities, both among groups and between groups, government actors and the civilian population [20,21]. This leads directly to the information theoretic question of the extent to which this event is coordinated with other events in the system, and the extent to which the other events may or may not have played a signaling role. As part of an ongoing collaborative investigation [22] we would like to know-or at least bound-the minimal amount of information shared between systems for the purposes of synchronization or response, and how the temporal structure of this shared information changes in time. Examining the data within the axiomatic framework of information theory is likely to provide a novel approach to longstanding conceptual and quantitative questions at the center of the study of human conflict. Because of its centrality to the study of decentralized insurgency, we focus in this section on the question of signaling and coordination. We focus in particular on two neighboring provinces in a single year to show the kind of questions information theory allows us to pose and the provocative answers it provides. --- Mutual Information Mutual information is a specialization of the divergence measures considered in the previous section. In particular, it measures the KL distance between two distributions: a joint distribution, p ij , and one derived from p ij but in which the processes are forced to be independent, I = D where the marginals are p i• = k j j=1 p ij and similarly for p •j . If the space of events labelled by i is A, and B for j, we often write I for Equation . A standard, and useful, interpretation of mutual information is the average reduction in uncertainty of the value of a sample from A, given knowledge of the value of a sample from B. This means, among other things, that the entropy of A is an upper limit on the mutual information between A and any other variable. As with entropy and the Jensen-Shannon divergence, the naive estimator can be used to define a bootstrap-corrected version, I corr = 2I -I P where coarse-graining consistency is now preserved only approximately. By contrast with H corr , it is possible for I corr to be less than zero: observations that happen to produce a precisely factorizable empirical distribution, for example, so that I is zero, will have non-zero probability to resample to a distribution that does produce correlations. Thus, the information inequality, I ≥ 0 with equality if and only if X and Y are independent, does not hold for I corr . This parallels the difficulty, in many empirical studies, of establishing complete conditional independence given finite data [23,24], and requires reliable estimation of error ranges in order to prevent reporting of nonexistent relationships. Much like the quantities of the previous section, mutual information does not directly measure causation. This can be seen explicitly in the symmetric structure of Equation , where I is equal to I. There are a number of methods for finding answers to causal questions [25,26]; a common starting point is to examine time-lagged mutual information: the methods we describe here, and the means by which they are characterized, are equally amenable to the case where A is time-lagged relative to B. The mutual information for the two provinces, given only knowledge of four-state codes, is 0.04 ± 0.02 bits ; same-day knowledge of the events gives a small, but detectable, boost to predictive ability, indicating some pathway for the sharing of information between the two processes. We emphasize that such a pathway may not be direct, and may involve common cause nodes that act not as a conduit of information but as a synchronizing signal. Obvious exogenous, common causes include external political factors such as a national election, and seasonal weather patterns that make it hard for the insurgency to act during harsh winters. For example, if the insurgency usually conducts daily high-severity events but a harsh winter makes this impossible, knowing the severity of an event in Kandahar will disclose the season , and lead to one bit of mutual information between Kandahar and Helmand provinces-without any direct causal influence. Figure 3 shows how mutual information can be used to determine both the timescale and directionality of information flow. We consider the mutual information between a single day in one province, and the modal day, on some date range, for the second province. Taking the modal day is essentially a coarse-graining of the exponentially large multi-day state space; it scrambles time information within the range, and amounts to a particular decimation choice. Figure 3. Predictability of the Kandahar and Helmand time streams. Top: a dramatic asymmetry on short timescales provides strong suggestion of anticipatory, and potentially causal, effects transmitted from Kandahar to Helmand province on rapid timescales. Bottom: the consistent, opposite asymmetry is seen in the reverse process. A rise in the predictability of Kandahar by Helmand on longer timescales, mirrored in the top panel, suggests potentially longer-term seasonal or constraint-based information common to both systems. The top panel of Figure 3 considers the mutual information between a day in Helmand province, and the modal day of either a range of dates in the past or future. For example, knowledge of the modal day for the prior twenty days in Kandahar leads to approximately 0.1 bits of information about the current day in Helmand. We can turn that phrasing around for the positive x-axis, and note that knowledge of current day's events in Helmand provide much less information about the modal day in Kandahar's near future. This effect is reversed where we find that knowledge of Kandahar's present gives more information about Helmand's future modal days than the reverse. On longer timescales, there is some increase in the predictive power of Helmand's past for Kandahar's future , which could potentially be attributed to knowledge of seasonal properties that affect both provinces-a similar predictive power is seen on the same timescales, in the same position, for the top panels, suggesting a common cause with similar effects. --- The Data Processing Inequality A novel relationship that arises for the case of mutual information is the data processing inequality. In its simplest form, as found in [10], it states that if three random variables X, Y and Z form a Markov Chain in that order, i.e., p = ppp then I ≥ I This is called the data processing inequality because the transformation from Y to Z can be seen as an "processing" of the output of a measurement of Y , which cannot add any new information about X. Directly relevant to our work here is a four-term version of the inequality, where two underlying random variables, X and Y , are known by two independent post-processings, A and B. For us, the two mappings, X → A and Y → B, are a good description of how a massively multi-dimensional random variable, describing the full state of a province, is reduced to the sum of the observed SIGACTs and, further, to the four-state codebook considered here. If the structure of the required conditional independencies is p = ppp then the mutual information between A and B is bounded by that between the underlying system, I ≥ I. Equations and play a role similar to the Lin and Bhattacharyya bounds for decision-making in Section 3.3. If we are interested in the coordination of violence between provinces, then measurement of the mutual information between the dimensionality-reduced data provides a strict bound to the full system; phrased in the language of Section 3.3, it bounds the predictability, by a rational agent with at least as much information, from below. A simpler form of the data processing inequality can be found for the case where the post-processing is deterministic, i.e., the entries of p and p are only either zero or one. This version of the data processing inequality amounts to the statement that coarse-graining a process will not, on average, increase the mutual information with a second data stream. This extends to any combination of deterministic coarse-graining and remapping . --- I We study the preservation of this axiomatic relationship in detail in Section 5.2. --- The Bootstrap Estimators In Practice The previous two sections have introduced two applications of information theory to the study of large-scale collective behavior. The framework allows us to quantify conceptually important aspects of both systems. Since estimation of these quantities is often from noisy, sample-limited data, we would like to know how our estimators perform in practice. We consider here the performance of the bootstrap estimators in the preservation of coarse-graining consistency, and in the error estimates and bias correction they provide. This section provides the main technical, as opposed to empirical or conceptual, results of our paper. Additional characterizations appear in Appendix C. The C and Python codes for the rapid evaluation of the Wolpert and Wolf, NSB and Bootstrap estimators used in this paper have been made publicly available as part of the THOTH package [27]. --- The Bayesian Prior Hierarchy In order to characterize the bootstrap, we must first consider the range of problems we hope to apply it to. Doing this amounts to defining an "underlying" distribution over distributions. For the discrete-symbol processes we have considered above, a mathematically elegant choice for the underlying distribution involves the use of the Dirichlet distribution. For the homogenous case, the Dirichlet distribution is parameterized by a single parameter, β, where the probability of any particular distribution, p, arising is P = 1 Z k i=1 p β-1 i where Z is a normalization constant. While D 1 , sometimes called the "Laplace prior", is a common choice, it was noted by [28,29] that it has unusual information-theoretic properties; in particular, the average value of the entropy of a distribution drawn from D 1 is quite high. Nemenman et al. [28,29] suggested an interesting alternative: to construct a mixture of Dirichlet distributions D NSB such that the entropy of a distribution drawn from D NSB is approximately uniform. The question of Bayesian estimators for information-theoretic quantities under a Dirichlet prior was addressed by [30] , where tools were provided for estimation of entropy and mutual information for arbitrary β, and explicit formulas for the D 1 case were given; these are analytic in terms of polygamma functions. Nemenman et al. [29] provided a numerical method for the estimation of entropy under the D NSB priors. In order to produce an NSB estimator for the mutual information, we can extend the Theorem 10 in [30] to the β = 1 case, and then integrate this over the NSB prior ; this estimates mutual information under the assumption that draws of the p ij are uniform in entropy. In the Bayesian framework, more general choices of prior allow for the proper evaluation of a wider range of models; conversely, Bayesian estimators will often fail when given a sample whose underlying model lies outside the prior support. The D NSB prior is more general than the D 1 prior, and as such has a wider range of applicability; we expect the NSB estimators to strongly outperform the WW estimators when evaluated on distributions drawn from Dirichlet distributions with β much less than unity, for example. Both priors, however, assume that bins are drawn from distributions with homogenous weights ). This assumption is likely to fail in real world systems, and its failure may lead to inaccurate inferences. This is particularly problematic in biological and social systems where there are few clues to the correct choice of binning: if a three state system is best modeled as a draw from D NSB , then this assumption will fail for a different observer, who, under the influence of a rival theory, gathers data in such a way as to group two of the bins together to get a two-state system that now draws from an inhomogeneous distribution. While a single Dirichlet distribution with inhomogeneous weights leads to asymmetries that may be hard to justify a priori, this symmetry may be restored in Dirichlet mixtures. We thus consider in this paper a novel mixture, D , that allows a distribution to be drawn from a range of inhomogeneous Dirichlet distributions. A draw of a distribution p with k bins from D is made as follows: 1. Draw a random integer, k , between k and k 2 inclusive. This construction always amounts to a draw from some Dirichlet distribution . Our use of random partitions restores bin symmetries and ensures that we are not placing unwarranted a priori structures on the average properties of draws. Random partitioning may be done rapidly by modification of the ranksb and rancom algorithms from [31]. Note that just as D 1 is strictly contained within D NSB , D NSB is strictly contained within D . This gives us a hierarchy of Bayesian priors, D 1 ⊂ D NSB ⊂ D (29 ) where the set containment here is interpreted in terms of the support of the distributions. Inhomogeneous Dirichlet mixtures of the D form are extensions of the D NSB prior. They are particularly useful in cases where coarse-graining plays a significant role: either because an observer has coarse-grained the system during the process of data-gathering, or because the system itself is expected to have provided only coarse-grained information about its underlying function. These conditions are particularly likely to obtain when studying social, cognitive, and biological systems. Our example of semantic coarse-graining, introduced in Section 2, where the number of bins used in the analysis ranges over more than two orders of magnitude provides an example. If one believes the D NSB to be the optimal prior at a fine-grained level , a prior of D form is thereby urged for higher, more coarse-grained, levels . We can oppose these cases, where coarse-graining is an essential and intrinsic part of the study, to the situation that obtains in many physical systems. There, the "true" binning may already be known from the underlying laws of physics, and so a different prior may be of greater use. The D has not been a focus of study in the context of Bayesian inference, and much work remains to be done. Step 1 clearly admits different parameterizations, for example, as do modifications of the partitioning algorithm for Step 3. We consider the question of extending Bayesian NSB methods to these inhomogeneous mixtures an interesting problem for future work. In this paper, our goal is to compare how well the Wolpert and Wolf and NSB estimators compare against non-Bayesian bootstrap methods. We answer this question in the following section. --- Coarse-Graining Consistency The coarse-graining consistency relationship for entropy, Condition 2, and the associated coarse-graining relationship for mutual information, Equation , are central to basic information-theoretic results. These include the chain rules for entropy and mutual information , which means that the standard Venn diagrams that dictate the relationships between entropies and mutual information hold. The approximate satisfaction of Condition 2 allows us to recover, approximately, nearly all of the structure of Information Theory in the finite-data limit. For example, since a conditional entropy, H, can be turned into a difference of entropies, H -H, and each term can be consistently estimated by H corr , our method allows us to estimate any information-theoretic formula that analytically decomposes into the sum of entropies and conditional entropies, and bias-correct if so desired. For these reasons, we study how well the bootstrap preserves Condition 2. Because the satisfaction of Equation is directly related to the deterministic version of the data-processing inequality, we also test Equation directly. Our results follow directly from sampling ps from D , and then characterizing the performance of the different methods in estimating properties of p from finite samples drawn from p. We present these results in terms of the sampling factor, defined as the number of observations divided by the number of system states. Table 1 shows that bootstrap estimator provides a large gain RMS consistency compared with two commonly-used estimation methods. Table 2 considers the mutual information consistency relation, Equation . In a similar fashion to the case of Table 1, we find that the bootstrap has much improved performance compared with both WW and NSB. Table 1. RMS Violations of coarse-graining consistency for entropy for the Wolpert & Wolf , Nemenman, Shafee & Bialek , and the bootstrap. The bootstrap estimator leads to a factor of ten or more improvement in coarse-graining consistency; as the amount of data increases, the bootstrap approaches full consistency faster. The average entropy of the three-state distributions is approximately 1.2 bits. These results are for the D prior of Section 5.1. 27)) for the Wolpert & Wolf estimator, Nemenman, Shafee & Bialek for Mutual Information, and the bootstrap. The bootstrap estimator again leads to a factor of ten or more improvement in coarse-graining consistency; as the amount of data increases, the bootstrap approaches full consistency faster. The average mutual information of the 2 × 3 distribution is approximately 0.25 bits. The relatively poor performance of these two estimators is in part due to the homogenous nature of the D 1 and D NSB priors, which place equal weight on all known bins. The true system is not contained within either space of priors. --- Sampling --- Sampling WW NSB-MI (RMS bits In both cases, we consider coarse-grainings of distributions drawn from D ; however, our results are largely insensitive to whether we use D 1 or D NSB instead. In particular, the relative performance of the bootstrap and the Bayesian estimators is unchanged. The results of Tables 1 and2 are a main technical result of this paper. The entropy consistency relationship of Condition 2 and Table 1 is directly relevant to the analyses of Section 3 of the predictability of trial outcomes at the Old Bailey. There we are concerned with a range of different possible ways to coarse-grain the underlying trial transcripts, all of which represent strong and contrasting theories of linguistic semantics, and none of which are given to us a priori. Preservation of coarse-graining consistency means that we will not find anomalous gains or losses in predictive power by changing our underlying theories of social cognition and predictive abilities. Meanwhile, the mutual information consistency relationship, Equation and Table 2, is particularly useful in analysis of information flows between highly complex underlying state spaces, as was considered in the case of Afghanistan in Section 4 [32]. Simplifying the codebook, or enlarging it to account for additional features of the SIGACTs or other parallel data streams, will, again, lead to consistent shifts in the estimated levels of coordination, signaling and predictability that reflect the structure of the underlying system, and not features of the prior space. --- Bias Correction and the Reliability of Error Estimates Having established the utility of the bootstrap in preserving information-theoretic axioms, we conclude this technical section by characterizing the reliability of its bias correction and error estimates. We ask, in other words, how well we estimate the quantities in question, and how well we estimate our uncertainty about them. In this section, we neglect cases where the empirical distribution has entropy zero; these cases form a separate class of problem for which the bootstrap is particularly unsuited. Our use of the bootstrap involves a bias correction, and so we first want to know how well the correction works and how that correction compares to other methods in the literature. For a particular p, bias is defined as B H = H est P -H for the case of entropy, and similarly for mutual information and Jensen-Shannon divergence. Informally, B H asks what the average difference is between an estimate of H, from a sample of n observations drawn from p, and the true value, H. In many cases, unbiased estimators are possible; as noted in Section 2, however, estimates of information theoretic quantities are necessarily biased and the real question is the extent to which this bias is reduced by appropriate choice of estimator. The bias will vary depending on the particular p chosen; for simplicity, we consider the average bias for probabilities that are themselves drawn from a distribution; explicitly, we consider B H = B H P The use of a Bayesian estimator with prior D guarantees that B H will be zero ; as discussed above, since we draw from an inhomogeneous prior, D , that is strictly larger than either of the priors used in our Bayesian estimators, this study also allows us to characterize the performance of NSB and WW when predicting out of class. We also want to know how trustworthy our error estimates are. One useful way to quantify this is to ask how often the true value of the quantity in question lies within the 1σ and 2σ ranges. Our results on bias and error reliability are shown for two test cases-the estimation of the entropy of a 16-state system , and the estimation of mutual information for a 4 × 4 joint probability . Figure 6 shows the 16 × 16 case. -symbol: NSB estimator. Solid line: Bootstrap estimator. Right panel: one-sigma and two-sigma error bar reliability; as the sampling factor increases, both rapidly approach their asymptotic values . Average entropy for this prior is 2.4 bits. Right panel: one-sigma and two-sigma error bar reliability; as the sampling factor increases, both rapidly approach their asymptotic values . Average mutual information under this prior is 0.55 bits. Right panel: one-sigma and two-sigma error bar reliability; as the sampling factor increases, both rapidly approach their asymptotic values . Average mutual information for this prior is 1.33 bits. Bias correction often comes at a cost, since the relationship between the true bias and its estimated value is itself noisy. We find, however, that the RMS error of the bootstrap estimator is comparable to our best Bayesian estimator, NSB; this is shown in Tables 345. --- Summary Our results in this section provide strong support for the use of the bootstrap in the parameter ranges of relevance to many estimation problems. While the NSB estimator is unbiased over the D space for the entropy estimation case, it does violate the coarse-graining consistency relationship much more strongly. Meanwhile, the bootstrap is comparable to the NSB in bias and RMS error when used for estimation of more sophisticated quantities such as mutual information. As an example of the use of the characterizations of this section, Figure 5 allows us to read off, directly, useful information necessary for the evaluation of the claims of Section 4 for asymmetries of information flow in Afghanistan. For the 4 × 4 mutual information estimation problem, we have at least 305 days worthy of observations . This amounts to a 19× oversampling, putting us on the right-hand edge of each panel in Figure 5. Our bias is well below the overall signal, while our estimation of the 1σ error band is seen to be reliable. --- Conclusions We have presented two case studies of the use of information theory for the scientific study of collective phenomena associated with cognitively complex social systems. Scientifically compelling accounts of the role of information-such as those that involve reference to optimal prediction or signaling-often rely on some of the central axioms of information theory, including coarse-graining consistency, error-rate bounds and the data processing inequality. In studying the nature of our tool of choice, then, we have characterized the preservation of these axioms in the use of these tools in ranges likely to be relevant to current data. Information theory originated in the need to describe, and place limits, on the ability of engineered systems to communicate and process signals, to infer properties of the outside world, and to tolerate risk and uncertain environments. The extension of information-theoretic concepts from engineered systems and inferential tasks to the biological and social sciences expands the domain of the theory and places the measurement of its quantities at center stage. In many cases, the role of human, animal, or otherwise evolved reason in a natural system means that information theory is just as relevant there as it is for the study of engineered systems. Improvements in our understanding of both biological and social systems in large part depend upon increasing our understanding of how they encode and process information. Many systems devote significant amounts of constrained resources to precisely these tasks: the representation of aspects of the environment, and transformations on those representations-as opposed to direct intervention in the environment itself. The design principles for evolved systems may be very different, but the underlying laws are the same. Just as the study of an organism's structural morphology will make reference to engineering concepts such as efficiency, stability and dissipation, so will accounts of how individuals behave in ambiguously cooperative environments make reference to information-theoretic concepts such as bounds on optimal predictions. Less obviously, but no less central, is the role of coarse-graining in the construction of scientific accounts of collective phenomena. In the physical sciences, coarse-graining is a fundamental part of the construction of theories. In condensed matter and quantum field theory, the notion of a renormalization group is based on spatial proximity: things that are physically near each other can be grouped together, and the theory relating the properties of these coarse-grained groups can be related to the theory corresponding to the finer-grained description in a systematic fashion. In the case of biological and social systems, functional and computational principles dominate over physical proximity, and the parallel construction is in its infancy [33]. In the interim, we often find it necessary to conduct analyses of such systems using informally-derived coarse-grainings dictated by a combination of domain-specific intuition , numerical or analytic tractability , and the richness and accuracy of the underlying data itself. Indeed, in cognitive systems ranging from the neurobiological to the social, the emergence of this coarse-graining is itself a pressing scientific question [34][35][36]. For both these reasons-the desire to study the role of reasoning in nature and our lack of knowledge about the right way to carve nature at its joints [37], it is useful not only to estimate information-theoretic quantities but also to derive functions of the data that obey its underlying axioms. The technical characterization of the bootstrap in Section 5 provides strong support for its use in place of other estimators when these axioms become important to the reasoning one wants to do. Future work in this field will almost certainly provide better tools-including, one hopes, a fully Bayesian method for preserving the axioms exactly-and new insights into the role that reason and inference play in the natural world. HENRY BETTS. I am a constable. About eight o'clock on the night this happened, I was sent for, and knocked at the prisoner's room door, and told him to open it. I found it open, he was there in bed with his wife, she was in liquor. I took him to the watch-house. Four or five days after I saw North, his wounds were dressed. He had one cut from his ear down towards his mouth, his lip was cut, and he had a stab in his cheek. Prisoner's Defence. My wife had deserted me, and gone with North; I met them together, and North said if I touched her he would break every bone in my body. She followed me home, I was going to take her up stairs, and he seized me by the throat. GEORGE NORTH, being called, did not appear. Source and Post-processing Original source Ref. [38]; post-processing for initiative , geocode , and additional filtering by collaboration [22]. --- C. Additional Characterizations The expectation values that form the definition of the bootstrap have a natural expression in terms of sums over the multinomial distribution, H P = n * ∈N * n! n * 1 ! • • • n * k ! n 1 n n * 1 • • • n k n n * k (32 ) where N * is the subspace of k-dimensional vectors with L 1 norm equal to n. The bootstrap is thus non-linear in n; its bias correction is of a different nature from estimators linear, or piecewise-linear, in n, such as the Miller-Madow [39]. Direct calculation of Equation is exponentially hard; as with all bootstrap estimators of which we are aware, the most efficient method is to approximate of H corr by Monte Carlo re-sampling. The bias correction presented in this paper can be thought of as a zeroth-order approximation. In particular, it assumes that the bias of the resampled data is equal to the bias of the actual data . Because the naive entropy under-estimates the true entropy, and because this bias increases monotonically with entropy, this zeroth-order correction will always reduce the bias. This is strictly true only if one allows use of the bootstrap on empirical distributions with entropy zero, a usually rare case as noted above; since our analysis neglects these cases, Figure A1 shows a slightly positive bias at the smallest entropies. More sophisticated corrections allow for a functional dependence of bias on the underlying estimator. In many cases, the benefit to linear or non-linear corrections can be significant [40,41]. These higher-order corrections, however, do not decompose in the simple fashion of Equation and Equation , and will violate the coarse-graining consistency relations much more strongly. The bootstrap, naive, and NSB estimators perform differently as a function of the entropy of the underlying distribution. This is shown in Figure A1, where we measure the average bias as a function of the entropy of the underlying distribution, when we draw from D . The NSB estimator tends to overestimate low-entropy samples, while the naive and bootstrap tend to underestimate in the same regime. The results for D NSB are similar, though the overall average bias for the NSB estimator is now zero. The various prior distributions examined in this paper, D β , D NSB and D , lead to different distributions over entropy. Figure A2 shows the distribution of entropies for probability distributions drawn from D 1 , D NSB and D , for the case of draws from a sixteen-category distribution. As can be seen, the D NSB distribution leads to an impressively flat distribution of entropies above one bit . The D distribution shifts entropies somewhat to the center of the range. The D 1 distribution, otherwise known as the Laplace Prior, has the overwhelming majority of its prior support near the maximum possible entropy, making it hard to accumulate evidence for low-entropy distributions. --- Figure A1 . Estimator bias as a function of the entropy of the underlying distribution for the naive , NSB and bootstrap estimators. Distributions are over sixteen categories, drawn from D , and binned in 0.25 bit increments; the bias is for estimates made with sixteen samples . Ranges shown are one-sigma error bars for the bias in the bin. As can be seen, all estimators tend to overestimate small entropies, and underestimate large entropies, with the cross-over point depending on the method. As in the main text, Section 5.3, we neglect cases where the empirical distribution has entropy zero; this is one source of the positive bias at the lowest entropy bins. --- Conflict of Interest The authors declare no conflict of interest. --- Appendix A. The Trial of John Long, as Reported on 18 September 1820 JOHN LONG was indicted for that he, on the 28th of August, upon George North, feloniously, wilfully, and maliciously did make an assault, and with a sharp instrument did strike and cut him, in and upon his face, with intent to kill and murder him, and do him some grievous bodily harm. ANN HICKMAN. I live in Gardner's lane, King street, Westminster. The prisoner and his wife lived in the same house. On the 28th of August I was looking out of window, and saw the prisoner and his wife in the yard, with North, consulting about parting-his wife had cohabited with North, and wanted her clothes to go away with him; the prisoner said if she came up stairs she should have them-then all three came into the passage. I heard words at the foot of the stairs, went down, and saw North against the wall-he said, "I am done for." I saw his hand drop against the wall, it was all bloody. The prisoner was about half a yard from him. I did not see him do anything, and never heard him threaten North. I saw a knife in his hand, and said "Long take care what you are at, and give me the knife." He shut the knife up, and gave it to me-it was rather bloody. North had three cuts in his face; I saw nothing more. He was taken to the doctor's. A quantity of blood laid at the door. Whatever happened was done before I came down.

We characterize the statistical bootstrap for the estimation of informationtheoretic quantities from data, with particular reference to its use in the study of large-scale social phenomena. Our methods allow one to preserve, approximately, the underlying axiomatic relationships of information theory-in particular, consistency under arbitrary coarse-graining-that motivate use of these quantities in the first place, while providing reliability comparable to the state of the art for Bayesian estimators. We show how information-theoretic quantities allow for rigorous empirical study of the decision-making capacities of rational agents, and the time-asymmetric flows of information in distributed systems. We provide illustrative examples by reference to ongoing collaborative work on the semantic structure of the British Criminal Court system and the conflict dynamics of the contemporary Afghanistan insurgency.

INTRODUCTION The Human coronavirus, which derives from the family Coronaviradae, includes a group of positive sensed, single-stranded RNA. These RNA viruses have the largest number of genomes ranging from 26 to 32 kilo-bases in comparison to single-stranded viruses . Accordingly, coronavirus has evolved by gene recombination and mutation to be subdivided into 4 categories; alpha, beta, gamma and delta . Moreover, this virus has shown mutations with higher antigenicity, or infection potential, as a consequence of the host's development of humoral and cell-mediated immunity . It is one of the major pathogens that initially targets the human respiratory system . In fact, in December 2019, 40 cases of pneumonia were reported in Wuhan, China which etiology was soon established to be the new virus called novel coronavirus . The severe acute respiratory syndrome coronavirus , which was the causative agent of an outbreak in 2003, and SARS-CoV-2 , are highly similar because they have high nucleotide homology of around 77%. SARS-CoV-2 is less pathogenic, but more transmissible compared to SARS-CoV . SARS-CoV-2 is transmitted from one person to another by direct contact or droplets from sneezing or coughing . Until the 22nd of April 2020, this outbreak resulted in 2,503,412 cases around the world whereby 171,809 lost the battle and passed away . The first coronavirus case in Lebanon was identified on February 21st. Eight days later, schools were locked down followed by bars, restaurants, and finally the airport. By March 15, the entire country had been on lockdown by the government due to increased case numbers . Even though experts at this point assumed high numbers of infected persons and mortalities, until the 25th of April, 696 cases were tested positive for coronavirus disease of 2019 , and 21 patients passed away . As a consequence of the actions taken to prevent the spread of this outbreak, an economic crisis arose. More than 100 countries declared flight restrictions and boarder closure, causing a major drop in the number of flights per day from 150,000 to 200,000 to <100,000. The Chinese industrial production fell by 13.5% in the first 2 months of the year. According to an article published by BBC on the impact of this outbreak, 6.6 million claimed to be unemployed in the USA during April 2020 . Even though everyone is at risk of developing COVID-19, yet some conditions make the patient more susceptible to the disease. Being above 65, living in a nursing home, having lung diseases, cardiovascular conditions, diabetes, liver or kidney disease, or being immune-compromised not only increases the chance of acquiring the novel coronavirus but also the complications . The World Health Organization and the Center for Disease Control and Prevention declared that the most common signs and symptoms of this virus are fever, dry cough, and shortness of breath . Two to 14 days and 2-10 days are the incubation periods of coronavirus which are identified by the CDC and WHO, respectively. Nevertheless, two cases were reported after being incubated for 19 and 27 days, respectively . WHO reported in a press conference on February 10, that a long incubation period could reflect a double exposure . Up till now the golden standard of COVID-19 diagnosis is nucleic acid detection, which is obtained from throat or nose swab sampling by real-time reverse transcriptase polymerase chain reaction . Rapid diagnostic test is a small and portable qualitative test that detects the presence of coronavirus antibodies; immunoglobulin G and M. The results need between 10 and 30 min to be obtained. This test was approved by food and drug administration , after the announcement of an emergency use of authorization as a diagnostic tool . The WHO states that the results of this diagnostic tool can be influenced by many factors which include the time from onset of illness, the concentration of the virus in the specimen, the quality of the specimen collected, and the formulation of the reagents in the test kits. Therefore, the sensitivity of this test may vary between 34 and 80%. Moreover, this serology test doesn't indicate if the patient has an active infection. It rather indicates the presence of antibodies . Unfortunately, up till today, there is no specific treatment or vaccine against the novel coronavirus. Proper symptomatic treatment along with oxygen supplementation are the major intervention for patients with severe symptoms. IDSA recommends against the use of corticosteroids in patients having pneumonia due to coronavirus. However, it supports its use when there are acute respiratory symptoms . There are several potential drug candidates including nucleoside analogs lopinavir/ritonavir, neuraminidase inhibitors, remdesivir, umifenovir, DNA synthesis inhibitors , tocilizumab, anti-malarial chloroquine, dexamethasone, and Chinese traditional medicine . Chloroquine and Remdesivir were highly effective in the control of this virus according to a study by Lai et al. . A study done in France on 30 male patients showed that the antimalarial drug combined with azithromycin reduced the SARS-CoV-2 load . The precise knowledge of hydroxychloroquine's side effects helps prevent some irreversible damages. In fact, hydroxychloroquine is not only responsible for minor side effects such as anorexia, diarrhea, and nausea, but it may also cause severe ones. Hyperpigmentation and photodynamic reaction may develop. Retinopathy will be the result of the accumulative deposition of hydroxychloroquine in the cornea . Concerning the heart, chloroquine, hydroxychloroquine, and azithromycin prolong the QT interval leading to a risk of arrhythmic death, especially when concomitant used . Consequently, the Lebanese ministry of Public health banned all pharmacies from dispensing hydroxychloroquine or chloroquine without a prescription from a specialist. Moreover, the pharmacist has to keep this prescription for tracking purposes . Concerning Remdesivir, an antiviral drug previously tested against Ebola virus, it did shorten the hospital stay but did not affect the mortality rate . According to the RECOVERY trial, launched in March in the United Kingdom, dexamethasone decreased mortality by 20% in severe cases of COVID-19 on oxygen or ventilation. Nevertheless, dexamethasone did not affect mild infections . More than 90 vaccines are being developed across the world. They work by blocking or killing the virus through exposing the body to an antigen. They rely on the virus itself, the viral vector, the nucleic acid, or the protein subunits. Other vaccines being tested are the existing ones against poliovirus or tuberculosis. Out of these vaccines, around 8 reached the safety trials while others are still being tested on animals . The WHO and other health organizations declared some preventive measures. Avoid close contact, frequent handwashing with soap, and water, always carrying an alcohol-based hand sanitizer, and application of strict hygiene measures in emergency departments and hospitals. All tissues used to cover a sneeze or cough should be tossed away immediately. Finally, health care providers should utilize contact and airborne precautions. They should wear face masks, gloves, gowns, and eye protection . The lack of proper awareness caused the death of 27 people in Iran not because of the virus itself but after drinking industrial alcohol believing that it is a preventive measure . A man and his wife died, under critical care in Arizona, after taking chloroquine in an attempt to self-medicate against SARS-CoV-2 . In Lebanon, the ministry of public health, in collaboration with the WHO, has issued several awareness campaigns on social media to prevent the spreading of the disease and prevent inadequate measures. Nevertheless, no study reflected the awareness of the population toward COVID-19 and its prevention. Consequently, this study was designed to evaluate the knowledge and attitude of the COVID-19 among Lebanese residents. --- MATERIALS AND METHODS --- Study Design and Population A cross-sectional anonymous survey was designed in April, 2020 targeting people living all over Lebanon. Due to quarantine, this study was conducted via a link shared on social networking platforms to limit the spreading of the disease. --- Study Tool The survey questionnaire was designed in English and then translated to Arabic, the native language in Lebanon. Both surveys were available and the participants had the freedom to choose between the two versions. --- Pilot Study A preliminary phase was conducted to assess the validity and reliability of the questionnaire before its use. Two experts were asked to review the questionnaire in order to make sure that it reflects the knowledge and attitude of the Lebanese population on COVID-19. Accordingly, the questionnaire was modified to meet the aim required. To check for clarity of the questionnaire, a pilot study was conducted which included 10 participants that took the survey in either language. Further modifications were done after feedback retrieval from the participants. --- Data Collection An online open-access google form survey was created and participants from all areas of Lebanon were invited via social networking platforms to participate. Beirut, North, South, Bekaa, and Mount Lebanon were the 5 focal points. The survey link was sent to different socioeconomic levels, via WhatsApp, who were asked to spread it to their relatives and friends to overcome some limitations of the online data gathering. --- Sampling The sample size was calculated using the online sample size "Raosoft R " calculator, assuming the Lebanese population to account for 6.825 million. The results showed that a total of 384 participants and above provides a representative sample with a 5% margin error and a 95% confidence level. The spreading of the survey link started on the 22nd of April, and this link was closed on Saturday April 25th when the number of participants exceeded the calculated representative number. --- Questionnaire The online survey was divided into four parts that included 24 mandatory questions. The first one requiring the sociodemographic information of the participant. The second one, having 6 knowledge questions requiring multiple answers. Each right answer was given one point, and each wrong or uncertain answer was given a zero. A score out of 18 was made. The third and last part included 8 questions reflecting the attitude of the respondents. --- Statistical Analysis The results were analyzed using Statistical Package for the Social Science software version 20 . Categorical data were expressed as frequencies while continuous data as means ± standard deviation . The ANOVA test was used to compare means . All results were considered "statistically significant" when the P-value was <0.05 with a confidence interval of 95%. --- Ethical Consideration The study was an observational one that respects the participant's confidentiality and autonomy. The participant had the choice to defer from submitting the filled form. This survey also didn't require neither names nor emails, and thus there were no traceability of the participant. Accordingly, Beirut Arab University Institution Review Board waived the approval for this study. --- RESULTS A total of 410 participants were included in the study. From the total participants, the age group between 25 and 44 years, female, Lebanese, and single accounted for 53.2, 58, 95.9, and 62%, respectively. Fifty-eight point five percent of the respondents live in Beirut, the capital of Lebanon. Around 80% hold a Bachelor's degree, and 32.2% work in the medical field. Concerning the participants' income per month, 31.5% reported to acquire <750,000 Lebanese pounds per month. As for the past medical history, 57.6% were in good health while 7.6%, and 4.6% had hypertension and lung diseases, respectively. Thirty-four point one percent of the participants were smokers . Most of the participants had a good knowledge of COVID-19 with a mean score of 13.51 ± 2.56 over 18. Risk factors for acquiring the novel coronavirus, as reported by the participants, were older age, cardiovascular disease, respiratory disease, diabetes, cancer, and smoking with percentages of 75.6, 73.7, 66.1, 50.5, 64.1, and 48.3%, respectively. SARS-CoV-2 was identified as a virus by 96.8% of the participants. Two to 14 days was the incubation period as acknowledged by 89% of the respondent. COVID-19 was recognized as a contagious condition by 98.1% of the participants. According to the route of transmission, 98.6 and 92.4% were positive that it can be passed via droplets and from contacting infected surfaces, respectively. On the other hand, Concerning the level of education, the participants who only reached elementary level scored significantly the least . Controversially, medical field workers had a significantly lower score than non-medical field workers and unemployed. On the other hand, other demographic data did not influence the knowledge of the participants . Furthermore, regarding precautions taking toward COVID-19 spreading, the overall attitude was acceptable. After sneezing or coughing, 81.2% of the respondents cover their mouths, 93.7% throw the used tissue, 93.9% turn their faces from other people, and 66.6% wash their hands. Face mask was worn by 59 and 79.3% of the participants, in case they are sick or if they are in a crowded place, respectively. Finally, 75.6% replace their face mask after a single use . Moreover, as a measure to boost their immunity, the participants increased their fruit and vegetable , and vitamin C intakes. More than half of the participants started conducting light exercises. Other measures taken were avoiding take away food , consuming ginger , Echinacea , and zinc as supplements . Referring to studies on hydroxychloroquine, only 10% agreed to take hydroxychloroquine if signs and symptoms of COVID-19 were present. The most serious side effects of the anti-malarial drug recognized by the participants were electrical disturbances of the heart and eye damage . On the other hand, The mean score was calculated from all knowledge questions. ANOVA test was done followed by tukey post-hoc test. P < 0.05 was considered statistically significant. 50% did not recognize any side effect of hydroxychloroquine . For medical inquiry, the survey participants prefer to seek the advice of a health care provider or the Ministry of Public Health hotline . Nevertheless, 20% seek medical information from social media platforms . In the presence of COVID-19 symptoms, 52.7% of the participants consider calling the Lebanese Red Cross to be transferred to the assigned hospitals, 25% visit any hospital, 10.5% seek help from their health care provider , and 11.2% self-medicate themselves without seeking medical advice . --- DISCUSSION COVID-19 represents a global health threat that boosts all local and international organizations to take preventive measures. In general, measures should encompass the source of the infection, its transmission route, and the susceptible population. Accordingly, knowledge of these vital elements is a necessity . In the current study, the respondents displayed a decent knowledge regarding risk factors, etiology, and route of transmission, incubation period, and signs and symptoms of COVID 19. The mean knowledge score was 13.51 ± 2.56 over 18 which can be attributed to the fact that nearly 80% of the participants had a university degree. Moreover, the main primary sources of COVID-19 information for the survey participants were health care providers , and the Lebanese Ministry of Public Health . In fact, the Lebanese authorities have released a new website for all information regarding the COVID-19. Moreover, television channels have broadcasted preventive measures . Nevertheless, despite all the effort taken by the Ministry of Health through schools, under 18 were the least informed on this condition followed by the elderly. In fact, age groups >50 years had similar results to Chinese and Egyptian residents . An alarming finding showed that Lebanese health care providers scored lower than nonhealthcare providers. According to a survey on the perception and knowledge of health care workers, this discrepancy can be explained by the fact that some are experts in other domains than infectious diseases . This finding imposes that awareness should target all categories of citizens. Two distinct websites should be created; one for the health care providers and one for the non-healthcare providers. Television channels should broadcast animated recommendations targeting the children. Areas of low knowledge should be targeted by posting on the road billboards and phone message notifications. Knowledge is a requirement for establishing prevention beliefs, developing positive attitudes, and encouraging positive behaviors toward the disease . This was reflected in the practice of most of the participants in the survey. Nevertheless, even though 98.6% of the participants agreed that SARS-CoV-2 is transmitted through sneezing or coughing droplets, 17.1 and 1.7% sometimes and never cover their mouth after sneezing or coughing in public places, respectively. Moreover, 14.6% sometimes wear a mask in crowded places and 6.1% never did. Being sick also did not trigger wearing a mask in 13.7% of the respondents. Consequently, the virus can be transmitted easily by this minority since it is highly contagious. Even though the U.S. National Institutes of Health does not recommend the use of any agent as prophylaxis against COVID-19 , 76.1% increased their consumptions of fruits and vegetables, 59.5% consumed vitamin C supplements, 56.1% did exercise on a daily basis, and 47.6% avoided fast food in an attempt to increase their immunity and consequently decrease the risk of acquiring the virus. These lifestyle modifications are a necessity to avoid most diseases including diabetes and cardiovascular diseases. According to the Ministry of Health, patients with symptoms should contact the ministry through the hotline or call the Red Cross to be transferred to the assigned hospital. Moreover, the Lebanese Order of Pharmacists stated that anyone with fever, shortness of breath, or cough, or had been in contact with COVID-19 patients, or had been outside the country is not allowed to enter the pharmacies and has to refer to the assigned hospitals by the Ministry of Health. With all these restrictions, 10.5% still would seek pharmacists or physician clinics in case of having COVID-19 symptoms which puts the health care provider along with staff, waiting patients, and possible pediatrics at risk of developing the disease. Furthermore, 11.2% will choose to selfmedicate instead of medical referral. This is alarming, especially that 10% will have a tendency to take hydroxychloroquine, if it is available at home. The National Institutes of Health stated that there isn't enough data to recommend or ban the use of hydroxychloroquine or chloroquine for the treatment of COVID-19 . In addition, hydroxychloroquine may cause lifethreatening side effects, such as fatal cardiac arrhythmias, which is known by only 38% of the questioned participants. --- CONCLUSION AND RECOMMENDATION This study showed that there is a fair knowledge and positive attitude toward COVID-19. However, more awareness campaigns should be conducted as new cases were reported. The personnel in charge should develop a plan in a way that limits the transmission of this disease once quarantine is lifted. Face masks, should not be put by choice, enforcing the mandatory wearing of a face mask in public should be a must. Enforcing laws, including the allowance of a limited number of personnel in a supermarket and shops based on its area, could also provide the required social distancing and thus limits the spread of the virus. Finally, proper awareness should not only be restricted to social media platforms nor Televisions; but also the Ministry of Public Health should come up with a focus group to target both educated and uneducated, extreme age groups, and poor sanitary areas of the country. --- DATA AVAILABILITY STATEMENT The datasets presented in this article are not readily available because it contains some confidential information. Requests to access the datasets should be directed to [email protected]. --- ETHICS STATEMENT Ethical review and approval was not required for the study on human participants in accordance with the local legislation and institutional requirements. The patients/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.

Objectives: Distinct measures were adopted in Lebanon to prohibit the spreading of SARS-CoV-2. These actions provide positive results only if the population chooses to be compliant. Aim: Accordingly, this study aimed to reflect the Lebanese population adherence by determining their level of knowledge and practice during this pandemic. Method: A cross-sectional online survey was performed in April 2020. It involved 410 volunteers from the main 5 Lebanese districts. The questionnaire was divided into 3 parts; sociodemographic, knowledge, and practice. A score was calculated out of 18 points to evaluate the knowledge of the respondents. The last 8 questions reflected the participants' precautionary methods during the pandemic. Descriptive statistics and one-way analysis of variance tests were conducted using SPSS version 20.The overall correct rate of the knowledge questionnaire was 75%. Survey completers of extreme age groups (under 18 and >44), elementary education level, and medical occupation displayed the least level of knowledge compared to other groups (p < 0.05). Most of the participants showed proactive practices to protect themselves against COVID-19. They covered their mouths (81.2%), threw the used tissues (93.7%), and washed their hands (66.6%) after sneezing or coughing. Moreover, they wore face masks if they were sick (59%) or in a crowded place (79.3%). Concerning Hydroxychloroquine, 10% claimed that they would take it if they have COVID-19 symptoms.This survey sheds the light on the fact that one mandatory measure does not fit all the population; there must be a specialized method of prevention for each profession, age group, and area of the country to prevent the outbreak of COVID-19.

Background National Report on Nutrition and Chronic Diseases of Chinese Population in 2015 showed that the estimated prevalences of current tobacco smoking, harmful drinking, and obesity among adults were 26.6%, 9.3%, and 11.9%, respectively [1]. The preventable risk factors such as smoking, harmful drinking, and unhealthy weight have contributed to the accelerated rise in non-communicable chronic diseases in China [2]. Chronic diseases are dominant drivers of health care use and spending [3]. The economic burden of chronic diseases was estimated to be $7.7 trillion from 2010 to 2030 in China [4]. The difficulty of estimating the effect of smoking status on healthcare utilization has led to conflicting findings in the general population. Many studies reported that current and former smokers are associated with higher outpatient utilization than those who never smoked [5][6][7][8][9]. Interestingly, some studies found that current smoking has an association with fewer outpatient visits [10][11][12]. Therefore, more research is necessary to examine the relationship between smoking and outpatient utilization. The effect of smoking status on inpatient care utilization was found to be similar across a number of studies. Smoking status is associated with higher hospitalization for current and former smokers compared to never smokers [7,10,11,13,14]. The findings are mixed on alcohol consummation affecting health care utilization. Some studies presented that problematic alcohol users are associated with higher healthcare utilization, including outpatient visits, emergency services, and hospitalization compared to abstainers [15,16]. In contrast, many studies found that alcohol users are associated with lower health care use than abstainers [14,[17][18][19][20]. Several studies have examined the associations between unhealthy weight and healthcare utilization. For example, some researchers found that overweight and obesity are positively associated with primary care utilization [21][22][23]. Moreover, overweight and obese people are significantly more likely to be hospitalized [24][25]. Furthermore, underweight patients increase the likelihood of hospitalization and visiting the emergency room compared to patients with higher body mass index [26]. Most studies reported the effects of smoking, drinking, and unhealthy weight on healthcare utilization using cross-section data. The main estimation methods included logistic regression, Poisson regression, negative binomial regression, and hurdle regression [12,13,15,16,21,24]. However, the choice variables of health-related behaviors are most likely to be considered endogenous in regression equations. One of the most frequent estimation techniques to address endogeneity bias in cross-sectional data is instrumental variables [27]. Due to the increased availability of longitudinal data, panel data models offer a solution to the endogeneity problem without resorting to instrumental variables. Panel data models can be used to control for time-constant unobserved heterogeneity and omitted time-varying variables [28]. To our knowledge, minimal information is available on health-related behaviors, unhealthy weight, and healthcare utilization in China [8,29]. Therefore, the objective of this study is to ascertain the effects of smoking, regular drinking, and unhealthy weight on healthcare utilization in China using a five-waves of balanced panel data set. This knowledge will allow us to better understand the underlying causes of healthcare utilization by smoking, regular drinking, and unhealthy weight, thus helping health policy decisionmakers make healthcare resources allocation decisions. --- Methods --- Data source The database used in this study was obtained from the China Family Panel Studies , launched by the Institute of Social Science Survey of Peking University. The CFPS is a general-purpose, nationally representative, longitudinal survey, including community, family, adult, and child questionnaires. The survey sample was drawn from twenty-five provinces and their administrative equivalents, representing 95% of the Chinese population. A multistage probability proportional to size sampling was used for the survey. The CFPS respondents are followed every two years, and the first wave in 2010 covered a sample of 14,798 households with 33,600 adults , and four waves of full sample follow-up surveys in 2012, 2014, 2016, and 2018 covered 13,315 households with 35,719 adults, 13,946 households with 37,147 adults, 14,019 households with 36,892 adults, and 14,241 households with 32,669 adults, respectively. More details about the CFPS are available from Xie and Hu [30]. Only the adults responding to the full-length questionnaires in all waves were selected. The final analytic sample consisted of 63,260 adults in all the five waves of data collection. --- Dependent variables The current study measured healthcare utilization from two perspectives: outpatient care utilization and inpatient care utilization. Outpatient care utilization is a dummy variable that equals 1 if the individual self-reported an outpatient visit in the last two weeks and 0 otherwise. The CFPS question supporting this variable was: 'Did you visit a doctor in the past two weeks?'. Inpatient care utilization was also set as a dummy variable that equals 1 if the individual self-reported being hospitalized in the past twelve months and 0 otherwise, based on the CFPS question: 'Have you been hospitalized in the past twelve months?'. --- Independent variables First, each adult was asked: 'Have you smoked cigarettes in the past month?' and 'Have you ever smoked?'. According to these two questions, all adults were divided into three mutually exclusive smoking-status groups: non-smokers, current smokers, and former smokers. Second, regular drinking was defined as a dummy variable. The CFPS question supporting this variable was: 'Have you often drunk alcohol more than 3 times a week?'. The adults answered 'Yes' coding as 1 and 'No' coding as 0. Third, a person can be classified as unhealthy weight based on body mass index . The BMI was calculated according to the CFPS questions: 'What is your height ?' and 'How much is your weight ?'. For further analysis, the BMI was categorized into the following four groups according to World Health Organization Asian BMI cut points: underweight , healthy weight , overweight , and obesity [31]. Last, to control the possible effect of confounding factors, control variables were selected based on the emerging behavioral model of health services use, and this model requires longitudinal study designs [32]. Predisposing factors in this study were age, gender, marital status, and urban residency. Enabling factors included household incomes, medical insurance, educational attainment, and employment status. Perceived need factors were represented by self-reported health status and chronic disease. Definitions of all variables are provided in Table 1. --- Statistical analysis The present study estimated the impact of smoking, regular drinking, and unhealthy weight on healthcare utilization employing logistic regression models and assumes that there is an unobserved variable 𝑦 𝑖𝑡 * that called the latent variable. 𝑦 𝑖𝑡 * = 𝑥 𝑖𝑡 ′ 𝛽 + 𝜇 𝑖 + 𝑒 𝑖𝑡 where 𝑥 𝑖𝑡 is a vector of independent variables for an individual 𝑖 at time 𝑡, 𝛽 is the coefficient vector, 𝜇 𝑖 is the unobserved and individual-specific heterogeneity, and 𝑒 𝑖𝑡 is a time-dependent error term. There is a binary variable 𝑦 𝑖𝑡 where 𝑦 𝑖𝑡 = 1 𝑖𝑓 𝑦 𝑖𝑡 * > 0, 𝑎𝑛𝑑 0 𝑡ℎ𝑒𝑟𝑤𝑖𝑠𝑒 where 𝑦 𝑖𝑡 =1 indicates that the individual visited outpatient care . Then, the probability that 𝑦 1𝑖𝑡 =1 is 𝑃 = 𝑃 =𝑃 =𝑃 = 𝐹 It assumes that the error term 𝑒 𝑖𝑡 is logistically distributed and we arrive the logistic regression model: 𝑃 = 𝑒 𝜇 𝑖 +𝑥 𝑖𝑡 ′ 𝛽 1+𝑒 𝜇 𝑖 +𝑥 𝑖𝑡 ′ 𝛽 𝑃 = 1 1+𝑒 𝜇 𝑖 +𝑥 𝑖𝑡 ′ 𝛽 Furthermore, the assumption that unobserved heterogeneity 𝜇 𝑖 is uncorrelated with 𝑥 𝑖𝑡 produces the random effects logistic model. However, uncorrelated heterogeneity is not a very realistic assumption. When 𝜇 𝑖 is correlated to 𝑥 𝑖𝑡 , then it is called the fixed effects logistic model [27,33]. Before considering the panel structure, the current study first used a pooled logistic model to analyze healthcare utilization. And then, this study treated the data as panel structure and employed the random effects logistic model. A likelihood ratio test could choose between pooled and random effects logistic model. Last, this study used the fixed effects logistic model, and Hausman's specification test could provide a way to compare the fixed effects and random effects model. --- Results A descriptive summary of selected variables over time is displayed in The results of the logistic regression analysis are showed in Table 3 as odds ratios. An odds ratio greater than one indicates a positive effect on the likelihood of using outpatient care; an odds ratio less than one indicates a negative effect. Column of Table 3 presents factors affecting outpatient care utilization using the fixed effects logistic model. The results presented that smoking status was related to the use of outpatient care. Current and former smokers were approximately 1.9 times and 2.0 times more likely to use outpatient care compared to those who never smoked . Moreover, compared to current smokers, former smokers increased the odds of using outpatient care . People who regularly drank alcohol were about 0.8 times less likely to use outpatient care than non-regular drinkers . Obese people were associated with a 25.8% increase in the odds of using outpatient care than healthy weight people . Irrespective of the estimation method, current and former smokers increased the likelihood of using outpatient care than never smokers. In contrast, regular drinkers decreased the likelihood of using outpatient care than non-drinkers - of Table 3). Hausman's specification test is not significant at 5% level: 𝜒 2 =1268.40, 𝑝=0.0000 Asterisks *** indicates statistical significance at the 1% level, ** at the 5% level. Table 4 shows the regression analysis results for the pooled logistic, random effects logistic, and fixed effects logistic model . Based on the likelihood ratio test and the Hausman's specification test, the fixed effects estimation was the preferred method for panel data in this study. Column of Table 4 presents factors affecting inpatient care utilization using the fixed effects logistic model. The results showed that compared to those who never smoked, current and former smokers increased the likelihood of being hospitalized by 42.2% and 198.2%, respectively . Furthermore, compared to current smokers, former smokers increased the odds of being hospitalized . People who regularly drank alcohol decreased the probability of being hospitalized than non-regular drinkers . Compared to healthy weight people, overweight and obese people were more likely to be hospitalized . Irrespective of the estimation method, former smokers increased the likelihood of being hospitalized than never smokers. In contrast, regular drinkers decreased the likelihood of being hospitalized than non-regular drinkers - of Table 4). --- Discussion The aim of this study was to ascertain the effects of smoking, regular drinking, and unhealthy weight on healthcare utilization in China using a five-waves of balanced panel data set. First, this study found that among Chinese adults, current and former smokers were more likely to use outpatient and inpatient care compared to those who never smoked. The explanation is straightforward. Smoking has adverse health effects and causes acute and chronic diseases and, therefore, may require more healthcare utilization. Moreover, the current study found that compared to current smokers, former smokers increased the odds of using outpatient and inpatient care. Former smokers use more healthcare services simply because many of them stopped smoking due to health concerns and serious illnesses they experienced. Previous studies found that smokers commonly bear higher healthcare costs than those who never smoked [34][35][36]. China successfully achieved universal health insurance coverage, and approximately 95% of the population was insured in 2011. However, the sources of financing health insurance plans are no different between smokers and nonsmokers. Therefore, people who never smoked may subsidize the health care costs of smokers. The Chinese government should consider raising taxes on tobacco, which not only reduces the smoking prevalence but also increases revenues. These increased revenues can financially sustain public health insurance plans. Second, the current study found that among Chinese adults, people who regularly drank alcohol were less likely to use outpatient and inpatient care than non-regular drinkers. The result is consistent with findings for American drinkers [19], rural Liberia drinkers [20], and German drinkers [37]. Three possible reasons may explain the inverse relationship between regular drinking and healthcare utilization: firstly, people who regularly drink alcohol may not care about their health status or maybe risk-tolerant individuals [22,38]. Secondly, the adverse health consequence of drinking may appear several years later. Lastly, alcohol is frequently used by men in China, and Chinese cultural norms encourage social drinking, especially with friends and family [39]. Non-drinkers in such a cultural or social situation may be related to alcohol allergy and intolerance, and hence they may use more healthcare services [40]. It is worth noting that people who regularly drink alcohol experience omitted or delayed healthcare, leading to serious health problems and higher healthcare costs on society [22]. The Chinese government should conduct screening and brief advice programs delivered by primary level care, reducing the burden of diseases due to regular drinking. Third, the present study found that among Chinese adults, obese people increased the likelihood of using outpatient and inpatient care than healthy weight people. In addition, overweight people were more likely to be hospitalized than healthy weight people. Higher morbidity associated with being overweight and obesity has been observed for hypertension, diabetes, coronary heart disease, stroke, and cancers [41]. Hence, higher healthcare utilization may be needed to treat these conditions. The Chinese government should promote a national public education campaign to encourage overweight and obese people to maintain a healthy weight, improving their health status, and saving considerable healthcare costs. There are several limitations that should be emphasized. First, this study measured outpatient care utilization based on the question: 'Did you visit a doctor in the past two weeks?', and it might underestimate the utilization of outpatient care among Chinese adults. Second, self-reported smoking status, drinking status, height, and weight were used in this study, thus sharing the limitations of all self-reported data: recall bias and unreliable under pressure. Third, this study could not exclude ex-drinkers from the group of nonregular drinkers. If ex-drinkers stopped drinking due to severe illnesses, it might affect the inverse association between regularly drinking and healthcare utilization. Last, when the respondents without change of healthcare utilization decision in all five waves do not contribute to the likelihood, the fixed effects model lost many pieces of information. Therefore, the estimated results would be less precise and having larger standard errors. --- Conclusions The purpose of this study is to empirically ascertain the effects of smoking, regular drinking, and unhealthy weight on healthcare utilization in China. The empirical findings suggest that among Chinese adults, current and former smokers were more likely to use health care compared to those who never smoked. Moreover, obese and overweight people increased the likelihood of using health care than healthy weight people. Interestingly, people who regularly drank alcohol were less likely to use outpatient and inpatient care than non-regular drinkers. These results may have important implications for supporting the government to make healthcare resources allocation decisions. --- List of abbreviations CFPS: China Family Panel Studies; BMI: Body Mass Index; LR: Likelihood Ratio; OR: --- Odds Ratio --- --- --- --- --- University Open Research Data Platform repository, https://opendata.pku.edu.cn/dataset.xhtml?persistentId=doi:10.18170/DVN/45 LCSO. --- Competing interests The authors declare that they have no competing interests. --- Authors' Contributions YC designed the study and developed the methodology. CL led the data analysis and wrote the manuscript. ZM made important contributions to the revision of the manuscript. All authors read and approved the final manuscript.

The preventable risk factors such as smoking, harmful drinking, and unhealthy weight have contributed to the accelerated rise in non-communicable chronic diseases that are dominant drivers of health care use and spending in China. This study aimed to ascertain the effects of smoking, regular drinking, and unhealthy weight on healthcare utilization in China.The database used in this study was obtained from the China Family Panel Studies (CFPS), and the final sample consisted of 63,260 adults in all the five waves of data collection. The fixed effects logistic regression model was used for the analysis.The current study found that among Chinese adults, current and former smokers were more likely to use outpatient and inpatient care compared to those who never smoked. Former smokers increased the odds of using outpatient and inpatient care than current smokers. Moreover, compared to healthy weight people, obese people increased the likelihood of using outpatient and inpatient care, and overweight people were more likely to be hospitalized. In contrast, people who regularly drank alcohol were less likely to use outpatient and inpatient care than non-regular drinkers.This study ascertained the effects of smoking, regular drinking, and unhealthy weight on healthcare utilization in China using a five-waves of balanced panel data set. These results may have important implications for supporting the government to make healthcare resources allocation decisions.

Introduction Stroke is a leading cause of disability across the developed world, affecting an increasing number of people of working-age [1,2]. In Sweden, around 25 000 people experience a stroke each year, and 20% are under the age of 65 years [3], placing special demands on rehabilitation and re-integration into society [4]. After stroke, community re-integration and participation are goals in many policy documents, but also complex processes that require individual strength, social support, help from health care professionals as well as a compassionate general public [5][6][7]. Physical and cognitive deficits, or emotional challenges like fatigue are common and can be seen as difficult barriers to overcome [8][9][10]. In a long-term perspective, these impairments may still have an impact on participation in everyday life, even for people with mild stroke who are under 65' [10,11]. An individual´s experience of involvement in an activity is central to the concept of participation [12]. The following definition of participation has been used for this study; "participation occurs at the intersection of what a person can do, wants to do, has the opportunity to do, and is not prevented from doing in the world where the person seeks to participate" [12]. It is a subjective and individual experience that needs to be understood from a personal perspective. Participation is also formed in a social context and influenced by numerous, partly synergetic factors, which makes it hard to fully comprehend without taking a qualitative approach [5,11]. Although the literature on stroke rehabilitation is large, not many papers study long-term consequences and experiences held by people of working-age [13,14]. Many individuals of working-age will live for a long time after stroke, with major responsibilities during a demanding phase of life [4]. In addition, there is an increasing incidence of stroke in younger people in the Western world [15]. Therefore, more knowledge about long-term participation based on subjective experiences held by individuals with stroke, is needed. This can help finding out how effective and sustainable interventions aiming to meet the specific needs of this group many years post-stroke can be developed [16]. In this article, we seek to understand how participation was experienced in everyday life, by individuals of working-age, 7-8 years after stroke. The aim was to obtain a deeper understanding of how participants coped in everyday life, and how they reflected upon their own participation. --- Materials and methods This study adheres to the consolidated criteria for reporting qualitative research guidelines [17]. It is based on in-depth interviews about views of participation in everyday life among individuals 7-8 years after a first time stroke. The research team consisted of a female doctoral student, trained as a social worker , a male University Lector and PhD, trained as a social worker and a female Professor, MD and PhD . All authors have prior experience and training in the field of qualitative research. --- Sampling and participants Participants were recruited from the extended Stroke Arm Longitudinal Study at the University of Gothenburg [18,19]. They were patients with stroke at Sahlgrenska University hospital between February 4, 2009 and December 2, 2010. All interviews were conducted in 2017, thus 7-8 years had passed since participants had their stroke. Inclusion criteria were: first time stroke according to International Classification of Diseases codes 161 intracerebral haemorrhage, or 163 ischemic stroke, living within 35 km of the hospital, working-age , sufficient verbal and memory ability to understand the questions and being able to take part in an interview. To gain broad information about the research questions, eligible participants were purposively selected with varying age, gender, stroke severity, and subtype. The list of eligible participants now included individuals with a variety in personal characteristics and were at this stage randomly selected to be contacted by phone. They were asked if they wanted to take part in an interview about their lives after stroke. When 15 people had confirmed an interest in the study they were sent a letter with information about the purpose of the study, a consent form and brief information about the research team as well as the experience of the interviewer . A week later, a researcher rang back to invite participants for an in-depth interview. Subsequently, four people withdrew their interest, and a total of 11 participants were included in the study. Data retrieved from medical charts and information about occupation and living situation from the interviews are presented in Table 1. All participants were independent in activities of daily living and lived in ordinary housing without home service. --- Data collection The interview guide and potential areas and questions to include were discussed and developed in cooperation with a patient representative from the Swedish Stroke Association. When raising issues and research priorities held by disabled people's organizations, the research agenda of academics can be more relevant thanks to their contribution of unique insights and understanding [20]. The patient representative stressed that people after stroke might find it difficult to cope with too much social input at the same time. In collaboration, questions about possible differences concerning social life, before and after stroke were added, as well as a general question about how social life was perceived. The question that people might think differently about their lives after stroke was also formulated together with the patient representative. After this, the interview guide was pilot tested on two individuals with long-term stroke who agreed to participate as partners in research in the current study. One of the partners in research had had a stroke in the right hemisphere, with typical residual physical symptoms and the other partner had gotten a stroke in the left hemisphere with aphasia. However, none of the participants included in this study were diagnosed with aphasia. Further revisions were made after input from the partners in research and subsequently a final version of the interview guide was developed. One of the partners in research was interested in conditions at work after stroke and how work tasks were perceived after stroke, hence questions about that were added. The other partner was interested in health issues after stroke, and the three last questions in the "Health" section were constructed with input from her. All interviews were individual and conducted face-to-face by the first author , Master in Social Sciences , trained and experienced in interview methods. The interviews began with opening questions concerning demographics and living situation. After that, questions were open-ended and focused on areas relevant to the research questions: how participation was experienced in different life situations 7-8 years after stroke, and how participants' coped in everyday life. Follow-up questions were flexible depending on participants' answers, and therefore the interviews were open with rich content. The interviewer encouraged participants to speak freely, which allowed additional thoughts and topics to emerge. As data collection carried on, a few questions were added in order to target findings that needed further attention. The interview guide can be found in its complete form as supporting information in both English and Swedish. --- Mobility No mobility aid 11 --- Stroke subtype Ischemic stroke 8 Intracerebral hemorrhage 3 --- Lesion side Left 4 Right 4 Bilateral 3 --- NIHSS at admission Very mild 7 Mild 2 Moderate 0 Severe 2 --- mRS at discharge Functionally independent 6 Functionally dependent 5 --- Vocational status Working full-time 8 Working part-time 1 Unemployed 1 Participants seemed enthusiastic and/or interested in the topics that they spoke about, indicating that areas covered during the interview guide were perceived as interesting. Clarifications were used at all times when the interviewer was uncertain about the meaning of what was being discussed. For example; "Did I understand you correctly, you think that being able to work is a high priority in your life?" All interviews were held from December 2016 to February 2017, and took place in a quiet room at the Sahlgrenska Academy. Upon request, two participants were interviewed in their homes. Interviews lasted for between 36-65 minutes and were recorded and transcribed verbatim. After each interview field notes with spontaneous reflections about the interview were taken. After 11 interviews, no more emerging findings or meaningful information about the research questions were obtained. Therefore data was considered saturated and no additional interview person was included. --- Parental leave 1 --- Occupations --- Ethical considerations The study followed the Helsinki declaration and was approved by the Regional Ethics Committee in Gothenburg with an additional application, Dnr: T801-10. Participants gave informed written and verbal consent prior to the interview. Ethical problems or dilemma were not identified during the course of this study [21]. --- Analysis Interview data was transcribed verbatim, then imported and sorted in the qualitative data analysis programme NVivo [22]. Data was analyzed with inductive thematic analysis, following established guidelines as described by Braun and Clarke [23]. Thematic analysis is a commonly used method for identifying, analyzing and reporting themes within data. Often it goes further than this, and interprets various aspects of the research topic [24]. To become familiarized with the data, all interviews were read and re-read, enabling patterns and initial meanings to emerge inductively. All codes that could be potentially interesting for the research questions were marked, using color codes. Mind-maps were used to get an overview of all codes, and to see how they could be merged into themes. This approach complemented the analysis in NVivo, and was used to visualize and simplify the process. The next phase involved refining themes and subthemes. In this phase, some subthemes were collated into one, and minor themes, for example "leisure activities" and "views about hospital care" were removed due to inconclusiveness. Themes considered meaningful to the research questions were kept. Focus continuously moved from the whole to parts of the text to ensure validity of the themes in relation to the entire data set. This process of refining themes was carried out in dialogue between the first and second authors until themes seemed to represent the dataset as a whole and consensus was reached. Internal homogeneity and external heterogeneity were considered in this phase [25]. The contents of each theme were carefully re-read, as well as each theme in relation to the others, to ensure they were not overlapping [23]. In the end, analysis and results were discussed again, between all three authors, ensuring validity of the themes in relation to the data set. A part of the coding process is illustrated in Table 2. In the interviews, participants were asked to describe at least one situation in everyday life when they felt they were successfully participating. As the answers to this question functioned as a complete theme to begin with, it was defined beforehand and thus deductively analyzed and summarized. This theme was labelled "Participation after stroke narratives" and is presented as an introduction in the results section. --- Results Participants' characteristics and demographics are shown in Table 1. Through the inductive thematic analysis used, four principal themes emerged: 1) Returning to work after stroke, 2) Working life 7-8 years after stroke, 3) Social life 7-8 years after stroke, 4) A state of reorientation in life. The theme "Participation after stroke narratives" is presented as an introduction to give an overall picture and better understanding of the results. Fig 1 is an illustration of all themes that are presented. --- Participation after stroke narratives When participation was described in everyday life, these situations were described as engaging and meaningful. Being included in the wider community and having a sense of purpose, predominantly when interacting with others, were factors that these narratives had in common. Being involved in social situations was described as an important part of enjoying and achieving a sense of meaning in life. Participants also wanted to help others, and to be seen and heard by others. Some participants highlighted outdoor experiences with beautiful scenery, birds singing or walks in nature when describing involvement in life after stroke. Taking part in quiet and calm activities together with friends or their immediate family were stated to be of higher importance now than before stroke. When participation was described in a work-related context, participants wanted to play an active role in solving problems and being goal orientated together with their colleagues. Participants also wanted to feel that their skills and competence were appreciated and asked for at work. --- Returning to work after stroke Handling post-stroke consequences at work was described as a process where participants first had to understand their post-stroke limitations and how these had an impact on their actual work situation. Then, they needed to communicate these problems and in cooperation with people at work find new ways to manage their work tasks, or working hours. If the changes they needed couldn't be made or weren't feasible, participants had to change workplaces or work tasks. This was described as emotionally challenging and sometimes accompanied by feelings of guilt or inferiority. "Then it's also that I have to realize, mostly for myself. . .that I can't process information the same way anymore. And that's taken a very long time for me to accept and understand. So it's an ongoing process for me to tell others when I'm feeling tired: "I'm very tired now and this will have to wait until tomorrow." Participants described understanding and supportive leadership as highly important for regaining trust in their own working capacity. Especially when coming back after sick leave, support from the employer had been significantly important in the process of adjusting to new working conditions after stroke. "I'm not scared anymore, either to say stop, this is too much. . .Or having understanding bosses has played a very big role. They have built up my self-confidence, they have given me what I need. Finding people who believe in you and validate you is incredibly important." After stroke, some participants had to change jobs and try multiple workplaces before finding something that suited them. This could be because, for example, they could no longer manage lengthy meetings, too much stress, or working night shift. At some workplaces employers had not been willing to make changes that were needed, and therefore the person with stroke could not return to work after stroke. --- Working life 7-8 years after stroke At time of the interview, participants said that working was a very important part of their lives. Being somewhere where they felt valuable was expressed as significant for the feeling of participation, and for their self-esteem. When participation at work was described, the opportunity to make personal choices about working procedures and to have control over how to solve problems were important. "Independence and opportunity to choose are important. Self-determination. I can decide for myself how I'm going to organize my day. Being able to be creative, there isn't just one solution, I get to find my own solutions. So I've been able to see a positive effect from the stroke; that sometimes I start to think in a completely different way. I can think a little outside the box, and I think that's an obvious advantage." Suddenly becoming very tired or unfocused and unable to process information were common everyday consequences after stroke. These problems were handled by taking small breaks, or napping, whenever this was accepted at the workplace. Some stressed that they needed flexible working conditions that enabled working from home or working with breaks. Another strategy was to rest or sleep before or after work. " Yeah, if I know that I have long board meetings, I usually think that it is good if I sleep now, because then I'm better rested. Or if I'm going to work at festivals and stuff, or late nights. Then it's good if I sleep beforehand." An awareness of mind and body signals for overtiredness, and to stress less were common everyday strategies for a successful working life. Participants had learnt that if they chose to ignore such signals, the tiredness would immediately take over, and some said they would also experience irrational emotions, like fear or sadness. --- " The hardest bit is that there isn't any slow decline for when you get tired, but rather, you get tired and it's like a door slamming shut immediately. And I do that almost every day at work, I just fall asleep for little tiny moments." Another reason for being more careful and taking it easier at work was to avoid recurrent stroke. Some participants had thought about reducing their working hours or changing from night-to dayshifts, but such decisions also depended on their economic situation. Participants who experienced a deteriorating working memory used notes to avoid forgetting tasks, however, this was not described as a problem. In some situations, having problems finding the right words were experienced as frustrating or embarrassing. Common strategies to handle such situations were to use another word or to wait for the right one to pop up. Participants stressed that these impairments got worse when they felt stressed or had a lack of sleep. Some also expressed uncertainty about whether their abilities had changed after stroke or not. For example, they were not sure if their memory had been better before stroke or if they were just more tired now. "That's a good question. . .I don't know . I take it much easier now. I had a high pace before. Both at work and in my free time." "I've always had a terrible memory, so there's no real difference now. . ." The view of their professional role and approach to work had also changed 7-8 years after stroke. Several expressed that they now valued personal growth and enjoying being at work more than pursuing a career. --- " I was very career oriented before, I wanted to chase after jobs. My career for me has developed towards the things I am good at, rather than chasing after jobs. What I was like before probably wasn't that good, I would go into stress cycles with lots of work tasks. . ." Most participants said they were content with a more relaxed working life, but some felt ambiguous about this; --- " I'm not always the best at taking it easy. There's a discrepancy between what I want to do, and what I can actually do, that I haven't really wanted to admit to. Because I was often the one who went at it at 200% and then was forced suddenly to back off to 50%." --- Social life 7-8 years after stroke Participants explained that they prioritized spending time with close family and friends to a higher extent 7-8 years after stroke. As life was considered more vulnerable now, significant relationships were valued to a higher degree. Some preferred to socialize with fewer people at the same time and tried not to engage in too many social situations. They put their social energy on substantial, close relationships rather than on strangers or casual acquaintances. Several chose to describe an example of social participation that was about sharing experiences of difficulties in life. Feelings of being involved emerged from actively listening and talking about each other's experiences. "When I've had the opportunity to meet others with their problems, then I feel like we have something in common. . . that this won't affect us but rather we are looking to the future instead. And I do that because I get pushed to, and I maybe give others a push to be more positive." Participants stated that they appreciated to be alone at times. In order to rest from social interactions, participants engaged in calm activities like reading a book, listening to music or walking their dog. Some participants also needed to rest before taking part in social activities that they wanted to participate in. "This is a residual symptom from the stroke, that you sometimes just don't have the energy for others. . .. I socialize with people when I want to, but I don't have the constant need to be around others. I can actually think "God, how lovely, no-one to talk to, hooray!" Commonly expressed reasons for being less socially active were; feelings of tiredness or fatigue, difficulties focusing on more than one conversation at the time, or too many distractions. Participants described that their experienced participation was enhanced when they didn't feel overloaded by input from their surroundings. Too much noise, colors, or people could interfere with their sense of being in control, for example. --- "I still go out and do things, but when I hang out with people, and most often when I'm a little tired, I have a really hard time in being able to distinguish what people are saying. . . But I have now pretty much accepted it and I'm like yeah yeah, this is kinda nice, so sometimes I just switch off and let it be." Participants stated that people generally didn't seem to understand the concept of fatigue, and because of that, they sometimes found it hard to withdraw from social situations when they needed to. --- "They can understand stuff they can see. E.g. your foot is affected if it doesn't quite keep up when you walk. But mental fatigue is something people don't get. "Why are you so tired, why don't you want to go out with us?" It's not that I don't want to, but it's my fatigue, I really can't go." Some participants said that helping others had become more meaningful after stroke and that they thought of themselves as more compassionate now. There were also those who felt more emotional after stroke, they cried or laughed more easily, and this was considered as something positive. --- A state of reorientation in life Participants had, 7-8 years after stroke, reached a state of acceptance in everyday life. They were now used to and comfortable with how their daily routines had changed. It was explained that, over the years, they had found strategies to address consequences after stroke in daily life and that they felt well accustomed to their new way of living. Several mentioned that through consultations with a psychologist they had been taught how to relate to, for example tiredness or illogical emotions, in a way that made situations easier to handle. Most participants said that they valued life differently after stroke. Despite not being fully recovered, participants expressed a gratitude for being alive and having coped so well. As a result of this insight some had changed priorities in life. They reflected more about what to engage in and how to prioritize their time and energy. " You should be quite humble about life, because it can disappear very fast. . .Some pass away, some become disabled for the rest of their life.. and I just feel wow! So I'm am incredibly thankful that I have got through as well as I have, yeah?" "I think that it's impossible to not gain perspective on life. Like, in the first instance, that you're mortal! And that things can go very very fast. . . I have more empathy now. Because there is no other way to understand it until you are sitting there yourself." Participantss were thankful for the new insights they had gained through the process of dealing with life after stroke. Some explained that their personality had gradually changed for the better, and that they thought of themselves as calmer, more thoughtful, or more caring. Reaching acceptance about the lack of control one has over life was described as a part of this process. " Yeah, I'm calmer now . . . I am a little more thoughtful, much more objective. It's like I've got access to other sides of myself. Focused on solutions. I wouldn't want to be without the experiences I've had, but the _way_ I got them, I could do without!" As a result of feeling more vulnerable, participants stated that they took better care of themselves, both physically and emotionally, after stroke. They managed stress more effectively. They tried to eat and sleep better and some had cut down on cigarettes and drinking. Because of these lifestyle changes, some said that they, 7-8 years after stroke, were healthier compared to before stroke. Participants explained that they felt too tired after work to engage in physical exercise. Lack of motivation was also mentioned as a barrier to be physically active, and only one person had found a form of training that they enjoyed. " No, when you get home at six or seven at night during the week, you don't have much time for working out. You shower. . . Then you are tired again, you're always on the go at work. . ." --- Discussion Participation in everyday life is a complex area to investigate [7] with subjective aspects that need to be taken into account when they are described and evaluated. Personality, preferences, environmental factors, and personal health conditions are examples of important areas that can impact on how a person describes their participation [26]. However, our results showed that in spite of differences, obvious similarities were seen in participants' reflections about participation in the activities of their choice. In line with previous findings [5,7,27], our results showed that participating in self-selected activities enhanced feelings of belonging, purpose, personal identity, and confidence post stroke. These feelings along with the ability to help others, using one's competencies to solve problems and to be seen and heard by others were described in the narratives about participation. Spontaneously, participants often chose a social or work-related situation when describing their participation. Similarly to a previous interview study [5], having the ability to choose and decide about activities made participants feel that they were in control, and thus they found it easier to cope in everyday life. Previous research [28] has suggested that loss of meaningful life roles were related to decreased confidence and of "being a lesser person". In the present study, personal expectations of one's professional role had changed, but participants were no longer frustrated or depressed about having somewhat different career goals [27]. In our study, cognitive impairments and fatigue related to stroke were the most commonly expressed reasons for altering daily routines by adapting to accompanying symptoms. Through these adaptations participants explained that their lives now worked well, but nevertheless, participation in daily life was considered limited to some extent. Although long-term follow-ups about post stroke fatigue are few, it seems that there can be long lasting impairment even after a mild stroke [29][30][31]. Similarly to another study [32] this study found that cognition and language problems were closely related to fatigue, which further impacted on work and social situations. It was clear that participants had to choose what activities to spend their energy on, and that being able to work full-time was prioritized before social and leisure activities. Social relations were fewer but closer now than they had been before stroke, which was consistent with previous research [6,10]. In the present study, the majority of participants worked full-time . Work contributed to increased self-esteem, and their job was a meaningful part of their identity [33][34][35]. In the process of getting back to work, support from employers and well-functioning communication about how work conditions could be adjusted had been highly important. In some cases there was a lack of support, which had made participants feel lonely and vulnerable in the returning to work process. These findings strengthen previous quantitative research [34,36] which found an association between the level of support and return to work after stroke. Rehabilitation professionals could possibly have a role in the returning to work process, by mediating between workers and employers, and provide information about hidden symptoms since there seem to be a general lack of understanding about them [33,37]. In agreement with previous research [8,38], saving energy by incorporating rest during the day was the most commonly used strategy for coping with fatigue. In addition, our findings suggested that adaptations to embody a healthier lifestyle had been made to cope with fatigue. Participants tried to sleep better, drink and smoke less, and to avoid stress at work. However, taking up physical exercise was only described as a part of this adaptation by one person. It is well known that physical activity levels for individuals after stroke do not reach recommended levels [39]. In the present study participants explained that they had no time to exercise, they felt too tired after work or were not sufficiently motivated. Lack of motivation can result from not valuing an activity because it is not believed to lead to a desired outcome [11]. Additional barriers that may contribute to inactivity are: neurological deficits, cognitive impairments, and environmental factors [40,41]. Previous research within this field [42][43][44] suggested a need to adapt long-term perspectives to increase levels of physical exercise after stroke. This is important to prevent a recurrent stroke or another cardiovascular event, but also to improve health and quality of life in individuals after stroke more generally [42]. All participants had transitioned to a stage of reorientation in life 7-8 years after stroke. They had come to terms with and adapted to a changed life situation, thus they reported a quite favorable participation at this stage. This positive result might partly have to do with the younger age of our study group < 65, because a younger age after stroke has been shown [45] to be of great importance for successful participation. In two recent interview studies [16,26] it was found that in a long-term perspective, stroke was no longer an issue, but had been integrated as a new normality, and other life events were more significant for the experience of participation. In contrast, another interview study [46] which included participants who were 11-13 years after stroke, concluded that only two out of eleven study participants had successfully adapted to their lives after stroke. In the present study, emphasizing positive aspects of life was both an active strategy to cope, and something that had developed from a genuine gratitude for having survived and managed a serious disease [37,47,48]. Participants felt that they wanted to take good care of their lives, and to spend it in a way they considered meaningful. After having accepted a somewhat different way of living, participants mostly experienced well-being in life, even though it had been a long process getting to this stage. In line with previous findings [49] this process of learning about one's limitations and through trial and error, finding new ways to cope was described as a learning experience. Being aware of personal limitations and reconstructing preferred activities through daily living in a successful way can be referred to as self-management [49]. In a previous interview study post-stroke [50] participants were unfamiliar with the term self-management, but understood it as; "doing things for yourself" or "taking care of yourself". In addition to these aspects, participants in the current study wanted to prioritize their closest family and friends, before material things or pursuing a career. A strength of this study was the purposive sampling procedure that aimed for different perspectives to emerge and for variation in data. This, together with the open questioning, made it possible to obtain a deeper understanding of the research questions. A majority of the participants in this study had had a less severe stroke, which is more common in this age group, i.e. people of younger age [51]. The patient perspective was integrated as the interview guide was developed in cooperation with a patient representative from the Swedish Stroke Association. In addition, pilot interviews were performed to develop and improve the interview guide. It is important to facilitate the participation of people living with disabilities in research [20]. A limitation of this study was that questions about the past were asked. It can be difficult to recall memories about what happened several years ago, even if this issue was not expressed by participants. The study group was of working-age, and results might not be representative for older people a long time after stroke. An older population might struggle with issues related to ageing, and participation often decreases with age [52]. Because experiences of participation are sensitive to context and formed in a specific cultural setting, transferability of results to other countries than Sweden needs consideration. --- Conclusions The results show that participants had learned about how stroke impacted their lives and through trial and error they found ways to adapt in order to experience more successful participation. However, it is still not known exactly what aspects are important for facilitating the process of managing a successful participation. More knowledge about coping strategies that improves participation in activities many years after stroke is needed, so that more people can reach a state of positive identity and participation. In addition, as participants were not involved in physical exercise to a greater extent, sustainable interventions to promote and encourage people to be more physically active a long time after stroke should be explored. As long-term participation after stroke seems to be a complex and continuous personal process, an individualized approach in rehabilitation would be valuable. Professional support and encouragement could be needed in the process of adapting one's behavior and trying to stay positive through challenging life alterations. Support-groups could also be an effective longterm intervention in the workplace to help people in the process of coping with challenges. --- Complete interview data cannot be made publicly available for ethical and legal reasons, e.g., this would compromise patient confidentiality or participant privacy, according to Swedish regulations. The data are owned by the university and available for noncommercial parties. Requests for data may be directed to the Swedish National Data Service,

To enhance the understanding of long-term participation in working-aged people 7-8 years after stroke.This study had a qualitative design, using a thematic analysis methodology. Eleven individuals took part in an in depth interview 7-8 years after a first time stroke. They had received care at the Sahlgrenska University Hospital in Gothenburg, and were recruited as a heterogenic sample with respect to age, gender, stroke severity and subtype.From the participants' experiences four themes emerged: "Returning to work after stroke"; "Working life 7-8 years after stroke"; "Social life 7-8 years after stroke"; and "A state of reorientation in life". Quotes about experienced participation in everyday life were summarized and presented as "Participation after stroke narratives". Participants chose to emphasize on work-and social life when describing situations of successful participation. Being included in the wider community and having a sense of purpose, when interacting with others, were factors that these narratives had in common. Participants had gradually become accustomed to a somewhat altered life situation. Some consequences after stroke were still considered frustrating in social or work situations. However, the importance of these issues had reduced and were no longer problematized.Participants felt content with their everyday life in general, which was a principal and positive result of this study. Reaching a stage of acceptance seemed to be a complex and continuous struggle, and an individual approach in long-term rehabilitation would be valuable to support this personal process. More knowledge about what factors that facilitate

INTRODUCTION Modern social media like Twitter or Facebook encompass a significant and growing share of the population, which is actively using it to exchange messages. This has a profound effect on the way news, events and all kind of information are spreading in terms of frequency, reach and speed. Given its broad coverage of the world as well as its fast reaction times, social media acts as a powerful "social sensor". Driven by this relevance, there is significant interest in performing fast, scalable and thorough analyses. Particularly, assessing the relevance and trustworthiness of a piece of information in a timely way is a key challenge. Permission to make digital or hard copies of part or all of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for third-party components of this work must be honored. For all other uses, contact the owner/author. Consider the user case of an online journalist. In order to take advantage of the rapid update rates, the huge amount of information and the coverage of events while they are happening, journalists need fast and accurate information diffusion analysis: 1) understanding how information reaches them, 2) what is their own impact after publishing, 3) detecting the full diffusion process and assess the relevance of trends, events and moods. In order to tackle such a use case, systems that can derive such influence in real-time are needed. Information in social media arrives in fast rates, reaching virality in short time and affecting a large part of the population. In order to keep up with the stream of messages, incremental and distributed computations are required. Complementary, given the need to trace information diffusion and identify who is connected with whom, processing the social graph in a fast way becomes a necessity. Considering the current sizes of social graphs , partitioning and distribution need to be performed in such a way that quality of results is not affected. --- RECONSTRUCTING CASCADES Although there is related work on how to model [3], reconstruct [1] and analyze the properties [11,5] of information diffusion in term of "cascades" , there is almost no research on how to perform such analyses on real-time in the presence of both very fast streams and huge social graphs. In previous work [9], we have developed a single-site, incremental algorithm that can reconstruct information cascades containing retweets, i.e., explicitly forwarded short messages on Twitter. Extended versions of this algorithm are presented here to outline the challenges of reconstruction and possible improvements. The algorithms handle retweets, since they constitute a common vector for information diffusion. Twitter, however, includes only information on the original message of a retweet, but not on the intermediate steps or the full cascade. Since it makes only minimal assumptions on the model and data -such as order of exposure and social graph connectivity as carrier, the algorithm is also suited to reconstruct other types of diffusion, e.g. hashtags where the grouping of messages is much weaker. The idea core idea is to correlate the stream of messages with the underlying social graph. Influence edges -coloured in red over the social graph-are derived when a user emits a message and is connected via the social graph to users who previously also emitted this content. In Figure 1 we see that when user U4 emits a message two of his connections U2 and U3 have emitted the same message before, as a result we generate two influence edges that connect U4 with U2 and U3. A naive implementation of this idea would have cubic complexity: For each newly arriving message Mn+1 we need to check if the user Un+1 who created it is connected to any of the users U1 to UN who created the previously arriving messages M1 to MN , where either the user has K connections or each of these users has J connections. Within the scope of this work we only consider direct connections, but for future research multiple hops may be relevant in order to compensate for missing information. Similar to join processing, we can now exploit indexing and domain knowledge: the order among the prefix or the connections may not matter, so we can treat them as set and get efficient containment checks. This leads to two algorithm variants that are shown in Figure 2): The first variant treats the follower connections of U1 to UN as sets and iterates over the prefix of messages seen so far to check if Un+1 is contained in any of these sets. The second treats the users in the prefix as a set and iterates over the friend connections of Un+1 to check if any of them is contained in the set. Clearly, the former works better for small cascades with heavily popular users, while the latter works best with large cascades of not-so-well-connected users. Variants of these algorithm can switch between these iteration types according to the relative size of each of these sets and the iteration targets, since both the cascade sizes and the connection set sizes are heavily skewed in practice. This computation provides incremental results at high speeds. In [9] we used prefix iteration and observed that the complete reconstruction of all influence paths in a cascade with around 10K messages is completed in less than 5 seconds. --- Problem Statement and Challenges Since we want to construct cascades on real time on all possible users we need to address the data scale and rapid rates. In periods of heavy traffic, hundreds of thousands of cascades are taking place in parallel, consisting of up to hundred of thousands or millions of retweets. Complementary, the social graph consists of hundreds of millions of users with dozens of billions of edges; clearly querying such a graph for real-time computations creates a considerable overhead, as its raw size by far exceeds the RAM available to commodity systems. In turn, the main bottleneck of these algorithms is the size of iterations and the access latency to the sets. For the latter, we observed that even in the centralized algorithm it is massively affected by increased access latency. Switching from a hash-based approach to a sorted-list-based approach gave slowdowns by more than an order of magnitude. In turn, a first attempt of distributing only the data by utilizing a requestresponse based approach to the social graph adjacency lists led to a slowdown by three orders of magnitude. According to our observations, when computing the influences edges, we encounter very low selectivity in the connection sets: the average degree of a node in the cascade is slightly above one, yet M 1 U 1 M 2 U 2 M n U n ... M n+1 U n+1 --- Stream of messages --- Connections of previous users M 1 U 1 M 2 U 2 M n U n ... M n+1 U n+1 Traversal/Iteration Identifier Set Containment Test there can be massive skew . The repeated access to connection sets at the beginning of a prefix might lend itself to bulk transfer of the entire set, but this skew might also be very costly. In other words, we need to repetitively probe possibly large sets, while the return set is very small. Due to the number of accesses a typical request/response approach will incur significant additional latency, while transferring full adjacency lists can be rarely amortized. There is not much work that combines classical streams with large graphs; typical graph processing systems like GraphLab [7] are efficient in iterative graph computations, but do not cater for streams. Complementary, such a problem is not a classical stream processing problem where a single pass over the data is desired: it is an iterative stream processing problem where we need repetitive access to the stream prefix . The only known approach is Naiad [8] which allows for iterative computation over data streams using timed dataflows. As such, Naiad provides strong coordination means, something that is one of the next issues to tackle. It does, To the best of our knowledge, it does not provide the fine-grained control over algorithm and state distribution we are trying to achieve here. --- Stream of messages Prefix Iteration User Iteration --- DISTRIBUTED PROCESSING Given these challenges, we aim for a distributed approach that minimizes the access latency on the social graph, and keeps the computational cost and number of messages to transfer low. We follow a number of design ideas to express this distribution efficiently: The first is to partition the set of adjacency lists in a non-overlapping way to achieve a good scalability in terms of the massive graph sizes. The second is to perform all iterative accesses to an adjacency list and checking of set containment locally to avoid the latency penalties of such accesses. Taken together, these two ideas mean that we may need to distribute the iteration over the messages over multiple nodes. To reduce the latency and amount of data to transfer when processing different messages at different nodes, we take in turn three steps: a) We collect all results at the site of the cascade starter, minimizing distributed operations altogether. b) We combine the low selectivity of lookups with an adapted partitioning strategy to minimize the amount of result data and the time to transfer. c) We utilize stateful processing and parallel sending to reduce the size and time of messages' requests at the different nodes. Lastly, we perform parallel processing to reduce the overall response times. All theses ideas translate into the following architecture that builds on the infrastructure we developed for the centralized algorithm, as shown in Figure 3. We assign the adjacency lists of the social graph to the processing nodes according to the partitioning; we centrally retain information on the locations of this assignment. Utilizing the cascade in Figure 1, let us assign user U2 to S1, U1 as well as U5 to S2 U 3 as well as U4 to S3. For newly arriving information in the cascade, we send a triple of identifiers in parallel to the relevant partitions to perform partial computation. This partial computation provides the part of the connections for this user that can be derived at this partition. To gain a full reconstruction of the cascade , the partial results are combined at the partition containing the user who started the cascade. This decision is driven by the insight that such users often have significant influence in the cascade. The partial prefix information and the computation at each site as well as the information to send to a site depend on the iteration of the reconstruction algorithm: For prefix iteration, each partition will be used to iterate over the intersection of the users in the cascade so far and the user set present at the site. Using the running example cascade and the allocation described before, the connections of message M will have to be checked against site S1,S2 and S3, since each of these sites contains users from the prefix of the cascade . In order to avoid sending the prefix to the affected sites over and over again when probing, we keep the partial prefix for each active cascade at each site . Generating this prefix can be piggy-backed with connection checking: when we probe for the connectedness of a user, this user is added to the prefix at the site where its own connections reside. This way, messages of constant size are sent to the subset of set of sites that contain users in the prefix of the cascade. For user iteration, all potential connections of a new message can be found at a single site, yet the full set of users active in the cascade needs to be accessed . We therefore collect the complete prefix at each site involved in the cascade, and transfer the existing prefix in bulk when a so -far inactive-site is accessed. In both cases, each partition keeps a partial state of the computation so that the cascade can be processed in parallel. Overall, both approaches will converge to sending all messages to all active sites. Since these requests are performed in parallel to regular processing, they do not significantly affect the overall latency. Since the selectivity of these requests is very low, the response counts are significantly lower, providing even less of a bottleneck. We currently synchronize the reassembly at the end of a cascade, but we are working on more fine-grained synchronization which may also tie into batching. Investigating the best sizes for such batching as well as understanding the tradeoff between minimizing cost and achieving load balancing are some of the challenges we plan to investigate. We also need to understand for how long such a distribution stays stable and to which extent adaptive, fine-grained migration of connections might be needed. Despite these significant optimizations in processing the cost, a suitable partitioning will still make a significant difference in the overall performance. Our problem differs from both the traditional graph partitioning as well as as social graph partitioning for high variance in out-degree [2]: 1) The graph partition needs to exploit skew to ensure that interactions of users remain local. 2) The size of a partition is not determined by the number of nodes or intrapartition edges, but by the overall edges outgoing from users. We aim to solve this problem using a key observation and derived hypothesis to perform the partitioning: Past interactions [4] are an important factor to assess the strength of links in the social graph: Users who interacted in the past are more likely to interact in the future. To exploit this idea, we have partitioned the interaction graph of users [10] which reveals who interacted with whom, and use this partitioning to allocate the social graph. In our workload, these graphs are actually a byproduct of computing influence, so we can easily collect the results and learn over time. --- PRELIMINARY EVALUATION So far, we have performed a set of preliminary experiments, determining the cost increase of a single-site reconstruction. For a deeper understanding of the cost increase and the efficiency of our partitioning, we also investigate how many remote requests are being issued and how many remote responses are being generated. Since the exact time needed for requests and responses is hard to be measured reliably, we compare the total time of performing the reconstructing at a single site against the time to perform distributed reconstruction. The evaluation was performed on selected cascades from the dataset we used for [9] that represent a typical diffusion workload. We collected messages from the Twitter Streaming API from August 3rd to September 24th 2012, using the filter terms "Olympics" and "London2012". In total the data set contains almost 11 million tweets, in particular 1.1 million separate retweet cascades. The largest cascade has more than 60K retweets, around 150 have more than 1K retweets, approximately 5000 cascades have more 100 retweets and around 45000 cascades contain 10 or more retweets. We also used the REST API to retrieve the social graph connections for those users present in the cascades. Overall, the social graph we are using contains around 4.5 million follower lists with more than 4.8 billion edges and requires around 45GB of storage on disk. Out of this dataset, we selected a number of cascades with different properties: a) individual cascades with 60K, 29K, 15K, 7K and 3K messages. b) several collections of cascades with around 60K messages in total: i) 500 cascades at around 120msg ii) 100 cascades at around 600msg iii) 10 cascades at around 6000msg. The experiments were performed on a Cluster of 9 machines, each with an Xeon E5-2420 and 32 GB of RAM. This cluster ran Storm 0.9.6 on top of OpenJDK 7 and Ubuntu Linux 12.04 LTS . The Storm topology was configured to use 1,2,4 or 8 nodes for graph partition and reconstruction sites and one additional node to perform the event stream loading, routing etc. All involved bolts were pinned to specific machines using a custom scheduler. The social graph fragments at each site are loaded when deploying the topology, and run a single bolt with around 30 GB JVM heap at each of the reconstruction sites. The allocation was performed using the interaction network of this data and partitioning it using the METIS [6] framework. Given that the dataset only contains follower information, we performed all evaluations using prefix iteration. Comparing individual cascades clearly shows the overall usefulness of our approach. With one exception, the runtime overhead was less than 5 percent of the total time when using a single site. In the cascade with 15K messages, the main influencer is not the starter of the cascade, but a more popular "downstream" user. In this case, the reconstruction time increases less than a factor of two -which is still quite usable in practice. The number of remote responses gives a clear indication on these effects: for all cascades except the one with 15K messages, the number of edges that are delivered remotely is between 1.5 and 12 percent of the cascade size. For the outlier cascade with 15K, this number even exceeds the cascade, as a) most users are not in the starter's partition and b) many nodes have multiple ingoing influence edges. Expressing the computation in a stateful manner saves a significant amount of time and message size over repeated prefix requests, cutting the overhead between 20 and 90 percent. When running sets of cascades in an interleaved manner, we compared the total completion times with the sum of the individual reconstruction times to understand the competing effects of parallelism and resource contention. Generally speaking, we see a speedup for all of these cascades when comparing against a singlesite reconstruction. This effect becomes more pronounced with fewer and larger cascades where the total time is significantly less that the sum of all individual reconstruction times. Overall, the results show that the overheads of distributions are significantly lower than those of approaches based on request/response patterns over distributed storage or stateless computation. Future evaluations will include a comparison against a direct implementation in Naiad and further investigation on balancing computation and communication. --- CONCLUSION Analyzing information diffusion provides important insights into the relevance and trustworthiness of social media. Yet, very little of the existing work has tackled the challenges of performing information diffusion reconstruction at the scale and speed of contemporary social media. In this poster, we present a system and distributed algorithm to combine high-rate message streams and massive social graphs to infer such influence in realtime. Both social graph information and the computation are distributed so that communication cost is minimized and parallel computation is increased. The preliminary performance results reveal that the system shows great promise to address those challenges.

Recent advances in social media have triggered a massive engagement of user population: a large part of people's lives has shifted to social media platforms and real events are reported while they are happening (e.g. in Twitter). As a result, such platforms have become an important source of information, being used by professionals as well, e.g. journalists, for fast access to news and events. Social media maintain an underlying network of social connections over which such information propagates. Information diffusion in social media has attracted attention, by analyzing how information is propagated from user to user and who is influenced by whom. Given the scale and speed of such information, systems that can keep up with such fast rates are required. In this poster, we present a system for real time reconstruction of information diffusion that encompass the challenges of analyzing fast data streams combined with large social graphs.

Introduction To control the spread of the novel Coronavirus disease , the Indian government swiftly instituted a shutdown of international borders and a stay-at-home order on March 24, 2020 [1]. Such 'lockdown' policies to prevent the spread of COVID-19 originated in highincome countries and China; little primary research has explored the potential unintended consequences in countries including India characterized by densely populated urban slums, a highly mobile population, high proportions of informal sector workers, and stark variation in poverty levels [2]. Despite rising cases, the lockdown was lifted on June 8, 2020 to begin a phased reopening. As of August 2020, India surpassed 2.3 million cases of COVID-19, the third highest case load after the United States and Brazil [3]. Historically, epidemics and humanitarian crises have disproportionately impacted the most vulnerable, including women and girls [4]. Entrenched inequalities in access to education, job opportunities, and healthcare often leave women inadequately equipped to effectively protect themselves and their families against infection during an outbreak, and they are also more likely to bear secondary negative effects of prolonged crises, such as economic insecurity or challenges accessing essential health services [5]. Existing gender disparities in India may be exacerbated or reinforced by the pandemic and are likely to affect women's ability to make informed decisions about adopting behaviors that mitigate risk of COVID-19. Prevention campaigns and behavior change communication interventions across various media, including a government-run mobile app that sends automated messages, are informing the public about COVID-19 symptoms, risk factors, and promoting preventive behaviors such as handwashing, social distancing, and wearing masks in India. To date, there is little to no research tracing how COVID-19 messages are reaching men and women or which sub-groups are adopting these behavioral recommendations. However, a rapid situational assessment in the South Asia region suggests that women are less likely than men to have received COVID-19 information [6]. Moreover, literacy, internet usage and smartphone ownership is lower among women compared to men in India [7][8][9]. Accessing and understanding health promotion messages increases knowledge, which needs to be accompanied with structural facilitators and access to resources to adopt promoted preventive behaviors [10][11][12]. These gender gaps may result in lower adoption of promoted health behaviors and increased risk of infection for women and girls. The worsening COVID-19 pandemic in India is causing prolonged social and economic disruptions that are yielding unintended consequences including economic and food insecurity, and challenges in accessing healthcare. Challenges in accessing essential health services may lead to increases in other adverse health outcomes, from vaccine preventable diseases to poor birth outcomes and malnutrition [13,14]. This often disproportionately harms women who may require healthcare themselves and are also often responsible for taking care of their family's health needs. Potential reasons for these challenges may include inability to pay clinic fees as COVID-19 related economic insecurity persists, mobility challenges, or fear of seeking care due to stigma or concerns about COVID-19 infection at the facility. Indeed, compared to March 2019, March 2020 data from the Indian National Health Mission showed marked reductions in indicators of regular health system usage [2]. In addition to physical health, lockdowns may exacerbate household stress, contributing to increases in sexual and gender-based violence and poor mental health symptoms [15,16]. While psychological distress increases generally during crises, experience of depressive symptoms is more common among women compared to men [17]. In addition to gender, a recent study also found that adolescents and younger adults , those that had lost employment, and/or lacked formal education were more likely to experience depressive symptoms as a result of the pandemic's effects [18]. Relatedly, stress and ongoing lockdowns have been linked with violence against women, as in past humanitarian crises [19]. Some countries reported increases in SGBV during COVID-19 lockdowns [15,20]. Concerns around these secondary health and well-being effects are significant. As India is home to the largest population of adolescents and young adults of any country worldwide, understanding the impact of the pandemic on this important age cohort will also be critical. In the age-and gender-stratified settings of India, prevailing gender disparities and traditional gender norms affect health and well-being of adolescents and young people disproportionately. However, little is known regarding the experience during the COVID-19 pandemic of Indian adolescent girls and young women compared to men. A cross-sectional mobile phone-based survey of households in Uttar Pradesh and Bihar was carried out four to six weeks after lockdown was imposed. This analysis highlights the gender specific variation in COVID-19 knowledge and practice of preventive behaviors, and mental health effects among a cohort of adolescent and young adults. Findings from this study can inform the development of social service programs and education campaigns to ensure that adolescent and young women have access to tailored information and resources during this protracted crisis to ensure development and equity gains are not lost. --- Methods --- Sampling strategy A rapid telephone survey was conducted with a sample of participants drawn from an existing Population Council cohort study of adolescents and young adults. Understanding the Lives of Adolescents and Young Adults is a state-level representative longitudinal study of adolescent girls and boys in rural and urban settings in Bihar and UP , with baseline conducted in 2015-2016 and endline in 2018-19. The original UDAYA study objectives were to better understand adolescents' acquisition of assets and their transition from adolescence to adulthood [21,22]. UDAYA researchers used the 2011 Indian Census to create a systematic, multi-stage sampling frame for the selection of 150 primary sampling units in each state, with an equal breakdown between urban and rural areas. UDAYA was designed to provide estimates for five categories of adolescents, namely unmarried younger boys and girls aged 10-14, unmarried older boys and girls aged 15-19, and married older girls aged 15-19 that represent each state [21,22]. UDAYA households eligible for inclusion in the COVID-19 survey were those in which we interviewed a 15-19-year-old boy or girl in 2015-16. Phone numbers were available for 9,771 of such UDAYA participants-2,437 boys and men and 7,334 girls and women. We randomly sampled households for the mobile phone survey from this list of telephone numbers, stratified by gender. The enumerators contacted telephone numbers belonging to 5,520 UDAYA participants-1,512 boys and men and 4,008 girls and women-attempting each number up to 3 times and completing about 10 interviews per day. Of those attempted, 51% of telephone numbers were no longer functional . Of numbers we successfully reached, 5% of respondents refused to participate in the study. Overall, participants in the COVID-19 study had slightly higher educational attainment, were slightly more urban, and had slightly higher household wealth compared to the source cohort. The characteristics of the UDAYA baseline cohort compared to those who were enrolled in the COVID-19 mobile-phone survey is summarized in a S1 Table. --- Mobile phone questionnaire Participants were contacted via mobile phone to remove the risk to field staff and participants of COVID-19 infection. After verbal consent for participation, a short questionnaire lasting no longer than 30 minutes was administered. The questionnaire included questions regarding basic demographics, awareness of COVID-19 or coronavirus, knowledge of symptoms, risk groups and transmission, perceived risk, COVID-19 prevention behaviors, and fears or concerns regarding the outbreak. Questions assessing household and individual needs under the government lockdown were also included. In the survey participants self-reported their sex as male or female; throughout this paper we will refer to respondents as men and women to illustrate that our analysis reports how the pandemic impacts gender not biological sex. --- Ethical review We received expedited ethical approval from the Population Council's Institutional Review Board by meeting criteria for research conducted during COVID-19. The IRB permitted data collection with participants with previous consent from existing cohort studies, provided the research is aligned with national mitigation efforts. The UDAYA study protocol originally received IRB approval in 2015 for longitudinal data collection. Participants were told they could terminate the study at any time or skip any sections. No incentives were offered for taking part in the study. --- Data management and analysis The survey responses were entered in mini laptops using instruments developed with CSPro 7.1 and exported to Stata v15 for analysis. Each household had a unique ID number, and all personally identifiable information was removed to ensure confidentiality. Two summary outcome variables were created. First, participants who correctly identified all three COVID-19 symptoms were considered to have correct knowledge . Participants who reported implementing all four preventive behaviors were categorized as implementing the four main preventive behaviors . Depressive symptoms, as measured by reporting feeling lonely, depressed or irritable during the lockdown, was collected as a dichotomous variable. To control for household wealth, we created a proxy variable constructed from the presence of four basic amenities: safe drinking water, electricity, toilet facility and safe cooking fuel. Educational attainment was categorized into three levels, with grade 8 indicating completion of primary education and grade 10 indicating completion of secondary education. Religion was categorized as Hindu or Muslim , with 9 indicating 'other' and excluded from models. Lastly, caste was categorized as scheduled caste/tribe , other backward castes and general ; these designations, as provisioned in the Indian constitution, are used to identify marginalized groups in the population. Only women were asked if they had experienced any violence in the home in the last 15 days under lockdown. All survey responses were tabulated by gender and tested for statistical significance using chi-square tests. We implemented linear probability regression models based on three outcomes of interest. First, knowledge of all three key symptoms of COVID-19. Second, practicing all four of the key preventive behaviors. The third outcome was self-reported experience of loneliness, depression, or irritability in the previous seven days used to define experience of depressive symptoms. Three separate linear probability regression models were constructed for each of the three outcome variables, first for the full set of respondents and then stratified by gender. --- Results A total of 1,666 adolescents and young adults previously enrolled in the UDAYA study were surveyed. Of these, 70% were women, over half had completed 10+ years of education and nearly half resided in urban areas . Fewer women than men knew the main symptoms of COVID-19 and fewer women than men practiced key preventive behaviors such as staying home unless it is urgent and wearing a mask . Fewer women reported doing all prevention behaviors . A greater proportion of women respondents reported experience of depressive symptoms. In the full model, women were less likely than men to know COVID-19 symptoms . The model was then stratified by gender . For the men-only model, there were no key characteristics associated with more or less knowledge of symptoms, except that those in the general caste category were 14 pp more likely to know the symptoms compared with those in the OBC category . In the women-only model, several characteristics were associated with having more knowledge of key symptoms. Women who had completed 10 + years of education were 25 pp more likely to know the symptoms compared with those only having zero to seven years of education ; relatedly, women residing in households with key amenities were much more likely to know the symptoms . Women living in rural areas had lower knowledge of the symptoms. Fig 1 highlights the education and gender differences in reportedly practicing all four main preventive behaviors; this proportion increases across categories of educational attainment for both men and women . Findings also show that women respondents with secondary education were less likely than men respondents with less than primary education to report practicing all four prevention measures. In the full model exploring characteristics associated with doing all four prevention behaviors, women were 22 pp less likely than men to report doing all behaviors . The full model was re-run stratified by gender. Among men, several characteristics contributed to reportedly practicing all four prevention behaviors. Men who knew the top three symptoms were more likely to practice the four key preventive behaviors . Men in rural areas and in Bihar were much less likely to carry out the four behaviors. For the women-only model, the only characteristic that was associated with conducting the four behaviors was knowledge of the three main symptoms . The last model explored characteristics associated with self-reported experience of depressive symptoms. In the full model, women were 5 pp more likely to report that they were experiencing depressive symptoms compared to men . When stratified by gender, among men only, household loss of employment was the only factor associated with depressive symptoms . Among women only, household loss of employment, religion, and experience of violence were significantly associated with depressive symptoms. Women belonging to the Muslim religion compared to those who identified as Hindu, were more likely to report experience of depressive symptoms . Women who reported violence in the home in the last 15 days were 30 pp more likely to report experience of depressive symptoms . Women reported whether they had required health services in the previous week, and if so, if they were able to access them . Most women had not required health services in the previous week. Of the types of services that were required, nutrition services and child immunization services were the most reported. Among women who sought nutrition services, 51% required but could not access them, 1% required and were able to access them. For child immunization services 37% were unable to access them, none who needed child immunization services could access them. For family planning, 76% stated they did not require this service in the previous week, of those that did, 21% could not access family planning services . --- Discussion Conducted early in the pandemic, our study identifies gender disparities in COVID-19 related knowledge and uptake of promoted preventive behaviors among young people in two states in India. Overall, women were less likely to be able to identify all three of the main COVID-19 symptoms correctly, potentially due to challenges in accessing information or receiving less accurate information of COVID-19 symptoms. Women were also less likely to be practicing the most effective prevention behaviors and they were also more likely to report symptoms of depression. Access to health services is also reportedly affected by the pandemic, with most women in need of services unable to access them, including nutrition, child immunization, family planning and antenatal care services. As of Fall 2020, the pandemic is still not under control globally, and the threat of continued infections remains; therefore, understanding the needs and experiences of adolescents and young adults is critical to offering resources and social support, with attention to gender. Gender differences in accurate knowledge of key COVID-19 symptoms likely reflect young women's lower levels of educational attainment and lower media exposure, as well as lower access to mobile phones [21,22]. Among women, there was significant variation in the characteristics of who had COVID-19 information, such as higher educational attainment, urban residence, and higher economic status. These factors likely reflect higher literacy and access to information among some young women. Interestingly, no variation was observed within men, and overall, their knowledge was higher than for women. This finding is supported by available literature on past pandemics. During an outbreak of influenza A in India, a small study found that men had more knowledge of H1N1; this was attributed to men having more social interactions through employment and having higher literacy rates than women [23]. Higher knowledge among men may be influenced by their greater exposure to risk outside the home for work and socializing shaped by gendered social norms. A recent study from India found differential COVID-19 risk and mortality by gender, reporting that most infections are among men [24]. Our study also suggests that men have higher potential exposure but also higher knowledge of COVID-19 symptoms and prevention; gender dynamics and social norms may increase both knowledge and infection risk among men. Among women, lower adoption of promoted behaviors may also reflect the gender roles and the fact that women spend more time indoors. If women are not going outside, they may not be wearing masks or keeping 2m distance from others because they are not interacting outside the household. Knowledge was the only factor associated adoption of promoted behaviors among women; potentially there are other unmeasured characteristics that are associated with observed variation among women. To bridge this knowledge gender gap, additional research on whether and how the pandemic is reinforcing gender roles may help inform gender sensitive education campaigns via media that women can access and understand even with limited literacy. Mental health and healthcare-seeking behavior for young people are also affected. Our findings suggest that loss of employment among household members due to the lockdown was associated with depressive symptoms among both men and women. Approximately 400 million informal sector workers in India have lost their livelihood due to COVID-19 and related lockdowns [25]; interviews with informal sector workers describe impending poverty, evictions and hunger as incomes and work opportunities are sharply curtailed [26]. Previous research has also found a link between loss of employment and SGBV, both of which likely relate to depressive symptoms during lockdown [15,16]. A recent study conducted prior to COVID-19 of mental health in India found being a woman, younger age, loss of employment, and other characteristics were associated with symptoms of depression, anxiety and stress [18]. Many women reported that they had forgone necessary medical services, which may lead to adverse secondary health outcomes and outbreaks of other diseases. Among women surveyed, most of those who did require a health service could not access them. Public transit commonly used to visit clinics was closed during lockdown, which may have affected access [2]. Challenges in accessing health services must be carefully monitored to avoid unintended secondary health crises, including outbreaks of vaccine preventable disease, stunting/undernutrition, and unintended pregnancy or poor birth outcomes [27]. While most women reported they did not require any health services, this study was conducted early in the pandemic. If lockdowns resume or access continues to be disrupted, utilization of essential services should be monitored, and steps taken to ensure accessibility. This study has several limitations. First there are inherent challenges in conducting surveys that are not face-to-face; mobile phone-based data collection relies on self-reported information conveyed by participants who may have challenges understanding questions, and we cannot guarantee protections for participants who may be vulnerable in their households [28]. Secondly, the representativeness of the sample may be compromised as we could only interview those with working phone numbers from the 2015-16 UDAYA survey. Our survey respondents had slightly higher educational attainment and household wealth compared to the full UDAYA cohort, suggesting that the most vulnerable from the original sample were not reachable. Third, we asked questions regarding knowledge of COVID-19 prevention behaviors, then later asked about behaviors respondents were doing. Potentially, question order nudged recall, which could explain why the proportion aware of certain behaviors was lower than those who reported implementing them. However, both the knowledge and behavior questions were based on spontaneous responses, not a list read by the interviewer, so this effect should be minimal. Lastly, our measure of mental health was very simple and self-reported, validated depression measures are necessary but challenging to collect via mobile phone interview. Our findings suggest that early in the pandemic lockdown, there were significant knowledge gaps and secondary health effects disproportionately impacting adolescent girls and young women. To increase knowledge of symptoms and preventive behaviors, gender-sensitive behavior change campaigns should be developed, and adapted for cultural context, literacy, and accessibility. Improved access to information may lead to adoption of promoted behaviors, reducing risk of infection. Relatedly, steps to address mental health and the unintended secondary health impacts of the pandemic are required. To date, the Government of India has introduced several initiatives to address these issues, for example activating a tollfree helpline for those requiring psychosocial counseling and issuing guidelines for the sustained provision of essential health services. Government agencies are also launching special social protection initiatives. It is critical that these measures reach the most vulnerable populations, including messaging targeted to women. Longer term efforts may also be necessary to address the prolonged and potentially gendered effects of COVID-19 and ensure that health and development gains are not lost due to the pandemic, especially as India's case load has grown to one of the highest worldwide. --- The data are accessible via Dataverse . --- Supporting information S1

On March 24, 2020 India implemented a national lockdown to prevent spread of the novel Coronavirus disease (COVID-19) among its 1.3 billion people. As the pandemic may disproportionately impact women and girls, this study examines gender differences in knowledge of COVID-19 symptoms and preventive behaviors, as well as the adverse effects of the lockdown among adolescents and young adults. A mobile phone-based survey was implemented from April 3-22, 2020 in Uttar Pradesh and Bihar among respondents randomly selected from an existing cohort study. Respondents answered questions related to demographics, COVID-19 knowledge, attitudes, and preventive behaviors practiced, and impacts on social, economic and health outcomes. Descriptive analyses and linear probability regression models were performed for all participants and separately for men and women. A total of 1,666 adolescents and young adults (18-24 years old) were surveyed; 70% were women. While most participants had high awareness of disease symptoms and preventive behaviors, there was variation by gender. Compared to men, women were seven percentage points (pp) less likely to know the main symptoms of COVID-19 (coeff = -0.071; 95% confidence interval: -0.122 --0.021). Among women, there was variation in knowledge by education level, urban residence, and household wealth. Women were 22 pp less likely to practice key preventive behaviors compared to men (coeff = -0.222; 95% CIL -0.263, -0.181). Women were also more likely to report recent depressive symptoms than men (coeff = 0.057; 95% CI: 0.004, 0.109). Our findings underscore that COVID-19 is already disproportionately impacting adolescent girls and young women and that they may require additional targeted, gender-sensitive messaging to foster behavior change. Gender-sensitive information campaigns and provision of health services must be accessible and provide women and girls with needed resources and support during the pandemic to ensure gains in public health and gender equity are not lost.

Introduction The purposeful avoidance of pregnancy by the use of different techniques, sexual practices, drugs, medications, or surgical procedures is known as contraception [1]. Contraceptive methods are usually divided into modern and traditional categories. Traditional methods of contraception include the lactational amenorrhoea method, the rhythm method , withdrawal , and folk methods [2]. A modern contraceptive method is a drug or medical treatment that prevents sexual activity from leading to pregnancy [3]. modern contraceptive methods include barrier methods such as male and female condoms, diaphragm, cervical cap and sponge; hormonal contraceptives that include oral, injectable, transdermal, vaginal ring, and implants; intrauterine device [4]. The majority of contraceptives used globally are modern methods. A modern method of family planning was used by 58% of married or in-union women of reproductive age worldwide in 2017, accounting for 92% of all contraceptive users [5]. According to the Ethiopian Mini Demographic and Health Survey of 2019 report, currently married women's use of modern contraceptives has continuously risen from 2005, from 14 to 41% [6]. There are a variety of benefits to contraceptives, including those for women's empowerment, maternal and child health, economic growth, and education [7]. Additionally, the modern methods of contraceptive are crucial for reducing unintended pregnancies, delaying births, and improving neonatal and child survival rates since there will be more time for good parenting and child care [8]. Several literature demonstrated that the use of modern contraceptives is influenced by a variety of factors, including age, education, communication between couples about FP, the number of living children, husband approval of FP, the intended number of children, place of residence, religion, knowledge, and attitudes [9][10][11]. A Bayesian hierarchical modeling study which was conducted by Vladimíra.etal in 2020, demonstrated that currently there are 1.9 billion women in the globe who are of reproductive age , of whom 1.1 billion require family planning, and the number of women in this age group is predicted to rise. Of them, 842 million utilize contraceptives and 270 million still require contraceptives, which is still not being met [47]. To enhance women's sexual and reproductive health, non-governmental organizations and the government are now working together in Ethiopia to provide outreach programs that provide contraceptives [48]. Since then, a health sector transformation plan has been formed by the Federal Ministry of Health to raise the contractive prevalence rate. But the demand for modern contraception was unsatisfied [49]. Due to the higher unmet demand and lower usage of modern contraceptives, women are likely experiencing unintended and untimely pregnancies. Unwanted pregnancy has a variety of negative effects on a woman's health and economic development. For example, it increases maternal mortality, encourages prenatal depression, stunts children's growth because of malnutrition caused by frequent births, compromises the bond between the mother and child, and lowers women's participation in the workforce and politics [12][13][14][15]. In Ethiopia due to the lack of updated and reliable figures on spatial variation of modern contraceptive, it is difficult to establish policies and programs for the promotion of modern contraceptive use and to take an intervention to decrease unmet need of modern contraceptive use across the region. Therefore, the major goal of this study was to evaluate spatial variations in modern contraceptives use and the contributing factors among women of reproductive age Ethiopia. It is expected to have the following significance. The document was used to access spatial variations of modern contraceptive use and determinants factors of modern contraceptive use. Therefore, it is important for the stakeholders to understand various factors that affects modern contraceptive use. Additionally, the findings of this study would provide better evidence for policymakers, ministry of health and other stakeholders, which in turn might enable designing and executing appropriate interventions at different levels to increase the rate of modern contraceptive usage, to reduce unmet need of modern contraceptive and to improve the health system as a whole. --- Methods and data source --- Study design, setting and period The secondary data for this analysis were obtained from mini-Edhs of 2019 that was found at DHS portal of . The 2019 EMDHS sample was stratified and selected in two stages. Each region was stratified into urban and rural areas, yielding 21 sampling strata. Samples of EAs were selected independently in each stratum in two stages. To ensure that survey precision was comparable across regions, sample allocation was done through an equal allocation where in 25 EAs were selected from eight regions. However, 35 EAs were selected from each of the three larger regions: Amhara, Oromia, and the Southern Nations, Nationalities, and Peoples' Region . In the first stage, a total of 305 EAs were selected with probability proportional to EA size and with independent selection in each sampling stratum. A household listing operation was carried out in all selected EAs from January through April 2019. The resulting lists of households served as a sampling frame for the selection of households in the second stage. In the second stage of selection, a fixed number of 30 households per cluster were selected with an equal probability systematic selection from the newly created household listing. All women age 15-49 who were either permanent residents of the selected households or visitors who slept in the household the night before the survey were eligible to be interviewed. In all selected households, women age 15-49 were interviewed using the Woman's Questionnaire. A total of 9150 households were selected for the sample, of which 8794 were occupied. Of the occupied households, 8663 were successfully interviewed, yielding a response rate of 99%. In the interviewed households, 9012 eligible women were identified for individual interviews; interviews were completed with 8885 women, yielding a response rate of 99%. Overall, there was little variation in response rates according to residence; however, rates were slightly higher in rural than in urban areas. From 8885 interviewed women,5934 were from rural area and the remaining 2951women were from urban area [6]. Since the outcome variable for this study was modern contraceptive utilization .so, the final sample size for this analysis was 8885. --- Study variables The outcome variable for this study was the modern contraceptive use, which was coded as "0" if the women use modern contraceptive and "1" if the women not use modern contraceptive . Individual-level variable: maternal age, educational status, religion, sex of household, wealth status, current marital status and number of children. Community-level variable: Region and place of residence. --- Inclusion and exclusion criteria All women who were found within the range of reproductive age groups included in this study. All women who were outside the range of the reproductive age group excluded from this analysis. --- Data management and analysis In all the analyses, we adjusted for the complex nature of the survey design by accounting for clustering, stratification, and weighting. Due to the comparisons and combination of surveys from different regions, with different target population sizes, the weights were denormalized. This was done by dividing the women's standard weights and their total number the country by the respective survey sampling fraction. Data Extraction, recoding, and both descriptive and analytical analysis were carried out using STATA version 14 software. The multilevel analysis was fitted due to the hierarchical nature of the demographic health survey data. In this study, the multilevel mixed-effects model was employed and the dependent variable was binary. The Intraclass Correlation Coefficient was employed to assess the variability across the region. Bi variable analysis was first done for maternal age, region, place of residence, educational status, religion, sex of household, wealth status, current marital status and number of children, to select variables for multivariable analysis and variables with p-value less than 0.05 were considered for multivariable analysis. --- Spatial analysis In Stata 14, the weighted frequency of modern contraceptives, cluster number, and geographic coordinate data were combined. Data was then exported to Excel and imported into ArcGIS 10.7 for spatial analysis. --- Spatial autocorrelation analysis The spatial autocorrelation statistic examines the distribution of modern contraceptives usage among Ethiopian women of reproductive age. Moran's I is a spatial statistic that uses the entire data set to generate a single output value that varies from -1 to + 1 in order to evaluate spatial autocorrelation. I, Moran's Values around -1 suggest scattered modern contraceptive usage, whereas values near + 1 indicate clustered modern contraceptive use, and values near 0 indicate random distribution of modern contraceptive use. A statistically significant Moran's I lead to the failure to reject the alternative hypothesis and rejection of the null hypothesis and indicates the presence of spatial autocorrelation. --- Hot spot analysis The GI* statistics for each area were computed to determine how spatial autocorrelation varies in Ethiopia using Getis-OrdGi* statistics. The p-value is estimated for significance using Z-score in order to determine the statistical significance of clustering. High GI* statistical output suggests a "cold area, " whereas low GI* statistical output indicates a "hot spot. " --- Spatial interpolation To determine the impact of a particular event throughout the country, it is highly expensive and time-consuming to gather trustworthy data. As a result, using the observed data, interpolation was utilized to estimate a portion of a certain area. Based on sampled EAs from DHS, the spatial interpolation approach forecasts modern contraceptive usage in the un-studied portions of the country. In this work, modern contraceptive use in unobserved regions of Ethiopia was predicted using the standard Kriging spatial interpolation approach. The burden of modern contraceptive usage in unsampled regions was estimated for this study using the standard Kriging approach. --- Ethical consideration The measure DHS program used secondary publically accessible survey data, thus ethical review and participant permission were not required for this particular study. We asked DHS Program for permission to obtain and use the data for this study from their website, and they approved. The National Research Ethics Review Committee of the Ministry of Science and Technology as well as the Ethiopian Health Nutrition and Research Institute Review Board granted clearance for the EMDHS data collection. --- Result --- Sociodemographic characteristics and bivariate analysis This study includes a total weighted sample of 8885 reproductive age women from the 2019 mini-Ethiopian demographic and health survey. 2210 of the total study participants were between the age range of 15-19 years, 6024 were from rural areas, 3701 were not attending formal education, 3685 were orthodox, 7050 were male headed household, 268 were poorest 5743 participants. Were married and 2262 use modern contraceptive. Bivariable logistic regression was employed for age, place of residence, religion, educational status, sex of household, wealth index current marital status, among reproductive age women. The result of the bivariable analysis demonstrated that contraceptive use had significant relationships with age, place of residence, religion, educational status, sex of household, wealth index, current marital status among reproductive age women. Variables having a p-value less than 0.05 were considered in multivariate analysis. . --- Spatial analysis results --- Spatial distribution of modern contraceptive use In Ethiopia, modern contraception use was analyzed geographically using 305 clusters. The number of current contraceptive usage instances in each cluster corresponds to one enumeration area at each spot on the map. This study's analysis of the spatial distribution of modern contraception use showed that a higher proportion was used in Ethiopia's northern region. The southern region of Ethiopia had a low rate of modern contraception usage Fig. 1. --- Spatial autocorrelation modern contraceptive use The spatial autocorrelation result reveals whether modern contraception use in Ethiopia is randomly distributed across the region, clustered, or dispersed. The results of the spatial autocorrelation study showed a clustering effect in the use of modern contraceptives across the country. The clustered patterns demonstrated a clustering effect on the usage of modern contraceptives in Ethiopia. The outputs have automatically generated keys on the right and left sides of each panel. The probability that this clustered pattern is the result of random chance is less than 1%, according to the z-score of 31.07 . The bright red and blue colors to the end tails indicate an increased level of significances Fig. 2. --- The hotspot analysis result The hotspot analysis result shows the low proportion and high proportion areas of modern contraceptives use in Ethiopia. The blue colors were seen in the Tigray, Afar, Amhara, and northern part of Oromia regional states, which are cold spot areas . The redcolored hotspots were found in Gambella, SNNPRS. A region of Oromia, Diredawa, and Harari Fig. 3. --- Spatial interpolation or prediction Based on the sampled region, the spatial interpolation approach predicts the proportion of modern contraceptive use for unsampled areas. The area map was described using the standard Kriging method. The red color represents the projected low use of modern contraceptives. If the area's color shifted from red to blue, it indicates that more people in the area are using modern contraceptives than was previously expected. The country is predicted to utilize modern contraceptives at a high rate, as shown by the blue color. According to the prediction's results, Tigray, Afar, Amhara, and several areas of Oromia have high rates of modern contraception utilization. The red color prediction showed that the regions of Gambella, Benishangul, SNNPR, Oromia, Somalia, Harari, and Diredawa had the lowest rates of modern contraception usage nationwide Fig. 4. --- Model comparison Four models were built for this multistage investigation. The first model was built. Without independent factors, it is possible to determine how community variation affects women's usage of modern contraceptives. The second model included variables at the individual level. Community level characteristics were incorporated in the third --- Discussion The study assessed the spatial distribution of modern contraceptive use and the factors that influence its use among women of reproductive age in Ethiopia, using the recent Ethiopian mini demographic health survey data conducted in 2019. In general, this study showed geographical variations in the usage of modern contraceptives among women of reproductive age. In Ethiopia, the northern region had a higher proportion of women using modern contraceptives, while the southern region had a lower proportion. Particularly, areas of southern Ethiopia including Gambella, Benishangul, SNNPR, Oromia, Somalia, Harari, and Diredawa had low rates of modern contraception use. Furthermore, the northern region of Ethiopia had the highest rate of modern contraceptive use. High rates of modern contraception use are found in Tigray, Afar, Amhara, and several regions of Oromia. This variations were existed, because of Ethiopia is a lowincome country with limited access to family planning , particularly in the developing regions [16]. The Ethiopian government has significantly increased the number of medical facilities and qualified personnel [17]. In turn, this led to a rise in the country's contraceptive prevalence rate , which increased from 8% in 2000 to 41.4% in 2019 [18]. However, there was a significant regional variation in CPR among the developing regions [19]. Additionally, we hypothesize that this discrepancy may result from regional socioeconomic disparities. The results of the bivariable analysis in this study showed that among women of reproductive age, the use of contraception was significantly correlated with maternal age, place of residence, religion, educational status, sex of household, wealth index, and current marital status. According to other similar studies that supported this finding, the use of modern contraceptives is influenced by a variety of factors, including age, education, communication between couples about FP, the number of living children, husband approval of FP, the intended number of children, place of residence, religion, knowledge, and attitudes [9][10][11]. This survey revealed that 25.5% of women of reproductive age used modern contraceptives. This finding was slightly higher than the studies which was conducted in Ethiopia [20] and in Ghana [21]. On the other hand the finding of this study was lower than the study which was conducted in north west Ethiopia [22] Kenya [23] and in Ethiopia [24]. These variations may have been caused by the study period, sample size, and study area's locations. The findings of this study indicated that women of reproductive age who resided in urban areas had higher odds of using modern contraceptives than did women who lived in rural areas. This finding was supported by the studies which was conducted in Nigeria [25] and in Senegal [26]. This discrepancy may have existed due to the great availability of family planning services and the rising number of health institutions in urban areas. However, most women face several barriers to obtaining and using modern contraceptives, particularly those who live in rural areas [27] such as, low educational attainment in rural area [28], Poverty rates in rural areas have been consistently higher than those in urban area [29], deep rooted cultural belief [30] especially, the husband's role as primary decision-maker and the desire for a large family [31], fear of side-effects due to lack of knowledge [32], long distances to healthcare facilities, and inadequate stock of preferred types of modern contraceptives [33,34]. According to this study, women of reproductive age who were attended in primary education were less likely to use modern contraceptives than those attended in higher education. This finding was consistent with the studies which was conducted in Ethiopia [35], in Kenya [36] in Zaire [37]. The first possible reason for these variation were women who receive more maternal education may be more informed about the variety of contraceptive methods available, which will enable them to use contraception more effectively and make informed decisions [38]. The second reason were, when education levels rise, wealth and prestige tend to rise as well, and the desire to limit family size by utilizing modern contraceptives would increase [39]. The results of this study showed that Muslim women in reproductive age used modern contraceptives at a lower rate than orthodox and protestant women. This was in line with the studies which was conducted in Ethiopia [40,41], Zambia [42], Ghana [21] and Tanzania [43]. Religious acceptance of family planning methods might be one reason for this variation, although participants' interpretations of their religion's position on the topic varied. Most people who believed that family planning was incompatible with their beliefs declared that they had a duty to have as many children as God would allow them to have. Others thought family planning was appropriate given their moral obligation to raise and safeguard their children by reducing the number of children [43]. Additionally, there are misinterpretations of Islamic teachings on polygamy, which is still practiced and has a negative impact on FP adoption, as well as contraceptives, which is frequently prohibited [44]. This study demonstrated that male headed households were more likely than female headed households to utilize contraceptives. This study finding was concurrent with studies which was conducted in Ethiopia [45], in Tanzania [46]. Since, Interspousal communication is a key issue that affects the sustained use of family planning [50]. Men were viewed as the only ones who could provide the demands of their families. Women were not thought of as decision makers, but rather as implementers of what males had decided, without challenging those decisions [51]. According to this study, women who were poorer were less likely than women who were wealthy to utilize modern contraceptives. This finding was in line with the studies which was conducted in Nigeria [52], in Ethiopia [53] and in Amhara region of Ethiopia [54]. The contributing factors for these disparity were the usage of contraceptives has a financial cost associated with it, rich women might be able to avoid any financial barriers to using modern contraceptives, while poor women might not [55,56], the level of household wealth has a significant impact on access to education, basic healthcare services, and health information [57]. This study demonstrated that married women were more likely than single women to utilize modern contraceptives. This finding were consistent with studies which were conducted in southern Ethiopia [58], north west Tanzania [59], and Kenya [60]. From the perspective of males as a potential factor that influences the usage of modern contraceptives for the purposes of fertility control, these differences may have arisen [61]. --- Conclusion In this study Individual and community level factors were associated with modern contraceptive use and also there were spatial variations in modern contraceptive use across the region among reproductive-age women. Empowering women to have better educational status, improving the wealth index, promoting marriage, creating awareness among rural residences women and promoting education about modern contraceptives through religiously acceptable persons, and promoting modern contraceptive use in developing regions were the key factors to improve modern contraceptive use among reproductive age women in Ethiopia. --- Strengths and limitations of this study • The DHS has a similar design, with identical variables in a different environment; the result may, therefore, be applicable to other similar locations. • The study used a sufficiently large sample size at the national level to ensure its representativeness. • Recall bias is one of the potential drawbacks, especially for retrospective data based on past experiences. • The magnitude of the bias is often unknown and correcting for the bias is difficult. • Since, this study was cross sectional study.it doesn't showed temporal relationships between independent and dependent variable. --- --- List of variables --- --- --- Competing interests In relation to the research, authorship, and publication of this work, the author disclosed no possible conflicts of interest. Author details 1 College of Medicine and Health Science, Mizan-Tepi University, Mizan Teferi, Ethiopia. 2 College of Medicine and Health Science, Wollo University, Dessie, Ethiopia. Received: 24 August 2022 Accepted: 26 October 2022 ---

Introduction Globally, in 2019, there are 1.9 billion women of reproductive age (15-49), of which 1.1 billion have a need for family planning. Of these, 842 million use contraceptives, and 270 million still have an unmet need for contraception. Ethiopia is a low-income country with inadequate access to family planning (FP), especially in the developing regions. The Ethiopian government was striving to increase the number of health facility in order to provide quality maternal care and services. Increasing the modern contraceptive prevalence rate is one of the goals of the government to reduce maternal and child mortality and morbidity. Methods Secondary data analysis was conducted using data from mini-EDHS of 2019 demographic and health Survey datasets. The study comprised a total of 8885 reproductive-age women. Spatial variations and multilevel mixed effect analysis on determinants factors of modern contraceptive use among reproductive age women in Ethiopia; evidenced by mini-EDHS 2019. Finally, the percentage and odd ratio, its 95% confidence intervals, and the result of spatial analysis were reported. Result This study includes a total weighted sample of 8885 reproductive-age women from the 2019 mini-Ethiopian demographic and health survey. The prevalence of modern contraceptive use was 25.5% in Ethiopia. living in urban area [AOR = 2.13; 95% CI = (1.75, 2.61); P = 0.000], being married [AOR = 1.42; 95% CI = (1.19, 1.70); P = 0.000] were found positively associated with contraceptive use. In contrast to this, attending primary education [AOR = 0.91; 95% CI = (0.74, 1.12); P = 0.000]., being Muslim [AOR = 0.25; 95% CI = (0.22, 0.29); P = 0.000], being poorest [AOR = 0.54; 95% CI = (0.45, 0.66); P = 0.000] were found negatively associated with contraceptive use.In this study Individual and community level factors were associated with modern contraceptive use and also there were spatial variations in modern contraceptive use across the region among reproductive-age women. Empowering women to have better educational status, improving the wealth index, promoting marriage, creating awareness among rural residences women and promoting education about modern contraceptives through

his article describes recent research using social norms/masculinity theory administered to an under-represented and often over-looked college population of student fathers at several schools in Southeast Minnesota. The focus is on a relatively small cohort of young fathers in the Young Student Parent Support Initiative of Winona State University but the findings are significant for two important reasons. First, the results are consistent with a larger study of college men across several years in school and at seven different colleges and universities. Secondly, the results and the methodology used in the research provide an opportunity to expand the use of these findings to create positive change in health of this group of young fathers and positive change in the health of their children. We will explain the young fathers program, how it was created and became Dedicated Academic Dads at WSU and merged into the student parent program and student parent center of Southeast Minnesota. It is a part of a larger effort in Minnesota to create student parent centers state-wide; funded by the Office of Adolescent Health through the Minnesota Department of Health . We will also do a brief synopsis of the Gender Role Conflict Survey created by James O'Neil which has been proven to show positive correlations between high scores on the survey and poor health of men. We have combined the O'Neil survey with social norms theory to create a social norms masculinity survey measuring the misperceptions of masculinity among participants. This survey has been administered to a large number of college men and the results published in a monograph entitled Forging the Male Spirit, edited by Merle Longwood et al. in 2012. This article updates that research by applying it to the cohort of young fathers in 2013 showing that the findings with this group are consistent with other findings with male college students. The exciting implication of these findings is that they can be used to improve the health of student fathers and through their role as care-givers to their children-the health of their sons and daughters. The National Social Norms Institute shows that this approach continues to be used successfully to decrease risk behaviors and increase protective and prosocial behaviors in many colleges, universities, schools and communities, nationally and internationally. The mission of the institute has expanded to T MCS -Masculinities and Social Change 269 include research, evaluation, and dissemination of information on the social norms approach to the field . Social norms theory has been successfully applied to health problems such as binge drinking. Through small group interventions and larger scale social norms advertising campaigns, it is reported to have a positive impact on the reduction of student alcohol abuse. We see the opportunity here to use masculinity survey data collected on this cohort to change the health behaviors of college student fathers to encourage more use of preventative health services and health care services for themselves and their children. A recent Minnesota Public Radio story on Major General Dana Pittard, who has served as the commander of Fort Bliss military base, illustrates the potential for this work 1 . Major General Pittard, who has experienced some mental health issues of his own, was particularly sensitive to the rate of suicides in the military and the link to depression. He looked at the data from his own base and noticed that the rate of suicide among soldiers who had sought counseling for symptoms of depression was lower. He further found that the "macho culture" of the military was an inhibitor to soldier's willingness to seek counseling. He initiated a program to address the appeal to traditional masculinity as a barrier for seeking help. Soldiers who were interviewed said their drill sergeant told them it was a sign of weakness to go to counseling and to "man-up" if they were experiencing thoughts of depression or suicide. Major General Pittard mounted a campaign to discourage that type of tough guy talk related to mental health symptoms. The rate of seeking counseling for depression increased and the number of suicides decreased for the last three years in a row. The numbers were small but the results significant. We see an opportunity to pilot an approach with student fathers similar to the approach at Fort Bliss to have a similarly positive impact on their willingness to seek health care services. --- The Story of Dedicated Academic Dads The Winona State University DADs program began in 2010 when students in our TRiO Student Support Services grant for first generation, low income students began signing up for services. The first three students who appeared in my office to join the program were young student fathers. Having worked with college men for most of my career and having discovered that men's groups work well to engage college men, I invited the students to meet with me once a week for lunch. The lunches were successful once an atmosphere of trust was established and deep sharing began to occur on a wide range of issues. The original group of three quickly grew to over a dozen with no signs of diminishing. At this point the MDH sent out a request for proposals, inviting colleges and universities in MN to apply for funds to start student parent centers. I asked the young fathers if they wanted to get some grant writing experience and submit an application. With about twenty days to complete the task, the young fathers pitched in to complete the application with a great sense of accomplishment and teamwork. For the team-building alone this would have been a successful experience but the application was accepted to found a student parent center for both student fathers and mothers in SE MN. The WSU Young Student Parent Support Initiative was born. The YSPSI is located on three campuses: Winona State University in Winona, MN with programs in the student center as well as the Child Care Center, Southeast MN Technical College in Winona , Winona State University in Rochester and Rochester Community and Technical College in Rochester where programming happens in the student cafeteria and adjacent meeting rooms. The target population for recruitment is 18-25 year old college student parents but all student parents are welcome. There is a special outreach initiative to high school teen parents who are involved in the Area Learning Centers from the local area. Student task force members and staff conduct information sessions with them on how to prepare for college. The students are invited to campus to interact with college parents and experience college life. The heart of the program is the personal relationships created with staff members and student task force members through regular programs and activities. A close alliance with the Child Care Center at Winona State creates additional activities to serve student parents in Winona who have their children enrolled in child care. Recruitment and retention begins with invitations sent to the list of student parents enrolled in the institutions to join luncheons designed around fathers and mothers issues. Gift cards of $25 are used as incentives for sign up, evaluation and doing research surveys but a personal invitation MCS -Masculinities and Social Change 271 from a current group participant is often the most effective recruitment and retention strategy. A Facebook link, persistent email, posters, and flyers also help to attract new members and to keep them informed of activities. Student parents are interviewed about their need for resources and services and they are referred to campus resources and local agencies that can assist them in their parenting practices. The grant aims to insure pregnant and parenting students are able to accomplish their higher education and post-secondary education goals and maintain positive health and well-being for themselves and their children. The heart of the program is hosting regular weekly lunches and workshops located on our three campuses in Winona and Rochester with dinners in the Child Care Center once a month. We have discovered that having separate lunches for those interested in father's issues and mother's issues works well. We do not limit who attends the lunches but having begun as a dads' group, efforts have been made to preserve a forum for those discussions and relationships to grow among young fathers. A curriculum created by the Minnesota Fathers and Families Network that systematically addresses issues student fathers face guides the content of the luncheon meetings 2 . Addressing financial management and tax form preparation in March and April is one example of a consistently successful program. The focus on fathers in the YSPSI program has been so popular that it has been covered in local TV and newspaper stories. This has led to invitations to participate in several webinars with Academic Impressions and Magna Publications on working with student fathers as well as two national conference presentations for the American Men's Studies Association , the National Association of Student Personnel Administrators , and a state wide presentation at the Minnesota State College and University System Diversity Conference . We have also developed some multi-media resources for working with student fathers such as a --- Student-faculty research To continue to engage this group of at-risk students, I invited the DADs to participate in the social norms masculinity research project we had been doing with colleges across the country previously funded by the Lilly Endowment. It seemed that doing research on this focused group of young fathers had the potential to not only discover if the findings from college men in different schools and age groups across the country would be consistent, but also provide the opportunity to impact their behavior. We were particularly interested to see if we could improve their behavior in terms of using preventative services as well as going to the doctor. My own research has focused on engaging college men in work for the common good. It is basically taking gender theory from a male perspective and applying that theory in practice. I edited Designing Effective Programs and Services for College Men, 2004 andEngaging College Men, 2010. The last book was funded by the Lilly Endowment and offered fourteen colleges and universities the opportunity to run pilot programs to determine the best practices for engaging college men in work for the common good. The latest social norms research published is in Forging the Male Spirit by Merle Longwood, 2012. We are engaging young fathers not only in small groups but engaging them in student-faculty research and career development. This is another way to retain and graduate the group of at risk students but also prepare them for further study in graduate school. Being involved in student-faculty research enhances students' learning as well as gives them an opportunity to contribute to the men's studies field. The Council on Undergraduate Research is committed to "inclusivity and diversity" and they aim to increase and encourage participation of students that have been traditionally underrepresented in undergraduate research . This process worked well with Alvin Thomas, an exchange student from Morehouse College who worked with me at Saint John's on a research project interviewing Tibetan Monks in Dharamsala, India on why they chose to become monks. Our Lilly project at Saint John's was to take a cohort of 15 college students on a service/research trip to India where they interacted with monks from the Dalai Lama's monastery through the research project but also had the benefit of reflection on their own vocational choices. Alvin played a major role in the data collection, analysis and preparing the interviews and findings for publication in the Journal of Qualitative Research 4 . He completed a Ph.D. in the spring of 2013 at the University of Michigan and is now a professional in the field. --- Method The core of my research has been to explore how a clearer understanding of men and masculinity can be used to improve the engagement of college men in programs and services that will benefit them and society. The tool we use to understand how college men identify with traditional masculinity is the survey developed by James O'Neil to measure the stresses of attempting to live up to traditional masculine gender roles. His Gender Role Conflict Scale has been administered to a broad base of men of all ages and backgrounds over more than a decade and provided a rich data pool to compare with our population of college men. Over 230 studies and twenty-five years of research have provided substantial support for the study of gender role conflict. 5 The wide use of the survey, as well as the many studies to support the validity of the findings, was attractive as we sought to use a well-respected tool to help us understand our small population of college-age men. The GRCS is a survey of thirty-seven questions, divided into four subscales or psychological domains. The first domain, entitled Success, Power, and Competition , describes personal attitudes about success pursued through power and competition. The second domain, entitled Restrictive Emotionality , describes difficulties and fears about expressing one's feelings and the problem of finding words to express basic emotions. The third domain, entitled Restrictive Affectionate Behavior between Men , describes limited ways to express basic emotions. The fourth domain, entitled Conflict between Work and Family Relations , describes difficulties in balancing work, school, and family relations, resulting in health problems, overwork, stress, and a lack of leisure and relaxation. The overall results of the studies reviewed indicate that high scores on the GRCS are significantly correlated with numerous psychological problems for men. High scores are related to depression, low self-esteem, and stress. In the intrapersonal context, high scores on the GRCS have been associated with men's depression , male college students' lack of well-being, shame and alexithymia drive for muscularity and highrisk health behaviors, helplessness, self-destructiveness, and suicide probability . In addition to the intrapersonal context, in an interpersonal context, high scores on the GRCS have been related to dysfunctional patterns in interpersonal relationships, attachment problems, sexual harassment, rape myth acceptance, and hostile attitudes toward women 6 . Taken together, the four domains on the GRCS describe traditional masculinity. We felt comfortable that it would help us identify where college men would rank themselves in terms of traditional masculinity. In a comprehensive article by Will Courtenay men's socialization is discussed to provide an understanding as to why college men have developed unhealthy lifestyles. Courtenay states, "The importance of gender-specific interventions cannot be overstated." My own personal contribution to this field is that college men consistently say they do not endorse this traditional view of what it is to be a man but think that their friends all do. This is social norms theory and a misperception of masculinity. I try to get fathers interested in this research on themselves and use it as another way to recruit them into the program and into research and publication activity. This approach came from attending several social norms conferences and some consultation with Alan Berkowitz, a researcher and counseling psychologist, who urged us to research social norms masculinity 7 . Social norms research started at Hobart and William Smith Colleges and focused in the early years on the perceptions and misperceptions that students had about the norms for drinking alcohol. A persistent and consistent misperception was discovered among college students about how much drinking was taking place on a campus. The number and amount that a student's peers were drinking was routinely overestimated, leading to increased drinking behavior by the student, reinforced by the belief that "everyone was drinking." Berkowitz charged us to see if there was a similar pattern with regard to masculinity and its resulting behaviors. We devised the initial Social Norms Masculinity Survey by simply administering the O'Neil survey twice to participants, instructing them to first answer the questions for themselves and then a second time for the typical male college student. We wanted to know to what extent Saint John's students resembled national samples of college men on the GRCS in the O'Neil database. We also wanted to know to what extent Saint John's University students displayed differences in the way they answered the survey for themselves and for the typical SJU student. We were optimistic that sharing the results of the survey with students in presentations or groups discussions could impact SJU students and their behavior related to what they perceived to be the social norms of masculinity on campus. We also added a few more questions on social norms masculinity and spirituality to the SNMS devised to measure whether men were interested in talking about deeper personal matters such as spirituality and particularly if they were interested in joining men's groups or talking about such matters during one-on-one settings. The added questions were: "How important is spirituality to you and how interested would you say the typical college man is?" "How willing are you to share this interest and how interested is the typical college male?" "How willing are you to discuss this interest in some kind of group and how interested is the typical man?" "How interested are you in one-on-one interaction and how interested is the typical college man?" There was another version of these questions administered to my college fraternity. The questions were changed slightly to determine how interested they would be in participating in small groups within the fraternity organized around the theme of "brotherhood." What we attempted to measure was whether the responses of the individual members to questions regarding the importance of brotherhood and meeting in small groups would differ significantly from the responses they thought their brothers would give to these questions. The pattern of consistent misperceptions of masculinity held. We began piloting this SNMS survey several years ago with small groups on the campuses of Morehouse College, the University of the West --- Kellom & Hammel -Misperceptions of Masculinity Indies, and Saint John's University. We sought to discover whether there was a significant pattern of misperception with regard to sharing personal matters and masculinity. The preliminary findings indicated that, indeed, there was a misperception on both sharing personal matters and of masculinity. Where college men were ranking themselves as less committed to traditional masculinity than they thought their friends were. They also ranked themselves as more interested in sharing personal matters than they thought their friends were. In 2010, we administered the SNMS survey to a group of six colleges in the Lilly Endowment project to engage college men. By expanding the study to other campuses, we saw that the patterns observed on the first three campuses were similar to those on other six campuses. In 2012, we began to administer the survey to the DADs to simply compare and see if the results from our small cohort of student fathers would be consistent with the results from several years of data with Saint John's students and with the national sample of colleges. --- Results We administered the SNMS survey to 60% of the student fathers enrolled in the WSU YSPSI program. Males make up 18% of the 128 participants in the Winona YSPSI program. This is typical of the other student parent centers as there are a total of ten student parent centers funded by the MDH in Minnesota and the average male participation in those programs is 18%. The Winona YSPSI has a lower than average participation of racially diverse students at the other student parent centers which is representative of the population in southeastern MN. State-wide, 43% of YSPSI participants are of a minority race . WSU statistics are, however, similar to the statistics in MN serving nontraditional students . The age of WSU participants range from 18 to 35 years old with 33% of DADs between 18-24 years old. In Winona, 50% of the student dads are single, 15% are in a relationship or partnered, 30% are married and 0% are divorced or separated. In Minnesota, 42% of the YSPSI participants are single, 24% are in a relationship or partnered, 25% are married and 9% divorced or separated. Economically, the WSU statistics differ in that 96% of WSU DADs are employed either full-time or part-time and statewide only 78% of households have one or more employed adults and 22% have no employed adults in their households. Food security is an issue for students at WSU and statewide with 25% of DADs worried that they would run out of food and 42% of student participants in MN worried they would not have the resources to purchase food before they run out. Most of our students are facing financial difficulties and about 40% are on Medical Assistance. Fathers' involvement in their children's health is a concern. It is significant that 42% of the WSU's young fathers did not have a primary care physician for their children or did not know if there was one. Also 42% did not have their children's immunizations up to date or did not know if they were up to date 8 . What the demographics tell us, therefore, is that young fathers are financially stressed, have little time, and may have difficulty balancing time between family, work and school. Child care remains a need, as well as finding the time to actively participate in school activities. Their involvement in our program has provided them with additional knowledge regarding parenting, child development, self-care, enhancing their own health and that of their children; 80% found the student parent support groups extremely useful and 97% agree or strongly agree that the program has increased their sense of belonging to the school. Of the thirty-seven questions on the GRCS, ten make up the Restricted Emotionality subscale. Two sample questions from the subscale are: "Strong emotions are hard for me to understand" and "I have difficulty expressing my tender feelings." Students were asked to score their answers to all thirty-seven questions on the GRCS on a scale of 1 to 60, with agreement with the statement scoring the highest. They were instructed to answer the question for themselves and then the way they thought their peers would answer it. What we observed on the RE scale was a significant difference between the responses of the college men when they answered the survey for themselves and when they answered the survey for the typical male on campus. While there were slight variations in the strength of the responses each year, a consistent and statistically significant gap existed each year between the responses that students gave for themselves and those they gave for each other. This is often described as "I am willing to share my emotions but my friends sure are not." . At first, we thought this might just be a phenomenon among first-year students and that sampling sophomores or seniors would show a gradual amelioration in the gaps, but we didn't find that. Seniors scored themselves lower than their peers on the RE scale in 2009, but their scores were almost identical to the first-year students and they still ranked their peers in the mid-30s on the scale, showing little or no change. Due to space limitations in this article, we will discuss only the findings on the RE and RABBM scales although the results on the other two scales show the same misperception of masculinity. On the Restricted Affectionate Behavior between Men subscale , the pattern was the same. Eight of the thirty-seven questions make up this subscale and two of the questions were: "Hugging other men is difficult for me," and "Affection with other men makes me tense." Again, students consistently ranked their agreement with these statements lower than they thought other men would answer. Upon discussion of these findings with the students, one reaction that was fascinating was the process that the Caribbean men went through. As international students, they had the advantage of looking at their behavior and that of their peers in two cultural contexts. They recognized a significant difference between their behavior on campus and when they went home. In Trinidad or the Bahamas, they noted their extreme reluctance to express affection with other men, but when they returned to campus the same anxiety was not there, and there was a supportive environment to talk about it in class, in the men's center, or in the dorms. The misperception of the norm thus became obvious to them and, through discussions and being in men's groups with each other, they realized that sharing hugs and expressions of love and respect were welcomed and appreciated. Senior scores, by the way, were almost identical again to those cited above . The schools included in this survey were Augustana College, Hope College, Luther College, Wabash College, Wagner College, and the University of Portland. While the overall scores of the schools on the RE scale are higher than those for Saint John's University, the gap between the scores given by the students to themselves are still lower than the scores they gave to typical men on their campuses. This again indicates a misperceived norm. The pattern is similar on the RABBM scale , with students scoring themselves lower across the board than their peers . An opportunity also arose to sample students and alumni from my college fraternity, Delta Tau Delta, with the O'Neil masculinity social norms survey. The fraternity was struggling with how to organize its group formation activities. It is fascinating to me that the same pattern emerged from the fraternity brothers as we were seeing on our campus and other campuses. We used these results in conversations with actives and alumni to make creative change for a more cohesive brotherhood. We also administered the social norms spirituality survey to the fraternity and that pattern was also the same as that for other college men of every other group surveyed . As one can see the pattern of misperception holds. On every question from every group, there was a significant misperception, and in each case, the young men answering the survey rated themselves significantly higher in interest than the typical college men they knew. The greatest scores for those being surveyed and the greatest difference between "You" and "Typical" were related to the question of sharing and discussing spirituality. --- MCS -Masculinities and Social Change 281 Results of student fathers are also consistent with these findings. On every scale of the masculinity social norms scales the misperception of masculinity was greater for the typical dad than it was for the dad taking the survey. On the RE scale the young fathers thought that other dads would be higher than they were in the conflict they experience with feeling restricted about their emotions. Discussion of the findings with young fathers in our luncheon setting led to further agreement with those taking the survey. One father said "I thought I was probably unusual because it was not that important for me to show that I was a real man… it surprises me that other men feel the same as I do." . 282 On the RAABM scale the numbers were also similar with dads feeling less restricted or less conflict showing emotion toward other men than they thought the typical dad would feel. Discussion of this scale further revealed that dads were surprised that it was not unusual for there to be physical contact or even hugging among members of the group. "I didn't think this would be the norm but it apparently is," said one father . Note that the disparity between the self and typical reactions of the fathers is more extreme than any of the other groups. While student fathers rated themselves as around the norm with near 30% identifying with gender role conflict around restricted affection their estimation of the typical student father was almost at 45, over 10 points higher than the estimates of other groups. --- MCS -Masculinities and Social Change 283 Similarly the differences on the Sharing Personal Matters questions showed disparities consistent with other groups. While the dads did not think that typical student fathers valued personal matters like spirituality or wanted to discuss these topics in either a group setting or in a one-on-one setting they revealed that they themselves wanted to . One can see this in the consistent and significant attendance at the DADs group meetings. The recent WSU YSPSI Student Questionnaire from 2012, shows that 78.9% of the participants had their program needs met. The top four needs were the following: a way to connect with other pregnant/parenting students, emotional support from YSPSI staff members, academic support/referrals from YSPSI staff members, and referrals for financial assistance. When participants in the program were asked if they felt that they had the resources or access to resources to be a successful student, 42% strongly agreed and 40% agreed. Participant student retention was measured by their intent to persist and 94% committed to remaining in school which is one of the goals of the YSPSI grant program 9 . --- Discussion --- Working with Young Fathers to bring about Behavioral Change There is the same consistent misperception of masculinity with student fathers on all the scales of the SNMS as the other groups researched. In one case , the scale is higher than with any other group. In essence, the young fathers are saying: "I do not have as much conflict about --- MCS -Masculinities and Social Change 285 sharing my emotions as the typical young father does" and "I do not have as much conflict about showing affection to other men as the typical young father does." The research on more health problems for young fathers related to higher scores on the masculinity scales should also hold. There are two basic approaches we can use going forward with this social norms data to change behavior. First is to share the results in small group social norms interventions. We can see in the results of the questions related to sharing and discussing more personal matters that student fathers already show a greater willingness to share than they think their peers do. There are also the same consistent misperceptions of masculinity on the questions related to meeting in groups or in one-on-one situations. Dedicated Academic Dads is all about dads telling their stories of parenting and sharing on a deeper level, their values and beliefs. Sharing some of the data about young fathers and asking them what it means to see such a misperception of the norm of masculinity is an interesting addition to the discussions and workshop topics. This approach has been piloted with the student fathers in several sessions and each time has led to significant discussion of their parenting. A more intentional approach is needed and some additional research to measure the effectiveness of these interventions. The training materials developed for student fathers have also enhanced the discussions. Using television commercials and using professional athletes like Dwyane Wade of the NBA, who is a role model and a father, have been inspirational. These activities are also suggestive of a second type of intervention. The creation of social norms marketing campaigns have also been shown to have an impact on behavior. In essence, using successful advertising techniques to get the message out to students that the norm is not what they perceive it to be. This has been proven to be successful in reducing binge drinking behavior on college campuses. With binge drinking the social norms marketing message is often that while students perceive that "everyone is binge drinking" the data shows that students only drink "an average of four drinks per week." Students are engaged in creating messages and posters and media materials that say things like "stop at buzzed." This not only engages a core of students in positive action but also ensures that the words and methods of delivery are directed at the audience in ways they will eagerly receive the message. Applying social norms marketing to young fathers, we could see a process of sharing the data with young dads and asking them to help design materials and a campaign to reach other young fathers with the message. While the traditional masculinity messages of risk taking are dominant in the culture and pressure is intense on young men not to seek medical help, we know now that young fathers are less likely to agree with those messages than they think the typical young father does. We would hope to spur the students to utilize medical services for preventive care through regular physicals and changing eating and other health behaviors. Also, it is important for them to participate in their children's pre-natal care, early childhood care and regular check-ups and other care. We can envision a campaign with posters and flyers distributed to programs working with young fathers correcting their misperceptions of masculinity with such messages as: "most young fathers think that having a primary care physician is an essential part of fatherhood" or "fathers are as concerned as mothers about the importance of pre-natal care -make that appointment today." We do not foresee these to be the exact wording , but student fathers devising "targeted" messages that they know would reach their peers is the key to a successful social marketing campaign. It is typical for a core of students to take great pride and ownership in the design and distribution of these materials. Presenting the material at social norms conferences and submitting them for awards adds to the excitement and can help promote students in the field of marketing and advertising. While the social norms approach is best known for its effectiveness in reducing heavy episodic alcohol consumption and alcohol-related harm among college students, it has also been used effectively in interventions targeting tobacco use, DUI prevention, seat-belt use, and tax compliance. Interestingly, effective interventions have not been limited to colleges and universities, but have also been reported in high school and communitywide settings as well. New areas of interest in the application of the social norms approach are also emerging, such as sexual assault prevention, the improvement of academic performance, and delaying sexual debut among students. The application of social norms methodology to masculinity and men's health would be an addition to the field of social norms research as well as to work with student parents. We plan to investigate the development of this kind of approach in our next grant cycle. We see the possibility to expand our work and materials to other campuses; and perhaps, could be shared with other states. It is the kind of activity that students eagerly get involved in, they know how to do and can involve their marketing classes, student work positions and internships. We have just received notification from the MDH that they are offering four more years of funding to the YSPSI programs. Thanks to this generous funding, the work will continue. --- Notes 1 A recent Minnesota Public Radio story on Major Pittard illustrates the impact of traditional masculinity on the lives of soldiers . 2 Minnesota Fathers and Families Network serve fathers, professionals, social service workers, educators, and advocates across Minnesota. They promote practices and policies for positive father-child relationships and family relationships.

Building upon previous research on social norms theory and masculinity theory, this article is an attempt to apply this research to an under-represented cohort of student fathers. The finding of a misperception of masculinity is consistent with a larger study of college men across years in school and at seven different colleges and universities. The original research can be found in the monograph entitled Forging the Male Spirit, edited by Merle Longwood et al. in 2012 with a brief synopsis of the Gender Role Conflict Survey created by James O'Neil. This article explains the opportunity this misperception presents to use the finding to create positive change in behavior in a cohort of young fathers that were studied. These student fathers are part of a larger group of participants in a grant funded program through the Minnesota Department of Health through the Office of Adolescent Health. The exciting implication of this finding is that the misperception of masculinity can be used to improve the health seeking behavior of student fathers for themselves and for their children.

Emergence of Social Media Culture Among Adolescent Girls --- The Pervasiveness of Social Media 1.1.1 A Surge in Social Media Usage Among Adolescent Girls Over recent years, there has been a remarkable surge in the adoption of social media platforms among adolescent girls. This surge is indicative of a broader societal trend, with platforms like Instagram and TikTok becoming indispensable components of daily life for this demographic. The escalation in social media usage signifies a profound shift in communication patterns and social interactions among adolescent girls. These platforms are no longer just avenues for socializing; they have evolved into crucial mediums for self-expression, identity formation, and cultural engagement. The surge in social media engagement is not merely quantitative but has qualitative implications for the social experiences of adolescent girls. The platforms they choose to engage with actively contribute to the shaping of their worldview, values, and self-perception. This shift reflects a cultural transformation wherein social media plays a central role in the lives of adolescent girls. The platforms act as dynamic spaces where friendships are forged, self-identities are curated, and societal norms are both reflected and challenged. Understanding the depth and impact of this surge in social media usage is essential for comprehending the evolving cultural landscape of adolescent girls in contemporary society. --- The Omnipresence of Beauty Standards on Social Platforms In tandem with the surge in social media usage among adolescent girls is the pervasive influence of beauty standards on these digital platforms. The omnipresence of beauty ideals is unmistakable, as these platforms serve as virtual stages where societal norms of attractiveness are both showcased and internalized. Social media, particularly platforms like Instagram and TikTok, acts as a visual landscape dominated by carefully curated images that often perpetuate narrow and unrealistic standards of beauty. The omnipresence of these beauty ideals shapes the perceptions of adolescent girls, influencing their self-esteem, body image, and overall sense of self-worth. The constant exposure to meticulously crafted representations of beauty creates an environment where appearance is meticulously scrutinized. This phenomenon contributes to the cultivation of a beauty-centric culture, where individuals, particularly adolescent girls, may feel compelled to conform to unrealistic standards. The omnipresence of beauty standards on social platforms underscores the need for a nuanced understanding of the complex interplay between virtual influences and real-world perceptions. As these platforms continue to shape the cultural and social experiences of adolescent girls, addressing the impact of beauty standards becomes paramount for fostering positive self-image and well-being. --- Shaping Perceptions: Social Media and Body Image --- Beauty Standards and Idealization --- Impact of Beauty Ideals on Body Image Perceptions The influence of beauty ideals on body image perceptions is a critical aspect of the interplay between social media and the self-perception of individuals, particularly adolescent girls. The impact is profound, with social media platforms acting as potent vehicles for the dissemination and reinforcement of societal beauty norms. The constant exposure to idealized images of beauty on social media contributes significantly to shaping how individuals perceive their own bodies. Adolescents, bombarded by carefully curated images that often adhere to narrow standards of beauty, may internalize these ideals, leading to distorted perceptions of their own physical appearance. Moreover, the impact extends beyond mere comparison; it infiltrates the psyche, influencing self-esteem and contributing to the development of unrealistic expectations regarding one's body. The pressure to conform to these beauty ideals, reinforced by the pervasive nature of social media, can contribute to heightened levels of body dissatisfaction and, in some cases, the development of negative body image. Understanding the intricate relationship between beauty ideals propagated through social media and the resulting impact on body image perceptions is crucial for addressing the mental and emotional well-being of adolescent girls. It highlights the need for media literacy and strategies to promote a more diverse and inclusive representation of beauty in the digital realm. --- The Perpetuation of Unattainable Beauty Standards Within the realm of social media and its influence on body image, a notable phenomenon is the relentless perpetuation of unattainable beauty standards. Social platforms, particularly Instagram, TikTok, and others, serve as conduits for the dissemination and perpetuation of idealized images that often fall outside the realm of realistic expectations. The perpetuation of these unattainable beauty standards is multifaceted. Influencers, celebrities, and media representations showcase meticulously curated images that are enhanced and filtered, presenting an idealized version of beauty that is often unattainable in reality. The ubiquity of such images can lead to a distorted perception of beauty and contribute to the internalization of unrealistic ideals by adolescent girls. This phenomenon not only fosters a culture of comparison but also cultivates a pervasive sense of inadequacy and dissatisfaction with one's own appearance. The constant exposure to flawlessly presented images can erode self-esteem and contribute to a sense of perpetual striving for an unachievable aesthetic. Addressing the perpetuation of unattainable beauty standards on social media is crucial for promoting healthier body image perceptions among adolescent girls. Encouraging authenticity, diversity, and self-acceptance in the digital space can contribute to a more positive and inclusive representation of beauty, mitigating the adverse effects of unrealistic ideals on the well-being of individuals. --- Navigating Self-Worth: Social Media's Influence on Self-esteem --- Social Comparison and Self-Worth 3.1.1 The Role of Social Comparison in Shaping Self-Esteem One of the intricate ways social media influences self-esteem is through the pervasive practice of social comparison. The digital landscape, particularly on platforms like Instagram and Facebook, facilitates constant exposure to the lives and appearances of others. This exposure often leads to a subconscious evaluation of one's own life and, more significantly, one's self-worth. The role of social comparison in shaping self-esteem is profound. Adolescent girls, in their formative years, may find themselves comparing their achievements, appearance, and lifestyles to the curated content of their peers or influencers. This comparison can evoke feelings of inadequacy, as individuals measure their worth against often embellished or selective portrayals on social media. The consequences of this social comparison are not merely momentary; they can have lasting impacts on self-esteem. The perpetual nature of social media fosters an environment where individuals may feel a constant need to measure up to unrealistic standards, leading to a sense of inadequacy, self-doubt, and, in some cases, anxiety and depression. Understanding the role of social comparison in shaping self-esteem is crucial for developing strategies to promote positive mental well-being among adolescent girls. Encouraging a more mindful and balanced approach to social media use, emphasizing individual strengths, and fostering a culture of support and authenticity can contribute to a healthier relationship between social media and self-esteem. --- The Psychological Effects of Constant Comparison Beyond the surface-level observations and fleeting comparisons, the psychological effects of constant comparison in the realm of social media are profound and multifaceted. The incessant exposure to carefully curated and often embellished representations of others' lives fosters a psychological environment where individuals may experience heightened levels of discontent and dissatisfaction with their own circumstances. The curated nature of social media content can contribute to a distorted perception of reality, leading to a pervasive sense of inadequacy and unwarranted self-criticism. Moreover, the psychological effects extend beyond the individual's self-perception. Constant comparison can engender feelings of competition and rivalry among peers, potentially straining interpersonal relationships. This phenomenon is particularly noteworthy among adolescent girls navigating the complexities of identity and self-worth during a critical developmental period. The cumulative impact of constant comparison can contribute to increased stress, anxiety, and a diminished sense of overall well-being. Addressing these psychological effects involves not only promoting individual resilience but also fostering a collective cultural shift toward a more empathetic and supportive online environment. Recognizing the psychological toll of constant comparison is a crucial step toward developing interventions and strategies that mitigate the adverse effects of social media on the mental health and self-esteem of adolescent girls. It underscores the importance of cultivating a digital culture that prioritizes authenticity, self-compassion, and positive interpersonal connections. --- Cross-Cultural Perspectives: U.S. vs. South Korea --- Cultural Nuances in Beauty Standards --- Cultural Variations in Defining Beauty Examining beauty standards within the context of different cultures, particularly between the United States and South Korea, reveals nuanced variations that significantly influence perceptions of beauty. In the United States, beauty standards often emphasize individuality, diversity, and a broad spectrum of aesthetic preferences. The cultural landscape promotes the idea that beauty comes in various shapes, sizes, and colors, reflecting the nation's diverse population. This emphasis on diversity contributes to a more inclusive understanding of beauty, challenging traditional norms. Conversely, South Korea's beauty standards are often influenced by a more homogenous cultural context. There is a historical preference for specific features, such as fair skin, large eyes, and a petite facial structure. These preferences are deeply rooted in cultural traditions and historical beauty ideals, contributing to a more uniform perception of beauty within the society. Understanding these cultural variations in defining beauty is crucial for comprehending the impact of social media on body image and self-esteem among adolescent girls in these respective regions. It highlights the complexity of the relationship between cultural norms, societal expectations, and the role of social media in shaping perceptions of beauty and self-worth. The exploration of these nuances contributes to a more comprehensive understanding of the cross-cultural dynamics at play in the realm of social media influence. --- Influence of Societal Expectations on Body Image Delving deeper into the cross-cultural examination of beauty standards, it becomes evident that societal expectations play a pivotal role in shaping body image perceptions, particularly in the context of the United States and South Korea. In the United States, the societal emphasis on individualism and acceptance of diverse body types contributes to a more lenient and inclusive approach toward body image. While societal expectations exist, there is a growing movement that challenges rigid beauty norms, promoting body positivity and self-acceptance. Social media platforms amplify these diverse narratives, fostering a culture that embraces various body shapes and sizes. On the contrary, South Korea's societal expectations are often influenced by historical norms and a more collective mindset. The preference for a particular body type, often characterized by a slim physique and specific facial features, can exert significant pressure on individuals to conform to these standards. Social expectations in South Korea may place a higher value on adhering to traditional beauty ideals, potentially impacting the body image perceptions of adolescent girls. Recognizing the influence of societal expectations on body image is crucial for understanding how social media interacts with cultural norms to shape perceptions. It underscores the need for nuanced interventions and cultural sensitivity in addressing the potential impact of social media on body image and self-esteem among adolescent girls in different cultural contexts. --- Unveiling the Realities: Insights from Adolescent Girls --- Narratives and Experiences --- Personal Stories Shaping the Impact of Social Media The lived experiences and personal narratives of adolescent girls provide profound insights into the intricate relationship between social media and individual well-being. Through a qualitative exploration of personal stories, a more nuanced understanding of the impact of social media on body image and self-esteem emerges. Individual narratives often reveal the dynamic interplay between social media engagement and the cultivation of self-perception. Stories shared by adolescent girls underscore the role of social media as a platform for self-expression, connection, and identity formation. These narratives also illuminate the challenges and pressures associated with conforming to societal beauty norms perpetuated through digital spaces. Personal stories become a powerful lens through which to examine the diverse ways in which social media shapes the perceptions and experiences of adolescent girls. Some narratives may highlight the positive aspects, such as fostering a sense of community and empowerment, while others may underscore the negative consequences, including the amplification of beauty standards and the potential for heightened self-consciousness. Exploring these personal stories not only humanizes the impact of social media but also provides valuable insights for developing targeted interventions and support mechanisms. By listening to the voices of adolescent girls, we can gain a deeper understanding of their unique challenges and aspirations, informing strategies that promote a healthier and more positive digital environment. --- Unveiling the Emotional Toll on Self-Perception Delving into the narratives and experiences of adolescent girls sheds light on the emotional toll inflicted by social media on self-perception. These personal stories reveal a spectrum of emotions that underscore the complexity of the relationship between social media use and mental well-being. Some narratives expose the emotional struggles tied to incessant exposure to curated beauty ideals. Adolescent girls recount feelings of inadequacy, heightened self-consciousness, and the emotional burden of striving to meet unrealistic standards perpetuated through social media. The pressure to conform to these ideals can lead to a profound emotional toll, impacting self-esteem and contributing to a sense of perpetual dissatisfaction. Moreover, personal stories unveil the emotional intricacies of social comparison. Adolescents often share experiences of comparing themselves to others on social media, leading to feelings of jealousy, inadequacy, and anxiety. The emotional toll of these comparisons goes beyond momentary discontent, influencing overall self-worth and contributing to a challenging emotional landscape. Understanding the emotional toll on self-perception is paramount for devising strategies that foster a positive and supportive digital environment. These narratives emphasize the need for interventions that address the emotional challenges posed by social media, promoting resilience, self-compassion, and a healthier relationship with one's own image in the digital realm. --- Implications for Mental Well-Being --- Addressing Mental Health Concerns --- Recognizing the Mental Health Implications of Social Media As we navigate the intersection of social media and mental well-being, it becomes imperative to recognize and address the profound implications that digital platforms have on the mental health of adolescent girls. Acknowledging the mental health implications involves a comprehensive understanding of the multifaceted ways in which social media contributes to emotional well-being. The curated nature of content, perpetuation of beauty standards, and the prevalence of social comparison on these platforms can significantly impact mental health outcomes. Recognizing the potential negative effects is the first step toward fostering a supportive environment. This recognition extends beyond individual experiences to encompass societal and cultural influences. The collective impact of social media on mental health requires a nuanced and empathetic approach that considers the broader context in which adolescent girls navigate these digital spaces. By recognizing the mental health implications, stakeholders can actively contribute to the development and implementation of interventions aimed at promoting positive mental well-being. This may include educational programs, mental health resources, and digital literacy initiatives that empower adolescent girls to navigate social media in a way that prioritizes their mental health and fosters a more positive online culture. --- Strategies for Fostering Positive Mental Well-Being Addressing the mental health implications of social media necessitates a proactive approach to empower adolescent girls in navigating these digital landscapes. By fostering positive mental well-being, we can mitigate the potential negative impacts of social media. The following strategies serve as pathways towards a healthier digital environment: Promoting Digital Literacy: Equipping adolescent girls with critical digital literacy skills enables them to discern between curated online content and reality. This involves developing a keen understanding of how images and narratives on social media can be constructed and manipulated. Encouraging Healthy Digital Habits: Setting limits on screen time and advocating for mindful engagement helps mitigate the overwhelming nature of constant exposure to social media. Encouraging breaks and offline activities contributes to a more balanced and less digitally saturated lifestyle. Cultivating Self-Compassion: Fostering a culture that emphasizes self-acceptance and self-compassion is crucial. Empowering individuals to appreciate and celebrate their unique qualities, achievements, and inherent worth contributes to a positive self-image. Facilitating Open Conversations: Creating safe spaces for open dialogue about the impact of social media on mental health is essential. Normalizing discussions around self-esteem, body image, and the emotional challenges associated with digital interactions helps individuals feel heard and supported. Collaborating with Mental Health Professionals: Integrating mental health education within school curricula and providing accessible resources from mental health professionals ensures that individuals have the necessary support and tools to navigate potential challenges. Promoting Positive Role Models: Showcasing diverse and authentic role models within the digital space contributes to a more inclusive representation of beauty and success. Highlighting stories of resilience and self-acceptance reinforces positive narratives. By collectively implementing these strategies, we can create an environment where adolescent girls can engage with social media more positively, fostering mental well-being and resilience in the face of digital challenges. --- Beyond Borders: Toward Media Literacy and Positive Influences --- Promoting Media Literacy Empowering adolescent girls through media literacy is a transformative strategy that equips them with the critical skills needed to navigate the digital landscape. By unraveling the mechanisms behind digital content creation and fostering a discerning approach to online personas, media literacy empowers girls to challenge societal norms and cultivate resilience against potential negative influences. This universal toolkit transcends geographical borders, shaping a digital realm that promotes positive influences and enables thoughtful engagement with social media. --- Empowering Adolescent Girls Through Media Literacy In our journey to understand and navigate the profound impact of social media, a key avenue emerges-promoting media literacy as a transformative tool, especially for empowering adolescent girls. This strategic initiative seeks to provide individuals with the knowledge and skills necessary to engage with digital spaces critically. Empowering Adolescent Girls through Media Literacy: Media literacy stands as a catalyst for empowerment by furnishing individuals, particularly adolescent girls, with the capacity to critically analyze and interpret the messages propagated through social media. This entails unraveling the mechanisms of digital content creation, discerning the influence of filters and editing tools, and understanding the motivations behind curated online personas. Through media literacy education, adolescent girls acquire the ability to deconstruct prevailing beauty standards, challenge societal norms projected online, and cultivate a discerning approach to consuming digital content. This empowerment not only enhances their navigation of the digital realm but also fosters a sense of autonomy and resilience against potential negative influences. The promotion of media literacy knows no geographical boundaries, offering a universal toolkit for individuals to navigate the intricacies of the digital age. By nurturing a generation of critical thinkers, media literacy becomes a potent force in shaping a digital landscape that promotes positive influences, enabling adolescent girls to engage with social media in a thoughtful and informed manner. --- Encouraging a Shift in Societal Perceptions of Beauty In tandem with promoting media literacy, another integral strategy involves encouraging a fundamental shift in societal perceptions of beauty. This proactive approach aims to reshape cultural norms and foster a more inclusive and diverse understanding of beauty, particularly in the context of adolescent girls and social media. Encouraging a shift in societal perceptions involves challenging conventional beauty standards that may be perpetuated through digital platforms. By advocating for a more inclusive representation of beauty that embraces diversity in body shapes, skin tones, and facial features, we can contribute to a cultural transformation. This shift extends beyond individual empowerment; it aims to create a collective mindset that appreciates and celebrates the uniqueness of every individual. By promoting positive role models and narratives that defy narrow beauty ideals, we pave the way for a cultural environment where adolescent girls feel valued and accepted regardless of how well they conform to traditional standards. Encouraging a shift in societal perceptions of beauty, combined with media literacy, forms a holistic approach toward creating a digital landscape that uplifts and empowers adolescent girls, fostering positive self-image and well-being. --- Bridging the Gap: Potential Solutions and Future Considerations --- Developing Holistic Interventions --- Integrating Holistic Approaches for Mental Health Support As we envision a future that mitigates the impact of social media on the mental well-being of adolescent girls, a pivotal strategy involves the development of holistic interventions. This multifaceted approach acknowledges the interconnected nature of mental health, social media influences, and cultural perceptions of beauty. Integrating Holistic Approaches for Mental Health Support: Holistic interventions encompass a range of strategies that go beyond addressing the symptoms to target the underlying factors contributing to mental health challenges. This involves not only promoting media literacy and encouraging a shift in societal perceptions of beauty but also integrating mental health support mechanisms. By combining educational initiatives, digital literacy programs, and accessible mental health resources, these interventions aim to create a supportive ecosystem that nurtures the overall well-being of adolescent girls. This integrated approach recognizes the intricate interplay between social media, individual perceptions, and mental health, offering a comprehensive solution for the challenges posed by the digital age. Future considerations should involve ongoing research to refine and adapt these interventions based on emerging trends and technologies. Additionally, collaboration between educational institutions, mental health professionals, and digital platforms is essential to create a synergy that promotes positive mental health outcomes for adolescent girls in the ever-evolving digital landscape. --- Collaborative Efforts for a Healthier Social Media Culture In tandem with holistic interventions, fostering a healthier social media culture necessitates collaborative efforts that bring together various stakeholders. This approach acknowledges the collective responsibility of individuals, communities, educational institutions, and digital platforms in shaping a positive online environment for adolescent girls. Collaborative Efforts for a Healthier Social Media Culture: Building a healthier social media culture involves collaborative initiatives that promote awareness, responsibility, and positive engagement. Educational institutions play a crucial role by integrating media literacy into curricula, empowering students to navigate digital spaces critically. Digital platforms, as key players in the online ecosystem, bear a responsibility to create features that prioritize user well-being. Collaborations between platforms and mental health professionals can lead to the development of tools that promote positive online experiences and provide support for users dealing with mental health challenges. Community involvement is equally essential. By fostering open conversations about the impact of social media on mental health, communities can collectively challenge harmful norms and support each other in navigating the digital landscape. This collaborative approach recognizes that creating a healthier social media culture is not a singular endeavor but a shared responsibility. It encourages ongoing dialogue, adaptation to emerging challenges, and a commitment to fostering an online environment that uplifts, inspires, and supports the well-being of adolescent girls. --- Conclusion The impact of social media on the body image and self-esteem of adolescent girls is a multifaceted and evolving challenge with significant implications for mental well-being. The emergence of social media culture among this demographic has led to a surge in usage, accompanied by the omnipresence of beauty standards that shape perceptions and contribute to the cultivation of unrealistic ideals. The pervasive influence of beauty standards, perpetuation of unattainable ideals, and the role of social comparison underscore the complex relationship between social media and self-perception. Shaping perceptions, particularly concerning body image, has far-reaching consequences on the emotional well-being of adolescent girls. The cross-cultural perspectives between the United States and South Korea further highlight the nuanced nature of beauty standards and societal expectations. Understanding these cultural nuances is crucial for tailoring interventions that consider the specific dynamics at play within different cultural contexts. Exploring the narratives and experiences of adolescent girls reveals the emotional toll of constant comparison and the intricate ways social media influences self-perception. Personal stories serve as powerful insights into the challenges faced by this demographic in the digital age. To address the mental well-being implications, strategies for fostering positive mental health, such as media literacy and the promotion of positive role models, are essential. These strategies empower adolescent girls to engage with social media thoughtfully and promote a healthier digital environment. Looking forward, the development of holistic interventions that integrate mental health support and collaborative efforts for a healthier social media culture is crucial. By acknowledging the interconnected nature of mental health, social media influences, and cultural perceptions, we can bridge the gap and pave the way for a future where adolescent girls navigate the digital landscape with resilience, empowerment, and a positive sense of self.

This comprehensive review explores the intricate relationship between social media, body image, and self-esteem among adolescent girls, with a comparative analysis between the United States and South Korea. The study delves into the emergence of social media culture, the pervasiveness of beauty standards, and the impact on shaping perceptions of body image. Through cross-cultural perspectives, it examines how societal expectations influence these perceptions. Narratives and experiences of adolescent girls provide valuable insights into the emotional toll of constant comparison on self-perception. The review identifies strategies for fostering positive mental well-being, including media literacy and promoting positive role models. Additionally, it proposes holistic interventions and collaborative efforts for a healthier social media culture. This review contributes to a nuanced understanding of the challenges posed by social media, offering insights for future considerations and interventions to support the well-being of adolescent girls in the digital age.

Background Schizophrenia is a chronic mental illness that affects the person psychosocial and economic well-being with significant burdens on their families [1]. Schizophrenia is characterised by difficulties in social contact in everyday life and limits the individual's ability to participate in the activities of daily life [2]. Persons living with schizophrenia have reported challenges including stigma and difficulty with community integration that affect their physical and psychological wellbeing. Schizophrenia affects over 21 million people worldwide [3]. Understanding schizophrenia has significant implications for health service planning and delivery [4]. Mental illness, mainly schizophrenia, presents a severe health care problem in many African countries; however, limited information exists that explores how the condition impacts on the individual's life due to a lack of data and poor infrastructure [5]. Schizophrenia is reported as the most diagnosed mental health condition in Ghana [6]. It is claimed that one of the outstanding manifestations of schizophrenia is a disorder of volition [7], where the individuals find it very challenging to maintain their daily living activities. This contributes to why people with schizophrenia are often seen in tattered clothes with unkempt hair in our communities. Personal care reflects the individuals' activities of daily living [8]. This may include personal tasks to the individual, such as eliminating, communication, maintaining a safe environment, and mobilising. However, most people with schizophrenia may require support to perform daily living activities [9]. In addition, self-care theory portrays individuals as autonomous and suggests that self-care is enacted to regulate the functioning and maintain the health and well-being of people [10][11][12][13]. The ability of a person to perform self-care is affected by essential conditioning factors that include the health state of the individual, development state, sociocultural orientation, health care system, family system, patterns of living, environment, and resources [11]. Personal care becomes a challenge to individuals if the condition is not well controlled, and many of them are cared for by their family members and significant others [12]. Furthermore, studies suggest that people with schizophrenia can engage in daily activities such as washing clothes and utensils, sweeping their compounds, taking their baths, general maintenance of personal hygiene, and cooking for themselves and their families [13]. Other studies argue that people with schizophrenia are also capable of engaging in meaningful jobs and contributing to society [14][15][16][17]. However, in sub-Sahara Africa including Ghana, people with schizophrenia face enormous stigma, and as a result, they receive limited support leading to poor physical and psychological wellbeing [18,19]. There is a widening gap in the caregiving literature in Ghana. It is argued that the service user is the primary source of any information regarding their lived experiences and the best person to define recovery [20][21][22][23][24] however, no published study investigated the experiences of people with schizophrenia regarding personal care and stigma in Ghana. It is argued that one of the most common variables impacting psychological well-being among people with schizophrenia is stigma [25,26]. Stigma has widely been reported among people living with schizophrenia [26]. This phenomenon seriously limits and reduces the person to a lower social rank [26]. People with schizophrenia are often seen as different from others and are therefore labelled with negative references, which draws them away from the public and limits community integration [27,28]. One's ability to cope with negative evaluations and labelling whilst living with schizophrenia is a crucial indicator of the quality of care. Stigma is known to present at several levels: public stigma; self-stigma; stigma by association; structural stigma as the legitimatization and perpetuation of a stigmatized status by society's institutions and ideological systems [29]. Following the work of Goffman, stigma has been categorised into three dimensions: i) stereotypes are beliefs about a person according to his/her group membership ii) prejudices are attitudes and affective components felt against a person according to his/her group membership and iii) discrimination is behavioural reactions against a person according to his/ her group membership [30]. There is considerable evidence showing that people with schizophrenia have been deprived of context-specific needs and lack a comprehensive assessment of their coping strategies adopted in coping with the condition and the related stigma [31]. Therefore, it is imperative to know the subjective experiences of sufferers who have lived with the condition. This is because, studies that have focused primarily on the stories of people living with schizophrenia on coping with personal care and stigma are lacking in Ghana. Furthermore, there is no clear policy guidelines for the management of people with schizophrenia in Ghana, and people with schizophrenia are often seen wonder about in the neighborhood with no shelter. Therefore, it is unclear what the experiences of people with schizophrenia are in Ghana to inform policies. Therefore, this study seeks to contribute to knowledge by addressing three specific issues comprising the context-specific experiences of personal care, stigma and the coping strategies among individuals living with schizophrenia in southern Ghana. --- Methods --- Study design and population This exploratory-qualitative study adopted the Husserlian descriptive phenomenological design for the study due to the sensitive nature of the subject matter and the need to break new grounds regarding the phenomena. In addition, descriptive phenomenology is mainly employed in qualitative research when little is known about a phenomenon. It focuses on the lived experiences of people with schizophrenia regarding personal care and stigma. The target population for the study included all persons residing within the Cape Coast Metropolis with schizophrenia who had once been diagnosed and managed at the mainstream psychiatric hospital. The Cape Coast is one of the two regions in Ghana with a public psychiatric hospital known as the Ankaful Psychiatric Hospital. It is the only psychiatric hospital in central Ghana that provides mental health services to persons living with severe mental illness on an outpatient and inpatient basis. The purposive sampling technique was used to access nine individuals with schizophrenia when it was observed that no significant new information was being gathered from participants regarding the phenomena [32]. Participants for the study included people diagnosed with schizophrenia who were within lucidity . Data were collected using a semi-structured interview guide. Study participants were interviewed face to face at designated areas predetermined by the researcher and participants. All participants were contacted through telephone calls to explain the study in detail to them. Each participant who agreed to be part of the study was given a participant's information and consent form to read and sign prior to the study. This form clearly spelt out the rules of engagement for the study, including the benefits which the study is anticipated to bring to persons living with schizophrenia. Those who had literacy challenge and therefore could not read and sign had the content read to them by the researchers after which they signed or thumb printed. Participants duly read and signed the consent forms willingly. To maintain confidentiality and anonymity, each participant chose a pseudonym during the interview and was used throughout the study. In essence, the names of participants in the manuscript are not the real names of persons who took part of the study. The date, time and place for the interviews were negotiated with the participants. A period of one month was used for the data collection exercise observing all appropriate Covid-19 preventive protocols, such as social distancing, wearing of nose masks, handwashing and hand sanitising. The study was granted ethical clearance by the Institutional Review Board of the University of Cape Coast after demonstrating how conditions of informed consent, anonymity, privacy and confidentiality will be maintained. Guidelines governing ethical considerations in research and protection of the identities of persons spelt out by the Institutional Review Board of the University of Cape Coast were duly adhered to at each stage of the study. --- Inclusion criteria Participants who met the following criteria were included in the study: • Persons lives Cape Coast Metropolis for at least one year and with a diagnosis of schizophrenia. • The person speaks English fluent or any Akan language. • Adults aged at least 18 years • The person can give informed consent. --- Exclusion criteria Participants who met the following criteria were not included in the study: • All persons in the Cape Coast Metropolis living with schizophrenia who were experiencing active psychotic signs and symptoms of the condition and unable to consent • Persons less than 18 years were excluded • Inability to speak the English language or a Ghanaian language --- Data analysis All interviews were transcribed verbatim. The researcher familiarised himself by submerging in the data and carefully reading each transcript thoroughly several times to understand. Significant statements directly relevant to the phenomenon under investigation were identified. Furthermore, meanings pertinent to the phenomenon were then identified. Formulated meanings were then clustered into standard pieces across all participants' accounts that were significant to the phenomenon under study. A complete and inclusive definition of the phenomenon was written, incorporating all the themes produced under step four. The researcher then condensed the detailed description down to a short, dense statement that captured just those aspects deemed essential to the design of the phenomenon. Finally, verification of the fundamental structure was done. This is where the entire structure statement was returned to all study participants to ask whether it captured their experience. This was done via telephone calls and was duly recorded with the consent of the participants. Earlier steps in the analysis were modified in light of this feedback. Issues other than the phenomenon of concern were not factored into the report because the focus was on the experiences of living with schizophrenia. Figure 1 below demonstrates the step by step approach employed in the analysis of data. --- Results Key findings of the study have been presented in this section and discussed with existing literature. Table 1 under this section shows the demographic data on study participants. It can be noted from the table that, out of nine participants, seven were single while two were married. On the age range of participants, the data revealed that one of the participants was in the age range of 20 -30 years. This was followed by three who were in the age range of 31-40 years. Also, the remaining five of the participants were in the age range of 41 years and above. Concerning the gender of the participants, six were females whilst three were males. As part of the demographic characteristics of the respondents, the religious affiliation of the respondents was considered. Again, eight of the participants were Christians except one who declared that he was a Muslim. For the educational background of the respondents, two completed junior high school, four senior high school and three had tertiary education. The study also took into consideration the number of years respondents had lived with the diagnosis of schizophrenia. Five of the respondents had experienced the condition for 21 years and above. Two respondents had lived with schizophrenia for 11 to 20 years whilst the remaining two were diagnosed with schizophrenia within a period of 1 to10 years ago. --- Summary of key qualitative findings Analysis of the interviews data generated two main themes which describe participants experiences regarding schizophrenia. These themes include; personal care; Stigma and coping strategies which include mental fortitude, Spirituality and adherence to medication. --- Personal care: activities of daily living Study participants expressed their views on sticking to daily living activities to live with the condition. Participants disclosed that having lived with schizophrenia for several years, they have accepted that the condition is part of them and something to live with. They indicated that they could take care of their daily activities such as meeting their personal hygiene needs, nutritional demands, and sleep despite their condition. The account shows that participants could go about their normal activities of daily living without any concerns. --- "……I have been living with this condition for several years without any interference in the discharge of my daily activities both at home and when I go to school to teach. I do my things as expected of every human being. I maintain my home very well before going to school. I teach the children, as usual, interact with colleague staff in the school, and carry out my responsibilities as the head of my family. I enjoy my sleep and always take care of myself very well. It is only when the condition comes that I see some changes. . Another participant also added that: --- …... "daily activities have never been my problem. When you came you saw me washing; I just finished cooking for my parents. They are inside eating. I will take my lunch after washing. I enjoy doing house chores. They keep me active and strong" . Fig. 1 Step by step approach to data analysis --- Stigma Respondents reported that stigma is one significant negative experience they have had to cope with ever since they were diagnosed with this condition. They indicated that they have been at the receiving end of name-calling, labelling and neglect at the hands of people. Study participants believed that people in their community are the ones who stigmatise them. It was clear from participants' accounts that all these negative experiences did not come from family members. They indicated that the family members did not mistreat them at all. However, people who lived outside their homes were the ones who negatively evaluated them most often. Participants pointed out that stigmatisation is associated with schizophrenia just like any other chronic mental illness, which sufferers cannot avoid once they live with the disease. One of the powerful stories on this subject matter can be found below: "…….. this is my major challenge associated with this condition…over the years, I have come to recognise that people don't understand my condi-tion…… they point fingers at me, call me all sorts of names and say negative things about me. One day, I stopped a car on my way to church, and just when I was about to board the car, one woman around the place quickly ran to inform the driver and the people in the car that I was a mad person, so the driver should not pick me. I had to walk to church that day. This sometimes makes me angry, anxious, and sad. " . --- Coping strategies --- Mental fortitude The data revealed that respondents adopt bold measures in coping with schizophrenia despite the challenges associated with the condition. These measures enable them to maintain some level of resilience. Study participants verbalised that the strategy they adopt most often to cope with their illness is deliberately trying to take their minds off it. In other words, participants could prevent possible schizophrenic relapse by avoiding excessive thinking or worrying about their situation and its associated impact on their living conditions. A participant, for example, believes that accepting his condition and refusing to worry about it is a way to cope. "The negative things associated with this illness do not worry me. I have come to accept that schizophrenia has become part of me, so I don't bother myself with negative things. The more I think about it; the more my condition gets worse…. " . --- Adherence As part of the maintenance of personal care, respondents affirmed that they adopted some medical measures to help them stay healthy. These participants asserted that one of the major coping strategies had been medication adherence. Participants adhered to the treatment plan at the mental health facilities as part of their care. They explained that failure to comply with the treatment plan results in schizophrenic relapse. --- "… The medication has helped me a lot; it is my food. I do not skip my medication because it has saved my life. Despite the bad side effects associated with the medication at times, I still think it is what keeps me from experiencing a relapse. " . --- Spiritual well-being Participants expressed that their belief in God who keep them going. This, according to them, sticking strictly to spiritual principles helps them gain some sense of hope and encouragement and thus prevents them from experiencing a relapse. In other words, their religious faith has been a source of hope in keeping them healthy. They indicated that their faith in God and spiritual activities in --- Discussion This study explored the experiences of persons living with schizophrenia in Cape Coast, Ghana. It has brought to the fore, personal care experiences, stigma and coping strategies adopted by persons living with schizophrenia. Before the study, there was no empirical literature regarding the subjective experiences of persons with schizophrenia in Cape Coast . This study went further to explore personal and subjective issues of concern in the lives of individuals with schizophrenia. It explored critical issues centred on how they have taken care of themselves and coped with schizophrenia-related stigma despite living with this illness. There is empirical evidence on the coping strategies adopted by care givers of individuals with schizophrenia [33]. However, literature on the coping strategies of individuals who have lived with schizophrenia over a period of time in Ghana is hard to find. Participants in this current study pointed out some personal care experiences whilst living with the condition. Regarding the maintenance of activities of daily living, the findings showed that participants could do things in their rightful sense just like any ordinary person in society. It also suggests that they can do things independently without necessarily depending on others in discharging duties such as bathing, eating, washing and other household chores. It is not surprising that a previous study supports this assertion. Similar research was conducted in Sweden [34] to describe the engagements in daily activities of people with schizophrenia and revealed that being diagnosed with schizophrenia does not necessarily lead to an impoverished lifestyle. Instead, individuals with schizophrenia could have a normal lifestyle and perform activities such as washing, bathing etc. and even observe personal hygiene. Contrary to an assertion that persons with schizophrenia have certain deficits in their lives that render them unable to carry out activities of daily living at will [35,36], participants in this study proved that, despite living with schizophrenia, the condition did not interfere with their daily living activities in any way. Persons with schizophrenia have been at the receiving end of name-calling, insults, and discrimination over the years. There have been some negative comments, assessments, and discrimination attributed to persons living with the diagnosis of schizophrenia by people who come into contact with them. Stigmatisation has been noticed to have characterised the lives of persons with schizophrenia [37][38][39][40]. These individuals are highly discriminated against, especially in communities where they live, partly because society perceives them as mentally ill and a threat to the community. Thus, the community does not see the essence of associating with the "mad" people in the community. Another reason people stigmatise these individuals may be due to the symptoms people with schizophrenia exhibit, especially in the relapse stage. Such manifestations scare people, especially those in the catchment area where study participants reside [41]. Hence, most people in the community may consider them highly violent and can even kill people who may get closer to them. Society may permanently stigmatise them [41]. Stigma affects the well-being of people with schizophrenia because it leads to isolation and rejection of these victims. Schizophrenia is the most stigmatised of all mental conditions because of its perceived dangerous and unpredictable nature [40][41][42]. As a result of stigma, these persons become angry, anxious, scared of the unknown, and sad. People's perception of schizophrenia and how they label people with the condition make it very challenging for individuals living with the condition to cope with it, especially when they step out of their homes [42]. They, therefore, respond to these unfortunate situations by using defence mechanisms such as avoidance, denial, and resorting to wishful thinking consistent with previous findings [41]. Contrary to what was found in Croatia on schizophrenia and stigma, which indicated that, mental health nurses and nurses working in other general hospitals do stigmatise persons with schizophrenia [42], study participants in this current study verbalized that, mental health nurses, often get closer to them and encourage them to avoid taking into how people negatively evaluate them in society. Regarding coping through mental fortitude, study participants with schizophrenia believed that the condition had become part of their daily lives, therefore they do not stress themselves about the negative manifestations associated with the condition. They are able to deal with the challenges associated with the condition by indulging in wishful thinking. This presupposes that, if an individual with schizophrenia does not stress him or herself by thinking excessively about the condition, the possibility of experiencing a relapse is minimal because it is believed that stress as a result of thinking excessively about the condition can lead to frequent relapse. This finding is not different from a similar qualitative study conducted on the coping strategies adopted by individuals with schizophrenia in Great Britain [43]. He also opined that persons with schizophrenia engage in activities that divert their attention from the negative aspects of the condition to stay healthy. Participants verbalized that; they cope with their condition by strict adherence to regular intake of their prescribed medication. Hence, medication was a decisive factor in protecting individuals from experiencing a schizophrenic relapse. With adequate adherence to medicines, participants with schizophrenia could maintain resilience and feel more comfortable going about their normal daily activities. Participants asserted that, those of them who adhered to medications had a quality of life compared to their counterparts who did not follow strictly their treatment plan. It is documented that patients with schizophrenia cope well with their condition through regular adherence to prescribed medications [44][45][46]. This, according to them, makes them strong and prevents them from experiencing any relapse [45]. Steady medication adherence helps persons with schizophrenia improve their care and cope with the condition. Spiritual wellbeing, including participating in religious activities, creates a sense of belonging, enables them to deal with difficult situations, and gives them the strength to move on despite their condition. This may imply that; religion possibly provides positive coping to patients with schizophrenia and subsequently help in recovery. Religious coping was the most common strategy used by people with schizophrenia to cope with daily activities associated with the condition [47][48][49]. This may be because participants indicated that religious coping enhances self-esteem and reduces adverse effects associated with schizophrenia. Increased self-esteem can be shown to contribute to a positive health outcome. Religious faith also serves as a source of strength for persons with schizophrenia and assures them that they can survive complex events in their life. Participants' belief in their maker improves their relationship with family and other people in their communities [49]. Persons diagnosed with schizophrenia cope well through religious activities such as exorcism or sacraments, which they believe could restore their mental and physical well-being to normalcy [47]. The implication is that people with schizophrenia will always depend on religion to manage the condition due to the relief or solace they derive from it. --- Conclusions This study has shed light on how people with schizophrenia live and cope with their personal care and the stigma associated with their conditions in Ghana's resourceconstrained setting. Participants in their lucid state lived an everyday life and could maintain daily living activities successfully. Again, study participants verbalised being labelled and seen as different within the communities in which they reside. It was evident in the study that persons with schizophrenia adopt subjective measures that help them to live with the condition and cope with the associated stigma despite the challenges that the situation presents to them. This calls for the need to intensify education to reduce public stigma regarding schizophrenia. Overall, these findings are not dramatically different from those reported in the literature; however, the support needs of people with schizophrenia may differ from a cultural and spiritual point of view. Africa and, therefore, Ghana is highly religious, and people find solace in religious coping strategies. As patient advocates, nurses also need to appraise their educational programs to address stigma and avoid the increasing trend of societal beliefs regarding persons living with schizophrenia. Positive media representation of people diagnosed with schizophrenia would also go a long way in reducing their opposing expectations of themselves and replacing them with personal strength, hope and aspirations. --- Limitation of the study Qualitative research is often criticised for lacking generalizability and being too reliant on the subjective interpretations of researchers. Therefore, the results of this study cannot be generalised as the true reflection of all persons living with schizophrenia in the country. However, it was not the researcher's aim to make generalisations but to understand and describe the experiences of persons living with the diagnosis of schizophrenia in the Cape Coast Metropolis of Ghana. --- Recommendations Based on the findings of the study, the following recommendations were made: --- Nursing practice Community psychiatric nurses should continue to intensify their home visits to individuals living with schizophrenia in their catchment area to support clients who have challenges with personal care and stigmatisation. --- Education The mental health authority of Ghana should intensify health education on issues relating to schizophrenia to create awareness on issues affecting the lives of Persons Living with Schizophrenia. --- Policy There are no clear policy guidelines in Ghana that primarily focuses on the management of schizophrenia in the country. This study, however, recommends that authorities at Cape Coast metro health directorate should establish a counseling centre within its premises to house accredited religious ministers and professional psychologists to meet the needs of clients with schizophrenia and their families. --- Suggestions for further study Research can be conducted on gender differences in the experience of Persons Living with Schizophrenia to find out if differences exist between males and females living with schizophrenia. • 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 biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? 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Living with a chronic mental condition such as schizophrenia impacts significantly on the individual's social functioning and activities of daily living. However, there is little data on the experiences of people living with schizophrenia, especially in Ghana regarding personal care and stigma. This study explored qualitatively the experiences of people living with schizophrenia in Southern Ghana. Nine people with schizophrenia were purposively recruited for this study. Data were collected using semi-structured interviews and analysed thematically following a descriptive phenomenological data analysis framework. The study revealed that people with schizophrenia are capable of performing some activities of daily living, such as maintenance of personal and environmental hygiene and medication management. However, some participants narrated their experiences of stigma and thus, resorted to certain strategies such as spirituality, medication adherence and mental fortitude to cope with schizophrenia. In conclusion, it was evident that people with schizophrenia, in their lucid intervals, can undertake various activities of daily living, including personal care, however, living with schizophrenia impacts on psychological well-being enormously, and thus, education, counselling, and client adherence to the treatment may improve quality of life.

INTRODUCTION In late January, 2020, the World Health Organization declared the novel coronavirus disease as an international public health emergency . In order to avoid rapid transmission of the disease and provide timely clinical services for confirmed and suspected cases, frontline clinicians played a critical role in early identification of infected patients, which often made them face overwhelming workload, long working hours and great psychological stress. Frontline clinicians were often exposed to an elevated risk of infection, fatigue, anxiety, depression, insomnia, emotional exhaustion, burnout, and even workplace violence . The COVID-19 pandemic increased the likelihood of domestic violence, harassment, and stigmatization against clinicians . A growing number of attacks against clinicians has been reported globally . According to the International Committee of the Red Cross, 611 incidents of violence took place against health facilities, ambulances, and staff between February and July 2020 . Attacks from patients and/or families were common as clinicians need to implement essential COVID-19 prevention and control measures, such as, quarantining confirmed/suspected patients, and banning family visits, both of which disrupt communications between staff and patients/families thereby increasing the risk of conflicts . Yet, little is known about the patterns and consequences of workplace violence against clinicians during the COVID-19 pandemic in China. Workplace violence refers to any act/threat of physical violence, harassment, intimidation, or other threatening disruptive behavior that happens in a workplace . It includes verbal and physical violence from patients, relatives, and even co-workers in clinical settings . In the past decade workplace violence has been gaining growing attention worldwide including in clinical settings. Clinical workplace violence is associated with adverse consequences, such as job dissatisfaction, decreased quality of patient care, medical errors, and mental health problems . Therefore, in order to develop preventive measures to offset the negative outcomes of workplace violence, it is important to understand its patterns and associated factors. The prevalence of workplace violence against clinicians is a significant concern. For instance, 12.1% of US clinicians in emergency departments experienced at least one type of violence in the past year , while the corresponding figures were 44.6% in Hong Kong nurses , and 89.9% among ED clinicians in Beijing, China . A recent meta-analysis found that the lifetime prevalence of workplace violence was 79.8% in ED clinicians in China . To the best of our knowledge, little is known about the patterns of workplace violence in frontline clinicians during the COVID-19 pandemic. The impact of workplace violence on QOL among clinicians during the COVID-19 pandemic remains unclear. This study examined the pattern of workplace violence against frontline clinicians during the COVID-19 pandemic with special reference to clinicians QOL. According to the Distress/Protection model of QOL , QOL is determined by the interaction between protective and distressing factors . This model postulated that an individual's satisfaction with QOL decreases if the distress factors outweigh protective factors, and vice versa . It has been consistently found that clinicians with emotional disturbances report lower QOL than those without . Clinicians exposed to violence are likely to have lower QOL in both physical and mental domains . Exposure to violence exposure increases the risk of emotional disturbances, such as, burnout and depression . It is reasonable to assume that experience of violence and emotional disturbances are potential distress factors that independently affect QOL, and violence might also influence QOL through emotional disturbances. Therefore, the hypotheses of this study were: both workplace violence and emotional disturbances would be significantly associated with lower QOL in frontline clinicians; emotional disturbances would mediate the association between workplace violence and QOL during the COVID-19 pandemic. --- METHODS Study Setting and Sample A cross-sectional online survey was jointly organized by the Psychiatry, Emergency Medicine, Ophthalmology, and Otolaryngology Sections of the Chinese Nursing Association between March 15 and March 20, 2020 in China. To avoid the transmission of COVID-19, an online survey was adopted. All data were collected by the Wenjuanxing program, which is a survey application embedded within Wechat, a frequently used social communication program in China with more than 1 billion users. Snowball convenience sampling was used. To be eligible, participants needed to fulfill the following criteria: aged 18 years and above; frontline clinicians including doctors, nurses, and nursing assistants working in clinical settings of the abovementioned four specialties during the COVID-19 pandemic in China; ability to read and speak Chinese; and willingness to provide written informed consent. The study protocol was approved by the Ethics Committee of Beijing Anding Hospital, China. --- Assessment Instruments Data collection form was utilized to collect basic demographic information. Additionally, participants were asked to answer: whether they have personal experience with the 2003 Severe Acute Respiratory Syndrome outbreak; whether they were directly engaged in clinical services for patients with COVID-19; whether their family, friends, or colleagues were infected with COVID-19; and whether there were 500 or more COVID-19 cases in the province they lived in, and whether they frequently used social communication programs to retrieve COVID-19 relevant news/information. Workplace violence since the COVID-19 outbreak was evaluated by six standardized questions derived from the Chinese version of the Workplace Violence Scale : two items measured participants' experience of verbal workplace violence and threats , while the remaining four items measured experience of physical violence . Each item has four response options regarding frequency ranging from 0 to 3 . Depressive symptoms were measured with the 9-item Patient Health Questionnaire . The PHQ-9 is a commonly used self-report scale with the total score ranging from 0 to 27 . The Chinese version of the PHQ-9 demonstrated good psychometric properties, with internal consistency of 0.89 . The 7-item General Anxiety Disorder Questionnaire was used to assess anxiety symptoms; its total score ranged from 0 to 21 . The GAD-7 has been translated and validated in China, with an Cronbach's alpha of 0.91 . The 7item Insomnia Severity Index was utilized to evaluate insomnia symptoms, with the total score from 0 to 28 . The Chinese version of ISI showed satisfactory psychometric properties . The 26-item World Health Organization Quality of Life Questionnaire was used to measure QOL covering physical health, psychological health, social relationship, and environment health domains . The global QOL was calculated by adding up the sum of the first two items of the WHOQOL-BREF. A higher score indicates higher QOL . The Chinese version WHOQOL-BREF has good psychometric properties . --- Statistical Analysis Data analyses were performed using SPSS, Version 21.0 and AMOS 21.0 . The Kolmogorov-Smirnov test evaluated normality of the data. Comparison of the sociodemographic and clinical variables between the "workplace violence" and "no workplace violence" groups was performed using two independent samples t-tests, Mann-Whitney U-tests, or chi-square tests, as appropriate. To examine the independent sociodemographic correlates of workplace violence, multivariable logistic regression analyses with the "Enter" method was conducted. Workplace violence was the dependent variable, while variables with significant group differences in the univariate analyses were entered as independent variables. Analysis of covariance was used to compare anxiety, depression, insomnia, and QOL separately between the two groups after controlling for covariates . Level of significance was set at P < 0.05 . The direct and indirect associations between workplace violence, and psychological variables , and QOL were further examined with structural equation modeling employing maximum likelihood estimation. Spearman's correlation analyses were conducted to examine bivariate associations among tested variables. PHQ, GAD, ISI, and QOL was entered as continuous variables in the model, and a latent variable of "emotional disturbances" was constructed to reflect the level of participants' anxiety, depressive, and insomnia symptoms . Instead of a complex model, a neat model was constructed because it is easier to interpret for clinicians with limited knowledge in statistics. Three different pathways were tested: the path from workplace violence to QOL; the path form emotional disturbances to QOL, and the path from workplace violence to QOL mediated by emotional disturbances . The χ 2 /df, comparative fit index , normed-fit index , incremental fit index , Tucker-Lewis index , and Root Mean Square Error of Approximation were considered as model fit indices . A higher than 0.90 of CFI, NFI, IFI, and TLI and a lower than 0.08 of RMSEA were indicative of good model fit . --- RESULTS A total of 15,531 participants completed the survey. The demographic and clinical characteristics of the sample are presented in Univariate analyses found that workplace violence was significantly associated with male sex , older age , longer work experience , higher education level , department , experience with the 2003 SARS epidemic , working in tertiary hospitals , working in inpatient departments , looking after infected patients , having infected family/friends/colleagues , more than 500 confirmed cases in the province , frequent use of communication programs , and smoking . Participants having experienced workplace violence also reported more anxiety, depression and insomnia symptoms, and lower QOL score . Multivariable logistic regression analysis revealed that workplace violence was positively associated with male sex , longer work experience , higher education level , working in psychiatric or ED , working in tertiary hospitals , looking after infected patients , having family/friends/colleagues infected with COVID-19 , frequent use of communication programs and smoking . Clinicians working in inpatient departments were less likely to report workplace violence compared to those working in outpatient departments . After controlling for covariates, ANCOVA showed that workplace violence was significantly associated with more severe anxiety, depression, and insomnia symptoms, and lower QOL score . --- Structural Equation Modeling The results of Spearman correlation analyses are shown in Table 3. Workplace violence was positively associated with more severe anxiety , depressive , and insomnia symptoms , and negatively associated with QOL scores . Anxiety, depressive, and insomnia symptoms were also significantly associated with lower QOL . Figure 1 presents the model of the association between workplace violence and QOL mediated by emotional disturbances . SEM analysis found that the model had a decent fit after controlling for age and sex. Frontline clinicians' experience of workplace violence directly affected QOL, and emotional disturbances partly mediated the association between workplace violence and QOL. The standardized total effect of workplace violence on QOL was -0.215 . Emotional disturbances also directly affected QOL. The standardized total effect of emotional disturbances on QOL was -0.566 . --- DISCUSSION In European countries. Another meta-analysis found that the lifetime prevalence of workplace violence was 79.8% in ED clinicians in China . However, caution is warranted as the study samples and timeframes are not directly comparable. The causes of workplace violence against clinicians are complex. Many clinicians volunteered to work in designated hospitals, which increased pressure on already limited health resources. Consequently, patients and families were often dissatisfied with limited access to medical care, crowded treatment environment, long waiting hours, and insufficient communication with clinicians, all of which raised the likelihood of workplace violence against frontline clinicians . In addition, frontline clinicians faced great pressure and overwhelming workload during the COVID-19 pandemic exacerbating their exhaustion and emotional disturbances, and affecting communication with patients and families . Furthermore, the public's fears, worries, and discrimination against those who were likely to increase disease transmission may have also escalated the risks of violence against frontline clinicians . Consistent with previous studies , male frontline clinicians were more likely to experience workplace violence than their female counterparts in this survey. Male clinicians are more likely to experience physical violence, but less likely to be subjected to sexual harassment than female clinicians . Contrary to the findings of the current study, no significant association between education and workplace violence was found in previous studies . Investigations about the association between smoking and workplace violence yielded conflicting results. Nurses who smoked were more likely to experience workplace violence , but this finding was not confirmed . In this study, smoking clinicians were more likely to face workplace violence than their non-smoking colleagues. The reason behind the mixed findings across studies is probably explained by different sociocultural contexts, specialty, sample size, sampling method, and definitions on workplace violence, smoking, and violence. Compared to in other specialties, the prevalence of workplace violence was higher in psychiatry and ED in this study, which is consistent with previous findings . Many mental health and ED clinicians volunteered to work in infectious disease hospitals in crisis response teams, which increased pressure on existing scant health resources in their original hospitals. Low clinician-to-patient ratio, together with many patients' worsening symptoms in psychiatric settings, or life-threatening conditions in ED requiring immediate attention , affected the efficiency and quality of care, and possibly increased patients' and their families' dissatisfaction and irritability, eventually leading to conflicts with clinicians, and subsequent violent acts . In line with previous studies, clinicians with longer work experience were more likely to encounter workplace violence . It is possible that more experienced clinicians are exposed to more difficult and challenging patients and caregivers than junior staff, which increase the likelihood of a violent incident. In this study, frontline clinicians who worked in tertiary hospitals, were more likely to experience workplace violence than those in secondary hospitals and community clinics in China, confirming previous findings . Secondary hospitals or community settings have higher clinician-patient ratio and less severe cases, which reduces the likelihood of workplace violence. Clinicians working in inpatient setting were less likely to suffer workplace violence than those in outpatient setting. It is possible that clinicians in inpatient settings have more time to communicate with patients, and to provide more timely clinical services . Variables relevant to COVID-19, including caring for infected patients, having family, or friends infected with COVID-19, and frequent use of social communication programs to retrieve information on COVID-19, were significantly associated with higher likelihood of workplace violence. Due to the fears and concern of COVID-19 transmission in hospitals, many frontline clinicians were verbally, and even sometimes physically abused by the public as "disease spreaders" in the early stage of the COVID-19 pandemic as they were wrongfully considered as the vectors of contagion in the community . In addition, the overwhelmingly negative or false news on COVID-19 exacerbated the public's fear of contagion and psychological stress . Clinicians with high levels of psychological stress are more prone to medical errors and poorer interpersonal communication with patients and their families, which put them at higher risk for violence. SEM analysis confirmed the study hypothesis that both workplace violence and emotional disturbances would directly affect QOL, while emotional disturbances significantly mediate the association between violence and QOL. Previous studies found workplace violence to be a significant contributor to clinicians' lower QOL , and suggested that the implementation of violence prevention measures and policies would be beneficial to improve their QOL. There is a positive correlation between workplace violence and anxiety, depression, and insomnia symptoms . Individuals exposed to workplace violence are more likely to suffer from impaired psychological adjustment, poor work performance, and social interactions with others , which lead to emotional disturbances and even self-harm and suicide . The strengths of this study are the large sample size and the use of sophisticated statistical analyses. However, several limitations need to be noted. First, snowball sampling and the unequal sex composition of the sample -most participants were females -constituted selection bias. Furthermore, psychiatric clinicians accounted for the majority of the participants. Second, several factors associated with workplace violence, such as, clinicianpatient relationship, and participants' preexisting psychological or psychiatric conditions, were not investigated. Third, due to the cross-sectional design, the causal associations between variables and violence are still unknown. Fourth, only clinicians in four specialties were examined, therefore, the findings cannot be generalized to all frontline clinicians. Fifth, due to the online snowball convenience sampling, the response rate could not be calculated. Finally, workplace violence was measured by selfrated standardized questions. Further studies should rely on more objective measurement. In conclusion, frontline clinicians were vulnerable to experience workplace violence during the early days of the COVID-19 pandemic. Due to the negative impact of workplace violence on the quality of care and frontline clinicians' QOL, health authorities and policymakers should devise effective measures to reduce workplace violence against clinicians. --- DATA AVAILABILITY STATEMENT The Clinical Research Ethics Committee of Beijing Anding Hospital that approved the study prohibits the authors from making the research data set publicly available. Readers and all interested researchers may contact Dr. Feng-Rong An for details. Dr. An could apply to the Clinical Research Ethics Committee of Beijing Anding Hospital for the release of the data. --- ETHICS STATEMENT The studies involving human participants were reviewed and approved by the Ethics Committee of Beijing Anding Hospital. The patients/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.

Background: Workplace violence is a major concern for clinicians worldwide. There has been little data on the epidemiology of workplace violence against frontline clinicians during the COVID-19 pandemic. This study examined the pattern of workplace violence and its association with quality of life (QOL) against frontline clinicians during the outbreak of COVID-19 pandemic in China.A cross-sectional online study was conducted in China between March 15 and March 20, 2020. Frontline clinicians' experience with workplace violence was measured with six standardized questions derived from the Workplace Violence Scale, while anxiety, depressive, and insomnia symptoms, and QOL were measured using the General Anxiety Disorder Questionnaire, the Patient Health Questionnaire, the Insomnia Severity Index, and the World Health Organization Quality of Life Questionnaire, respectively. Univariate analyses, multivariable logistic regression analyses, and structural equation modeling (SEM) were conducted. Results: A total of 15,531 clinicians completed the assessment; 2,878 (18.5, 95% CI = 17.92-19.14%) reported workplace violence during the outbreak of the COVID-19 pandemic (verbal violence: 16.1%; physical violence: 6.9%). According to multivariable models, key correlates of workplace violence were male gender, longer work experience, higher education level, smoking, working in the psychiatry or emergency Yang et al. Workplace Violence During COVID-19 department, working in tertiary hospitals, being involved in direct care of infected patients, having infected family/ friends/ colleagues, and frequently using social communication programs. Clinicians working in inpatient departments were less likely to report workplace violence compared to those working in outpatient departments. SEM analysis revealed that both violence and emotional disturbances (anxiety, depression, and insomnia) directly affected QOL (standardized direct effect = -0.031, and -0.566, respectively, P < 0.05), while emotional disturbances partly mediated the association between work violence and QOL (standardized indirect effect = -0.184, P < 0.05).Frontline clinicians were vulnerable to workplace violence during the COVID-19 pandemic. Due to the negative impact of workplace violence on quality of care and clinicians' QOL, health authorities and policymakers should take effective measures to reduce workplace violence against clinicians.

Introduction High school, as a point of transition to adulthood and thus higher education and work, is critical for students' educational and occupational choices. In the encounter between teacher and school practices and family dispositions, students negotiate who they are at school, what their futures can and should be, and the educational strategies that are and are not feasible for them. International research has explored the tension between the host countries' socioeconomic contexts and the "migrant drive" shaped by the workings of student families' social capital, commonly specified as ethnic capital in the form of expectations, values, and social norms . Migrant parents tend to communicate greater educational aspirations about and to their children than non-migrant parents of similar socioeconomic status. This tendency may be sustained to a different degree depending on the migrant group, the receiving educational system, and the educational stage . However, the pursuit of high social goals by migrant families has been shown to be misrecognized by schools and society and does not necessarily translate into higher educational or occupational outcomes . Norway's legal and cultural norms give significant recognition to children's rights to autonomy, particularly in terms of educational choices . Southern European migrant mothers interviewed by Herrero-Arias et al. experienced parenting in Norway as strongly directed toward developing children's self-sufficiency and autonomy. The mothers both appreciated and found it difficult to keep up with Norwegian society's emphasis on engaging in dialogue with children and encouraging decision making and independent learning from an early age. They experienced this emphasis as more pronounced than in their home countries . Looking at older children in analyzing the results of a survey of 2,029 youths from Oslo, Hegna and Smette concluded that even at the age of 15-16, educational decisions regarding choice of high school tracks were constructed as autonomous. Young people with migrant parents were more likely to agree that their parents had a large impact on their educational choices, but very few, irrespective of background, experienced any conflict or pressure in that process . In a retrospective study by Kindt , 28 university students said they grew up with expectations of high academic achievement that could come from both their migrant parents and their broader ethnic communities. They also experienced parents setting clear external educational goals for them. Kindt attributes these educational strategies of purposefully developing specific instrumental skills through schooling and after-school activities both to high social status parents held in their home countries and to their effort to safeguard children from future discrimination . Norway offers a compelling case for studying the shaping of students' educational futures not only because of cultural norms but also because access to higher education can be obtained without much financial support from the parents. The choice of 15 three-year academic or four-year vocational high school tracks is based on student interests and grades from middle school ; it is possible to switch from the vocational to the academic track in the third year. At the university level, there are no significant student fees, and students living away from home can apply for low-interest loans to cover rent and other living expenses and even partly cover study abroad. Norway thus appears to offer extra room for what students, families, and schools might deem "doable and not doable" for students with a migrant background. In this context of lower financial dependence on family, studying the perspectives of students is especially significant. Interviews with eight students and, in three cases, their parents, combined with observation at the case high school, revealed a complicated negotiation process about educational choices that involved schools, families, and the larger socioeconomic context. That process is explored here to help understand how migrant parents contribute to the negotiation of the students' educational futures in a Norwegian high school context. --- Conceptual background Starting with his own educational system studies with Passeron , Bourdieu's concepts of habitus and field have been highly influential in research that aims to make explicit the mechanisms of social reproduction of disadvantage and the symbolic violence behind school practices. Bourdieu's theoretical and methodological toolbox has also been used to shed light both on parents' strategies related to their children's schooling and on educational choices and identity . In the present study, these tools are applied to see how school practice meets influences from home in negotiating high school students' educational futures. Bourdieu calls attention to how cultural, social, and economic capital are transformed into performance in the social space of education in terms of learning, cultural consumption, behavior, and values. Students with early exposure to specific forms of primary socialization in terms of class, culture, and language possess privileged dispositions . Working in the same theoretical tradition, Lareau empirically demonstrates how middle-class parents developoften unconsciously-desirable skills, values, and aspirations in their children. From childhood to young adulthood, children are encouraged to ask teachers or university professors for help and accommodations, which creates lasting educational advantages over children with other types of cultural and social capital . Middle-class parents communicate with schools in ways that are viewed as legitimate by teachers and involve children in extracurricular activities that generate cultural and social capital in a process Lareau calls concerted cultivation . As middle-class students transition from high school to university, they can take advantage of their parents' detailed knowledge of the university admission process and favorable subject choice strategies once at university . Education is always a secondary form of socialization, which limits its power to develop and validate students' dispositions . According to Bourdieu and Passeron , the inequality of students at school is visible, for instance, in terms of dispositions toward language and conversation acquired at home. In the case of migrants, this difference can become tangible in terms of language and the ability to understand and appreciate abstract teaching or in the ways that parents do and do not involve themselves at school. From a Bourdieusian perspective, school is a place not only for developing dispositions but also of competition for acquiring "field-specific capital according to field-specific rules" . Students acquire some of the rules in the schooling process and can be somewhat successful in playing the game in the high school education field. However, the ease with which students play the schooling game depends on the degree to which their new dispositions are orchestrated with those embodied in at-home socialization . This dependence on a student's past limits both student agency and the influence of the high school education field in terms of acquiring new dispositions. The school and home can compete with or complement each other in terms of inscribing what is and is not worth attending to for different categories of students in terms of acquiring certain forms of capital: People are "pre-occupied" by certain future outcomes inscribed in the present they encounter only to the extent that their habitus sensitizes and mobilizes them to perceive and pursue them . Based on this reasoning, it can be argued that the migration experience and socialization in the country of origin and along the migration path tend to mobilize some families to develop higher aspirations for their children and encourage them to persevere at school. The size of this relative aspirational advantage over non-migrant families once social background is taken into account varies with home country and the receiving country's educational contexts . Norway's comprehensive school system appears to be more likely to sustain and in some cases fulfill the migrant students' ambitions than schools with early tracking . Still, as the generations succeed one another, habitus tends to adapt to the receiving country's school-related expectations. The migrant drive has been shown to wane in follow-up generations as students, to differing degrees that vary with receiving country context, become disposed to act and work "like everyone else," and their advantage in academic effort over their non-migrant peers may disappear . --- The study The data drawn on in this article are part of a qualitative inquiry into encounters between migrant families and schools carried out at three high schools located in different areas and contexts in Norway. The present study focuses on one such school, Park High,1 an urban school that primarily enrolls Norwegian-born children of migrants with medium levels of academic achievement. According to the staff, they also recruit some high-achieving students with migrant backgrounds who feel unwelcome at "majority Norwegian" schools because, for example, they wear a hijab. Park High was selected because the staff shared a particular interest in involving parents, more than is usual in the Norwegian context. The school offers several tracks qualifying for higher education, some of which require a higher grade point average in middle school than other schools in the area. I interviewed and observed students from three different tracks. At the time the case study was conducted, the established Academic General track was the most competitive, while both the Academic Science and Academic Business tracks were new and attracted fewer applicants. Academic General tracks in Norway all offer a general introductory year, after which students gradually specialize in humanities or sciences. I visited the school three times from December 2019 to November 2020. The first visit lasted three days and evenings, and the two subsequent visits lasted one day each. The evenings offered important opportunities for observation, as Park High offers free tutoring and exam preparation after regular school hours, and the teachers called an extraordinary parent meeting on one of those evenings. The school case also included one day of online observation under the COVID-19 lockdown. I also familiarized myself with the school's online communication with parents and other relevant data. The observation, teacher interviews, and other background data, although only occasionally explicitly cited in this article, provided important foundations for situating the Park High case and the students' process of negotiating their educational futures in that social context. I interviewed students , their teachers , and, where students agreed, their parents . As seen from the case overview in Table 1, the students had different backgrounds and chose different academic tracks. Six of eight were born in Norway, and all eight had parents who immigrated to Norway as adults. Three of the eight students had apparent middle-class backgrounds, as their siblings had completed or nearly completed education at the university level and their parents were teachers or scientists, although they were not necessarily employed in those occupations in Norway. One student had several relatives who had completed education at the university level and a mother who received more education than would be expected for a woman in her home country, indicating relatively high social status prior to migration. The informants thus offer accounts of various viewpoints and experiences at Park High, although they are too few in number to be viewed as representatives of their respective groups. The students talked about their previous school experiences, aspirations, and educational plans in interviews that lasted from 30 to 60 minutes. I asked parents about their own school experiences, their hopes for their children's future, their thoughts on Norwegian schooling, and their approaches to supporting their children's education. Material from interviews with Park High school leaders and observation of 19 teacher-student-parent conferences and general parent meetings is used in Melnikova , together with interviews from two other high schools. All interviews with students and parents were conducted in Norwegian, with the exception of one student-parent pair, who both chose to speak a Central and Eastern European language that they shared with me. Speaking a home language may have created additional mutual trust during these interviews, and during the analysis process, I made sure I have not unduly emphasized insights from these informants. I have not experienced any language difficulties when interviewing the other informants at Park High, as all those people were migrants who had studied or worked in Norway for at least four years. In the study, I positioned myself both as a teacher educator and as a migrant mother, albeit not one with a child in high school. Being a parent may have made me more accepting of the migrant parents' concerns and possible interference in their children's education than some of the teachers. The research question for the project and the interview guide structure were informed by a Bourdieu-inspired interest in family and school histories and contexts and the structures that students and families navigate. The NVivo qualitative software was used to facilitate the organization of data from three cases in the project, but each case was analyzed independently . I found common codes that constituted thematic patterns identified in the Park High case, including backup plans, language, fears, and wider horizons. There were also breaches in these patterns of what can be referred to with Bourdieu's term of practical logic of the field. It was important to mark the occasions on which the school's logic and the students' and parents' engagement with it appeared to be incoherent . Only excerpts used in the article text were translated into English from the languages in which the interviews were conducted and transcribed. In transcription, I have made the language more "written," partly to make the text easier to read and partly to help protect informants' identities. Ethically, I was cautious to protect the wellbeing and anonymity of the informants 2 . The well-being concerns were addressed by limiting the time and subject matter of the interviews and not insisting on gaining a complete overview of all the young people's family stories if they were uncomfortable with sharing some of those elements. I have also withheld some information to secure anonymity. I ensured free and informed consent by discussing my project and the informants' rights orally instead of merely having them sign a form. A case study makes it easier for informants to be identified and to identify one another, but the students who participated have now graduated from Park High and are thus unlikely to be recognizable in text as it is formulated now. The project received ethical approval from the Norwegian Centre for Research Data. --- Students negotiating a limited range of possible educational futures --- Backup plans and some lost dreams In this section, I discuss the students' dreams and plans for their future education, including the relative value they placed on humanities subjects and education in science, technology, engineering, and mathematics . Most students I interviewed at Park High had rigorously defined academic plans. They told me that they had discussed them with classmates, teachers, siblings, cousins, and guidance counsellors at both middle and high school. All shared some version of their plans with their parents and were aware of their parents' expectations. All student informants in the first, second, and third years of their studies named specific university programs to which they planned to apply. Like Hana, several informants across tracks talked about backup plans, with four of eight naming teacher education in that regard. They often moderated their aspirations with time, as their grades were too low to qualify for programs they had counted on at the beginning of high school. Hana ended up entering a pharmacy program rather than going into dentistry. Other examples of what students experienced as downgraded educational plans include going from becoming a veterinarian to a teacher and from being a business owner to an accountant. Arina, a junior student, said she had always aspired to become a veterinarian but now had no chance of making it, and she was unsure about teaching because she "was not especially fond of kids." The new and more modest ambitions that Arina considered in her backup plan were not a mere readjustment, as would be the case for some students; rather, they resulted from a dawning realization that in the transition from high school, she would be forced to give up her long-held dream. --- Languages and choice of subjects All the interviewed students said they liked languages, and most had been successful on exams in their heritage languages. Many had visited or even frequented their countries of origin, with several naming religion, psychology, and sociology as subjects they found relevant and accessible. However, none of the informants saw language, humanities, social sciences, or the arts as suitable future trajectories. There were also very few students who invested their time in after-school activities. The teachers said that being part of student parliament or participating in the annual school musical could be excellent ways to expand students' horizons; to their regret, they noticed that this involvement often resulted in declining grades, which the students at Park High could not afford because they already had mid-level grades and lofty ambitions. In addition, the teachers noted that the students' parents could not provide extra financial support for the traditional school trips abroad. Their summer holidays in their parents' home countries did not appear to possess the same cultural value in the teachers' eyes. Aspiring to careers like doctor, lawyer, or engineer are commonly associated with model minority students and were prominent in the student interviews. Unlike in other research , these aspirations were not limited to Asian students, although many students at Park do have Asian backgrounds. Both teachers and students talked about how many parents they meet see medical studies as the perfect choice. Only one mother invited to a teacher-student meeting I observed presented this as a deliberate strategy, mentioning that the student's two older siblings were studying medicine. Teachers at Park High said that they hoped to change the relatively narrow patterns in students' aspirations. However, according to the local newspaper, the school's Media Design and Communication track had recently shut down because students with migrant backgrounds preferred tracks focusing on subjects that could lead to careers in science, technology, engineering, and mathematics . I also observed that the homework assistance available at the school focused mainly on science and exam preparation in mathematics. --- Breach in pattern: Success outside STEM subjects Todor is a first-year student whose family arrived in Norway from Central Europe in the 1990s. He says that even though he was born in Norway, he would never call himself Norwegian because of his pride in his heritage language and culture. He is socially engaged; he works on many projects with his friends after school and organizes events at school. He is also an exception to the general tendency to see mathematics and science as proxies for school success. During my observation of a meeting with Todor's teacher, he resisted the teacher's attempts to involve him in extra mathematics tuition, saying he was satisfied with a 3 in math and would "rather concentrate on my geography grade." However, despite this below-average math performance, his plans in life include being what he sees as "successful" by going to business school, starting a business like a restaurant or-as a worst-case scenariobecoming a teacher to take advantage of his outgoing nature. As I observed, he also agreed with his teacher that he should not be put into a study group with his friends because, like other students and teachers at Park High, he admitted that friends could distract him from studying. Todor mulled over studying abroad in the distant future and perhaps taking some courses in religion as a minor subject. He did not, however, see himself as a student who could turn studying religion into a job that could bring him the success with which he was so preoccupied. Similarly, working as a teacher did not meet the definition of success for Todor or the other students who had that career as a backup. To summarize, dreams were difficult to discuss for most students in my study. They generally had rather specific plans for education after high school; STEM subjects were viewed as the key to success, with medicine regarded by Park High students and their parents as the zenith but also as largely out of reach. The humanities, social sciences, and arts were not considered, while a teaching career was regarded as a backup. The students appeared not to have inherited the extra resources to invest in cultural capital in the forms of extracurricular interests or international trips, and friends were seen as limiting rather than enriching their futures. --- Family history is not directly translated into educational futures --- Little direct pressure This section focuses on how family history translated into students' thinkable and unthinkable futures in the school context before analyzing how some families dealt with the educational choice dilemmas they encountered at school. The students I interviewed generally talked about their parents' ideas about their futures without intimating any feelings of direct pressure or threat. One exception was a student who reported that her parents may have plans to send her to study in her home country, which was not something she wanted. Hana, a third-year student, sensed the pressure to excel academically in the stares and questions from other members of her ethnic community to such an extent that she found it "funny" how "the first thing everyone wants to know is if you have top grades." She was, however, free from this pressure in her family; on the contrary, her mother said that her daughter worked too hard. Todor also did not experience any direct interference in his choices, although he did say that "other parents" could pressure their children to be doctors or lawyers. Boris mentioned that his parents initially had high expectations for him, but they "did nothing" when his grades were not as high as they would have liked: My parents, they had very good grades. My mom had all the top grades in univer- As the excerpt shows, despite being a student from a family with a history of high academic achievement, Boris did not directly experience pressure to work especially hard during high school, although he was aware of his mother's disappointment. Bashra, a junior whose parents come from the Middle East, wanted to become a police detective and eventually study in another city. She described the process of negotiating with her parents: The model career of doctor or engineer thus existed in this mother's world of aspirations but did not translate into pressure or a realistic trajectory for Bashra. Even though she cited becoming a lawyer as a dream job, she also had more specific and pragmatic plans, with a specific police school in mind. I --- Fears It was fears about their futures that Bashra and the other students shared with me, rather than disappointing parents with their grades. Structural racism in the job market was also an issue. For example, Bashra admitted that her greatest fear was having difficulty finding a job because of her name, after applying for over 10 parttime jobs and having no luck. This experience contrasted with the experience of a friend of hers with a "Norwegian" name: she applied "for many of the same jobs, but she gets answers, while I never get any." Another fear that often emerged in my analysis is "doing nothing," This was a fear that the students who reported experiencing success at school said their parents did not have for them, while those who said that their parents had failed to realize upward mobility in Norway often shared the fear of "going nowhere, not getting into a university or a program that I do not like or want; being looked down on" . "Ending up like them" on social aid or without enough money because they did not live a good life was an intense fear that lay behind the careful and fearful calculation of future trajectory, where adult life sometimes appeared as something worse than the still-undefined present. In essence, family history for students at Park High was not directly translatable into specific trajectories or dreams. The parents might have some vague ideas about stereotypical professions, but by the time those students reached high school, their dreams had turned into specific plans for which parents could at times serve as negative models. --- Family indirectly involved in the negotiations --- More subtle involvement with school This section illustrates the subtle ways in which parents were involved in the negotiation of their children's educational futures through carefully formulated advice about present educational strategies and possibilities for future choices. In the interviews, the students did not seem to perceive that parents had any direct say in their choices. Neither were they, as demonstrated by the three-school case study , involved in negotiations happening at school with teachers or guidance counsellors. With a few exceptions, my informants-students, parents, and teachers-shared a common view of the world in which parents were not involved directly at school except in extraordinary cases. This understanding was presented by all students and their migrant parents, irrespective of the economic or cultural capital available to a given family. There are some indications that several families were engaged in concerted cultivation at a younger age. Three students were involved in ethnic or religious weekend schools, and all had at some point tried organized sports. Boris's mothers talked about how she and even his grandmother, a teacher, tried but failed during middle school to convince him to talk to the teachers to get better feedback on assignments. These strategies, as they appeared in the interviews, were no longer seen as appropriate once the students entered high school. In the end, it was clear that all the informants' parents, siblings, and other relatives were involved in the negotiation of educational futures; that involvement, as described below, was simply more subtle. The previous section has shown that students experienced conflict between their long-held dreams and the opportunities that were open to them, between their friends and academic success, and between spending time studying and devoting time to expanding their social and cultural horizons. The mothers and one father I spoke with and those I saw at meetings with teachers were there to support their children deal with these conflicts. --- Parents pointing to the wider horizon The parents were often concerned about their hard-working and stressed-out young people's limited social lives. One mother spoke at length about how she tried to support her son in making friends, suggesting that he take money from her to go to the movies with a girlfriend or involve himself in a sport. Another said that high school was a time to get a boyfriend and maybe begin thinking about having a family. Further, according to student interviews, families also contributed to the academic side of schooling by teaching them their heritage language or by paying for private tutors. The students also reported that their parents made cautious attempts at extending what to them appeared narrowed horizons for their children by suggesting that they study abroad or encouraging them to consider a profession that did not require mathematics. For example, Hana's mother wondered whether her daughter needed to work so hard: Other older siblings were reported to be involved in the informants' choices, university and school applications, and learning processes invisible to the school. In short, when the family's social and cultural capital was not directly recognizable by the school, it was still operating behind the scenes, although in this study it was not possible to compare its effectiveness to the value of family capital that is more readily and traditionally recognized by schools. I don't --- Discussion and conclusion In my study, the parents at Park High were highly engaged in their children's education and were concerned with the educational choices they made. At the same time, they chose to proceed cautiously, and the students I interviewed did not appear to be under intense pressure from their families. This is in line with findings reported by Kindt ), who interviewed successful university students with minority backgrounds: They said that despite societal assumptions, the pressure in their lives did not come directly from their parents. In the last decade, policymakers in Norway have granted parents a more powerful role in their children's education. However, my study, as well as other research in the field indicate that, especially in the case of parents disadvantaged by society and the school system, a distance from school remains. Among other factors establishing distance, the normative Norwegian value of individual autonomous choices appears to be clearly communicated, at least to migrant families. Some families may not fully accept this value and actively engage in their children's education and choices at home, as demonstrated by Kindt . However, the parents in my study were particularly careful about sharing experiences and knowledge that could help guide their children's choices. Thus, the negotiation of student educational futures in my study, when viewed in Bourdieu's terms, may demonstrate how a secondary socialization system leads students to gradually limit their aspirations to something practical and doable, thus adjusting the habitus to the rules of the field . These rules are determined not only by teachers, who sometimes resist their students' rigorously defined market-driven choices, but also by broader social processes in the metafield of power. The global educational market and policy powers affect all other fields; they shape the students' and their families' perceptions of what is realistic and "safe" for them . The students may be driven by what Bourdieu saw as the logic of necessity. He recognized that it is more acceptable for the representatives of the middle and upper classes to choose something that is not practical or appropriate, even something vulgar. The working classes, by contrast, tend to be more conservative in their aspirations and tastes . In terms of contemporary Norwegian society, students viewed by the school as having less economic and cultural capital available from the family would be advised and eventually find it natural or in line with their habitus to avoid risky choices. This means that they adjust their aspirations and choose educational programs that are more likely to secure stable employment. The high aspirations in the dreams that they and their parents once had were waning in the face of specific constraints such as ability in mathematics, stress management skills, and racism in the job market. These findings are similar to the descriptions of migrant choices in other Nordic studies and the constraints that were recently described for middleclass students in Greece . Everyone interviewed, except for two students and one parent, saw mathematics as the key to success-the ultimate cultural capital that opens up the world to the supreme goal of studying medicine. However, access to this form of capital is limited by the results of previous socialization, which Bourdieu and Passeron regard as "irreversible" . Because of this limitation, the vision of equality of educational access in Norway, as in the rest of the world, is showing some cracks, especially at the high school level that is the focus here. In my data, the students needed to direct their educational trajectories to more realistic and less attractive goals. These findings align with Walther's categorization of universalistic transition regimes, which assume guaranteed access to-but not successful completion of-a high school education . My study also indicates that parental contributions to translating students' dreams into specific futures are complicated by the boundaries of what knowledge and expe-riences schools and other social contexts view and communicate as valuable. For example, the majority of students evaluated academic success as more relevant than social success or expanding their knowledge outside school subjects. Experiencing their home cultures or becoming involved in out-of-school activities were seen as distracting. This finding contrasts sharply with how middle-class parents negotiate their children's educational trajectories in Lareau's study of concerted cultivation and a more recent study of academic pressures experienced by children of middle-class parents in Norway . The new horizons of students' future and present lives in the present study often appeared to be narrower than the horizons envisioned by their parents, but only indirectly communicated because of the autonomous choice norm. The students could end up having even fewer options when they were dissuaded from pursuing strategies that include investing in less school-related cultural or social capital. They would thus be voluntarily excluded from the global middle class . It is recognized that migrants are usually positively selected from their home country population: in many cases, because of the difficulties entailed in the journey, it is those with the most resources and firmest sense of purpose who arrive in receiving countries . At Park High, the acculturating forces translated through the school appear, in the case of several interviewed students, powerful enough to eventually cause a decline in the original migrant drive, which eventually gives way to the idea of becoming "like everyone else" . These forces create barriers to school-based parental involvement in student choices and indirectly devalue the cultural capital in the form of knowledge and experience possessed by the migrant parents and their ethnic communities. To some extent, these barriers are justified by the common middle-class pattern in Scandinavian cultures of giving students the visible autonomy of choice while communicating expectations vaguely and indirectly . However, through this justification, for high school students with migrant parents, the school appears to win the competition for communicating what is and is not worth attending to . For example, the students gradually become convinced that math should be prioritized over the humanities and arts, and that specific instrumental goals are more important than broader dreams and interests. To conclude, the school system may be seen from a Bourdieusian perspective as successfully creating an advantage for families that can communicate their expectations to the students in the indirect way that has become acceptable in Norway. For these students, what emerges in my study is a story of dreams that the school's socialization process transforms into realistic choices. These students win in the compe-tition for the capital required to advance in the high school education field through hard work, which is at least partly a response to the pressures that are indirectly exerted on them. Some minor readjustment of plans is aligned with the expectations and capital combination that were translated through family socialization that may have included direct help despite the ideal of an autonomous student. Nevertheless, for many students with migrant parents, the story is one of a rather dramatic adjustment to the new school context. The renegotiated educational trajectory is restrictive when compared to the dreams that they and their families once had. When what can be interpreted as direct pressure is unacceptable, the students are left alone with weighty choices. In this context and in a school system with the explicit goal of promoting social equity, the way family aspirations and knowledge may be devalued in the school context should be critically assessed to arrive at a more complex understanding of the parental role. Without ruling out the interpretation of migrant drive sometimes acting as unwelcome pressure on student autonomy and a result of less than fully realistic assessment of possible student futures, the present study indicates that not all parents are unrealistic and that their carefully communicated views of the global possibilities and challenges their children may face in the world need to be heard. The students' negotiation of their educational futures during high school occurs not solely between school and student but also includes the family, the ethnic community, and the wider social context.

The educational futures students aspire to and make specific choices in shaping are formed in the encounter between school practices and family dispositions. More research is needed to understand whether and how migrant parents are invited to contribute to high school students' negotiation of these possible futures. Drawing on observations and interviews with students and parents from a single-school case study, this article explores how migrant parents contribute to students' decision making. Seen through a Bourdieusian lens, the logic of the high school education field sets boundaries around what is regarded as feasible and valuable parental involvement. Parents are experienced as acting indirectly through hints and suggestions. The study indicates that providing guidance is complicated by expectations of student autonomy. The findings warrant further research on school parental involvement practices that can support students' negotiation of possible futures.

Background Women who inject drugs are at high risk for negative health outcomes such as human immunodeficiency virus , hepatitis C virus , sexually transmitted infections , and overdose [1][2][3]. The combination of stigma, gender-based violence, and relationship power dynamics with intimate partners increases harm for women [4][5][6]. These factors may translate into elevated risk-taking, such as engaging in transactional sex work. Stigma and gender-based violence also create barriers to accessing healthcare, including harm reduction services [7,8]. Experiencing multiple types of violence, specifically sexual violence, has been shown to amplify the risk of overdose in women [9]. Research and interventions specifically targeting women are scarce and are mainly situated in high-income countries [5]. The current study was set in Mexicali, the capital of the state of Baja California, Mexico, adjacent to the US-Mexico border. During the study period, there was one harm reduction service provider in the city: "Integración Social Verter A.C. " . This non-governmental organization operates various harm reduction services, including a needlesyringe program , a naloxone distribution service, and a women-only unsanctioned safe consumption site -the first of its kind in the Global South [10]. The high prevalence of injection drug use in the region is well-documented and is further complicated by issues surrounding deportation, immigration, and violence at the US-Mexico border [11,12]. The introduction of fentanyl to Mexico's northern border, documented first in 2018, has produced an unstable opioid supply which further increases the risk of overdose for people who use drugs [13,14]. The flux in Mexicali's opioid drug market, related to the introduction of fentanyl, was documented in women who accessed Verter's harm reduction services [15]. Overdoses in Mexico are a current but neglected public health emergency concentrated along the US-Mexico border [16]. A few studies have documented overdose risk factors and correlates in Tijuana [17][18][19] and community overdose response in Mexicali [20]; however, the topic remains understudied. In a baseline analysis of El Cuete IV data in Tijuana, the proportion of women that reported a non-fatal overdose in the 6 months prior to enrollment was higher than men [19]. However, during two years of follow-up, there was no difference in reported non-fatal overdoses between genders [18]. No studies have explored the relationship between gender and overdose in this region. This research was informed by the theory of syndemics and the continuum of overdose risk framework [21][22][23]. Syndemic theory argues that marginalized groups, like women who inject drugs, due to intersections of biological, social, and structural conditions, are at disproportionate risk of experiencing negative psychosocial and health outcomes such as gender-based violence, adverse mental health, substance use, HIV, and other infectious and chronic diseases. We employed the theory to inform our initial inquiry regarding the types of factors, or syndemic conditions, that women may experience and that may impede their access to harm reduction services. Given our focus on a group of women who inject drugs at risk of overdose and that described experiencing and witnessing overdoses, we used the COR framework to explore factors that may modify the risk of fatal overdose for this subset in Mexicali. The COR framework, introduced by Park et al., reframes the social determinants of health to highlight key stages of risk along the trajectory of initial drug use toward fatal overdose, as well as proposing six strategies to de-escalate risk of fatal overdose. The five stages of risk in the COR are drug use initiation, active drug use, addiction, non-fatal drug overdose, and fatal drug overdose. The six de-escalation strategies are meaningful partnerships with people who use drugs , prevention, harm reduction, treatment, recovery, and reversal of the criminalization of PWUD [23]. We framed our analysis using these stages. Informed by both frameworks, our objectives were to explore barriers and facilitators of harm reduction access and overdose risk among an underresearched group of women in the Global South. Specifically, we aimed to identify the syndemic conditions they experience, and that intersect with and provide context around the different stages along the COR. --- Methods This was a secondary analysis of a pilot study that aimed to understand the specific needs and vulnerabilities of women who inject drugs in Mexicali in the context of Verter's harm reduction services [15,20]. A previous article using data from this study describes results related to behavioral changes after samples used within the SCS were tested for fentanyl [15]. From December 2020 to February 2021, staff recruited women using a purposeful sampling strategy based on recent injection drug use. Participants were recruited while accessing Verter's harm reduction or sexual health services or during staff mobile outreach activities. The study included a quantitative and a qualitative component; participants could complete either component or both. The design of the instruments was guided by the syndemic theory and aimed to capture the intersection of syndemic conditions. To be eligible for the qualitative component of the study, participants had to: identify as a woman, ≥ 18 years of age, have injected drugs in the past 30 days, and be able to provide informed consent. To be eligible for the quantitative survey, women also had to plan to use safe consumption space to inject drugs, and be willing to provide a wrapper or filter of intended drug to be used within the safe consumption space. Participants were excluded if they were acutely intoxicated, or were experiencing pronounced withdrawal symptoms that would prevent survey completion, or if using the SCS put individuals at risk. For this analysis, we included only those participants who completed both the qualitative and quantitative components of the study. The UCLA Institutional Review Board and the Prevencasa, A.C. IRB approved the study protocol. For the qualitative component, participants were interviewed by a female co-author in a private setting. Since data were collected during the COVID-19 pandemic, interviews were conducted over Zoom and only audio was recorded to help promote participant comfort. Most sessions lasted nearly one hour. The interview guide was informed by our theoretical frameworks and included questions and probes around women's drug use experiences and history, stigma, sexual violence, and experiences using harm reduction services and overdose [20]. Interviews were conducted either in Spanish or English based on participant choice. For the quantitative component, participants completed a computer-assisted survey instrument via REDCap. Survey topics included socio-demographics, injection use patterns, and questions related to women's access to harm reduction services. Stigma was evaluated using questions from the Substance Use Stigma Mechanism Scale. The survey was either in Spanish or English based on participant choice. Women who completed the quantitative component used the SCS and fentanyl test strips to test samples intended for consumption within the SCS. Participants completed the interview or survey within 2 weeks of each other if completing both. All participants were given a safe injection kit , an overdose reversal kit , and compensation of $10 US dollars for each component completed. Verbatim transcription of interviews and subsequent translation were completed by trained staff proficient in English and Spanish . A co-author checked all transcripts and translations for correctness. Transcripts were encrypted and uploaded to a secured server. An initial coding guide was developed informed by the interview guide and theoretical frameworks, and Atlas.ti software was used to code translated transcripts. Qualitative data were examined employing a thematic analysis approach [24,25]. After coding the transcripts guided by the syndemic theory, as per the design of the instruments, themes were generated and arranged to highlight the stages described in the COR framework. Syndemic conditions that may influence or produce certain stages of the COR and their overlaps were highlighted. Quotes that exemplified each COR stage and deescalation strategies were selected and presented. We did not follow a mixed methods, triangulated study design and rather chose to focus on each data source separately-on themes that relate to the study objective and utilizing descriptive statistics as complementary data to the in-depth interviews. Quantitative data were analyzed using R version 3.6.2 and are presented intertwined within each salient theme. --- Results --- Descriptive In total, 35 women completed at least one component of the study. For this study, the 25 participants who completed both the computer-assisted survey and interview were included in the analysis. Descriptive statistics are shown in Table 1. The median age was 35 years . One woman self-identified as transgender. Women born in Mexico accounted for 84% of the participants, as well as three women born in the USA, and one woman born in Honduras. The marital status of 36% of participants was common-law union, and 64% were single or had never been married. Nearly half of the participants had graduated from middle school, and only 16% had graduated from high school. More than half of the participants considered themselves homeless. Regarding sources of income in the past year, 12% of women reported sex work, 24% had help from family and friends, 4% were employed in another kind of illegal activity, 36% completed informal work, 16% reported legal paid work, and 24% responded income from other sources. More than one option could be selected. --- Injection drug use initiation and mental health The women entered the first stage of the COR, drug use initiation, at an early age. The median first age of injection was 17 years with a range of ages between 12 and 36. More than half of the participants reported being under 18 at the time of their first injection. The most common drug that was injected during initial use was heroin , followed by methamphetamine , and both drugs combined . For the first-time injecting, eight women had no help , seven were helped by a friend, four by a sexual partner, three by their spouse, and three by a family member. The women described causes for injecting such as their isolation, family-related issues, and the desire to escape situations in their life. This suggests that injection initiation may have been motivated by coping mechanisms to deal with life difficulties. Further, participants also described wanting to inject and requesting close-by people who inject drugs to assist them, highlighting that young women who have close contact with other youth who inject may be more likely to begin injection practices. These quotes allow us to observe the motivations behind injection initiation for women and the role of substances as a coping strategy against adverse circumstances. These factors prompt injection initiation, contributing to the syndemic conditions that increase the likelihood of negative health outcomes and increased risk along the COR. --- "… I started when I was 20 and my mother-in-law had taken my daughters from me and I saw that my partner was injecting with his friends, and I said: 'I want, I want to try, I want to know what's up with this, because I saw how they fell asleep, at ease, and I wanted to forget about it, just like them... and yes, I did like it, because yes, yes it anesthetizes you. " "I began 6 years ago, I grabbed it [heroin] because I wanted to forget about things, to forget some things, and I asked a girl who was injecting herself if she could help me inject" "I began to use heroin at the age of 24 and the motive that caused me to start using was well... because of a lack of support from the family, at that time I was working as a sex worker, so because of issues with my family. My mother also worked as a sex worker and well the lack of her being with me, I am the only woman, and I am the youngest and the only one who has been on the streets more, I am the only one who likes to use heroin. That was the reason why I started using heroin, I took refuge in a substance. " --- Active drug use and social stigma Using drugs led to rejection and discrimination from the wider society, family relations, and healthcare personnel. Substance use was described as a cause for rejection from other social circles, resulting in the seclusion of groups of PWID and the isolation of women, with 84% of participants reporting being treated differently due to their alcohol and/or drug use history and 56% reporting being rejected from employment due to drug use. Participants described internalized stigma, with 64% of the participants reporting "agree" when asked if they "feel like a bad person" and "feel they are not as good as others, " as well as 72% that reported "feeling ashamed" due to their alcohol and/or drug history. The effect of stigma on the immediate reality of these participants is exemplified by descriptions of common societal beliefs against PWUD; associations of illicit substance consumption with criminal behavior and illness are portrayed. Notably, the quotes exemplify a higher severity in the consequences of stigma for being a woman, highlighting that they are held to a higher moral scrutiny because of their gender and age, while men experience less societal consequences from using substances. "… before, when I was walking down the street, they looked at me with respect, they greeted me, they even laughed with me. And now that I'm going down the Stigma and discrimination in healthcare settings, as well as perceptions of medical ill-treatment and neglect, hindered the women's access to care which increases risk by contributing to syndemic conditions. Participants reported maltreatment from medical personnel, with 20% reporting having to stop going to these services. Further, 88% of these women felt as though it is likely that healthcare workers will not listen to their concerns due to their alcohol and/or drug use history and believe healthcare workers will give them poor care. Qualitative data complement these findings by describing life-threatening perceptions of available health services and subpar quality of treatment, often involving deficient pain control measures and unnecessary procedures. "… so here in Mexicali, for example, in the general hospital they have a green light to kill all the people that are 'tecatos' , because in less than two months they killed 6 of my friends. One of them was shouting for his mom to get him out because they were going to kill him. And that's what happened, they killed him, he came out of there feet first" "Ah yes, in the hospital they discriminate against you a lot and they talk to you very ugly. Yeah, in the government health centers they are really mean, that's why when I get sick I prefer to draw the line and have them treat me over there , because here they are... here many people say that they kill you in the hospital and I think so, because many friends have gone being fine, only to be treated for a " cuerazo" they have, just to have it healed and cleaned and they end up coming out feet first, they say they had an attack, that this or that happened… and I think oh, this is true, they kill them. I didn't believe that before but I do now, a lot of strange things have happened. " reported being rejected by their families because of using substances: 64% of women reported often being looked down on and treated differently by family members due to their drug use. When anticipating how likely it would be that family members would think they could not be trusted, 64% responded it was very likely. Testimonials describe rejection and negative judgement by family networks and appear to reveal a causal relationship with participants searching for stigma-free social circles and spaces, often around other PWID. Harmful perceptions of substance use are seen to be recreated within the family sphere, leading to a decreased sense of self-worth within those relationships and the continued marginalization of the women. These conditions increase the risk of overdose along the COR as they appear to contribute to active drug use. --- "P: Because my family ... they call me 'tecata' and it's like the worst, it's the worst for them […] it's like you are disgusting or they think that I'm sick because of that or things like that […] Interviewer: So, you feel like your family has pushed you aside, but is it precisely because of that [using substances]? P: Precisely because of that. " "I started to be more on the streets, to ask for money, clean cars, everything that a person who uses substances does, live on the sidewalk, in empty lots or abandoned houses. Family doesn't accept you anymore, they don't trust you, bit by bit the trust goes away and you lose the family's support. " --- Active drug use and violence Physical assault, sexual violence, and transactional sex were prevalent experiences among participants, often in relation to substance use. Physical abuse was common, with 32% of women reporting being beaten by their intimate partners. Women described experiencing a high degree of sexual violence, with 29% percent of participants reporting being raped in the last three months. When asked if they were ever provided with a good or service in exchange for sex, 57% of participants answered "yes. " The most common exchanges were money , drugs , clothes , and gifts . With restricted access to these resources, women are faced with substantial personal risks. Accounts of sexual assault were also common, including at a young age. The quotes depict rape while being unconscious after using substances, forced exchanges of sex for drugs by intimate partners, and more violence linked to the use of substances, with some participants blaming violent experiences on using drugs. --- "… you get to live many experiences, I've used, I've gone unconscious, and they have done many things to me [while unconscious], I have stood up when they were finished doing it, and without using a condom or stuff like that, and so it's just having to come [to Verter] and get checked and wait to see if you're okay and if the man is okay, and that's it" "For example, I lived with a man like 5 years ago, and with that man, we didn't have money for the drug, right? And I was pregnant, I had 4 months. --- So, because I didn't want to go be with one of his friends to get money for the drug, he beat me, and beat me, and beat me, until he almost killed me. " "Well yes, I have been physically hurt before, and also mentally, and well everything is because of that, the addiction, if I didn't have that addiction nothing like this would happen to me, because the circle I hang out with are all thieves, rapists, murderers, the worst of it all" --- Addiction Addiction is the third stage along the COR. All 25 women agreed with having a drug problem and 92% self-identified as an "addict. " The majority acknowledged that if they do not make changes to their drug use soon, their problems will only get worse. Additionally, 72% of women reported wanting to make changes to their drug use, with 76% of women reported starting to make changes in their drug use, and 68% of women say they are actively doing things to cut down or stop their use of drugs. However, the difficulty of cutting down on consumption is linked to a lack of resources and quality treatment, and other syndemic conditions that contribute to the prolongation of active use. --- "… with drugs, I don't know if I can stop, really, because since I was very young, since I was able to think, I use drugs. And sometimes it gets really hard, I already had like two or three months without using and I go back, and the first thing I think about is to go and use drugs. " "No, no I don't really feel like doing a lot, I want to leave it, but for the 'malilla' I can't leave it because I start to feel bad. But in my heart, I want to stop […] I'm getting it down a lot. I want to go down to one, little by little stop completely. " --- Fatal and non-fatal overdoses Many syndemic conditions seem to contribute to the last stages of the COR, non-fatal and fatal overdoses. The changing environment in the local drug supply related to the introduction of fentanyl made experiences related to opioid overdose common for the women. Participants highlighted how, because of being a woman, certain overdose-related risks were exacerbated, including being sexually assaulted. Almost all reported having suffered an overdose in their lifetime. When asked if they had used any drugs known or now believed to contain fentanyl in the last 3 months, 76% responded yes. Further, when asking about participants' ability to access fentanyl, 75% said they could get it the same day. The majority of women reported that the last time they obtained fentanyl it was sold as black tar heroin. Out of 25 participants that used the SCS and had their samples tested for fentanyl, 15 of these women's samples tested positive for fentanyl. Multiple participants retold traumatic experiences of overdose and naloxone administration, either involving themselves or their peers. Testimonies of peers as first responders were frequent within qualitative data, with mentions of community members suffering fatal overdoses also being common. "They leave me there, they give me two, three slaps, and because they see that I don't wake up they leave me there, later in the evening I wake up, alone, where I did the shot, without my stuff, and maybe they did something to me, they might be my addiction partners and whatever you want, but here it's everyone by themselves, you get me? And then imagine being a woman. " --- "It makes me scared, I have never overdosed, I don't know what it feels like to overdose, but I have been there when people go down and I have brought them back, I've come to get the injections here and they come with me and help me, they don't let anyone die" "Yeah, I know fentanyl. I have a lot of friends that have passed away because of it, that have 'doblado' . Yeah, it's like it's stronger or I don't know but, whatever it has, it's the same amount that they were using before and they die, so it's really hard. " --- Harm reduction services Harm reduction is the first de-escalation strategy proposed by the COR that was present in the themes; these services have historically been a link between PWUD and health services. Participants highlighted the lack of safe spaces and services, with Verter being one of the few available to them. Many women described the ways in which they benefit from Verter's services. For instance, despite syringe sharing being uncommon, with only 6 women partaking in this practice in the last three months, 96% of women acquired their clean injection equipment from Verter. When asked about naloxone access, 67% of women reported having a take-home naloxone rescue kit. All but one of the women who had naloxone reported getting it from Verter. Before coming into the interview session, 28% of participants had never heard of naloxone rescue kits. Twelve participants had administered the drug to another person in the past three months, and 28% reported they had been administered naloxone due to an overdose in the same period. Related to drug checking services, 20 women reported that they had tested their drugs for fentanyl in the last three months. All of the women that did not use this service said they did not know of the availability. However, a majority of these women reported only using it less than once a month, with 15% using it one to three times per month and 15% using the services two to three times per week. Women reported using fentanyl test strips at the drug checking service, and in doing so, 50% of these women reported a change in their decision to use/how to use based on the result. Due to the presence of fentanyl, nine women decided not to use alone, and one woman chose to use by other means, not by injection. The quotes exemplify how Verter's services limit instances of overdose within their local environment and minimize the risk of syndemic conditions like sexual violence, law enforcement, and discrimination. These interventions capture several de-escalation strategies along the COR, contributing to lowering overall risk. The severe lack of services catered to this population in the city is also made explicit through these narratives. "I have come to ask for help like this sometimes that I cannot find another place to run to, other than here [Verter], which is where I feel that they help me, they support me, because since I was 13 "Yeah, I prefer to come here than getting picked up by the cops or that they come into the 'yongo' while we're using and they get us. So, I come to the SCS and I feel comfortable, I'm relaxed, and they even give me a coffee" --- Treatment Experiences with substance use treatment were shared among the majority of participants; however, the participants' accounts reflect the dire need for quality and low-barrier treatment services. Efficient services would help reduce the risk of fatal overdose for these women. Twenty-two women reported receiving professional help for the use of alcohol or drugs. Out of those women, 77% reported being enrolled in a methadone program in their lifetime; however, only three women reported being enrolled at the time of the study interview. Reasons for stopping methadone treatment included price, having spouses/partners that were not undergoing treatment, and reports of using other drugs in combination. The emergence of fentanyl shifted perspectives in 36% of women as they reported wanting to access addiction treatment in the near future. One woman reported already accessing addiction treatment due to concerns about the emergence of fentanyl. Women reported reasons for not accessing any kind of help or treatment to be due to fear of withdrawal, financial cost, dislike of the treatment regimen, and a location out of proximity. Involuntary treatment was common among participants and was also listed as a reason for treatment ineffectiveness. "Interviewer: So, you told me that your intention is to stop using heroin completely. Have you ever been in treatment to stop using it? P: Yes, I was in a rehabilitation center a while ago, but I left because it wasn't my intention, it wasn't something I wanted, I was forced and what I actually wanted was to continue to use. I went out [of the treatment center] and came out to the same thing, but this time I'm kind of tired, I think now would be a good opportunity to leave it [heroin], because the other day I didn't have any, and you get the cravings, and it would be good to leave it. " "It was good, they gave you time to recover and then you get psychotherapy, you talk and express yourself, and I think it's good, it's like therapy, I think that's good, no?" --- "P: … one day that I didn't have money for methadone, I felt worse than when I got 'malilla' from heroin, you know what I mean? Interviewer: Yes, it was worse, right? P: Aha, and that's why I said no, I'm going to cut it off here, because they told me that was worse than heroin. And I better cut it off... And well, money, I spent 200 pesos a day anyway. Interviewer: Ah, so money was also one of the reasons why you left that type of treatment, right? P: Yes" --- Criminalization The last de-escalation strategy proposed in the COR is the reversal of the criminalization of PWUD; the women's experiences provide vivid examples of how criminalization contributes to overdose risk and other harms. Encounters with police were commonly cited: 88% of participants reported being stopped by law enforcement during their lifetime. Out of the twenty-two women that reported yes, within the last three months, 55% reported that their clean syringes were confiscated after being stopped by law enforcement, 50% reported law enforcement demanding money as a form of a bribe, 45% reported that their money or other valuables were confiscated, 5% reported law enforcement confiscating and never returning ID documents, 32% reported standing before a judge, and one woman reported being sentenced to jail time and compulsory drug treatment. Forty-five percent of women reported being beaten by a law enforcement officer within their lifetime. Nearly half of the participants reported being told they are subject to arrest or detention due to their possession of drugs, despite being within the legal limit. "P: There were times when I was in rehabilitation for two to three months. Interviewer: And when you were there, was it voluntarily or did a family member take you? We did not identify significant themes or quantitative data for three de-escalation strategies described in the COR framework: partnerships with PWUD, prevention, and recovery. --- Discussion The data presented prove that this group of women is at great risk of overdose, as it provides evidence for all of the stages along the COR in this population. Our findings highlight the multiple syndemic conditions such as physical violence, sexual maltreatment, stigma related to their substance use, and a lack of services, that these women experience. These conditions contribute to the advancement of individuals toward more severe stages along the COR, increasing the risk of fatal overdose. As previously described in the literature on women who inject drugs, gender-associated stigma is very common in this population [6]. In our study, participants recognized that being older and male could make the use of substances more permissible. Stigma is also known to increase the marginalization of women who use drugs, hindering their access to services [7] and increasing their risk for serious health complications, such as HIV infection [26]. Offering a safe space free of stigma is a first step toward addressing some of the risks that women experience in the city. However, wider acceptance of drug use on a societal level and views of substance use disorders as public health issues rather than a criminal problem are needed. Treatment services are limited for women in the Global South, including Mexico. The cost of daily treatment at the local methadone clinics was identified as a predominant theme. Mexico lacks a free option for medications for opioid use disorder, and all private clinics in the country have currently closed [27]. In Tijuana, methadone and related services were estimated to cost between $95 and $179 US dollars per person [28]. Past the cost, stigma is well documented as a barrier for people who wish to receive treatment at methadone clinics, and this is especially prominent for women [6]. Buprenorphine-based treatment in primary care clinics could mitigate some of this treatment-related stigma [29]; however, without systematic government support to make buprenorphine free of charge, an intervention like this is unlikely to be effective for women. Criminalization was highlighted as a major issue for women. State forces were described to be involved in illegal activities such as theft, extortion, and physical violence. Police violence against people who inject drugs along the border has been well documented along the US-Mexico border [30]. In a Tijuana-based study, need for treatment was correlated with higher arrest and assault rates [31]. An older study depicted how police persecution drove risk practices related to injection in Tijuana and Ciudad Juarez [32]. More recently, a study looked at female sex workers who inject drugs in both cities and suggested that police likely target this vulnerable subgroup [33]. These findings are important, as the majority of the women in this article reported exchanging goods for sex and could indicate increased risk in the city. The human rights commission of the state where Mexicali is located also documented illegal arrests of PWUD in the city and issued a recommendation to the municipal police [34]. The literature that focuses on experiences of women who inject drugs and police interactions along the border is limited, making the Mexicali accounts a significant piece of evidence that highlight the pressing need for policy interventions in the region. The data also point to the ways in which harm reduction services, including the SCS at Verter, provide a safe harbor for women-not only when they are using, but before and after, when risk of violent experiences is heightened. Analysis of this data reveals key themes along the syndemic and COR frameworks that can inform on valuable interventions for women who inject drugs at the US-Mexico border. The need for support is particularly pressing in the Global South where low-resource conditions seem to be similar to Mexicali, with little to no services for PWUD. In Mexico, the federal government defunded all civil society efforts directed toward harm reduction [35], increasing the risk of PWID by limiting resources and the spaces where they could feel safe and supported. Increased availability and access to safe consumption sites are needed for women who inject drugs. More than half of the women reported injecting in a public space, and nearly all of them reported overdosing during their lifetime. SCSs can provide a space that is free of gendered violence, stigma, criminalization, and police harassment. These facilities have also been shown to decrease public injection and fatal overdoses [36]. In the context of the US-Mexico border, police forces and people with lived experience have shown acceptance of such interventions [37]. Because of the increased stigma that women who inject drugs experience, having SCSs exclusively for women could prevent risky behaviors by diminishing harm in these women's current microenvironment [38,39]. Additional interventions to de-escalate risk along the COR for women are needed in this region. For example, community-based drug checking programs are necessary, so people can know the contents of the substance they will consume and dose appropriately, particularly in a market flooded with illicitly manufactured fentanyl. An appropriate forensic and toxicology reporting system is also needed to gauge the true amount of overdose fatalities in low-resource settings like Mexicali, since there are currently no government data available. Naloxone accessibility and training of medical personnel have also proved to be crucial. A scale-up in availability and access to quality treatment services is needed in the region as current services are inadequate or nonexistent. Exploring the adaptation of programs such as the "do not use alone" campaign, implemented in cities across the USA and Canada, may also prove beneficial. Finally, although seemingly out of reach for contexts like Mexicali, where there is a heavy presence of drug trafficking organizations and associated violence, a safe supply of opioids will be necessary to effectively reduce overdose risk and provide compassionate and equitable avenues of care. Due to context characteristics, de-escalation strategies around partnerships with PWUD, prevention, recovery, and decriminalization efforts could not be identified. This setting exposes the urgent need for these strategies, not only in Mexico but throughout the Global South. Investment in evidence-based prevention programs, quality recovery paths, and criminal reform, are strategies to reduce overdose in communities at risk. Our study is subject to several limitations, as it is only reflective of one subgroup of people who use substances in the city, and their experiences and responses might not be reflective of others outside of Mexicali. Further research could be utilized to correlate risk factors to risk behaviors, though beyond the scope of this paper. Studies that focus on subsets of women who inject drugs that may experience increased risk, such as female sex workers and trans women, are also greatly needed. --- Conclusion Women in this study describe high rates of stigma, marginalization, and lack of support systems. These syndemic conditions further augment risk behaviors such as public injecting and non-sterile syringe sharing, fueling the progress along the stages of the COR. Lowthreshold harm reduction services in this context are welcomed by this population, particularly where public funding for these programs is nonexistent. Even though existing harm reduction services are insufficient to cover the needs of women who inject drugs, Verter provides interventions such as naloxone distribution and safe consumption services that seem to contribute to the de-escalation of risk for this group along the COR. Continued research engaging community members and organizations is needed to develop and implement syndemic-responsive and structural interventions which are needed to successfully address drug-related harms in low-resource settings such as Mexicali, including overdose and HIV risk. • 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 biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? Choose BMC and benefit from: ? Choose BMC and benefit from: --- --- Abbreviations --- --- Competing interests The authors declare no competing interests. ---

Background Research on women who inject drugs is scarce in low-and middle-income countries. Women experience unique harms such as sexism and sexual violence which translate into negative health outcomes. The present work aims to provide insight into the experiences of women who inject drugs at the US-Mexico border to identify social and health-related risk factors for overdose to guide harm reduction interventions across the Global South.We recruited 25 women ≥ 18 years of age accessing harm reduction and sexual health services at a nongovernmental harm reduction organization, "Verter", in Mexicali, Mexico. We employed purposeful sampling to recruit women who inject drugs who met eligibility criteria. We collected quantitative survey data and in-depth interview data. Analyses of both data sources involved the examination of descriptive statistics and thematic analysis, respectively, and were guided by the syndemic and continuum of overdose risk frameworks.Survey data demonstrated reports of initiating injection drug use at a young age, experiencing homelessness, engaging in sex work, being rejected by family members, experiencing physical violence, injecting in public spaces, and experiencing repeated overdose events. Interview data provided evidence of stigma and discrimination toward women, a lack of safe spaces and support systems, risk of overdose-related harms, sexual violence, and the overall need for harm reduction services.Women who inject drugs in Mexicali describe experiences of violence, overdose, and public injecting. Women are particularly vulnerable in the Mexicali context, as this area faces a noticeable lack of health and social services. Evidenced-based harm reduction strategies such as safe consumption sites and overdose prevention strategies (e.g., naloxone distribution and training) may benefit this population. Evidence from local organizations could help close the gap in service provision in low-resource settings like Mexico, where government action is almost nonexistent.

Background Family medicine is a clinical discipline, with family physicians at its core, focused on primary health care , which provides care to individuals and communities. The discipline aims to strengthen health systems in order to achieve health equity and universal health coverage , and to leave no one behind in pursuing the Sustainable Development Goals [1][2][3]. Uncertainties for policymakers and other stakeholders relate to what role this discipline may have, where it should be placed in the HS, and what benefits it could offer. FM is relatively new in many sub-Saharan African countries, and discussions on its definition, roles, positioning, practice, and impact are ongoing [4][5][6][7][8]. Defining FM has proven to be complex and varies in different settings around the globe. However, some principles are common to FM worldwide: relevance, accessibility, improved equity, comprehensiveness, personcentred care, cost-effectiveness, quality care, scientific and contextual evidence, integration in PHC, coordination of care, sustainability and innovation [9,10]. Although its fundamental principles are described similarly, the practice can be quite different when comparing FM in SSA and high-income countries [6-8, 11, 12]. While FPs are the first point of contact in many HIC, in SSA this is primarily the responsibility of nurses and community health workers, due to the low density of physicians [13,14]. FPs in SSA are mainly working at other levels in the health system and are often based in district hospitals where there is insufficient availability of other specialists [7]. At the same time, they have responsibilities for the whole district, such as supervising primary care facilities and addressing broader public health issues [7]. Such contextual differences shape the scope of practice and the required competencies of FPs. In several SSA countries, FPs have a clinical leadership and governance role in district health and in PHC teams [13,[15][16][17]. Different countries use different terminology related to FM, which is clarified in Table 2. In 2017, according to order of inception, FM was operating in South Africa, Nigeria, Uganda, Democratic Republic of Congo , Sudan, Ghana, Tanzania, Kenya, Lesotho, Botswana, Somaliland, Ethiopia, Mali and Malawi [4] 1 . The development of the discipline was strengthened by several initiatives, such as the Primafamed -Network and the World Organisation of Family Doctors in Africa, with the learning community being a strong asset [18,19]. There exists no standardization of training programmes between countries, even though there is a strong need for accreditation and quality assurance [18] The African Journal of Primary Health Care and Family Medicine has provided an academic platform since 2008 while it contributes to "a contextual and holistic view of family medicine and primary health care as practised across the continent" [20] At a global level, there is evidence that FM is costeffective and delivers good health outcomes, at low cost, with high user satisfaction [3,21,22]. Dr. Chan, a previous director-general of the World Health Organization , described FM as "our highest hope for the future" [23] In SSA, however, a lack of clarity on the scope and practice of FM among policymakers often leads to the discipline not being fully integrated into health systems. This scoping review started by looking at the definition of FM, its adaptation to HS in SSA and its potential role in supporting PHC, as defined by WHO in the Astana Declaration [24]. The aim of this review was to describe the current status of FM in SSA and to provide an overview of existing evidence of its strengths, Table 1 WONCA Definition of family physician [9] "The physician who is primarily responsible for providing first contact and comprehensive health care to every individual seeking medical care and advice, and arranging for other health personnel to provide services as necessary. The family physician functions as a generalist who accepts everyone seeking care in contrast to other physicians who limit access to their services on the basis of age, sex and/or type of health problem." Table 2 Specific terminology related to the discipline and human resources in family medicine in sub-Saharan Africa Medical doctors without further specialization have received different terms in the African setting, such as medical officer in South Africa, general practitioner in Rwanda, medical doctor in Kenya. Wherever needed, we decided to refer to doctors without further training as MDs. General practitioners -in Nigeria are seen as family physicians , similar as in Europe -in South Africa are seen as primary care doctors working in the private sector without further specialization -in Rwanda are seen as medical doctors without further specialization working in hospitals Due to this variety in terminology, we have not used the term GP, unless further explained in text. Family physicians are medical doctors with 2 to 4 years postgraduate training within the specialization of family medicine and registered as a specialist in the specific country. The Discipline of Family Medicine could apply to more than one type of health professional . Though in this article, we use the term discipline of FM as the medical specialty that deploys family physicians. General Practice was the name of the postgraduate discipline in West African countries such as Nigeria and Ghana at start of the programme. In the early 2000s this was changed to family medicine. weaknesses, effectiveness and impact. Identification of knowledge gaps should inform the development of a research strategy to provide additional evidence needed by policymakers in SSA as they strive to achieve the SDGs. To our knowledge, at the time of this review, no such scoping or systematic review of the evidence for FM in SSA was published. --- Methods The scoping review was conducted to address the research question: "what is the contribution of FM in strengthening health systems in sub-Saharan Africa". Additional sub-questions are listed in Table 3. This scoping review was performed as part of a larger project to identify the global priorities for PHC research and to establish a new global research consortium. In SSA, the Primafamed network performed this scoping review and two others that addressed community-oriented primary care and measurement of PHC systems [25,26]. --- The search strategy The scoping review protocol was conducted according to a pre-determined protocol [27]. Medical subject heading terms and search strings were agreed upon [27,28]. The databases searched in March and April 2018 are shown in Table 5. Inclusion criteria for articles identified in the search strategies are shown in Table 6. Selected articles had to meet criteria 1 to 3, and optional criteria 4 or 5 as shown in Table 6. All types of articles from peerreviewed journals were considered, but grey literature was not searched. Only articles published in English since the year 2000 were included. Publications before 2000 were few and less relevant to current health systems. Research articles that looked at delivery of care for specific diseases were excluded. --- Selection of articles Articles were initially selected using the title and abstract. Each of the team members focused on one of the search strings from Table 4. The first author reviewed all articles that were identified in the individual searches, taking out duplicates and creating the final list of selected articles. A total of 103 articles, with available abstracts, was obtained. Each of the researchers then received a list of approximately 20 articles to read the full text and reviewed if they met the inclusion and exclusion criteria. When the full text was not found or articles did not meet the defined criteria, they were excluded. Snowballing, retrieving relevant cited articles from the identified articles, was done until no more related articles were found [29]. Figure 1 shows the flow of article selection and the numbers that were in-and excluded [30]. --- Data synthesis Characteristics of the articles were then extracted into a matrix. As this was a scoping review, no critical appraisal of the quality of the included articles was done [27]. The matrix was then used to analyse the characteristics of the included articles and interpret the key findings in order to answer the research questions. --- Identification of knowledge gaps Key findings of these articles were compiled into a narrative which was presented in Gauteng, South Africa, April 2018, where a 3-day Primafamed workshop took place, with support of Stellenbosch University and Ariadne Labs. The Primafamed workshop also included the researchers from the other scoping reviews. Altogether, 15 participants came together to look at the findings of the scoping review and to validate the scoping review process. The knowledge gaps exposed by the scoping review were discussed. Following this meeting, the researchers completed the analysis and collaboratively wrote this article. additional evidence pertinent to the scoping review that was missed. --- Results Seventy-three articles were included from different journals . The majority of articles were published in the African Journal of Primary Health Care and Family Medicine and the South African Family Practice journal . Eighty-two percent were published in journals related to FM, 7% in journals related to education, 3% in journals related to human resources for health, 3% in global health journals and 5% in general medical journals. Thirty-eight percent of the articles were published in global journals, 33% in African journals and 29% in national journals . Twenty-three articles focused on SSA and 21 specifically on South Africa. The remaining articles focused on African regions or specific countries . There was a clear increase of publications over the years, with a peak in 2017 . Of the 73 articles, 28 were original research articles. Out of these, 16 used qualitative research methods, 9 used quantitative surveys, two were Delphi studies and one was a mixed methods study. Five out of the 73 articles were literature review articles. The remaining 28 were a mix of commentaries, editorials, conference reports, position papers and personal reflection. Experts acknowledged that "[Family Medicine] is limited by the lack of a regional definition. Governments, health departments and academic institutions would benefit from a clearer understanding of Family Medicine in an African context." [11]. Therefore, in 2009 FPs and other stakeholders from all over SSA came together at the Rustenburg conference and a statement of consensus on FM in Africa was agreed upon [11]. Key question 1: What are the different ways in which family medicine has been implemented in sub-Saharan Africa? The implementation of FM was usually reflected in the way the postgraduate training of the discipline is delivered. Therefore, next to the actual implementation, some aspects of the delivery of the training will be provided. The first developments in FM in SSA took place in South Africa and Nigeria, later East Africa and Ghana. Following this, most Southern African countries also introduced the discipline. There is no single model for FM. Each country had a unique set of circumstances that informed the most appropriate path for the development of FM, as shown in Table 9 [7,17,18]. Most postgraduate FM training programmes in SSA were inspired by the development of FM in Western Europe and North America. The literature, however, recognizes that the design of FM in HIC may not be applicable to SSA, as the pattern and distribution of diseases, shortages of healthcare workers and the rural location of the population are quite different [49]. FM training in SSA includes extended procedural skills especially for life-threatening medical, obstetric and surgical conditions in low-resource settings [32,49]. Development of FM, with adaptation to local contexts, has taken place in many SSA countries, albeit in different ways and stages of development, as shown in Table 9. The Primafamed network showed that between 2008 and 2010, the developmental stage of FM training and the acknowledgement of the discipline in the different HS improved substantially for each of the participating universities [18]. In a survey on understanding FM in SSA, some key leaders saw FM as a specialized PHC physician. However, most saw African FPs mainly as hospital specialists, a combination of the four major clinical specialties or as stepping stones to later specialization, rather than a positive career option in its own right [5]. Key question 2: What evidence exists for the effectiveness and impact of family medicine in sub-Saharan Africa? FM in SSA ought to improve health outcomes, reduce costs, provide skilled leadership for PHC teams and improve the recruitment, retention and distribution of generalist physicians [57]. There is a clear perception among co-workers that FPs in South Africa are making an impact on quality of care and population health status [62]. In instances where FPs have functioned well, the PHC team has begun to function more coherently [62]. Reflections from district managers suggest that FPs make a significant impact on the quality of clinical processes and health system performance [63]. FPs have the potential to develop a sense of responsibility for specific communities and to connect higher management principles with local community needs. They also have been able to broaden the scope of practice as they received a comprehensive training, covering biomedical, psychological and social issues. As a result of the improved quality and scope of practice, FPs may have impacted on referral rates and enabled more patients to be managed in the district, saving money at other levels [31]. This also saved patients time and money, as previously people would have had to travel to a referral hospital [39]. Student perceptions in different countries also seem to be positive. Nigerian medical students believed FM was relevant as a specialty in the healthcare system, although most students preferred another discipline for their career choice [42]. The majority of first year undergraduate students at the University of Ghana perceived FPs to be capable of providing total health care for 85-95% of patients and also to reduce overall costs of care [44]. A FP impact evaluation tool was developed in South Africa and used in a national survey. This survey questioned managers, doctors, nurses and other health professionals working with FPs. Family physicians were perceived to have a high impact in their roles as clinicians, consultants, clinical trainers, leaders of clinical governance and champions of community-oriented primary care and a moderate impact as capacity builders of the health care team. This impact was perceived to be significantly more than medical doctors across all six key roles [64]. These key roles for FPs were agreed upon in South Africa as shown in Fig. 5 [39,64]. This higher perceived impact was found in district hospitals and primary care facilities as well as urban and rural areas. An additional study found evidence that FPs were making a significant impact at district hospitals, particularly in child health care [65]. Surprisingly, this same study found that community health centers without FPs had better continuity and coordination of care, although this might be due to the confounder that FPs were placed at larger centers with a higher workload [65]. There was no correlation between FP supply and routinely collected district health indicators as numbers of FPs were still very small [65,66]. --- Key question 3: What is known about the strengths and weaknesses of family medicine as part of health systems in sub-Saharan Africa? A huge challenge is that FM is still fairly unknown, and due to low numbers, there is low visibility. In many countries FM is still in its early stages of development and there is little opportunity to assess strengths and weaknesses at scale [67]. However, policymakers, funders and other disciplines require more evidence to shift to a more positive attitude [5]. Roles and responsibilities of FPs are not always clear, neither is their exact place in HS, leading to difficulties with incorporating the discipline into health policy [5]. A continuous challenge around the continent is training sufficient FPs to show a significant impact on health outcomes [57]. Key stakeholders can sustain or sink the development of a programme and support is context dependent. While in several countries, such as South Africa, Nigeria, Kenya, Ethiopia and Ghana, it appears that decision makers find value in FM, other stakeholders have different perspectives on the discipline. In a number of other countries, such as Rwanda and Tanzania, support for its development is almost absent [4]. A 2010 study among FM educators revealed many challenges such as a need for more FP trainers, funding, resources, career opportunities, buy-in from hospital-based specialists and acceptance of FM as an essential discipline by authorities to train the required critical mass [18,68]. Within the discipline in SSA, there is some debate on whether FM should move away from a hospital-based focus towards a more primary and community-based focus [69,70]. Several strengths of the discipline have been identified. The creation of specialist FP posts within the public sectors of countries in Western and Southern Africa has established a career pathway with the same salary scale as other specialists in the academic teaching hospitals. This has enabled FM to attract good candidates and to start to transform the perception that only people without academic ability or ambition are attracted to careers in district health services. The district health services have seen FPs make a strong contribution in the area of clinical governance [39]. Key leaders saw the capacity to provide training, mentorship, supervision and leadership as some of the strengths [5]. --- Key question 4: Where are family physicians deployed in sub-Saharan African health systems? FPs are seen to be a communicator, collaborator and consultant strengthening care delivery. They are placed between non-physician primary care providers and specialist physicians at higher levels of care. The FP's niche is often said to be in the community, but they are usually placed at other levels of care due to low numbers of human resources for health [6]. This tension between concept and reality is a challenge for the identity of the discipline. FPs are employed at all levels of care, depending on the country's health system, available other human resources and the local needs, in primary, secondary and even tertiary care [36]. Key leaders saw FPs as "all-round specialists" at smaller hospitals, in the absence of other specialists [5]. In most SSA countries, FPs are deployed in the framework of the district health system, which includes primary care facilities and district hospitals in both rural and urban areas [39]. The skills gap at district hospitals, often in rural or remote areas, was a compelling argument for the inclusion of FPs in the South African health system as these hospitals were not likely to sustain or attract other specialists [39]. --- Key question 5: What roles do family physicians play in sub-Saharan African health systems? The 2009 Rustenburg consensus related the roles of FPs in SSA to "a comprehensive set of skills adapted to the circumstances, local needs, available resources, facilities and the competency and limitations of the practitioner" [11]. Due to the different interpretations of the practice, some argue that "searching for a role-based common definition is ultimately insufficient" [8]. Table 8 Rustenburg statement of consensus on family medicine in Africa [11] 1. "In an African context, the family physician is a clinical leader and consultant in the primary health care team, ensuring primary, continuing, comprehensive, holistic and personalised care of high quality to individuals, families and communities. 2. The family physician in Africa operates according to the principles of comprehensive person-centred care, with a family and community orientation, responding to undifferentiated illness and acting as a consultant to the primary health care team. 3. The role of the family physician in Africa involves a comprehensive set of skills adapted to the circumstances, local needs, available resources, facilities and the competency and limitations of the practitioner. 4. The family physician has a commitment and responsibility to a defined population to whom they are accountable through its representative structure. 5. The family physician's role requires close collaboration and teamwork with other members of the primary health care team, especially in the light of specific challenges, such as the insufficient numbers of health care workers. 6. The limited human, financial and material resources which exist necessitate skills appropriate to the situation. The family physician's responsibility as consultant and gate-keeper encompasses the economic, effective and efficient use of available resources , as well as the ability to prioritize. 7. The family physician is also a life-long scholar, which includes a commitment to life-long learning, research and audit, and a responsibility for the continuing education of the primary health care team and community. 8. The family physician is an interdisciplinary player, with a pivotal role in the coordination of the primary health care team, including leadership in clinical governance and patient referrals. 9. Cultural competency in relation to language, gender, traditions and religious beliefs: is an essential attribute. 10. The family physician must play an advocacy role, both through daily example and through their institutions, by actively identifying with, and advocating for, the poor and marginalized. 11. The family physician should generate social and managerial accountability and transparency in terms of effective and efficient health care delivery. 12. Family physicians have a responsibility for health resource and service management based on their clinical understanding and should have direct access to District Health Management Teams. 13. The family physician may focus on various areas of special interest at different times in their career. At the same time, they must remain competent across a broad scope of practice as a generalist." [11] Generalists with internal medicine, pediatrics, surgery, psychiatry, emergency medicine, obstetrics and gynaecology, community medicine and public health competencies in order to lead a primary health care team in a In well-equipped PHC facilities and district hospitals [56][57][58][59][60] The model that emerged in South Africa required the FP to work at district hospital and in PHC, with the key roles as shown in Fig. 5. As care providers, they needed to be able to manage the majority of patients presenting to the district hospital and health centres, while as consultants to the inter-professional teams they actually saw the more complex medical problems. As capacity builders, they delegated tasks and responsibilities, while giving support and training to other members of the team. As clinical trainers, they provided training and supervision to the resident FPs, interns and medical students. As leaders of clinical governance, they led the No further information available No further information available [4] Fig. 5 Roles and competencies expected of a family physician in South Africa [31] teams in improving quality of care and patient safety, while as champions in COPC they supported the PHC teams in engaging with local communities to improve population health [15,39,71]. In West Africa, FM roles included PHC that could be in the home or primary care facility, with a focus on family-oriented primary care as well as in secondary or tertiary care hospitals [40,72]. FPs were also placed in roles as clinical managers and medical superintendents throughout SSA, where they would manage systems, finances, schedules and patients and work as "agents of change" [6,13,43]. In many countries, the definition of roles is still "work in progress" [48,50]. In Ethiopia for example, roles and responsibilities have not yet been clearly defined. FPs are expected to be care providers in the primary and secondary care level and act as health managers and team leaders [57]. Despite the overall intuitive consensus of FM being comprehensive and holistic, there tend to be two major directions. One direction, due to low human resources and significant skills gaps, sees the need to support district hospitals with outreach from there to PHC and the community [8]. FPs, particularly in rural areas, need to have additional training in obstetrics, surgery, otolaryngology, ophthalmology and child health and mental health as "rural family medicine training in Africa should continue to include skills necessary for secondary health care at the district level until all developmental indices, including medical manpower, has engulfed the vast rural communities in these countries" [70]. In the other direction, FPs are seen as supporting and being part of PHC teams in the community, with a focus on COPC [72]. In South Africa, the national position paper embraces the need to train and deploy FPs in both ways throughout the district health services and not to choose between these options [73]. During a 2016 workshop on exploring future scenarios of FM in the South African health care system, a group of 40 FPs came to three possible scenarios , all depending on the direction policymakers would decide upon. They identified the need for increased advocacy for the discipline, especially in rural areas, and to increase research evidence of the contribution of FM to the health system [15]. --- Discussion The practice of FM varies from country to country, depending on the country's health system, the presence of means and manpower, the needs of the community and the burden of disease. There are a number of unifying principles: socially accountable responsiveness to local needs, adaptation to the existing health care system and ongoing development of the competencies required to succeed in the six professional roles, always grounded in relationships of care. In this way, FM is evolving to suit the health needs of communities and countries [5,7,11]. Ongoing discussion has been happening within the discipline between theoretical models, sometimes derived from HIC, and the reality of practice in SSA. Even within countries, there can be quite a different scope of practice related to specific needs. For example, roles are different for FPs working in urban health centres versus rural district hospitals. FPs are providing clinical care, including emergency surgical, anaesthetic and obstetrical care where appropriate. At the same time, they have roles that are oriented towards the community, public health, clinical training, capacity building skills, clinical governance and sometimes even managerial responsibilities. Table 10 The ambiguity of how family medicine is experienced in Kenya [6,44] The general population experiences family physicians as consultants working in district hospitals where they run outpatient clinics, conduct teaching ward rounds and perform significant major emergency general and reproductive health surgery Policymakers report these generalists as 'the wonder doctors' who demonstrate unique all-round competencies Other specialists tend to look down on FPs and see them as intruders to their specialties Other academics find it hard to differentiate between family medicine and the different disciplines Table 11 Thoughts on the state of family medicine in South Africa, strengths and concerns by Couper et al. [69] "We need to be very clear that we are different from other specialties, and not try to be the same. We think that some of our problems derive from the fact that we try to be the same as other specialties and to be seen in the same way, instead of making it very clear that we are completely different, because primary care is different from any other specialty; because our role is in the community, and not in the hospital like other specialists; because our focus is on all patients and not types of diseases or specific groups of patients; and because our approach is holistic, rather than specific. We are generalists who need to coordinate patient care in balance with specialists, who each have their own unique way of making clinical decisions. We need to be experts in health, and to say to our patients that their illnesses are but one part of them as whole people, while the specialist is an expert in saying which sicknesses they do or do not have, in a narrow field." "We are extremely worried by reports of family physician specialists who consider themselves to be too important to see patients with so-called minor ailments. We are deeply disappointed to hear students reporting on family physician colleagues saying: "I am a specialist family physician" with great pride, as they strut around and do not see the patients that the other doctors and nurses see, because they are specialists. We feel pain when we hear that our colleagues will not carry out the normal first contact calls, but want instead to perform "consultant calls", where they sit at home and are only called out on the odd occasion, while still being paid the full amount for overtime. Is that what being a specialist really means? Are we selling ourselves out? This is definitely not the way to gain the respect of our colleagues, the public, or the powers that be that run the health service. We do not think it is the way to gain selfrespect either." [65] As regards to positioning in the health care system, FPs are mainly placed in the district hospital with outreach to health centres, PHC teams and communities [74]. At regional or tertiary hospitals, FPs have been working to triage patients for other specialists or to fill gaps where specialists are absent. This leads to variations in the job descriptions, despite the core competencies being the same. There is a tension between training for hospital-based care and primary care. Some researchers warned that when FPs are fully drawn into hospitalbased specialist roles, it can undermine the holistic approach at the heart of medical generalism and therefore they argued to focus more on COPC [69]. FM is a discipline that is fluid, adjusting to the situation and developing over time. African health systems currently see the need for FPs at district hospitals more than in PHC and this may be because of the small numbers of FPs, a hospital-centric perspective, significant skills gap in district hospitals that other specialists are unlikely to address, and historic absence of such expertise in PHC teams. The discussion on deployment of FM at the primary, secondary and/ or tertiary level in the health systems may be transitionary and needs further exploration. Brain drain and retention of physicians is a huge challenge in SSA and has weakened the physician workforce of many countries [75,76]. Movement may be internal, to vertical disease-specific programmes, specialist care, government, urban areas and non-clinical work; and external, from central to South Africa and overseas [76][77][78]. There is a sense that FM may help to reduce this internal and external movement [57,67], though clear evidence was not found to support this hypothesis. In international literature, it is often stated that FPs are able to deal with 90% of the disease burden within their context [51]. However, evidence for this in the SSA setting was not found. Measuring the impact and effectiveness of the discipline will remain challenging. Low numbers of FPs and little research capacity to address such questions has limited the evidence available. Some initial evidence of impact has come from South Africa, but more is needed in SSA [67]. Before evidence can be demonstrated, there is a strong need for advocacy to get the discipline to the attention of policymakers and future health care leaders, in order to create the necessary critical mass of FPs in the health systems. Proof that high level commitment is possible has been shown in Sudan, where 2 years after implementation of the programme 207 FPs graduated and were deployed to health centres throughout the district, the majority of which were never served by a doctor before the programme [48]. UHC with equitable, high-quality care can be achieved through well-trained PHC workers including FPs, but sufficient numbers are essential [24]. Challenges include the lack of buy-in from hospital-based specialists and acceptance of FM by authorities [68]. Increased financial resources are needed. Initiatives such as shifting money from vertical disease-oriented programmes for capacity building and to strengthen FM and PHC should be pushed for [79]. There has been a move towards strengthening PHC in the region and to incorporate PHC and FM in undergraduate medical education. This may also lead to more openness among policymakers to consider including FM in health systems. This may lead to more exposure of medical students to PHC and a greater likelihood of them considering FM as a career [42,80,81]. Another key finding was the importance of collaboration and support between universities, both South-South and North-South as shown by the Primafamed network, in order to develop the discipline in SSA. Good communication and collaboration with policymakers and other key stakeholders was another important finding [8,18,45,58]. Presently, FPs are most often not mentioned in policy documents in SSA [82]. Strong commitment from policymakers is pivotal to train sufficient numbers of FPs. A study bias was that the researchers all had a strong background in FM in SSA and therefore their views were Table 12 Benefits and concerns in relation to Family Medicine mentioned by key leaders [5] Benefits Concerns • A clinically skilled generalist all-rounder at the district hospital • Mentoring team-based care in the community • A strong leadership role in the district health system • Developing comprehensive holistic practice of medicine • Focus on community care, such as community-oriented primary care • Family medicine is unknown or poorly understood • Poor recognition, visibility and role clarity • Struggling with policy ambivalence and needs advocacy • Slow pace of FPs being trained and low numbers of FPs placed into the health system Table 13 Possible future scenarios of family medicine in South Afric a [15]. In the most positive scenario the National Health Insurance is implemented with full focus on UHC, with PHC and family medicine at the heart of the health system, where FPs work in multidisciplinary teams in the community and in district rural hospitals. In the continuation of present scenario, the system continues to struggle with resources and quality in the public sector, with family physicians not fully integrated in the health system and struggling with the low numbers, especially in rural and remote areas. In the most pessimistic scenario, the National Health Insurance system is poorly implemented and family physicians leave for the private sector or overseas, the Department of Health decides to focus on other areas and end the deployment of family physicians. strongly shaped by their own situations. The researchers used a strict scientific approach while working on this scoping review, taking advantage of their knowledge of the field. Such insights also led to a better understanding of the complexity of the subject. Most research found in this review came from South Africa, fewer findings were from the other SSA countries. As mentioned earlier, another limitation of the study was the focus on English publications from peer-reviewed journals only. There has been some recent development of FM in Francophone Africa, such as DRC and West Africa; though in the literature we explored, little was written related to these countries. During the latest Primafamed meeting in Kampala , expansion to Francophone Africa was extensively discussed. Collaboration and further research is necessary to strengthen FM development throughout the whole of SSA. The main knowledge gap is the need for more evidence on the ways in which FM is implemented, particularly in countries outside of South Africa, and the need for more evidence on the effectiveness and impact of FM on health systems and outcomes. There is also a need to measure the cost-effectiveness of deploying FPs versus other types of health professionals. Research methods may need be tailored to the numbers of FPs. For example, case studies and more qualitative exploration of impact may be useful initially, while more quantitative observational studies may be useful when numbers are increased. Although the Lancet argued that FM "is so integral to the path towards the SDGs that reference [to it] in a goal or target would undermine its cross-cutting role" [3], more evidence is still crucial. --- Conclusions FM is still evolving in SSA, and more than any other specialty, it is responsive to the specific needs of the populations it serves, organizational models and health system designs. Therefore, no single, clear answer to the different questions we posed came out of this scoping review. The findings were numerous and depended on the different settings in SSA. In most settings, FPs are placed in district hospitals and work from there with PHC teams. FM is continuously adapting to the changes in the HS, burden of disease and the local needs. Evidence of effectiveness and impact is still limited as the discipline is reasonably young in SSA with low numbers of FPs. Opposition due to lack of understanding remains, but the positive perceptions of key stakeholders and the motivation of FPs, together with evidence from elsewhere, suggest that the discipline can fill a niche and potentially improve quality of care in SSA. Political will and support is pivotal and will enable the discipline to create the critical mass to place FM at the forefront, to reach UHC and contribute to the achievement of the SDGs in sub-Saharan Africa. --- --- Abbreviations DRC: Democratic Republic of Congo; COPC: Community-oriented primary care; HS: Health systems; FaMEC: Family Medicine Education Consortium; FM: Family medicine; FPs: Family physicians; GPs: General practitioners; HIC: High-income countries; LMIC: Low-and middle-income countries; MDs: Medical doctors; MeSH: Medical subject heading; NGOs: Nongovernmental organizations; PHC: Primary health care; PHCFM: Primary Health Care and Family Medicine; PG: Postgraduate; SDGs: Sustainable Development Goals; SSA: Sub-Saharan Africa; SWOT: Strengths, weaknesses, opportunities, threats; UHC: Universal health coverage; WHO: World Health Organization Authors' contributions JDM has been part of the inception of the review and leading the initial stage. MF has been leading the review process from April 2018 onwards. Each author has made substantial contributions to the consensual design of the review, the acquisition, analysis and interpretation of data. MF drafted the first draft, each of the other members of the team reviewed and critically revised where needed in several stages. MF kept oversight and combined input of each of the members. JDM mentored the team with his vast experience. Each author approved the submitted version . Each author agreed both to be personally accountable for the author's own contributions and to ensure that questions related to the accuracy or integrity of any part of the work, even ones in which the author was not personally involved, are appropriately investigated and resolved and the resolution documented in the literature. All authors read and approved the fina version of the manuscript. --- Funding No funding in the public, commercial or not-for-profit sectors was received to do this scoping review and write this article. Stellenbosch University provided funding for the 3-day workshop and Ariadne Labs provided support while writing the article. --- --- --- Competing interests The authors declare that they have no competing interests. ---

Background: Family medicine (FM) is a relatively new discipline in sub-Saharan Africa (SSA), still struggling to find its place in the African health systems. The aim of this review was to describe the current status of FM in SSA and to map existing evidence of its strengths, weaknesses, effectiveness and impact, and to identify knowledge gaps. Methods: A scoping review was conducted by systematically searching a wide variety of databases to map the existing evidence. Articles exploring FM as a concept/philosophy, a discipline, and clinical practice in SSA, published in peer-reviewed journals from 2000 onwards and in English language, were included. Included articles were entered in a matrix and then analysed for themes. Findings were presented and validated at a Primafamed network meeting, Gauteng 2018. Results: A total of 73 articles matching the criteria were included. FM was first established in South Africa and Nigeria, followed by Ghana, several East African countries and more recently additional Southern African countries. In 2009, the Rustenburg statement of consensus described FM in SSA. Implementation of the discipline and the roles and responsibilities of family physicians (FPs) varied between and within countries depending on the needs in the health system structure and the local situation. Most FPs were deployed in district hospitals and levels of the health system, other than primary care. The positioning of FPs in SSA health systems is probably due to their scarcity and the broader mal-distribution of physicians. Strengths such as being an "allround specialist", providing mentorship and supervision, as well as weaknesses such as unclear responsibilities and positioning in the health system were identified. Several studies showed positive perceptions of the impact of FM, although only a few health impact studies were done, with mixed results. Conclusions: FM is a developing discipline in SSA. Stronger evidence on the impact of FM on the health of populations requires a critical mass of FPs and shared clarity of their position in the health system. As FM continues to grow in SSA, we suggest improved government support so that its added value and impact on health systems in terms of health equity and universal health coverage can be meaningfully explored.

INTRODUCTION Frantically trying to limit the spread of the COVID-19 pandemic, governments worldwide imposed severe lockdown policies that suddenly changed the daily lives and routines of millions of people. This lockdown artificially created a fusion between the work and family life of men and women, who had to come to terms with their relative contribution to childcare and household chores. Such unexpected changes to the domestic division of labor fueled tensions and exacerbated pre-existing gender and socioeconomic inequalities, and might lead to long-term changes in gender norms. Through the lens of behavioral and gender economic models, augmented by language and discourse analysis, we view these lockdown policies as a requirement for citizens to cooperate with each other at multiple levels: on the one hand they need to cooperate with government in respecting lockdown measures themselves, and on the other they have to cooperate more within their households as the usual divisions between work, home, and school become blurred. It is important to understand how such cooperation has occurred as this has likely impacted households differently, depending on what happened to the livelihoods of household members and on the presence of children who need care and schoolwork help. For example, whilst the overwhelming evidence on the immediate health consequences of COVID-19 suggests that men have fared much worse than women, the emerging evidence on labor markets indicates that the impact has been stronger on sectors with high female employment shares and that women are more likely to be working in jobs that can be done from home and more likely to lose their jobs . We study the personal and family consequences of this abrupt change in daily life via anonline survey in three of the most severely hit OECD countries -Italy, the United Kingdom, and the United States -during the height of the initial lockdowns. Looking at the reallocation of household chores following the lockdown, we find a dramatic increase in the proportion of shared childcare across all countries and increases in the sharing of most other household chores. The only exception is grocery shopping, which has instead become a more specialized task largely done by men. In all three countries we have surveyed, job loss or working from home when the partner is working outside are associated with a greater deviation from the status quo in terms of division of labor. These unexpected shifts in division of household tasks fueled an increase in tension within couples, suggesting that the disruption in who did what around the house often came into conflict with ideas about who should do various activities. Documenting the extent to which family members have changed the work they do inside the household in response to lockdown is an important matter in both the short and long run, as this may dampen or amplify the effects of school closures on both children and their parents, women's chances of returning to work, as well as mental health and family outcomes since domestic tensions can affect family stability . --- BACKGROUND LITERATURE Household bargaining models predict that the division of tasks inside and outside of the household will be shaped by new labor market constraints, such as restrictions or expansions of working hours as well as the possibility of remote working and its relative flexibility. Updating this theoretical literature on household bargaining based on the expected results from the COVID-19 pandemic, Croda and Grossbard shows that the shifts taking place with the COVID-19 crisis suggested those with less bargaining power would acquire the majority of the additional domestic tasks. Bansak et al. indeed find that women living in United States states incentivizing stay-at-home parents were more likely to shift out of paid labor during school closures. Besides changing external constraints, the COVID-19 crisis can be viewed as an information shock for both partners. This unanticipated shock may have revealed to partners their true disutility from working from home, and the associated cost of sharing childcare and other household duties. Following the crisis, both partners might have updated their priors and re-bargained the division of household chores accordingly. As a result, we can expect: an increase in household bargaining with its associated tension and stress; and an increase in strategic behavior, with partners believing the situation to be temporary signaling a higher willingness to cooperate than would normally be the case but revealing their true colors by specializing at gendered tasks. The burden of extra home production has fallen unequally on women with the potential for long-term negative impacts on their wages and job prospects, as well as potentially creating tensions within households. More positively, new ways of working -and the fact that many fathers are also now doing more -has been hailed as having the potential to help change gender norms and lead to a more equal allocation in some households in the longer term. Although the expectation from the outset was that mothers would invest more of their own time and resources into home schooling, childcare, and domestic tasks than fathers thus exacerbating existing inequalities , some hopeful voices were suggesting that fathers who were working from home or furloughed might actually change their preferences toward caring once they were exposed to large amounts of it . --- MATERIALS AND METHODS --- Procedure, Participants, and Data Collection In April 2020 we ran an online survey on a total of 3,157 adults and 235 children . The survey was administered in three countries: the United States, the United Kingdom and Italy over the period 11-19 April, when our respondents had been in lockdown for between 5-6 weeks in Italy, 2-3 in the United Kingdom, and 1-4 in the United States depending on the respondent's specific location. Rather than being a cross-cultural comparison study, these countries were chosen as they were among the worst affected OECD countries by COVID-19 in both reported COVID-19 deaths per capita,2 excess mortality during the pandemic3 and, according to OECD projections,4 in economic terms too. The participants in the United States and the United Kingdom were recruited using an online survey collection tool5 which stratifies samples across age, sex, and ethnicity. The participants in Italy were recruited primarily through social media and thus cannot be expected to constitute as representative a sample as those of the United States and United Kingdom. 6 Of the 3,157 adult respondents, 2,526 indicated that they are cohabiting with either their partner or another adult during the quarantine period . This is the subset for which, when division of labor responses were provided, we measured and summarized the re-allocation of household tasks. Of these 2,526 cohabiting respondents, 893 indicated that they are also living with their children during the quarantine period . --- The Survey Instrument All recruited participants were directed to a Google Forms survey which varied by country. The Italian participants completed a survey which was in Italian, and the United States and United Kingdom participants completed versions of the survey in English, with minor variations to account for language use and demographic questions which vary across the two countries. All versions of the full survey may be found at https://osf.io/upq5g/. Adults were asked 46 questions. For the purpose of this paper, we focus on the adults. Our survey is a study of family life during the first lockdown, aimed at understanding how daily routine had been modified, how the division of labor within the household had changed, and how personal wellbeing, family tension, beliefs and aspirations, risk attitudes, and the willingness to cooperate within and outside of the household had been during this lockdown. Questions asked about participants' demographics, family status and living situation, as well as the ways in which the pandemic affected them and their households personally. This encompassed their health, wellbeing, employment situation, the allocation of labor within the household, tensions between household members, and anti-COVID prophylactic behaviors. Furthermore, to measure cooperation within couples, respondents took part in an incentivized Prisoners Dilemma game . Most of our questions are adapted wholesale from two main validated sources: Understanding Society -and in particular the Understanding Society Coronavirus Study: March 2021 questionnaire -and the United Kingdom Labour Force Survey. Some questions particular to COVID-19 were not piloted, our intention was rather to get the surveys out as quickly as possible during the height of the first pandemic wave. The children's survey was written following the model of the Youth Questionnaire by Understanding Society and is composed of 45 questions, among which we included one unincentivized risk elicitation question. Many of the family dynamics we were interested in might have changed suddenly at the start of lockdown, so we asked subjects to describe their current as well as pre-pandemic work status, chore allocation, and levels of tension. This allowed us to implement a "pseudo-panel" design, in which we can investigate changes in the outcome for a participant, even though both are measured at the same moment in time. --- RESULTS --- Summary Statistics By April 2020, the impact of the virus was already sizable. We find that 17% of respondents in Italy, 11% of respondents in the United Kingdom, and 10% of respondents in the United States were directly affected by COVID-19 either because they were tested for it or knew someone who was infected. 15% of respondents in Italy, 20% of respondents in the United Kingdom, and 17% of respondents in the United States lost their job or were furloughed. On a psychological level, respondents showed high levels of anxiety7 , and low levels of happiness8 . Respondents clearly feel isolated, and most reported that one of the first things they would like to do once lockdown ends is to visit family and friends . 20% of respondents in Italy, 41% of respondents in the United Kingdom, and 47% of respondents in the United States reported that one of the first things they would like to do once lockdown ends is to go shopping. Even while struggling with the personal and social toll imposed by the pandemic, individuals sustain high levels of cooperation. In terms of cooperation with lockdown measures, most people adopt the recommended protective measures such as washing hands , avoiding shaking hands , keeping a safe distance from others , and avoiding crowded places . Mask-wearing habits vary greatly by country, 84% of respondents in Italy, 13% of respondents in the United Kingdom, and 58% of respondents in the United States reporting that they wear a mask in public, reflecting the lack of a general consensus amongst governments and intergovernmental organizations on mask effectiveness at the time of the survey. A majority of respondents also follow more restrictive lockdown measures like limiting supermarket visits as much as possible , refraining from visiting friends , refraining from visiting relatives , and staying home except in case of emergency . In terms of cooperation, 69% of respondents in Italy, 71% of respondents in the United Kingdom, and 75% of respondents in the United States are willing to cooperate with strangers who respect social distancing measures, whilst 21% of respondents in Italy, 14% of respondents in the United Kingdom, and 20% of respondents in the United States would cooperate also with strangers who do not respect measures. These results indicate a strong willingness to cooperate, but only with those who are deemed responsible and trustworthy. We furthermore tie households' willingness to shift domestic labor allocations to cooperativeness. More cooperative households show propensity for a greater share of chores to be allocated toward the partner who experiences a relatively greater shift in time available to be spent at home -i.e., someone who has been furloughed when their partner has not. This indicates to us that the descriptive changes we see are not merely the utility-maximizing reallocations of a unitary household's labor supply . Norms make behavioral patterns persistent but sometimes exogeneous shocks to behavior can cause long-term norm change . The COVID-19 pandemic has certainly constituted a great exogenous shock -we have yet to see which of its many disruptions persist. --- Allocation of Household Chores In terms of household work, sharing of most duties increased during lockdown, but so did the burden on women. The proportion of shared childcare increased dramatically , and for most other tasks sharing grew between 2 and 11 percentage points on average. The one exception is grocery shopping, which during lockdown became a more malespecialized task . Overall, the burden of household chores on women increased, which is problematic as there are significant reductions in lifetime earnings associated with performing these activities . When comparing reporting of household tasks, interesting gender discrepancies arise. There are gender differences in reported increases in both one's own tasks , and in the partner's tasks, with men both in the United Kingdom and the United States samples reporting they do more than what women say their partners do. To understand the reallocation of tasks within the household, and the ensuing tension, it is important to first understand the time constraints faced by couples. Time constraints in our data are proxied by grouping individuals into three categories, according to their work status: working outside of the home ; working at home ; not working . Looking at the change in time constraints faced by respondents and their partners from before to during the lockdown, we can establish the potential for taking on more household work. We analyze the "shift in comparative advantage toward home production" by taking the difference between the respondents' and their partners' change in time constraints, in the spirit of a difference-in-differences9 approach . We focus on the perspective of individuals who saw an increase in time at home relative to their partners, for example people who started working from home during the lockdown while their partner kept on going to the office, or people who were laid off while the partner kept on working. 10 As expected, those who lost their job report doing more now, while those who are still working report doing the same or less, especially in the case of women. The opposite is true for those whose partners lost their job, again especially for women. Similar results are found by Del Boca et al. who analyze the change in time use of a representative sample of 520 Italian women and find that the additional burden during lockdown has been greater on women than on men, regardless of the partner working arrangement, while men spend more time doing housework only when their partner continues to work outside of the household. Figures 1, 2 report changes in childcare and grocery shopping from before the lockdown to during the lockdown. The figures are split according to those who have more time at home during lockdown than before, relative to their partner, and those who do FIGURE 1 | The division of childcare from before to during the lockdown, as reported by women who experienced a relative increase in time at home compared with their partner. not. As an example, Figure 1 presents the division of childcare amongst women respondents who experienced a relative increase in time at home compared with their partner, that is women who spend more time at home during the lockdown than before, while their partner does not. The upper left panel of The left panel of Figure 2 includes those who have more time at home during lockdown than before relative to their partner while the right panel includes those whose time constraints relative to their partner remain unchanged . For childcare, both men and women who saw a shift in comparative advantage toward home production take on more of this responsibility themselves compared to before. This same pattern, though slightly less pronounced, holds true across most other household work . However, when we look at grocery shopping, men are taking on more of it, while women less, regardless of their relative job status. This shift to men doing the shopping occurs across all households, including the ones where we would predict otherwise based on available time at home. The fact that relative time constraints are not predictive of who is doing grocery shopping suggests that the importance of time availability is outweighed by other factors such as risk perceptions, the unskilled nature of the task, and gender norms. For example, a possible interpretation of this finding is that men are more willing to take the risk of going out of the house to buy food, or conform to the gender norms pertaining to the role of men as hunters or connectors between the domestic and public sphere. Gender norms are known to be related to a range of family, economic, and educational outcomes , and are quite different across the three countries that we surveyed. 11 Additional evidence supporting the notion that shifting time availability is predictive of some -but not all -variation in household task reallocation is shown in Table 1. Here we report the marginal coefficients from ordered probit regressions using time constraints and cooperation with the partner to predict the change in household tasks following the lockdown. The outcome variable is coded such that a higher number is indicative of less involvement. 12 We see that having relatively more time at home is always related to greater involvement in household chores , slightly more for men than women, although often the relationship is small. Specifically, men who experience relatively more time at home compared to their partners take on a greater share of childcare, as well as a greater share of grocery shopping, though this latter effect is smaller as we observe men taking on more grocery shopping duties regardless of their change in relative time at home. Only a few women are seen to take on a greater share of grocery shopping when they experience an increase in available time at home relative to their partners. Women also take on more cleaning 11 The United States and United Kingdom are both ranked 15th in the Gender Development Index of the United Nations Development Programme , and the labor force gender participation gap is smallest in the United Kingdom , followed by the United States with 12% and Italy with 18.3%). However, the last WEF report on gender equality indicates that the representation of women on company boards is highest in Italy at 34% , followed by the United Kingdom at 27.2%, and the United States at 21.7%; politics is also somewhat different with 30% of women MPs the United Kingdom, 19.1% in the United States, and 31% in Italy. 12 Specifically, the outcome variable is the first difference of self-reported allocation of several household tasks, coded such that 2 corresponds to "Mostly partner, " 1 to "Shared equally, " and 0 to "Mostly self." FIGURE 2 | Changes in division of childcare and grocery shopping from before to during the lockdown, split by relative change in time at home. The above Sankey diagrams report changes in childcare and grocery shopping allocation from before the lockdown to during the lockdown for women and men respectively. The figures are split according to whether the respondent has relatively more time at home than their partner during the lockdown compared to before or experienced a similar change in time at home as their partner following the lockdown . Source: online survey in Italy, United Kingdom, United States. For childcare, N = 476 and 316 . For grocery shopping, N = 1,208 and 873 . The coefficients are marginal effects from an ordered probit regression. Standard errors in parenthesis. *Indicates p-value < 0.10; **p-value < 0.05; ***p-value < 0.01. Outcome variable is the first-difference in self-reported allocation of several household tasks, with 2 corresponding to "Mostly partner," 1 to "Shared equally," and 0 to "Mostly self." All other answers are coded as missing. Relatively more time is an indicator variable for having relatively more time at home than the partner during the lockdown compared to before [constructed as a difference-in-differences between the time available at home because of job status during the pandemic vs. before and of the respondent vs. the partner ]. Cooperate with partner is an indicator variable for willingness to cooperate with the partner in a Prisoner's Dilemma game. Controls include country fixed effects and polynomial in age. Source: online survey in Italy, United Kingdom, United States. duties when they experience an increase in relative time at home. Interestingly, whether respondents would be willing to cooperate with their partners in the Prisoner's Dilemma game is also predictive of taking on more household responsibilities during lockdown, particularly men taking on more childcare and women doing more cleaning. Controlling for propensity to cooperate with one's partner does not substantially change the estimated predictive power of experiencing a relative shift in time at home, suggesting independent contributions to the respondents' willingness to reallocate household chores. Few movements in the allocation of cooking, laundry, or gardening duties are predicted. Supplementary Figure 2 plots the coefficients from the ordered probit regressions in Table 1, as well as estimates of these coefficients in which the Italian respondents are weighted by similarity to the representative United States and United Kingdom samples. 13 Estimates are broadly similar whether or not we account for selection in the Italian sample. 13 Observations are weighted using an Inverse Probability Weighting method as suggested by, e.g., Hernán et al. ; Howe et al. . We run a logit regression where the outcome variable is an indicator for being part of the Italian sample and the explanatory variables are gender, age, age squared, age cube, presence of children, and several indicator variables for the job status . The predicted probability p from this logit regression is used to construct IPW weights: 1 -p p for the Italian sample and 1 for the rest. --- Family Cooperation and Tensions So far, we have shown that the lockdown led to substantial reallocation of household chores, following not only changes in time constraints, but also individual propensity to cooperate with the partner and task-specific gender norms. Next we ask: is this reallocation of tasks conducive to more or less harmony within the couple? To investigate the potential consequences of an uneven reallocation of chores, we examine the respondent's report on tensions about the division of household labor, quarrels before and during the lockdown, and the language used to discuss these issues. Marked gender differences are present when looking at tension over the division of household tasks and general wellbeing. Tensions in the household are reported in all countries, with women generally reporting higher household tensions than men. Some household tension 14 is reported by 28% of men and 43% of women amongst respondents in Italy, 28% of men and 37% of women amongst respondents in the United Kingdom, and 32% of both men and women amongst respondents in the United States. Child respondents report household tensions more frequently than adults, with 67% of children from the Italy sample and 64% of children from the United Kingdom and United States samples reporting significant household tension. In line with national surveys of wellbeing over the same period, most respondents report higher anxiety and lower instantaneous wellbeing relative to overall life satisfaction and sense of leading a worthwhile life, with women reporting consistently higher anxiety and lower wellbeing than men in both Italy and the United Kingdom, while the averages are closer for women and men in the United States sample. Average life satisfaction is 5% lower amongst women than men in the Italy sample, 1% lower in the United Kingdom sample, and less than 1% lower in the United States sample. Instantaneous anxiety, on average, is 19% higher among women than men in the Italy sample, and 12% higher among women relative to men in the United Kingdom and United States sample. 15 These findings align with those in the United Kingdom and United States indicating that women, and mothers in particular, experienced a markedly larger decline in wellbeing than men during the pandemic . When asking questions directly to children, we find that those with above-average assessments of their school, their teachers, how hard they work, and how well they perform consistently report higher wellbeing and instantaneous wellbeing than children with below-average assessments, as do those who report using social media less than an hour both during quarantine and before. To understand how these changes in wellbeing are related to reallocation of household tasks, the Sankey diagrams in Figures 3,4 represent how the allocation of childcare and cleaning changed from before to during the lockdown, for Italy, the United Kingdom, and the United States respectively, with flows color-coded based on the level of household tension reported by respondents specifically related to the allocations of household tasks. 16 Darker lines indicate higher levels of reported tension. Considering for example childcare, across all samples, the respondents more likely to report the lowest level of tension in the household are those who share childcare, alongside those who report that their partner is mostly doing it and, only in the United States sample, those who outsource it. This observation aligns with the finding from a study in the United States that insufficient support with childcare has been a key driver of conflict amongst couples with young children during the lockdown . The respondents who report high levels of tensions vary by country. Respondents in Italy who report the highest tension are those who either continue to be solely responsible for childcare or saw a reallocation of childcare to themselves, compared to a previous shared or outsourced provision. This is different from the United Kingdom case, where the highest tensions are reported by respondents who are now sharing more of the childcare than before the lockdown, regardless of whether they were previously solely responsible or their partner was. The United States sample is somewhat in between, with highest tensions reported by both those who saw an increase in their own load and those who were previously solely responsible and started sharing during the lockdown. When considering other household activities, we again find that respondents reporting the lowest levels of tension are those who report sharing tasks. High levels of tension are related to deviations from the status quo, and not just changes that increase one's own load, but also those that shift tasks away from oneself and to the partner. These patterns of low tension when sharing and high tension when changing allocations are clearly illustrated by the diagrams displaying changes in the allocation of cleaning in Figure 4 . Additional evidence supporting the notion that changes in allocation of household tasks is predictive of higher tension is shown in Table 2. Via an OLS regression, we find that changing the usual allocation of any household task during the lockdown is related to higher levels of tension. Higher tension is particularly predicted by changes in grocery shopping, cleaning, and childcare duties , while the association with changes in cooking and gardening chores is smaller and less precisely estimated. To give an idea of the magnitude, the association between tension and changing who is in charge of groceries or cleaning because of the lockdown is between one third and one half of the association between tensions during the lockdown and having a child present in the household .17 Except for cooking, the strong association between changing tasks and tension is robust to the inclusion of detailed controls for the respondent's and their partner's job status, as well as personal characteristics such as cooperation, risk seeking, mental health and wellbeing . Furthermore, similar patterns can be found by using an indicator of higher levels of quarreling during the lockdown as outcome variable . 18Gender differences in the relationship between tensions and changes in allocation of household tasks are not pronounced. As shown in column 4 of Table 2 , gender differences in this association are usually small, and often noisily estimated. Exceptions are changes in who is responsible for gardening, which is twice as strongly associated with tension when the respondent is male , and changes in childcare . These results are important as tensions can impact family stability: divorce filings were reported to be on the rise in Wuhan 19 and family dynamics can be altered by calamities and natural disasters: divorces increased in New York after 9/11 and marriage, birth, and divorce rates increased in the year following Hurricane Hugo in 1989 in the 24 counties of South Carolina that were declared disaster areas compared with the 22 other counties in the state . In our sample, 21 of 2,607 respondents with partners declare they want a divorce when quarantine ends. Our survey instrument was not designed to investigate domestic violence and the nature of our sample and its collection mode would probably have excluded vulnerable families where this issue would be more prevalent, but it is important to note that lockdown has been linked to domestic violence , and the inability to meet financial obligations and maintaining social ties is likely to increase family stress and domestic violence . --- Talking Through It Communication difficulties play a vital role in marriage unhappiness and communications-related issues are cited much more often as causes for divorce than external issues, including economic ones . To better understand potential issues with communication, we analyzed the language that respondents used to answer open ended questions to our survey. When it comes to the language used to address tensions arising from the establishment of a new routine and allocation of household tasks during the lockdown, we find markedly different styles by gender and, to a lesser extent, by country. In all three countries, women are more likely than men to voice their concerns in our survey. When addressing the disagreement women talk about their expectations, dissatisfaction, and anger. Men's preferred strategy is to say nothing, and when they do, they do so to signal there is not a big problem and no routine has been established, often because it does not seem to be needed. The word clouds in Figure 5 show the language used by female and male respondents in each country. This gender difference in the use of language to talk about tensions can be interpreted as a reflection of the gendered expectations in terms of role divisions, and might further reinforce such roles. Household work and the related communications are seen as a female domain and not a space for men to engage in conversations. The 'proper' workplace, and not the household, is the place for men to communicate. Also, women are socially expected to express emotions and hence are possibly more likely to open up about their frustrations as opposed to men who are expected to be more restrained . 19 https://www.globaltimes.cn/content/1181829.shtml --- CONCLUSION Our study finds a dramatic increase across Italy, the United Kingdom, and the United States in the proportion of shared childcare, and increases in the sharing of most other tasks, with the exception of grocery shopping which instead became a more specialized task done largely by men during the lockdown. In all three countries we surveyed, the reallocation of household tasks mirrors the relative changes of job status within the couple: respondents who lost their job or who are working from home are shouldering a greater share of household chores. The opposite is true for those whose partners lost jobs . Thus, asymmetric changes in job situations are strongly associated with a deviation from the status quo in terms of division of labor. The specialization pattern we find, with women doing more of everything and men doing more shopping, is corroborated by a range of studies carried out during the crisis. In the United States, Carlson et al. find that both parents report devoting more time to housework, with substantial increases in the sharing of both childcare and household tasks . Such increases in sharing, however, are slightly disproportionate: in childcare, mothers do more of the homework supervision and fathers more of the playtime; in household tasks, fathers especially increased time devoted to grocery shopping. Parents also disagree on how much fathers actually do: 42% of fathers report an increase in housework time, 45% report more time in the care of young children overall, and 43% report more total care of older children, while only 25, 34, and 20% of mothers respectively say their partners did so. Sevilla and Smith show that United Kingdom families with young children have been doing the equivalent of a working week in childcare, with women doing the greater share and a reduction in the gender childcare gap, with men's increases very sensitive on their employment status . In Spain, Farré et al. show increases in women's loads and a similar pattern of men specializing at grocery shopping, possibly, they argue, because it is a relatively easy, out-of-household task and perceived as carrying more risk. We must also caution that while our United Kingdom and United States samples are representative on a few sociodemographic variables , we have obviously surveyed a segment of the population with stable access to the internet, as well as time availability to complete the survey. We are therefore unlikely to have sampled those families with the greatest tensions or sharpest time constraints. More work must be done to assess the needs of the most vulnerable families, especially since their wellbeing and health are most at risk from the COVID-19 crisis. As with much of the COVID-19 crisis, it is early days to speculate on the durability of these changes. However, there is some hope that more sharing of childcare and household work might be the silver lining on the cloud of adverse occupational effects that women are set to face: Alon et al. and Hupkau and Petrongolo speculate that this pandemic and the consequent reallocation of household chores may lead to a change of work and gender norms similar to that experienced with paternity leave introductions. However, these increases in sharing are not documented across all households, but rather among respondents who also report low tensions, and we might therefore be seeing a very partial silver lining, with women in some households experiencing multiple in-and out-of-household shocks. There is, as yet, no direct evidence on the impact of COVID-19 on gender norms. In many households, women are doing more childcare, and pre-existing norms may become entrenched. But some households, particularly those where men are not working, are now experiencing a more equal gender division and this may lead to longer-term positive changes, particularly if they are combined with new ways of working . Sevilla and Smith report that 28% of those who are currently working from home did not previously do so. Even although the pandemic is forcing men to participate more in house work, many still do so by exercising their freedom to choose the more pleasant tasks, deciding how to contribute through gender-tinted lenses. The disaster literature suggests alternative scenarios for the short and the long run in terms of changes in the division of labor: Peek and Fothergill relay how the gendered division of labor may be even more pronounced in disasters, with women cast as nurturers and men as protectors, but also cite studies conducted on hurricane Andrew in the 1990s that found that, while gender roles were suspended and readapted during the crisis, they then reverted to previous arrangements largely due to external constraints related to labor market forces and availability of childcare. Some evidence from paternity leave policies suggests that temporary changes can have longer-term effects on social norms, shown by increases in the time that fathers spend in household activities, including childcare . In the United Kingdom, data from Understanding Society show however that with the easing of restrictions toward the end of 2020, the share of fathers working positive hours had recovered close to their pre-pandemic rates, but for mothers, particularly single mothers, they continued to lag . A feature of the COVID-19 lockdown is that most of the work that was still happening, and all of the childcare, have moved into homes. This forced fusion of work and family life means that men at the very least witnessed, if not shared, the demand to be available for both work and family, typically experienced more acutely by working mothers. We do not yet know whether this will be sufficient to generate the changes in workplace and household culture necessary to create more balanced allocations of both paid and unpaid work , but the differences we find in levels of tension across households suggest this will not be a smooth or an evenly distributed transition. Two things are distinctive about COVID-19 lockdowns. The first is the scale of the demand-side shock. The changes have been profound. The total amount of childcare being done at home is of a completely different order of magnitude higher than usual because of the closure of almost all formal childcare. The impact has been across the board, affecting all families, meaning that almost all men have increased the quantity of childcare they do. The second difference is that this is not a deliberate policy to promote a more equal distribution of childcare: changes in the division of labor are unintended consequences of measures to stop the virus from spreading. The changes in the division of household tasks that have been brought about may need to be recognized and reinforced to have longer-term effects. --- DATA AVAILABILITY STATEMENT The datasets presented in this study can be found in online repositories. The names of the repository/repositories and accession number can be found below: https://osf.io/upq5g/. --- ETHICS STATEMENT The studies involving human participants were reviewed and approved by University of Reading, School of Politics, Economics and International Relations Ethics Committee. Written informed consent to participate in this study was provided by the participants' or their legal guardian/next of kin. --- --- SUPPLEMENTARY MATERIAL The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpsyg. 2021.687570/full#supplementary-material --- 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. 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The lockdown imposed following the COVID-19 pandemic of spring 2020 dramatically changed the daily lives and routines of millions of people worldwide. We analyze how such changes contributed to patterns of activity within the household using a novel survey of Italian, British, and American families in lockdown. A high percentage report disruptions in the patterns of family life, manifesting in new work patterns, chore allocations, and household tensions. Though men have taken an increased share of childcare and grocery shopping duties, reallocations are not nearly as stark as disruptions to work patterns might suggest, and families having to reallocate duties report greater tensions. Our results highlight tightened constraints budging up against stable and gendered patterns of intra-household cooperation norms. While the longrun consequences of the COVID-19 lockdown on family life cannot be assessed at this stage, we point toward the likely opportunities and challenges.

Introduction to COVID-19 research Millions of lives have been brought to an abrupt end during the COVID-19 pandemic. The impact of this immeasurable loss will continue to reverberate for decades to come. As one might expect, COVID-19 has also had a deep impact on social relationships and the study of those relationships. The COVID-19 pandemic has forever changed the social sciences, ushering in a wave of work ranging from topics of financial contagion to the psychology of isolation, to theories of cultural trauma, fear scales, and entirely new disease discourses. Medical research boomed in response to the pandemic and the explosion of research quickly expanded across the social sciences . In some instances, this meant reviving old concepts and in others introducing new ideas and hybrid areas of study. Despite the prolific growth in recent months, there have been few empirical attempts to thematically evaluate this evolving body of social research. Accordingly, this study aims to assess and characterize this diverse body of work while also providing important insights into emerging subfields of study. Do disciplines overlap in their research interests? And if so, where does interdisciplinary research overlap and what ideas exist at these potential intersections? Considering this, the following study employs bibliometric citation analysis to analyze and describe the various disciplinary trajectories of COVID-19 research across the social sciences. Using the Girvan Newman algorithm, this study identifies the initial research clusters from a sample of 3327 covid studies published from January 1 to December 31, 2020, and their corresponding 107,396 cited references. In doing so, we provide a nuanced picture of the impact of the COVID-19 pandemic across the social sciences during the emergent period of the pandemic. Bibliometric analysis is the "statistical analysis of written publications, such as books or articles" . The citation approach has become increasingly popular in recent years as a scholarly tool for summarizing vast amounts of research. It has proven particularly helpful for the eruption of COVID-19 research. Some noteworthy examples include medical studies , psychological impacts , geriatric medicine , cross-national differences , and biosecurity to name a few. Aristovnik et al. and Zyoud and Al-Jabi's preliminary studies took a purely quantitative approach to classify early covid research. It was not until the seminal work of Liu et al. that the first in-depth examination of covid with a close emphasis on social science traditions. Similarly, we place special emphasis on the disciplinary differences between competing social science approaches as noted in the descriptions of each disciplinary cluster. --- Methods --- Bibliometric analysis and citation network data Broadly considered, bibliometrics is an analytical approach used to quantitatively analyze academic literature as networks. This generates a refined understanding of how research is produced, and organized, as well as how they exert influence on later scholarship. These networks illustrate diverging disciplinary research areas as well as shared scholastic roots. Drawing on academic publications as data sources, bibliometrics uses citation and reference data to provide a rich understanding of who cites who. Bibliometrics has been employed as a quantitative technique to trace relationships across disciplines, assess scholastic groupings, identify gaps in research, and examine the influence of individual publications . Citation analysis is a specialized application of social network analysis. The technique focuses on the examination of the frequency, patterns, and visualization of citation ties contained within a body of published literature. In citation analysis, journals or individual publications typically constitute network "nodes". Those nodes, in turn, contain keywords and references that can be used to identify network "edges" as links to other publications, scholars, and journals. Such an approach sheds light on the patterning of citations to reveal the network properties among a group of publications. This allows for the assessment of the underlying structure of a body of work, or to identify seminal works in the literature. --- 3 Co-citing occurs when a third publication cites two other publications and serves as a tool for expanded citation analysis. This measurement approach, as articulated by White and Griffith , offers insights into the structure and influence of ideas in a network of publications over time with a historical emphasis. Similarly, bibliographic coupling identifies a link when two studies cite one or more shared references and is generally used to identify more current trends. The consensus among network analysts is the co-citation approach is the superior bibliometric statistical technique for big data . --- Citation data The data for our study were obtained from Clarivate's Web of Science using the Core Collection citation indexes. We identified publications in the primary Social Science Citation Index and Emerging Sources Citation Index for 2020. This timeframe represents the respective topic from its formal origins to the present. Pertinent publications were identified by conducting independent title and keyword searches for each of the following terms, specifically "COVID", "coronavirus", "pandemic", and "quarantine". Each search also contained all known variations of these terms . Works that did not contain some variations of these words have been omitted from the analysis. The primary search yielded 3327 articles published from the beginning of the current COVID-19 pandemic until February 11th, 2021, with a combined total of 107,396 references published between as early as 1927 and as recently as January 2021 pre-prints. The full records for these publications and their references were downloaded. Given the high number of references considered, all the references could not be cited here . Co-citation was employed to identify links among the publications, whether in terms of shared keywords or references cited. These links indicated relations between pairs of publications that share either one or more references or keywords, or directly cite one another. We used visualization techniques to observe the structure of the shared keywords and citations in the sample and their shared citations . The bibliometric analyses were performed with VOSviewer, a software package developed for constructing and visualizing bibliometric networks at the University of Leiden, The Netherlands . VOSviewer includes a "smart local moving algorithm" code to detect the presence of clusters and network centrality as specified by Van Eck and Waltman . --- Results --- Keywords The most popular keyword was "COVID-19" with 1933 uses. This significantly overlapped with the other variations such as coronavirus, sars, sars-cov-2, COVID pandemic, influenza, and epidemic. This was closely followed by health, impact, crisis, risk, social media, resilience, vulnerability, social distancing, quarantining, and telemedicine. Economic concerns were immediately apparent in the use of tourism, commodity-chain, trade, volatility spillovers, economic effects, stock market, retail, financial crisis, recession, market, GDP, foreign direct investment, development, corporate responsibility, and remittances crosscut several subclusters . Mortality, morbidity, loneliness, PTSD, anxiety, isolation, burnout, and end of life were frequent keywords among the sample. These terms depict thousands of terrible experiences during 2020. These themes also overlap with several related keywords such as post-truth, fake news, Donald Trump, hoax, and lies. While a dark experience for many, there were other positive themes present among social science keywords in our sample. Words such as community capital, solidarity, empathy, wellbeing, degrowth, mutual-aid, and mindfulness illustrated a more positive tone, as did localism, agriculture, gardening, and rural revival. Many popular works integrated their methods into their keywords, demonstrating the wide diversity of methodological approaches used in the COVID-19 wave of research. Among the most popular were autoethnography, ethnography, regression, GIS, models, time-series, content analysis, pedagogy, methods, cartogram, digital media, big data, factor analysis", and data visualization. The size of the node is weighted link strength to highlight the more important works which were gaining popularity in their respective fields. Many of these methods have served as strategic tools for understanding a wide-range of experiences and patterns associated with the COVID-19 pandemic. COVID-19 research in the social sciences exhibits significant clustering largely by scholastic discipline. At the heart of the sample, we observed a clear medical core with nine surrounding subgroups that stretched out in various directions including the medical core, transmission mitigation, rationing, tourism, psychology, media, behavioral trends, criminology, sociology, macro-economic, financial contagion, historicalcomparative, and infectious disease. In what follows, we summarize the literature within each of the ten research clusters. Cluster 1: the medical core Huang et al.'s piece in The Lancet in early February 2020 noted the lack of prior research on COVID-19 at the time of publication and in response served as the initial identification of the virus. The study explored an early cluster of 41 human patient cases exhibiting fatal or near-fatal instances of pneumonia. One-third of the patients required admission to intensive care units and six died, despite their relatively young median age of 49 years . After its publication, the piece prompted a larger wave of research on COVID-19. Following Huang et al. and Lauer et al. examined the incubation period of COVID-19, and placed incubation at around 5 days, with symptomology presenting between 11 and 14 days. Lauer et al. proposed a quarantine period of 14 days based on their epidemiological analysis. Li et al. ) continued examining 2019-nCoV for epidemiologic characteristics and incubation periods, finding that cases had an incubation period of 5.2 days, with the early stages determined to be doubling every 7.4 days ). At the time, the reproductive level of the virus was determined to be around 2.2, a high infection rate . Based on this information, Li et al. estimated the virus had likely been in existence since late 2019 . Guan et al. examined over 1000 patients throughout mainland China and found the average patient to be middle-aged, with men more likely to be impacted. Their study indicated 6.1% of patients met the composite endpoint, described as requiring intensive care, the use of mechanical ventilation, and death. Direct contact with residents from the originating sector of Wuhan was observed in 72.3% of cases . Guan et al. described a shorter median incubation period of 4 days. This medical core contains a significant amount of research that examined symptoms and strategies for transmission mitigation. In an early response to the viral spread, China banned travel both from and to Wuhan in January 2020 . Tian et al. found that cities that implemented control measures early exhibited fewer cases than cities that delayed restrictions. Examples of the restrictions found to be effective included the suspension of public transportation and bans on large gatherings. These interventions were considered successful in limiting the spread of COVID-19, despite the high mobility of the virus. Real-time travel data and collections of case histories showed the effectiveness of the control measures in reducing virus transmissibility . The effectiveness of the control measures was considered crucial for reducing death and minimizing economic impact . Small transmission chains were observed to spread quickly in countries such as Iran, Italy, and Japan. Anderson et al. considered the spread in multiple other countries inevitable even with the implementation of control measures due to the reproductive rate, at the time of the article yet to be fully known but considered potentially as high as 2.5. Implementation of quarantine, isolation, and social distancing of both infected and potentially infected persons in China are described as having the potential for spread containment if utilized in other countries . These containment measures had been utilized in the 2009 H1N1 influenza outbreak, but implementation had been haphazard . Bajardi et al. examined international air travel in and out of Mexico during the H1N1 epidemic and found travel reduced by around 40%. Bajardi et al. developed models to consider multiple alternative scenarios for the 2009 H1N1, which included an examination of more effective measures and what could occur if less effective measures had been implemented . Modeling and tracking software was developed by multiple countries and universities, considering real-time tracking and identifying potential future spread. The need for realtime surveillance software was identified as the viral outbreak of COVID-19 was observed rapidly moving outward from China to 27 other countries and regions . Johns Hopkins University developed an interactive online COVID-19 tracking platform for real-time public data-sharing of the spread . Chinazzi et al. used a transmission model to anticipate the future global spread of COVID-19, and their findings considered the likelihood of containing international spread by travel limitations. Due to the rapid transmissibility of COVID-19 by the time of the travel ban to and from Wuhan, travel within China had already spread COVID-19 to most of the country. Travel restrictions may have delayed the disease progression by only 3-5 days within China but may have limited transmission associated with international travel . Another noteworthy sub-theme within this core medical cluster examines the economics and policy implications of rationing needs which boomed in the years to follow. As the virus spread, concern grew for the availability of necessary equipment, healthcare providers, patient triaging, and the subsequent economic fallout. The emerging pandemic created concern for shortages of medical equipment and services . In Italy, triaging patients needing treatment was implemented to conserve vital resources. International concerns over hospital bed availability and supplies such as N-95 masks and ventilator shortages were observed, with concerns over how the supply of such resources could be fairly allocated . Panic buying and hoarding behavior was found to be linked to both waves of scarcity as well as individual impulses often associated with fear of going without . Fears mounted over the economic implications of business and school closures, travel restrictions, and ensuring manufacturing, food production, and shipping sectors continued . These micro-economic concerns share significant overlap with macro-economic trends and financial contagion. --- Cluster 2: tourism Travel and tourism created concerns focused on the implications of mobility and transmission, as well as corresponding economic concerns. The tourism and hospitality sectors experienced a harsh shift, despite anticipated growth from economic predictive models . COVID-19 has limited progress toward the United Nations Sustainable Development Goals , and the tourism sector has impacted those already struggling financially. Global greenhouse emissions dropped as COVID-19 impacted travel, but an eventual return to pre-COVID-19 travel will spike these numbers once again above acceptable decarbonization levels. Contact tracing and hospitality technologies such as meal and grocery ordering advanced the ability to harvest data using Information and Communication Technologies , increasing surveillance opportunities . This concern is directly echoed within the sociology sub-cluster but with a different discursive framing. When traveling an inherent risk exists from the potential for additional exposures to the virus, and these exposures may result in a negative outcome . While tourists may consider both real and perceived risks, tourist destinations are susceptible to external and uncontrollable factors. These concerns are varied by scale, economic impacts, predictability, and duration of impact for the tourism industry. Decision-making processes and follow-through are impacted not only by available information but other relevant factors . Elements of the theory of planned behavior involve a consumer's decision to plan for travel, including perceptions, motivation, control, time, and resources. The ability to travel is considered a right or entitlement among many privileged and affluent people . Freedom of movement has been declared a human right under the UN Universal Declaration of Human Rights. Tourists who seek a novelty experience when traveling are more likely to accept higher levels of perceived risks than those who prefer familiarity. Experienced travelers tend to worry less about infectious diseases. The early movement of COVID-19 occurred predominantly among mobile, wealthy Europeans, Americans, and Asians . Travel restrictions limited mobility entitlements; rights that may be taken for granted within privileged groups. Tourism is vulnerable to crises because of the reliance on infrastructure, mobility, and tourists' safety concerns . Hotels should be cognizant that as tourism and travel are on the rise, the required infrastructure to support tourism and the community should rise in tandem. For destinations to be successful after a disaster, consideration should be given to the environment that attracts tourists, the physical structures of the destination, and the safety of staff and guests. The impacts of COVID-19 may transform tourism, and within that transformation, the opportunity exists to recenter tourism towards more responsible travel , meaning a shift away from exploitative practices that harm the local population and toward community well-being when creating a tourist destination. Globalization is likely to have contributed to the ability of infectious diseases to spread more rapidly with tourism directly contributing to the spread and increased exposure risk . In response to crises occurring at tourism destinations, stakeholder groups should be inclusive of local businesses, community members, and others who will be impacted by the crisis, economically, as well as other potential areas of impact. The impact of disasters on tourism has been found to have severe economic consequences even if those destinations are not directly impacted by a specific disaster . For instance, media coverage may influence tourists' decisions about the safety of a destination, which can lead to negative consequences for developing nations that are dependent on tourism for their economies. Some nations, such as The Gambia, did not experience an Ebola outbreak, but spillover generalizations and lack of knowledge of African geography likely led to tourist cancellations. While some nations will transform tourism towards a more sustainable model in response to the impacts of COVID-19, others may continue short-sighted nationalistic policies that do not consider global impacts . A global approach, with a focus on community-based sustainability, is suggested as the means to sustain tourism . --- Cluster 3: psychological impacts Quarantine, isolation, and infection resulted in numerous psychological impacts and stressors such as anger, confusion, boredom, fear, and post-traumatic stress . When pandemic quarantine or isolation is needed, the period should not be longer than necessary, people should be well-informed, and supplies should be made available. Moreover, educating people that they are helping society through compliance may alleviate some psychological symptoms . Galea et al. describe social distancing and behavioral response patterns as having both short-and long-term consequences . A review of epidemics and natural disasters found depression, substance use disorder, domestic violence, and post-traumatic stress disorder rose after those incidents. These distress patterns were found to be both immediate and persistent over long periods . Concerns about isolation, mental health, and well-being ranked higher than the concern of becoming infected with COVID-19 . Current pandemic information and the use of precautionary measures such as hand washing, and masking reduced negative impacts such as anxiety and depression . Suggestions that China may have handled psychological impacts poorly in the early months were met with recommendations to look to the United States and the United Kingdom for crisis intervention techniques for emergencies . Chinese college students were surveyed using the Generalized Anxiety Disorder Scale, or GAD-7 . About one-quarter of surveyed respondents were suffering from anxiety associated with the pandemic. Protective factors included residing in urban areas, living with parents, and economic stability . Having family members or friends living with COVID-19 was a risk factor for increased anxiety for college students. A survey of adults found that after 1 month of confinement, variables such as the ability to continue work, the severity of the outbreak in their community, and everyone's pre-existing health contributed to their mental health outcomes ). Moreover, those who had been physically active before the confinement tended to experience a higher risk for negative mental health outcomes from quarantine restrictions ). A study conducted during the severe acute respiratory syndrome outbreak considered perceptions of threat, vulnerability, and self-efficacy among three Asian and five European countries . 'Country of residence' was consistently shown to have a strong correlation to the level of perceived threat. Europeans had higher levels of perceived severity, and Asians had higher levels of perceived vulnerability; however, Asians also had higher levels of self-efficacy . An Iranian study developed a scale to understand the fear of COVID-19 . The Fear of COVID-19 Scale considered fear as an exacerbated factor for hypochondriasis and anxiety, contributing to mortality and morbidity . FCV-19 included the respondent's level of perceived germ aversion and disease susceptibility, finding similar results across gender and age . Higher levels of fear of contracting COVID-19 corresponded with an increased risk of depression and anxiety. Cluster 4: media Language, framing, and metaphors may drive the public perception of disease spread and epidemics . A critical disease discourse was not found within media portrayals of the severe acute respiratory syndrome . SARS was described as a singular killer in contrast to an army. While another pandemic was considered inevitable, the time, place, and symptoms are not known until the disease begins to spread. A lack of unified public health communication systems during the onset of COVID-19 led to public uncertainty about which source to turn to in search of critical information for key pandemic messaging . The presentation or framing of an element, such as a media story, may influence how the receiver perceives the concept . When news is initially presented in a certain frame, conflicting news may be rejected as lacking credibility due to the pre-existing frame. Excessive media coverage can lead to stress responses that have the potential to cause adverse health impacts. These impacts can then lead to help-seeking behaviors that become an extra burden on already taxed medical providers . Effective communication may alleviate some stressors on both people and secondary medical resources. During the COVID-19 pandemic, the need for information led people to reconnect with 'legacy media' forms such as television news . The return to these media outlets gives them a heightened ability to influence the public while also reducing some of the inequalities in access to news. The news media is critical as the source of understanding a pandemic for the public, and "fake news" undermined important COVID-19 information. The expansion of newspaper media during the nineteenth century followed by radio and television in the twentieth century may have weakened the perceived legitimacy of its ability to act as a check on power . Concerns emerged that important debates would be reduced to sound bites and echo chambers of opinions driven by corporations. Additionally, in the twentieth century, concern grew of a lack of information about how fake news impacts individuals and society. New safeguards are needed against those who use fake news with malicious intent . The spread of false news through social media may occur more rapidly through human sharing than by robot sharing . Humans spread information they find novel such as stories that elicit disgust and surprise. Bots spread information regardless of emotional content or validity at equal rates. During the 2009 H1N1 pandemic, also known as the 'swine flu' epidemic, a Twitter content analysis for keywords related to the outbreak was conducted . These data showed an increase of almost 40% in posts using the World Health Organization terminology of H1N1. News and media sources were shared more often than government or health agencies, whose tweets were shared only 1.5% of the time. Just two decades later, WHO director-General Tedro Adhanom Ghebreyesus suggested there are two simultaneous epidemics, the pandemic and the 'infodemic' . Thus, an information platform was launched to relay information from the WHO Information Network for Epidemics in the form of targeted messages to at-risk groups . --- Cluster 5: behavioral trends Van Bavel et al. discuss the importance of bringing behavioral and social sciences into policy discussions that involve public health and medicine. In considering the public response to the pandemic, behaviors, reactions, and threats to compliance due to social and cultural influences should be anticipated . Some elements of the media have focused on perceived connections between China and COVID-19, increasing discrimination against those of Chinese descent living outside of China . Wen et al. examine the impact of biased media coverage on the mental health of Chinese persons and those of Chinese heritage and the impact on tourism and tourist behaviors finding misleading media has likely stoked discrimination against Chinese persons. Authors writing on COVID-19 behaviors and reactions turned to earlier researchers who had written on behavioral reactions to fear responses, such as wearing masks or hand washing during an epidemic. The concept of fear appeal, in which fear arousal is promoted to elicit a specific response, can be promoted as a behavior change method . Persuasive communication techniques may include the event's severity, the probability of an event occurring, and protective action effectiveness . The example provided by Rogers refers to the negative consequences of cigarette smoking and how fear appeal and smoking aversion techniques may inhibit the desire for cigarettes. During the H1N1 Swine flu pandemic, Bish and Michie examined previous research on attitudinal determinants for protective behaviors . The types of protective behaviors included avoidance, prevention, and illness management . Demographic differences were found in those who adopted protective behaviors. Characteristics of those who were more likely to utilize protective behaviors included people who are older, female, with higher levels of educational attainment, non-white, concerned about current health conditions and those who trusted authority figures. Another study conducted during the Swine flu outbreak considered behavioral changes as well. A phone survey asked if survey participants had made changes in response to the swine flu . Those who felt the swine flu threat severity had been exaggerated were the least likely to comply with avoidance behaviors such as handwashing. People most likely to adopt flu avoidance behaviors included those concerned about the severity of the outbreak, those who trusted authority figures, those that felt the adoption of control measures could reduce risks, and minorities . A survey designed to examine compliance with protective behaviors such as handwashing was conducted 48 h after the United Kingdom advised residents to cease non-essential travel and contact with others . Most respondents indicated taking at least one recommended protective measure such as handwashing; about half avoided crowded places . Older adults were found to be more compliant with social distancing measures. Those in low-income brackets were least likely to have the ability to work from home. The article recommended governments consider the impacts on those who would suffer the most economic impact when creating policies . --- Cluster 6: sociology The sociology of COVID-19 offers a diverse blend of social topics. The cluster exhibits numerous references to top news articles suggesting a relative willingness to engage with recent current events. Many social scholars published work in public venues such as The Guardian, The Economist, The New York Times, and Reuters among others introducing sociological understandings into current public discourse. This cluster exhibits an unusually high emphasis on social theories ranging from individual coping strategies to suprastructural discussions of global politics. Within this cluster, there exists several sub-pockets building on many canonical sociological works including numerous references to the works of Michel Foucault. Contemporary offshoots building on Foucault are prominent among this cluster including Mbembe's exploration of essential workers struggling with necropolitics or how politics dictate how some people may live and how others die . A relatable offshoot includes Zuboff et al.'s discussion of surveillance capitalism . In this same vein, The Shock Doctrine Klein and more recent Screen New Deal both by Naomi Klein, highlight the way the pandemic constitutes a significant economic shock enabling further incursion of surveillance technologies into personal spaces . The issue of racial inequality and the differential impacts of COVID-19 emerged from this cluster. Crenshaw's work on intersectionality as an analytical framework is widely cited by many COVID-19 studies. Drawing from racial geography, Massey and Denton's American Apartheid is frequently invoked to discuss the impacts of segregation on differential rates of spread and responses throughout the Black community. A relatively diverse Marxist camp was also found. From Harvey's analysis of the geographic spiraling of the virus, investment floods, and contradictions of a capitalist crash to Thomas Piketty's strict formulaic economic assessment of grossly exacerbated wealth accumulation , these materialist works are mixed-in among the forefront of this cluster. Žižek's Pandemic! and Pandemic 2! are also prominently referenced. Both works touch on many of the topics but with a psychoanalytic emphasis and critique of capitalist ideology. Taken together, these popular references to Marx prioritize different materialist interpretations all centered around the concept of class. Risk, and efforts to manage it, is a central topics commonly discussed within the sociology subcluster. Risk is the seventh most popular keyword in the sample. More specifically, Giddens's and Beck's and Beck et al. critiques of risk and reflexive modernity have been frequently invoked to describe the unfolding of the pandemic. Closing out this sub-group rooted in contemporary theory is Alexander et al. theory of cultural trauma as a basis for collective identity. Put differently for many groups throughout the world, COVID-19 constituted an event so horrendous that its memory could fundamentally alter group consciousness and underlying identity in the decades to come. --- Cluster 7: criminology Criminology exhibits a dense off-shoot closely tied to sociology, medical, and media studies. The impact of social distancing on crime exhibits several emerging directions of research. Violent crime is the arguable key focus spinning off several special issues in leading criminology journals examining the effects of the COVID-19 pandemic on crime . Quarantine domestic violence is also a widely researched and emerging hot topic with a diverse array of emergent findings . Simultaneously, the issue of COVID-19 super-spreader events in prisons is an equally common focal area . Several pivotal studies including Akiyama et al. pushed a prison policy angle in a proactive direction seeking to flatten the curve in prisons via effective policy and decriminalization early on in the pandemic . --- Cluster 8: macro-economics Early economic innovators applied mathematics to the epidemiological model of disease spread, considering how a disease is brought under control by "naturally" running its course in an individual, across a community, and in terms of overall mortality . When making projections about the impacts of epidemics the literature suggests that economists should consider using the simple SIR disease model utilized in public health . As the COVID-19 epidemic has disrupted economies and spread across the globe, scenarios have been developed anticipating that even a wellconstrained viral outbreak could have significant global impacts on economies . Increased investment in public health has been recommended, with special concern for areas with low economic development and large population densities. A study in Europe found that lockdowns and school closures reduced the reproductive rate of SARS-CoV-2 below 1, which is considered a successful intervention to reduce disease transmission . In response to the pandemic, consumers reduced their work and consumption patterns to avoid infection with COVID-19 . While the decision to stay at home likely saved lives, the severity of the resulting recession was impacted negatively by the labor shortages. A multi-sector economy experiencing an incomplete market may be vulnerable to Keynesian supply shocks, as jobs are lost, and capital does not exist to prevent shock changes . Fiscal stimulus may not be enough to mute the changes if sectors are not open for spending. Economic policies intended to control viruses may not be considered cost-effective; however, unchecked globalization and the corresponding economic practices contribute to the rates of viral transmissions . Disease diffusion studies correlating influenza or other outbreaks with French transportation strikes and school closures evaluate whether disease outbreak-related costs should be considered in public health responses depending on reproduction rates and the population impacted. Variations across global governmental policy responses and their degree of effectiveness were tracked, and composite indices were compiled to understand the evolution of responses over the course of disease transmission . The working paper intends to follow policies and interventions and update results to assist in understanding the pandemic's impacts. Reductions in global CO 2 occurred due to the COVID-19 lockdown, with peak reductions as low as -26% for some countries, and an average daily decrease of -17% . Conversely, a roll back green policies as a method of reducing the economic downturn quickly led CO 2 reductions to rebound beyond their pre-COVID-19 levels . It is anticipated that COVID-19 will have short-term impacts on environmental policies whereas stimulus packages, investments in green policies, and globalization may have long-term impacts on climate . Potential impacts discussed include leaving debt and environmental concerns for future generations to solve. --- Cluster 9: transnational studies Early studies on economics and viral spreads were applied to COVID-19 to understand how the pandemic might impact the economy, tourism, and the viral spread Keogh-Brown et al. used an economics model to examine the impact of an influenza epidemic scenario . Their United Kingdom model assumes the spending patterns of the uninfected would not be heavily impacted; GDP was anticipated to drop by an estimated 1.25% . The model considers the economics of school closures and subsequent work absenteeism, as parents dealt with closures, as an unknown variable. An International Monetary Fund estimate anticipated the economic impact of COVID-19 to be "moderate", but not debilitating . Nuno Fernandes' concern with the IMF findings is that comparisons with previous similar events lack an understanding of the current state of supply and demand, increased service sector job vulnerability as tourism shut down, and comparisons with SARS do not consider China's powerful role in today's global economy. The economic impacts to Mexico from the H1N1 swine flu pandemic were related not only to the loss of tourism but also to public concerns that the outbreak originated from a pork processing plant in Veracruz, Mexico . While concerns about pork from Veracruz were not confirmed; Mexican tourism dropped from worry about the spread of swine flu, and multiple countries banned Mexican pork products. The article erringly suggested that tourism would be an unlikely vector for disease spread insisting it would create unnecessary and negative tourism industry impacts. However, the 2015 outbreak of Middle East Respiratory Syndrome in the Republic of Korea resulted in significant losses to the service and transportation sectors from a decline in international tourism . The travel and activity patterns of people are impacted by the pandemic and social distancing . There is less demand for public transport systems as people stay home. Well-being is impacted as people stay indoors more. Public policymakers need to keep these factors in mind as pandemic policies are implemented . Browne et al. also found the role of transportation in the spread of respiratory virus found air travel, cruises, and ground transportation as likely transmission methods for influenza outbreaks. Air transmission was found to be a likely vector for respiratory illness. A sub-theme within this cluster focused on infectious disease research and the professional dissemination of information to the public and corresponding challenges. Public health systems exist to control pandemics; however, implementation was lacking the best public health practice despite a wealth of existing knowledge for viral control. Using a metapopulation analysis, Li et al. ) determined 86% of COVID-19 infections were undocumented before the Wuhan travel shutdown, these undocumented cases were as contagious as the known cases, and they contributed to the spread of the disease despite containment efforts. While the nature and interventions of viral transmissions are well understood, a constant battle occurs between how infectious diseases adapt and the interventions required to control these adaptations . The means of protection against potential infections are well-known-handwashing, disinfection, and vaccination. Pandemic threats are rising due to increased population densities, zoonotic transmissions, climate change, and regional conflicts . The authors go on to advocate for a self-governing Global Technical Council on Infectious Disease Threats to consider these threats and transnational mitigation techniques . --- Cluster 10: financial contagion The initial effect of COVID-19 on Chinese financial markets diminished earnings by one quarter in just one month . While China stabilized, the pandemic and the resulting economic shocks spread to Europe and the United States; those markets were heavily impacted, and even commodities and supply chains previously considered stable were found to be fragile. The United States' decision to implement zero percent interest rates and quantitative easing during the pandemic may have exacerbated uneasy global markets ). As an example, the 2003 outbreak of severe acute respiratory syndrome in Taiwan caused significant economic damage, especially to the tourism sector . Examination of hotel stock prices showed immediate impacts, which could be useful in predicting economic outcomes in future pandemics or disease outbreaks. Another economic shock of COVID-19 was oil pricing . As COVID-19 cases grew and oil prices dropped in tandem, the news reports on these events were a further blow to oil pricing. Research showed that any negative news is an important predictor of oil pricing, while positive news has a less significant effect. The onset of the most economically volatile periods for the oil market began in April 2020, when crude oil for the first time recorded negative prices . Bans on travel and lockdowns decreased oil consumption, while pandemic fears had a negative influence on the economy more broadly. The two issues caused a downward economic spiral with oil prices continuing to fall in response to COVID-19 news of increasing cases and deaths. Haroon and Rizvi considered several indices, combining the Dow Jones with fear surveys, and media measures concluding media sources may create a heightened panic level that corresponds with the volatility of financial markets. Markets crashed globally in response to COVID-19 news, which could be identified as a form of "financial contagion", meaning that negative markets 'infect' other markets . This media-driven panic may be more strongly associated with market volatility than an outbreak in the location experiencing volatility. The usual political divisiveness observed in the United States may be mitigated slightly during times of stress including disasters . Apergis and Apergis argued that political leaders may become less focused on partisan gains during times of economic instability and epidemics. To further understand how large-scale shocks impact socioeconomics should be conducted based on previous similar historical events . --- Limitations The primary limitation of our study is that we cannot entirely appreciate the breadth of work in the area. We find incredible variation among the 3327 articles published in 2020 . This diversity was even more pronounced among the samples' 107,396 shared references dating back as early as 1927. This research is tasked with synthesizing a massive amount of research. An extensive volume of books would likely be required to discuss each article in this rapidly emerging field. Instead, we elected to synthesize the pandemic sub-themes using several network graphics and a broad summary. A technical issue is the source of our second limitation. Specifically, we chose to limit our search to exclude non-peer-reviewed sources from its search. To compensate for this issue, we include these works in the secondary co-citation analysis to better emphasize emergent and shared classical works from across the social sciences. This enlarged co-citation sample enabled us to look at pre-pandemic ideas and historical examples that were integrated into contemporary thinking. A third limitation is that studies published earlier in the pandemic tended to receive more citations . This 'hot topic' effect introduced some bias into the ranking bibliometric rankings. With this temporal bias in mind, this study sought to reference across the 2020 sample window. --- Discussion and conclusion Each discipline engaged the core works on the topic of COVID-19 but each with their respective disciplinary traditions and corresponding trajectories. Within the citation network, we observe ten sub-clusters centered around a medical core containing numerous extensively referenced papers in high-impact publications such as The Lancet and Science. Considerable interdisciplinary overlap was found during the initial phase of pandemic research. Many crucial keywords including mortality, epidemic, quarantine, and telemedicine became prominent thanks to the central medical core. The dense tourism and travel research cluster alternatively examined issues of decreased tourism, risk perception, tracking surveillance, border closures, and transmission modeling. This cluster is loosely tied to a psychological impact cluster examining quarantine, isolation, confusion, boredom, fear, and PTSD. This overlapped directly with media studies examining disease discourse and infodemic challenges in communicating crucial information to high-risk groups. This cluster overlaps significantly with the central and interdisciplinary behavioral trends cluster which examines perceptions and determinants of protective behaviors. These issues segue into the diverse sociology cluster which generally analyzed how inequality exacerbated the effects of covid and cultural trauma. Branching off from these clusters, we observe criminology's early examination of differential shifts in criminal trends. Coming full circle, macro-economic research examines lockdowns, disease diffusion, and corresponding market impacts. We observe a historical transnational cluster pointing to different historical events which provided a range of predictive forecasts. Finally, we observe the isolated studies of financial contagion studies crossing national borders and corresponding shocks across different economic sectors. This study examines the crucial period of 2020 and the ideas that characterized the nascent stages of social science research during the arrival of the pandemic. In doing so, we discover a central medical core with nine surrounding clusters each with a unique disciplinary character. Looking ahead, it is apparent that several pandemic-related topics emerged quite rapidly and shifted in the years that followed . Topics such as geographic and racial impact disparities, demographics and migratory patterns, policy perceptions and misinformation spread, housing-related studies involving cohabitation, evictions, homelessness, and the housing boom. Additionally, the overlap between pandemic studies and other issues such as political discontent and collective behavior during this time demands further investigation. As the COVID-19 pandemic continues into another year with global cases and death toll climbing into the millions, analysis of early research publications grants insight into the social scientific frameworks and the ideas that represented the time. These frameworks continue to evolve bridging the identified gaps in knowledge and giving way to new areas of research. One such area will undoubtedly explore how future generations will be affected by these individual, local, structural, and cultural changes.

Research on the COVID-19 pandemic has produced an incredible volume of social science research. To explore the initial areas of COVID-19 scholarship, the following study uses bibliometric co-citation network analysis on data from Clarivate's Web of Science database to analyze 3327 peer-reviewed studies published during the first year of the pandemic and their 107,396 shared references. Findings indicate nine distinct disciplinary research clusters centered around a single medical core of COVID-19 pandemic research. Topics ranging from tourism collapse, fear scales, financial contagion, health surveillance, shifts in crime rates, quarantine psychology, and collective trauma among others are found to have emerged in this initial phase of research as covid spread across the world. A corresponding infodemic highlights early communication challenges and a broader need to thwart misinformation. As this body of work continues to grow across the social sciences, key intersections, shared themes, and long-term implications of this historic event are brought into view.

Introduction The association between social status and health outcomes has been documented in extensive literature in Western [1,2] and Chinese societies [3,4]. People with higher socioeconomic status typically enjoy better physical and mental health than those with a lower SES. In addition to traditional measures of social status , subjective social status is a robust predictor of health. People who perceive themselves as having higher status are generally healthier than those who perceive themselves as having lower status [5,6]. Additionally, subjective social status has been frequently found to be more strongly related to health indicators than traditional socioeconomic measures [7,8], perhaps because a person's assessment of their relative standing in society is a more comprehensive measure of SES than conventional measures. Subjective social status may capture the intangible factors of SES [9], account for changing SES over the lifetime [10], and capture relevant psychological processes, such as interpersonal relative deprivation [11]. However, limited studies have examined whether there are sex differences in the associations between subjective social status and health outcomes. Additionally, we know less about how individual perception of rank on the social hierarchy may interact with area-level SES in predicting health outcomes. Subjective social status is particularly a strong predictor of health in older adults, as shown in a recent meta-analysis of society and community ladders on health [6]. It may be because that older people, unlike their younger counterparts, are more aware of their social status, and their perceived social status can reflect the cumulative impact of SES throughout their lifetime [3]. Thus, the perceived social status may influence older adults' lives and future prospects and needs to be considered when measuring SES in older populations. The MacArthur Scale of Subjective Social Status is a widely used measure of subjective social status [12]. Prior studies have found that both the society and community ladders are significantly associated with physical health, mental health, and self-rated health among older people in Hong Kong [9,13]. The effect of subjective social status on health may vary between men and women. For example, Adler et al. found that the inverse association between subjective social status and depressive symptoms was stronger among African American women than African American men [14]. Similarly, a recent study in South Africa also revealed that the contribution of subjective social status to inequalities in depressive symptoms was higher for women than men [15]. However, the two studies only considered the society ladder. One study of 300 married couples in the US found that both society and community ladders predicted depressive symptoms for men, but only the community ladder was predictive for depressive symptoms in women. To date, the sex-specific analysis of subjective status and its relationship with health is limited to non-Chinese societies [12,[16][17][18]. Little data are available on sex differences in the association between subjective social status and health outcomes in Chinese populations. Additionally, emerging literature has suggested that regional deprivation is an important determinant for health inequality [19] and an independent indicator of individuals' health beyond the effect of individual-level SES [20]. Disadvantaged regions may expose their residents to more life stressors and lack material and social resources for them to cope with these stressors [21]. However, findings on the relationship between area deprivation and health outcomes among older people are inconsistent. While some studies found that the association between area deprivation and quality of life may be stronger in old age when people spend more time at home and are more dependent on community-based resources such as community support and health care [22][23][24], other studies found no significant relationship between area-level deprivation and mental well-being among older people [25]. Moreover, area deprivation may condition the association between individuallevel SES on health, but the evidence so far is mixed. Some scholars argued that living in deprived areas may reinforce the association between individual socioeconomic position and health [26], consistent with the double jeopardy hypothesis [27]. In other words, people with low social status may be worse off if they reside in disadvantaged areas than living in better-off areas. In contrast, the relative deprivation hypothesis posits that the health of lower SES individuals may be worse if they live in higher SES areas than if they reside in lower SES areas because low SES individuals living in high SES areas may experience more psychosocial stress resulting from upward social comparisons, greater isolation, and difficulty in social integration [28,29]. To our knowledge, no studies have examined how subjective social status and its interaction with area deprivation may affect the health of men and women differently in Chinese societies. The goals of this study were to assess the effect of subjective social status and area-level deprivation on physical and mental health among older adults, to investigate the interactive effect between subjective social status and area deprivation on health, and to examine the gender differences in the main and interactive effects of subjective social status and area deprivation on health status. The health outcomes in the models included mental health , physical health , and health-related quality of life that was measured with the Short Form-2 . There is extensive literature documenting gender differences in health outcomes among older adults in terms of the prevalence of chronic diseases, geriatric syndromes, the aging process itself, and adoption of healthy lifestyles [30][31][32][33]. Based on theoretical propositions and findings of existing studies, we developed the following hypotheses. Hypothesis 1. Subjective social status would positively affect physical and mental health among older people. Hypothesis 2. Area-level social deprivation would negatively affect physical and mental health among older adults. As for the potential sex difference in the effect of subjective social status, we expected a more significant impact of subjective status on women's health than men's. With women typically being more sensitive to affiliation concerns [34,35], women with a lower perceived social status may have limited social networks and support and may be more vulnerable to mental and physical health issues. Thus, we hypothesized the following: Hypothesis 3. The relationship between subjective social status and health outcomes may be stronger among women. As for the interactive effect between subjective social status and area-level deprivation, we developed the following hypotheses based on the double-jeopardy or relative deprivation hypotheses. --- Hypothesis 4a. Participants with lower subjective social status may experience worse health outcomes if they live in areas with a higher level of social deprivation . --- Hypothesis 4b. Participants with lower subjective social status may experience worse health outcomes if they live in areas with a lower level of social deprivation . The findings of this research will contribute to a more nuanced understanding of health disparities among older people by revealing how social differentiation at the individual and area levels is translated into health disparities. --- Materials and Methods --- Participants and Procedures Participants for this study came from the MrOs and MsOs studies, the first large-scale prospective studies on bone health that have followed a cohort of 4000 Chinese men and women aged 65 years and above in Hong Kong since 2001. The method of recruitment consisted of notices placed in housing estates and community centers all over Hong Kong. Stratified sampling was adopted in the study in order to achieve approximately 33% of subjects in each of the three age groups: 65-69, 70-74, and ≥75 years. Those who were unable to walk independently, had a bilateral hip replacement, or were not competent to give informed consent were excluded. Further details about MrOs are published elsewhere [36]. Participants were interviewed at the study site at the Prince of Wales Hospital at baseline, year 2, year 4, and year 14 by trained interviewers. The study was approved by the Clinical Research Ethics Committee of the Chinese University of Hong Kong, which required informed consent to be obtained. All participants signed the study consent form. --- Measurements Information regarding age, sex, marital status, educational level, maximum lifetime income, subjective social status, depressive symptoms, health-related quality of life, and grip strength was obtained as part of a questionnaire administered by trained interviewers. An area deprivation index was also calculated for 18 districts in HK. --- Subjective Social Status Subjective social status was assessed using the MacArthur Scale of subjective social status scale [12]. Participants were asked to place a mark on a picture of an upright ladder with 10 rungs, with the lowest rung indicating the most undesirable and the highest rung indicating the most desirable state with respect to their standing in their self-defined community . Participants were also asked to rate themselves by placing a mark on a picture of another ladder, the top rung representing people who have the most money, the most education, and the most respected jobs, and the bottom rung representing people at the other extreme . --- Area-Level Social Deprivation Index The area-level Social Deprivation Index is a multi-dimensional measure to quantify the aggregate level of social disadvantages of people residing in a given district. Comparison of health outcomes by the SDI is useful in health inequality monitoring, healthcare planning and resource allocation, and design for community interventions. To measure the area-level social deprivation index [38], socioeconomic characteristics of 18 District Council districts in Hong Kong were obtained from the 2016 Hong Kong population by-census [39]. The six socioeconomic domains of SDI included no education ; low income ; low occupation ; divorced population ; non-nuclear family composition ; and family size of two persons . The six indicators were chosen because previous studies have confirmed that no schooling , low income , non-managerial position , divorced/separated , nuclear family , two-person household were significantly associated with various health outcomes among Hong Kong residents [38]. A simple summation of the proportions of these six socioeconomic domains was used to estimate the SDI score for each District Council district. We then dichotomized SDI into low and high levels of deprivation. Further details on the construction of SDI are reported elsewhere [38]. --- Outcomes Depressive symptoms were assessed with the 15-item Geriatric Depression Scale [40]. A score of 5 was suggested as the cut-off point to screen for depressive disorders [41]. Health-related quality of life was measured with the Short Form-2 , which includes physical and mental domains [42]. Higher scores on the SF-12 indicate a better health-related quality of life in both domains. Grip strength was measured using a dynamometer . Two readings were taken from each side, and the maximum value of the right/left was used for analysis. --- Analytical Strategy All the analyses were performed using Stata 16.0 . Descriptive statistics were used to characterize the study population, and t/chisquare tests were performed to assess the potential sex differences in variables. A series of regression models were used to examine the association between perceived rank in the society and community ladder and area-level deprivation in mental and physical health. We fit logistic regression for the binary outcome and ordinary least squares regression models for continuous outcomes . We first assessed the independent effect of two ladders and area deprivation on mental and physical health after controlling for demographic backgrounds and objective SES measures. We then computed two-way interaction terms between sex with society ladder, community ladder, and area deprivation to examine whether the effect of subjective social status and area-level deprivation on health differed between men and women. Next, we computed the two-way interactions between two ladders and area deprivation to investigate the potential interactive effect between subjective social status and area deprivation on health outcomes. Such analyses were repeated for the subsamples of men and women. Variance inflation factors of the independent variables were estimated to check whether multicollinearity exists in the models. All the VIFs are below 2, suggesting that multicollinearity is not a significant concern. All statistical tests were two-tailed with a significance level of p < 0.05, except for the interaction analyses where a slightly looser p-value cut-off was adopted as analyses with interaction terms tend to have a lower statistical power [43]. --- Results --- Background Characteristics Table 1 presents descriptive statistics and t/chi-square tests comparing old Chinese men and women. There were moderately more men than women . About one-third of participants were in each of the three age groups: 65-69 , 70-74 , and 75 or older . There was no significant difference in the distribution of age groups between men and women. About three-fourths of participants were married/cohabited , and more than one-fifth were widowed . Women were significantly more likely than men to experience widowhood . --- Sex Differences in Subjective Social Status and Area-Level Deprivation Men reported significantly higher SES in terms of education and maximum lifetime income. While four out of ten men had secondary or tertiary education, less than 20% of women had such an education level. More than a quarter of men had a maximum lifetime income over HKD 15000, more than seven times that income level among women . Additionally, more women reported a high level of area deprivation than men . While women had lower education and lower income and tended to live in areas with higher deprivation, they reported higher perceived rank on both the society ladder and community ladder than men. Such results indicated a discrepancy between objective measures of SES and subjective social status. --- Sex Differences in Health Outcomes As shown in Table 1, men had better physical performance measured by grip strength and reported higher health-related quality of life in both physical and mental domains. There was no significant sex difference in depression. Our results showed a higher prevalence of depression among women than men . However, the sex difference in depression was not statistically significant. Several studies using self-report data have documented an inverted U-shaped function for the sex difference in the initial diagnosis of depression throughout the lifespan, with the sex difference in depression emerging between the ages of 11 and 15, increasing into adulthood, and becoming smaller and perhaps even disappeared altogether in older adults [44,45]. Given our study included subjects aged 65 and above, the sex difference in depression might not be discernible. --- Associations between Subjective Social Status, Area Deprivation, and Health Table 2 shows the main effect of two social ladders and area deprivation on each of the four dependent variables among the full sample after adjusting for sociodemographic variables and objective measures of SES . Higher perceived rank on the society ladder and community ladder were associated with lower depression and higher health-related quality of life in the mental domain and physical domain . Only perceived rank on the community ladder was positively associated with physical health among the older people . Unexpectedly, the area-level social deprivation index was not associated with any of the four health outcomes. In addition, some measures of objective socioeconomic status were significantly associated with health outcomes among older people. For example, participants with university education or above were less likely to experience depression and had higher health-related quality of life in the mental domain than those with no formal education. Participants with a maximum lifetime income of HKD 15,000 to HKD 29,999 and HKD 30,000 or over tended to have higher grip strength than those with HKD 15000 or below. ORa = adjusted odds ratio; * p < 0.05, ** p < 0.01, and *** p < 0.001. --- Sex Differences in the Associations between Subjective Social Status, Area Deprivation, and Health Table 3 shows the interactive effect between sex and two social ladders and area deprivation index on health outcomes among Chinese older people. There was only one significant interaction, that is, between sex and community ladder on depression , which suggested that the negative association between community ladder and depression was stronger among women. The significant interactive effect was graphically demonstrated in Figure 1. --- Interaction between Subjective Social Status and Area Deprivation Table 4 presents the results of four health outcomes on the interactive effects between subjective social status and area-level social deprivation. Models 1a to 4a show the results among the full sample, while Models 1b to 4b and Models 1c to 4c show the results among men and women, respectively. Among the full sample, no significant interaction existed between subjective social status and area-level social deprivation. However, subgroup analysis revealed that the interaction between community ladder and area-level SDI was significant among women , but not among men. The results suggested that for women, the negative association between Additionally, the interaction between perceived status in the community and area-level social deprivation was significant for grip strength among women . The simple slope analysis revealed that perceived status in the community was only positively associated with grip strength among women living in districts with lower social deprivation . --- Discussion This study was among the first to consider the unique impact of subjective social status and area-level social deprivation on physical and mental health among old Chinese people and the sex differences in these associations. The aim of this paper was three-fold. First, it assessed the main effect of subjective social status and area-level deprivation on physical and mental health among older Chinese in Hong Kong. Our findings reaffirm that subjective social status is an independent indicator of health after adjusting for objective SES measures . Participants who perceived that they were in lower rungs of subjective social status tended to experience more symptoms of depression, have a lower quality of life, and have lower grip strength. Such findings contribute to research on health inequality during later life-course stages when the evidence on the size and patterns of health inequalities in old age is ambiguous [46]. The subjective social status of older people does not only reflect their current living conditions but also their perceptions of their past experiences and future prospects, which is essential to their health. Moreover, our results revealed that the perceived rank on the community ladder seems to be a more important determinant of health among older people than the society ladder. While both ladders are associated with mental health and health-related quality of life among older Chinese, only the perceived rank on the community ladder was associated with their physical health. Prior evidence regarding which ladder matters more for health outcomes has been inconsistent. Some studies have shown a smaller effect of the community ladder on health than the society ladder , whereas other studies revealed that the community ladder associations with health are as large or larger than the society ladder . Given older adults are mostly retired and spend more time in their communities, perceived status in their immediate community may better reflect their relative position and life conditions than status in the larger and less immediate national population. As a result, relative standing in the community may play a more significant role in determining the health status of older people. In contrast, we found that area deprivation level was not a significant correlate of health among older adults in Hong Kong. Such a finding is consistent with past literature showing that the relationship between individual-level SES and health seems to be more pronounced than small area deprivation [21]. Hong Kong does not have the equivalent of area deprivation as in other countries, likely because public and private buildings are quite often next to each other. It may also be due to a relatively narrow range and a low average level of area deprivation in our sample. Additionally, some scholars argued that how individuals feel about the physical and social environment where they live may be more strongly associated with their mental health than objective measures of area deprivation. Researchers may conduct further studies to explore how perceptions of deprivation affect residents' health and well-being. Second, we assessed the interactive effect between subjective social status and area deprivation on the health of older Chinese. While area-level social deprivation had no significant effect on health, it appeared to moderate the impact of subjective social status on health. Our results showed significant interactions between perceived rank on the community ladder and area deprivation on depression and grip strength among women but not among men. It may be because women are more likely to use health and social services in the district than men. The level of deprivation of the districts thus may moderate the relationship between subjective social status and health among women. Specifically, women living in more deprived districts were more likely to report depression if they perceived a lower status in the community. It seems to be consistent with the double jeopardy argument that low-social status people living in disadvantaged areas may be exposed to more stress and have fewer coping resources. In contrast, more better-off districts seemed to buffer the effect of low perceived status in the community on depression among women. However, perception of status in the community was associated with grip strength more strongly among women living in districts with lower social deprivation. Such findings suggested that the interaction between individuals' perceived community status and area-level deprivation may influence their physical and mental health through somewhat different pathways. Third, this study examined the sex differences in the impact of subjective social status and area deprivation on health. Our results suggested that subjective social status was more strongly associated with health in women than in men, although the mechanism behind this remains unclear. Specifically, older women who reported a lower status in their community tended to experience more depressive symptoms than men perceiving the same level of status in the community. However, the interaction between perceived status in society and sex was not significant. In other words, the association between community-referenced subjective status and health differed by sex, whereas the impact of national-referenced status was similar between the two sexes. The stronger correlation between perceived status in the community and mental health occurs among women as opposed to men concurs with previous research showing that deprivation and relative position predict health through psychosocial and interpersonal pathways [11]. Given that women tend to be more sensitive to affiliation concerns than men, social standing in one's community that involves interpersonal relationships and comparative stress may have a greater impact on women's psychological well-being. In addition, our results indicated that men and women may evaluate their place in the social hierarchy differently. We found that women, on average, reported higher subjective social status in both the community and society ladders, despite their lower mean education and income than men. Prior studies suggested that predictors for subjective social status seem to be different between men and women. Men tend to place more weight on their income when ranking their relative status, while women place more weight on their household's financial standing [52]. The unexpected finding may also be due to women's significant role in the family in Chinese society, regardless of their educational or income level [53]. Furthermore, it is possible that men have a greater ambition to reach higher goals in terms of income and career, leading to fewer men seeing themselves as having reached such a high position [53]. It may be worthwhile to explore potential causes of the sex differences in conceptualizing and assessing social status in the social hierarchy and the varying strengths of subjective social status in relation to health between men and women in future studies. The study has several limitations. First, causal relationships between variables cannot be ascertained since we used cross-sectional data. Additional longitudinal studies are essential to determine the causal relationship between subjective social status and health. Second, self-selection bias may exist because those who agreed to take part in the study might be healthier. Third, our measure of area deprivation was based on the district level, which involves large and potentially diverse areas. Such a choice was restricted by data availability, as most indicators for calculating area deprivation were only available at the district level. Future studies may compute area deprivation using smaller geographic areas, e.g., neighborhoods, which reflect better homogeneity and reduce the risk of ecological fallacy. Moreover, despite the significant sex difference in SDI and the self-rating in the society ladder, the means and standard deviations were very similar in the two groups. Some statistically significant differences may not be clinically/practically significant as it also depends on sample size. The absolute difference and the p-value should be considered together for a better interpretation. Lastly, although we have adjusted for a set of sociodemographic and socioeconomic factors, such as age, sex, marital status, education, and income, there could be other possibly confounding variables, such as genetic factors. However, these variables were not assessed in the survey. Future studies should include more potential confounders. The sex differences in health outcomes among older adults confirm the importance of further work in understanding sex health inequalities. Questions such as whether the basis is entirely biological, cultural, a result of accumulated life course conditions, and the status of women in society, other than education and income, would need to be addressed. A clearer understanding of underlying contributing factors would be important in formulating preventive and community supportive measures. For example, in Hong Kong , women have jobs outside of the home and careers to pursue. They are also regarded as being responsible for the upbringing of children, taking on carer roles for older relatives, and running the household. --- Conclusions In conclusion, our study shows that subjective social status contributes more to health inequalities than area deprivation indicators among older people. While low subjective social status was strongly associated with worse physical and mental health in older adults after adjusting for objective measures of SES, area-level social deprivation was not significantly associated with the health of older people in Hong Kong. Moreover, perceived rank on the community ladder was more closely related to health among older people than was the society ladder, especially for women. Additionally, we found significant sex differences in health outcomes and in the effect of subjective social status on health. The relative status in the community was more influential on the mental health of women than men. Although area-level social deprivation was not significantly associated with the health of older people, it may moderate the effect of subjective social status on health among women. Women with a lower perceived status in the community were more likely to experience depressive symptoms but better grip strength when living in more deprived neighborhoods. These findings suggested that self-report of subjective social status may provide information about which older adults are at high risk for physical and mental problems. It is necessary to raise the perception of social status among older people in order to improve their health and reduce the social gradient in the health of older people, especially among women. Studies have shown that older people's involvement in decision-making leads to improved self-esteem and a stronger sense of accomplishment [54,55], which may increase their subjective social status. Promoting the participation of older people, particularly women, in policy formulation at all levels of society would be helpful in increasing their subjective social status. Moreover, taking on multiple social roles such as grandparenthood, employment, and volunteering can enhance a person's subjective social status [56]. However, given there are cultural differences in role experiences, interventions to raise older people's subjective social status should take into account cultural factors. Support services and networks for older people, as well as carer support, are also vital, particularly in deprived neighborhoods. In addition, raising health literacy about the age-related decline and promoting group activities could benefit older adults' health and well-being in general. --- Data Availability Statement: The data are available upon reasonable request from the corresponding author. --- relative status in the community and depression was strengthened among those living in more deprived districts. The significant interactive effect is graphically demonstrated in Figure 2. Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. ---

This study examined the gender differences in the main and interactive effects of subjective social status and area deprivation on health among older adults in Hong Kong. Data for this study came from the baseline of MrOs and MsOs studies, including 4000 Chinese men and women ≥ 65 in Hong Kong. Subjective social status was assessed using the MacArthur Scale of subjective social status scale. Our results reaffirm that subjective social status is an independent indicator of health after adjusting for objective SES measures (e.g., education and income). Perceived rank on the community ladder was more closely related to health among older people than was the society ladder, particularly for women. Although area-level social deprivation was not significantly associated with the health of older people, it may moderate the effect of subjective social status on health. Women with a lower perceived status in the community were more likely to experience depressive symptoms but better grip strength when living in more deprived neighborhoods. The findings suggested that subjective social status provides important information for the physical and mental health of the older population. Policymakers may implement interventions to enhance the subjective social status of older adults. Given the greater contribution of relative status in the community to the health of women, these policies and interventions should target to improve women's perceived status in the community.

Background Given the extensive research and efforts made to estimate the negative effects of peer-victimization, adolescents' own experiences and understandings have had surprisingly little impact on the definition of bullying. New forms of peervictimization over the internet, reflecting the changing social conditions among youth today may have altered adolescents' and children's views of what behaviors constitute bullying which may challenge previous definitions [1,2]. Youth's judgment of what is considered unacceptable behavior may in some sense be influenced by the exploitation of hurtful and humiliating behavior portrayed on television and on the internet [3][4][5]. A persistent problem in bullying research is to decide where teasing ends and bullying begins [6]. The intent may be even harder to interpret in non-face-to-face situations over the internet. Given that prevalence rates are critical for planning treatment and prevention [7], it is of great importance to have measurement instruments including definitions that correctly reflect peer relations among today's youth and that capture the entire phenomenon of bullying. --- Definition of bullying The most commonly used definitions of bullying are formulated by adults and researchers and state that bullying is intentional, repetitive aggressive behaviors including some sort of power imbalance between those involved [8]. Even if the rationale behind the criteria is to separate harmful behaviors from less harmful behaviors [9], distinctions among different forms of peer-victimization need more empirical foundation [10]. Power imbalance and intention are used as criteria to separate bullying from other forms of aggressive behavior, but have proven hard to operationalize and capture in assessments among children [11][12][13]. While repetition may be easier to operationalize and measure no generally accepted cut point for bullying exists [14,15]. --- Previous research Studies have shown that children rarely include the traditional criteria of intent, repetition and power imbalance when defining bullying [7,[16][17][18][19]. Girls tend to omit the traditional criteria and mention the effect on the target more often compared to boys [18][19][20]. In addition, younger children tend to report physical aggression as bullying more often, while older children more often report verbal aggression and social exclusion as examples of bullying [6,16,21]. Despite the acknowledgement that children may hold a different understanding of bullying compared to those researching the problem, children's own view have had little or no impact on the definition of bullying. Rather, suggestions for solving these inconsistencies include adjusting children's definitions to better coincide with researcher's definitions [18,22,23]. --- The current study Among the studies exploring children's views on bullying, only few have been conducted with the purpose to take children's understandings into account when it comes to defining bullying. In addition, many of the earlier studies did not pick up on the different forms of cyberbullying that have increased exponentially in recent years, which justifies a re-examination and validation for the future. A few studies have specifically focused on children's definitions of cyberbullying [1,24], viewing it as a separate phenomenon compared to traditional forms of bullying. However, research has shown that negative incidents online are also linked to real-world antisocial behaviors [25,26] and it has been suggested that traditional bullying and cyberbullying are rather two sides of the same coin [27,28]. For this reason, the current study did not seek to distinguish between traditional and cyber forms of bullying. For a wider comprehension, the current study will explore adolescents' definitions of bullying using both quantitative questionnaire data and qualitative data from focus group interviews. While quantitative methodology provides opportunities to make comparisons between different groups, the use of qualitative methodology offers possibilities to develop a deeper understanding of the culture and group processes involved in bullying [29]. The aim of the current study is to explore adolescents' definitions of bullying. --- Method --- --- Procedure Two schools were selected to be included in a web-based questionnaire study and a focus group study after agreement from the responsible principals. The schools were chosen because their large size was expected to provide a great variety and selection of students. First, the principals were each told to select and invite three classes to participate in the questionnaire study. A questionnaire was designed and consisted of 24 behavior descriptions depicting varying conditions based on questions of bullying behaviors used in Olweus Bully/Victim Questionnaire [30]. The questions included the specific forms of bullying asked for in OBVQ with alternating use of the three bullying criteria intent, repetition and power imbalance. That is, the questions included none or any of the criteria for bullying . The students were asked to answer whether they considered the behaviors to be bullying or not with a "yes" or "no" answer. The students were also given the opportunity to comment on their responses in an open-ended format. A researcher was on site when the students completed the questionnaire to answer potential questions. For the questionnaire study and the focus group study, the students and parents were given written information in advance and the students were informed that their participation was voluntary, that their answers were anonymous, and that they could terminate their participation at any point. The parents of the students in Grade 7 were asked to sign a written consent for their child's participation in the study. For students in Grade 9, parental consent was not required. Second, all students in Grade 7 and 9 were asked to contact their class teacher if they wanted to participate in a focus group interview. The students who volunteered first were invited to participate. Four same-gender and same-age groups of 4-7 students were arranged and the interviews took place at the students' schools and lasted about an hour. The students were orally informed that they could choose to refrain from talking about any specific topic during the interview and they agreed to recording of the interview in writing. The interviewer [i.e. the first author] conducted the focus group interviews and a research colleague [public health researcher] assisted with follow-up questions and questions of clarification. The question of interest in the focus group interviews were "What do you think bullying is?" and was followed up by questions such as "can you develop what you just said", "what do you mean" and "can you give any examples". Before the focus group interviews ended the students were asked if they had anything to add or if they thought that something important had been left out of the discussion. Each focus group interview was transcribed verbatim. --- Analysis First, different types of behavior that the adolescents considered to be bullying are reported. The differences in perceived bullying behaviors between boys and girls are tested among Grade 7 and Grade 9 students using Chi square statistics. In total, 48 significance tests were performed. Therefore, the Bonferroni adjustment [31] was applied in order to adjust for the influence of multiple significance tests. This implies that the significance level for significant differences between girls and boys in Grade 7 and Grade 9 was set to 0.05/48 = 0.0010. Second, data analysis of the focus group interviews was conducted using qualitative content analysis [32]. Descriptions of what bullying is constituted the unit of analysis. First, the transcription of each focus group interview was read through several times to get a sense of the material. Second, meaning-carrying units which responded to the aim of the study were extracted. Third, the meaningcarrying units were condensed and abstracted into codes. In order to identify similarities and differences the codes were compared and then sorted into sub-categories . As the analysis proceeded, subcategories were subsequently clarified and adjusted and one main category emerged. The initial coding of the transcripts was performed by the first author, and the coded data were examined by the second and third author for emergent sub-categories. The interpretations were compared and discussed until consensus was reached. Comparisons were made with the context in each step of the analysis, to verify the empirical base of the data. The pupils answered in Swedish and the quotations cited were translated into English after the analysis. --- Results Figure 1 report results from the questionnaire study regarding adolescents' perception of what types of behaviors they considered as bullying. Chi square tests were performed to analyze gender and grade differences. Among Grade 9 students, significantly more girls compared to boys reported the following behaviors to be bullying: 'repeatedly write mean things on someone's facebook page or in a chat' , 'sending several mean text messages to the same person' , 'a group of students calling someone mean things' and 'writing mean things to someone online who does not have many friends . Similar results were found among Grade 7 students. While 'hitting someone for fun' was reported as bullying twice as often among boys in Grade 7 compared to girls in Grade 7 , the differences were non-significant. The results revealed that in general, students in Grade 9 more often reported the different behaviors as bullying compared to students in Grade 7. Students in Grade 9 reported behaviors such as social exclusion to be bullying more often compared to students in Grade 7, e.g., 'constantly ignoring someone or not talk to this person' , and 'during recess decide who can participate in games or other activities'. Comments regarding their responses included circumstances under which the adolescents were more likely to consider the behaviors as bullying, namely; the effect on the victim ; if both parties are in on it (e.g., 'posting an embarrassing photo can be okay, if the person is in on it, or if it's posted in a Facebook-group where --- Behavior descriptions The core of bullying similar photos are posted'); repetition ; and intent . One main category and three sub-categories emerged from the analysis of the focus group interviews. The main category was: 'The core of bullying'. --- The core of bullying The core of bullying includes different aspects that the adolescents used to describe what bullying is, and consists of three sub-categories; behavior descriptions, self-interpretation, and something hurtful. --- Behavior descriptions According to the adolescents, bullying behavior included; teasing, giving nasty comments, fussing, oppression or threats with words. Often, comments were used as a way to oppress someone else and consisted of jokes about where you come from, your clothes or the way you look. Boys were perceived as more straightforward in their comments 'they [boys] are frank…they can say 'what an ugly hat you have'. But a girl wouldn't do that, she would whisper it' [Girl, age 13]. It was expressed that bullying behaviors such as hitting, pushing or tackling someone were more common among boys and that they often egg on each other to retaliate and to not back down when they are in arguments. Expectations from adults were also mentioned as a possible explanation for gender differences in bullying behavior; ' Among teachers and grown-ups for example, if it's boys fighting or if it would be some girls fighting physically… I mean, it's not as acceptable. Therefore, it is easier to take it verbally. Instead of…or you will be judged somehow…a thousand times just because you hit someone. Not a lot of girls fight physically…' [Girl, age 15]. Other bullying behaviors mentioned by the adolescents were talking behind someone's back, whisper and looking down on someone, spreading rumors, giving glances, ignoring, avoiding, or ejecting someone from the group. Bullying also included malicious behavior for example posting pictures and mean comments on social media sites such as Facebook and Twitter. Repeated jokes could also turn into bullying within the peer-group. Recurrent events happening over a long time-period were described as essential for defining bullying behaviors 'Because they are joking… but if they repeat it, it automatically becomes bullying I think' [Girl, age 15]. The adolescents pointed out that in contrast to bullying, occasional arguments or fights were solved right away and all involved had an equal share in the argument and in the chance of "winning". Bullying was further described as behaviors involving a group against a single individual or as quarrel between two persons where one had difficulty standing up for himself or herself. --- Self-interpretation It emerged that determining the circumstances for when a behavior should be considered bullying was very much a question of self-interpretation. It was expressed that not being able to interpret the tone of voice or facial expression made it harder to separate jokes from bullying, especially over the internet. The adolescents further mentioned that when someone takes offense and feels bad as a consequence the incident should be considered bullying. Even if it just happens once and even if it was meant as a joke 'I think the line should be drawn when someone stops laughing' [Boy, age 13]. However, this boundary could be different for different people 'I mean, I think it's hard to know what bullying is. That's why I think that you are the only one who can decide whether you've been bullied or not. Because…everyone thinks differently so it's really hard to know' [Girl, age 15]. It emerged that if you knowingly bully someone, some adolescents considered it to be bullying even if the person did not get offended while some adolescents argued that the victim has to be offended for it to be considered bullying. --- Something hurtful The adolescents described bullying as something hurtful that leads to negative health consequences. Verbal bullying in particular leaves scares that lead to low self-esteem and feelings of not being good enough. Being different and standing out could mean that no one wants to be with you and that you sometimes have to stand the bullying in order not to be alone 'If you really get bullied, I mean real bullying than maybe…you shouldn't even be with them. But otherwise you have to walk around alone' [Girl, age 13]. It was expressed that bullying leads to sadness, especially if you are bullied due to reasons you cannot change and if no one backs you up. Bullying taking place both at school and on the internet were seen as particularly hurtful. According to the adolescents, the comfort of hiding behind a computer screen often made bullying incidents online more aggressive and rawer compared to bullying in real life. Despite this, the adolescents meant that incidents online were easier to dismiss 'It's easier to keep your distance on the internet. It's easier to ignore. I don't think that you take it as serious…there are more ways to remove that person from your life…like Facebook, you can just block some-one…you can't do that in real life' [Boy, age 15]. --- Discussion The current study was conducted to explore adolescents' definitions of bullying. The questionnaire results show that older students are generally more inclusive when it comes to determining what types of behaviors constitute bullying compared to younger students. The older students reported more types of behaviors as bullying and more often reported behaviors such as social exclusion as bullying compared to the younger students. The present findings are similar to those of others [21,33,34] who suggest that children's understandings of bullying change with age and younger children more often view aggressive behaviors such as fighting as bullying while older students often have a more differentiated understanding of bullying including non-physical behaviors such as verbal aggression and social exclusion in their perception of bullying behaviors. Regarding gender differences, the boys in the current study reported fewer behaviors as bullying in comparison to the girls and a larger proportion of girls compared to boys considered behaviors on the internet and behaviors involving the peer group as bullying. While some researchers have found no gender differences in understanding and defining bullying behavior [16,21,33], others have shown that females in general tend to define behaviors as bullying more often and to ascribe more severity to different behaviors and boys tend to classify potential conflicts as harmless horseplay [23,35]. This could be a conscious coping strategy among boys and could also be an explanation of why boys are more restricted in their responses of what is considered bullying. Recent research has shown that girls tend to be more engaged in bullying online [36], which could explain why girls interpret aggression online as bullying more often compared to boys. The adolescents in the current study defined and described bullying behavior by including some of traditional criteria included in most definitions of bullying [8], i.e., repetition and power imbalance, while intent was not highly emphasized. There was an agreement among the adolescents that inequality is common in bullying such as one person not being able to defend oneself. Hence, when those involved stood up for themselves it was seen more like common brawl. However, the adolescents found it hard to identify the exact circumstances for when a particular behavior should be considered bullying, especially over the internet. On the one hand, it was described that repeated behaviors, even jokes, was automatically considered bullying. On the other hand, even occasional incidents could be considered bullying if the victimized person felt bad as a consequence, irrespective the intent behind the behavior. The line was drawn when the person stops laughing. The idea behind including intention, repetition and power imbalance in the definition of bullying is to single out the most harmful behaviors [9]. However, there is some disagreement in the bullying literature whether the effect on the victim is implicitly stated in most definitions of bullying [16][17][18]. Although previous studies on children's and adolescents' definition of bullying have indicated that they often describe bullying as negative behaviors with harmful consequences [7,22,37], the results from this study show that adolescents' also focus on the victim's feelings to decide whether a behavior should be defined as bullying. Children's focus on the victim's experience rather than the bully's intent has been reported by a few others [16,17]. In contrast to most research reporting the negative effect on the victim only as a consequence of bullying, the results in the current study show that adolescents also include the negative experience of the victim as a criterion for defining bullying. Since the effect on the victim is judged subjectively, its interpretation may vary greatly due to individual vulnerabilities. Despite this, the established association between distress and peer-victimization may justify an inclusion of the negative effect on the victim as a criterion for bullying [38]. Incidents that could be seen as irrelevant for outsiders may be of major importance for the exposed child [39]. Discrepancies in adults' and children's views become problematic if studies on bullying rely on definitions that children are not able to relate to; e.g. the risk for miscommunication and passive responses by adults may increase [34]. The results from the present study highlight problems with traditional definitions of bullying as harmful incidents that are not in line with the stated criteria risk being omitted. The adolescents in the current study found bullying online to be rawer and more aggressive compared to face-to-face bullying, which is in line with previous research [40,41]. However, they also considered bullying online to be easier to handle in comparison to incidents happening face-toface. Even though mean and hurtful behavior may have become normalized in the online communication among adolescents, public incidents online including picture and video sharing may be more hurtful than non-public incidents online [42]. Recent events including beauty contests and public shaming on picture sharing networking sites, highlighted in the Swedish media [43,44], have increased the understanding of the changing nature of peer relations among today's youth. Incidents taking place on the internet may have a large negative impact on the lives of the victims, regardless of the fulfillment of the traditional bullying criteria. As the adolescents in the current study put it; what you write on the internet does not go away, it remains there. The objective criteria of intention and power imbalance are harder to interpret over the internet while subjective criteria such as the negative effect and consequences of the incident are easier for the victim to relate to. As children's actions are grounded in how they understand and interpret their universe and not in what adults or researchers see as objective reality, students' perception regarding what is bullying could be the critical missing component in the undertaking of understanding and addressing bullying in schools [35,45]. Despite every child's right to express their voice in matters that concerns them [46], children's views have had little or no impact on the definition of bullying. Based on the results in the current study, and in line with suggestions by other researchers [17,19], the estimation of bullying prevalence rates need to take children's perspectives into consideration. --- Methodological considerations The schools in the questionnaire study were not randomly selected which could limit the representativeness and generalizability of the results. Since the principals were asked to make the class selection, it is possible that the selection of participants may be biased. Using a questionnaire asking adolescents which specific behaviors are considered bullying restricts their judgment of bullying to the given examples. Further, in qualitative research the findings are evaluated in terms of trustworthiness [32]. The current study used focus groups to encourage active discussions. The group interaction offered by focus groups encourage people to talk to one another; asking questions, exchanging experiences and commenting on each other's points of view [47]. In the current study, boys and girls were divided into separate groups to make the group a safe place to discuss bullying [48]. Choosing girls and boys from different schools and grade levels also enhanced the credibility of the data as it offered a richer variation and understanding of the phenomenon of bullying. A broad question on bullying was deliberately chosen to capture adolescents view on both traditional bullying and cyberbullying and to not restrict their answers to one or the other. Further, the trustworthiness was enhanced by involving three researchers in the analysis process to reach consensus and by including quotations from the transcribed text, showing similarities within and differences between categories [32]. The peer dynamics and relations between the participants in the focus groups were not known. Previous negative relations between group members could have impacted on the content of discussions. Adolescents' perceptions on bullying were identified but the participants were not asked about their personal experiences with bullying. Hence, we do not know whether the participants had been bullied or had bullied others which could have affected their perceptions of bullying. When group members have no personal experience with the topic, their discussions are based on opinions, which questions the transferability of the results in the current study to other groups and contexts [32,49]. --- Conclusions A good start in the work to prevent bullying is to reach consensus among children and adults concerning what types of behaviors are considered bullying and under what circumstances a behavior should be defined as bullying. All children have the right to express their opinions regarding matters that concerns them and allowing children's voices to be heard are crucial as they may not always be consistent with adults' understandings. The results from this study showed that the adolescents own understanding and definition of bullying didn't just include the traditional criteria of repetition and power imbalance, but also a criterion based on the health consequences of bullying. I.e., a single but hurtful or harmful incident could also be considered bullying irrespective of whether the traditional criteria were fulfilled or not. This adds to the existing literature by showing that adolescents included the victim's experience of hurt and harm as a criterion for defining bullying and not only as consequences of bullying. This may be of special relevance for the identification and classification of bullying incidents on the internet where devastating consequences have been reported from single incidents and the use of the traditional criteria of intent, repetition and power imbalance may not be as relevant as for traditional bullying. The results imply that the traditional criteria included in most definitions of bullying may not fully reflect adolescents understanding and definition of bullying. Assessments of bullying behaviors that ask adolescents to strictly adhere to the traditional definition of bullying might not identify all adolescents experiencing peer victimization and therefore not provide estimates of prevalence rates reflecting adolescents' own understanding of what it means to be bullied. Measuring hurt and harm in children is a complex task and raises concern with appropriate cut points. Future research should consider ways to include hurt and harm in peer-victimization assessments. --- Competing interests The authors declare that they have no competing interests. --- --- Funding The research reported in this article was supported in part by The Swedish National Institute of Public Health and The Swedish Research Council for Health, Working Life and Welfare .

The negative consequences of peer-victimization on children and adolescents are major public health concerns which have been subjected to extensive research. Given all efforts made to analyze and estimate the social and health consequences of peer-victimization, the adolescents' own experiences and understandings have had surprisingly little impact on the definition of bullying. Therefore, the aim of the current study is to explore adolescents' definitions of bullying. Methods: A questionnaire study (n = 128) and four focus group interviews (n = 21) were conducted among students aged 13 and 15. First, gender and age differences were analyzed with respect to what behaviors are considered bullying (questionnaire data). Second, analysis of what bullying is (focus group interviews) was conducted using qualitative content analysis. Results: The adolescents own understanding and definition of bullying didn't just include the traditional criteria of repetition and power imbalance, but also a criterion based on the health consequences of bullying. The results showed that a single but hurtful or harmful incident also could be considered bullying irrespective of whether the traditional criteria were fulfilled or not. Further, girls and older students had a more inclusive view of bullying and reported more types of behaviors as bullying compared to boys and younger students.The results of the current study adds to the existing literature by showing that adolescents consider the victim's experience of hurt and harm as a criterion for defining bullying and not only as consequences of bullying. This may be of special relevance for the identification and classification of bullying incidents on the internet where devastating consequences have been reported from single incidents and the use of the traditional criteria of intent, repetition and power imbalance may not be as relevant as for traditional bullying. It implies that the traditional criteria included in most definitions of bullying may not fully reflect adolescents' understanding and definition of bullying. Assessments of bullying behaviors that ask adolescents to strictly adhere to the traditional definition of bullying might not identify all adolescents experiencing peer victimization and therefore not provide estimates of prevalence rates reflecting adolescents' own understanding of bullying.

INTRODUCTION The Public authority of India and the Hold Bank of India have been putting forth deliberate attempts to advance monetary consideration as one of the significant public targets of the country. A portion of the significant endeavors made over the most recent fifty years incorporate -nationalization of banks, developing of powerful branch organization of planned business banks, co-agents and local provincial banks, presentation of ordered need area loaning targets, lead bank plot, arrangement of self-improvement gatherings, allowing BCs/BFs to be delegated by banks to give entryway step conveyance of banking administrations, zero equilibrium BSBD accounts, and so forth. The major goal of this multitude of drives is to arrive at the enormous segments of the up until recently monetarily rejected Indian Populace Admittance to fund, particularly by poor people and weak gatherings, is a fundamental essential for work, financial development, destitution mitigation and social upliftment. Monetary consideration implies the arrangement of reasonable monetary administrations by the formal monetary framework to the people who will generally be avoided. Monetary consideration will empower poor people and the rustics of our country to open a financial balance to save and contribute, to get and to reimburse, to safeguard and to partake in the credit. This will empower them to break the chain of destitution. In the Yearly Strategy Articulation of the RBI , approaches were made to urge banks to give broad financial administrations to the unbanked mass of the country. Despite the fact that there are individuals who want the utilization of monetary administrations, yet are denied admittance to the equivalent. The monetarily barred areas generally contain minimal ranchers, landless workers, independently employed and sloppy area endeavors, ethnic minorities, socially avoided gatherings, senior residents and ladies. In this situation, the requirement for monetary proficiency is become more significant than any other time as it decides the outcome of monetary consideration projects of each and every country. As a result, financial literacy education programs are receiving a lot of attention from both developed and developing nations. Monetary proficiency implies the capacity of an individual to figure out monetary issues. As such it implies the mindfulness, information and abilities of people to arrive at conclusions about reserve funds, speculations, borrowings and consumption in an educated way. In India, the requirement for monetary proficiency is more prominent on the grounds that an enormous segment of the populace actually stays out of the formal monetary arrangement. So as to build the degree of monetary education the Hold Bank of India has embraced a venture named 'Task Monetary Proficiency'. The dissemination of information regarding the central bank and general banking concepts to a variety of target audiences, including school-and collegebound children, women, rural and urban poor, military personnel, and senior citizens, is the goal of this project. That being said, a huge portion of the populace is as yet barred from the domain of formal monetary arrangement because of the absence of monetary proficiency. --- REVIEW OF LITERATURE According to Kempson et al. there are a variety of geographical and physical barriers to financial inclusion that, depending on the situation, might lead to financial exclusion for specific goods and people. Numerous "dimensions" or "forms" of financial exclusion have been recognized. Among the crucial aspects of financial exclusion are: Financial services providers may restrict access to their products through various means, including: access exclusion ; condition exclusion ; price exclusion ; marketing exclusion ; and self-exclusion . Leeladhar V believed in his talk that a comprehensive methodology with respect to the banks in making mindfulness about monetary items, training, and exhortation on cash the executives, obligation directing, reserve funds and reasonable credit will expect for tending to monetary rejection. As he would like to think Innovation can be a truly important device in giving admittance to banking items in distant regions and ATMs cash administering machines can be changed reasonably to make them easy to use for individuals who are ignorant, less taught or don't know English. "Poor individuals and small enterprises need to rely on their personal wealth or internal resources to invest in their education, become entrepreneurs, or take advantage of promising growth opportunities," according to Demirguc-Kunt . --- Research Gape Understanding the unique difficulties and efficacy of financial inclusion programs among tribal people in Wayanad, Kerala, is a research need that might help build more specialized approaches for sustainable economic development. --- Research Question How does financial inclusion efforts influence the tribal groups in Wayanad Objectives of The Study To evaluate the impact of financial inclusion efforts among tribal groups in Wayanad-Kerala Scope and Significance of the Study Financial inclusion primarily aims to free the impoverished from the clutches of local money lenders and provides them with official institutional help. Some of our banks have recently introduced general purpose and artisan credit cards that give minor loans without collateral as a first step towards this. Financial inclusion would support financial literacy, which is essential for the growth of the country and will empower the poorer communities. The purpose of this research project is to determine whether financial inclusion affects increases utilization of financial behavior. --- METHODOLOGY Drawing on primary and secondary sources, the study took a descriptive approach. Primary and secondary data sources were used to get the information needed for the investigation. One hundred and fifty responders make up the study's sample. Two phases go into selecting the sample for this investigation. Purposive sampling is the technique used in the sample selection process. Initially, three taluks in the Wayanad district-Mananthavady, Sulthan Bathery, and Vythiri-were chosen by the researcher to represent one village each. Thirteen significant tribal tribes, including the Paniya, Kurichya, and Adiya communities, were chosen to provide 50 respondents each for the second round of the survey. One hundred and fifty responders in all, representing the many tribal communities of Wayanad District. ANOVA and the chi-square test are two examples of statistical and mathematical methods that have been used for data analysis. Other tools include percentage, simple average, standard deviation, and tests of significance. --- RESULT --- Tribes and access to finance: As money, from a restricted perspective cash, has become ubiquitous in all aspects of the nation, clans, a local area which actually safeguards specific memories of their qualities and social framework acquired by and large, are slanted not to embrace the innovation to a helpful level. Obviously, their distance from the standard local area is mostly ascribed to their social settings and the worth framework which they guzzled from their social designs . The character of clans is trapped with this uniqueness, as a matter of fact. Having said this, it is clear that it is basically shaky for clans to live in segregation from the standard in regard of involving cash as a mode of trade. As they use cash for affecting exchanges, they should have additionally come into contact with the banks. In spite of the fact that there might be varieties in the degree to which clans have associated with the banks via having financial balances, clearly in Kerala, a state where banking network has arrived at each niche and corner, almost penny percent clans have admittance to ledgers. A review into the monetary rejection of clans in Wayanad locale, a clan packed region in the State, has uncovered that close to 94.8 percent of clans are having financial balances . Inside the ancestral networks, Kuruma, a forward non-crude clan local area in the State, has close to 98 percent of families with ledgers . The figure is marginally horrid on account of Paniya clan, a retrogressive non-crude clan normally seen in southern India. The above table my give us a help that greater part of clan families have gone under the ambit of the financial organization, and subsequently monetary consideration, the most important move towards achieving comprehensive monetary development, can be said to have been emerged. The image would be clear in the event that we go further to look at the explanation concerning why clans have had ledger. A large portion of the clans have gotten to financial balance as a result of an explanation which doesn't have a lot to with their pay and resource status. Clearly Clans working under MGNREGS have been compulsorily compelled to profit of ledgers except if they wouldn't be given their compensation under the MGNREGS . This implies that work market mediation through the program of government has been impetus in making clans banking included which is, as a matter of fact, not get the job done for monetary consideration. Banking institutions are increasingly interested in growing their client base, which makes sense given the recent improvements to the banking industry. As a result, they would want to provide bank accounts to more individuals. Furthermore, banks do not need to expend any money or require any specialized knowledge in order to offer bank accounts to the "unbanked." Furthermore, banks have the chance to transact government funds through their coffers in the case of MGNREGS and other government subsidy programs. When government money are channeled via banks to credit recipients' accounts under the guise of subsidy and other welfare programs, the volume of bank transactions increases. --- The question of access to credit: Holding simply ledger wouldn't get the job done to the prerequisite of monetary consideration, nor it helps a lot of in handling the issue of monetary weakness of families especially clan families. Low pay individuals need credit of modest quantity and too for brief time frame. The utilization of credit presumably assists with adjusting the everyday or week after week crisscross that happens in their family planning process. At the point when they stand up to with a pay shock or work shock, they need credit to loosen up their essential uses. The genuine inquiry is whether the banks or other loaning offices can meet these kind of credit prerequisites of clans. Formal banks are unwilling to loaning to the pay destitute individuals regardless of them being their client via opening records. Formal banks put numerous limitations and conditions before the borrower the greater part of which are not stuck to by the borrowers. Besides banks, in the changing conditions particularly when they search for exploitative business as opposed to dealing with the social government assistance needs for which they are said to have been nationalized in 1969, frequently deter low pay clients to get to credit. Neither do banks have items custom fitted to the particular necessities of the low pay individuals nor do they endeavor to assist with peopling access credit inside the accessible plans. This vacuum in the country credit market is in many cases taken advantage of by the casual players whose presence has been in presence and developing notwithstanding the nationalization of banks and resulting extension of bank offices in provincial regions. --- Informal Financial Players: TABLE 3. Sources of Indebtedness of tribes --- Sources of indebtedness --- Tribal communities Total Kurichias Paniya Adiya Obviously casual players dynamic in the rustic credit market meets lion portion of the credit prerequisites of the low pay destitute individuals like the clans. Their presence is most felt in regions where monetary proficiency is low and individuals reside in totally unfortunate circumstances. They propagate the regrettable everyday environments of destitute individuals in provincial regions and pocket what small amount profit or reserve funds they make. The dependence on casual lenders for credit prerequisite includes broad implications. The genuine monetary weakness of individuals particularly the low pay and financially denied networks like the clans originates from their unremitting reliance on the casual wellsprings of money. The truth that a mind-boggling number of clans rely upon casual players or 'non-status loan specialists' for meeting their credit necessities is validated by a look at the Table No.2.3. --- CONCLUSION The exploration clarifies the monetary scene of ancestral networks, especially in Kerala, stressing their association with banking foundations. With practically 94.8% of overviewed ancestral families having ledgers, the steps toward complete monetary improvement are clear, particularly among networks like Kuruma with an outstanding 98% financial consideration. Quiet, the Mahatma Gandhi Public Rustic Work Assurance Plan has been a critical driver, convincing roughly 54.5% of ancestral families into the financial crease. In any case, the review highlights that simple bank consideration doesn't get the job done to address the monetary weaknesses of these networks, as formal financial establishments frequently force unreasonable circumstances. Thusly, casual monetary players overwhelm the credit scene for low-pay clans, compounding financial weakness. The discoveries underscore the earnest requirement for customized monetary items and improved endeavors by formal banks to overcome any barrier, guaranteeing feasible monetary incorporation and advancement for ancestral networks. Limitation and Scope For Further Research The "Impact of Financial Inclusion Efforts Among the Tribal Groups in Wayanad, Kerala" study may have limitations. These include the possibility of difficulties extrapolating results outside of the Wayanad context, the dynamic nature of economic conditions over time, the reliance on potentially incomplete and unreliable data, linguistic and cultural barriers that may impede understanding and communication, outside factors that may affect the study's results, and the need to resolve ethical dilemmas when working with vulnerable tribal communities. Further studies should examine how financial inclusion programs within tribal communities can be sustained over the long run by examining how the social and economic landscape changes once the programs are put into place. Furthermore, examining the efficacy of particular financial education initiatives, comprehending the function of local governance in promoting financial inclusion, and investigating cutting-edge technologies to improve accessibility and utilization of financial services in tribal communities would provide insightful information for practitioners and policymakers.

This examination explores the effect of monetary consideration drives on ancestral gatherings in Weaned, explicitly zeroing in on their admittance to formal financial administrations. Notwithstanding the ubiquity of money, ancestral networks in Wayanad display a hesitance to completely embrace monetary innovation, credited to their one-of-a-kind social design. In any case, a mind-boggling 94.8% of ancestral families in the locale have ledgers, mirroring a significant mix into the formal monetary area. Remarkably, support in the MGNREGS program arises as a critical driver, with 54.5% of clans referring to it as the essential inspiration for getting ledgers. In any case, the review highlights that monetary consideration alone doesn't resolve the basic issue of financial weakness. Clans, as other low-pay gatherings, face difficulties in getting credit from formal banks because of rigid circumstances. Thusly, casual monetary players, common in regions with low monetary proficiency, assume a pivotal part in gathering the credit needs of these monetarily denied networks. These 'non-status moneylenders' in many cases exploit the monetary weaknesses of clans, propagating their desperate conditions. The exploration features the unavoidable dependence on casual sources and highlights the current holes in the conventional credit market, encouraging the requirement for fitted monetary answers for elevate monetarily denied networks.

Introduction  Although there is much talk about the need to open up cross-disciplinary dialogue and prioritize the use of open-source software, when considering disciplines that work with interview data, we can observe a kind of pillarisation of practices. Support for the multidisciplinary approach to interview data has been endorsed by scholars such as Van den Berg et al. , De Jong et al. , Corti et al. and Van den Heuvel et al. , but most scholars are completely unfamiliar with each other's approaches, and hesitate to take up technology. When software is used, it is often proprietary and binds scholars to a particular set of practices. This paper sets out to explore how to better exploit the rich multidisciplinary potential of interview data through the use of technology. To that end a multidisciplinary international community of experts organised a series of hands-on workshops with scholars who work with interview data, and tested the reception of a number of digital tools that are used at various stages of the research process. We engaged with tools for transcription, for annotation, for analysis and for emotion recognition. The workshops were held at Oxford, Utrecht, Arezzo, Munich, Utrecht and Sofia between 2016 and 2019, and were mostly sponsored by CLARIN. Participants were recruited among communities of historians, social science scholars, linguists, speech technologists, phonologists, archivists and information scientists. The website https://oralhistory.eu/ was set up to communicate across disciplinary borders. --- Digital tools to work with interview data A broad diversity of practices can be observed among scholars who work with interview data. Within every discipline distinct sub-disciplines exist, and disciplinary 'silos' certainly complicate collaboration across computer science, humanities and social science. Scholars use the same term for very different practices, or do similar things, but give it different names . Frames of interpretations differ. For instance, an oral historian will typically approach a recorded interview as an intersubjective account of a past experience, whereas another historian might consider the same source of interest only because of the factual information it conveys. A social scientist is likely to try to discover common themes and similarities and differences across a whole set of interviews, whereas a computational linguist will rely on counting frequencies and detecting collocations and cooccurrences, for similar purposes. On the other hand sociologists who interview, often seek to understand their interviewees in the same way as historians. The approaches with regard to re-use of data and anonymisation however are quite different . The question is how they can benefit from the myriad of freely available transcription, annotation, linguistic and emotion recognition tools. To address this diversity each workshop would start off with an informative session that sketched the various 'landscapes of practices': the different kinds of methodological approaches to attributing meaning to interview data. This exercise in demystification was gratefully received by our audiences, as it offered the opportunity to grasp the essence of the various approaches. After this, sessions were held consisting of a short introduction followed by a step by step tutorial to practice with the various tools. This was done in groups under close supervision of experienced digital humanities scholars. After each session, a short evaluation round was held with group interviews that were recorded. --- Creating a Transcription Tool: the T-Chain In the first session participants had a chance to work with functionalities surrounding automatic speech recognition . Transcription is at the core of research based on interviews and scholars often require full verbatim transcripts. This often means that the focus of attention shifts from the aural dimension of the narrative to its textual representation . ASR may challenge this practice, as it could take over the laborious practice of manual transcription. Scholars are however sceptical about results of ASR, as they can be disappointing. Accepting incorrect results could however also be considered as an opportunity to rethink the standard practice of relying on full manual transcripts. By aligning audio to the ASR output researchers can easily browse through an entire interview or interview collection, making the audio more accessible and present in the process of analysis. This may lead to a practice in which only particular passages need to be fully described. With this, and other possible uses in mind, the idea of the Transcription Chain, or T-Chain was born . The first workshops were designed to collect requirements for such a tool to be used by a broad diversity of scholars. A first version of the OH Portal was presented at the Munich workshop in September 2018 . The workflow consists of the steps upload, automatic speech recognition, manual correction of the ASR transcript, word segmentation and alignment, and phonetic detail . The T-chain currently processes Dutch, English, Italian and German audio. The portal automatically checks the audio file format and splits stereo recordings into separate mono audio files. These are uploaded to a server, and from there sent to different third-party providers. Thanks to a Google grant, the portal currently supports Google speech Selected papers from the CLARIN Annual Conference 2019 recognisers for many languages. To aid in the selection of services, a one-line summary of the service providers' privacy policy may be displayed, together with a link to the full legal text. When the ASR results are sent back the user may choose to check and correct the transcript manually . For this, the transcription editor OCTRA opens within the browser. After the manual correction of the ASR transcript, automatic word segmentation can be performed by using the WebMAUS service . The result of this step is a word-based timealigned transcript of the recording . At every step of the process, the output can be downloaded to the local computer in different formats, e.g. plain text, tab-or comma-separated tables, Praat TextGrid, Emu Annot-JSON, and ELAN for further processing and analysis. These exports can be made file-wise or column-wise, i.e. many files at once. The overall performance and acceptance of the OH Portal depends on a) transcription quality, and b) on user friendliness. Transcription quality depends largely on the acoustic quality, which in turn depends on the recording situation and the speakers, and on the capabilities of the underlying ASR systems. User friendliness depends on the graphical user interface, the speed of interaction and the feeling of being in control of one's own data. We recommend that users convert their audio files using tools such as GoldWave, Audacity or To_Wave_Convertor so that they may be processed by the OH portal. The OH Portal is limited by the amount of memory available in the browser -currently, files up to 300 MB can be processed. This corresponds to approx. 118 minutes of recordings at 22.05 kHz and 16 bit mono. Note that processing long recording files means long waiting times -for a smooth operation we thus recommend that users split their recordings into short meaningful units and process them individually. At hands-on workshops, we provided sample files in different languages with durations of up to 5 minutes so that all participants could work in parallel, and experience the progress of their files through the workflow. Finally, note that since ASR is provided by external providers, restrictions may apply. This is especially true for commercial providers who impose monthly quotas on accepted file size, recording duration or number of requests per month. --- Using existing data annotation tools Most researchers working with interview data use some form of annotation technique. The way these tools are used varies considerably across disciplines and the tools mostly used are proprietary. This can vary from using a pen and paper, coding of digital sources with a tool, to linguistic identification through information extraction tools. In the area of social science, qualitative data analysis software known as QDAS is popular, and includes market leaders such as NVivo, Atlas.ti and MaxQDA. They allow analysis of text and audiovisual sources, but can be costly and tend to lock-in researchers, with no import or export capability, nor any intermediate 'portable' formats, for example, in XML . For the workshop we chose to offer NVivo and the open source annotation tool Elan. The first, designed for social scientists, can collect all kinds of different sources into one project, can classify and group these, mark-up text, images and audio-visual sources with thematic 'nodes', and add notes, known as 'memos'. ELAN , in contrast, is freely available, and was developed at the Max Planck Institute for use in linguistics. Users can create 'tiers' in which annotations can be added to audio or video files, differentiating types of tiers and specifying 'parent tiers' . The ability to annotate the audio enables users to engage with multiple dimensions of an interview from as early as the point of recording the data. This tool is also seen as very suitable to annotate audiovisual data. --- Linguistic analysis tools Text mining tools used by computational linguists could also enrich the practice of social science scholars and historians, by offering insight into the structure of language. The semantic contexts in which terms are used, are telling for how social reality is created and remembered. In noncomputational methods the analysis of data starts with reading one transcript or listening to one interview at the time. Linguistic tools offer the detection of patterns in language or speech features by looking at the entire collection or to subcollections at once. This might be very useful when re-using a collection from an archive that is new to the researcher. Several features can be explored: concordances and correlations, processing syntactic tree structures, searching for named entities, and applying emotion recognition . --- Selected papers from the CLARIN Annual Conference 2019 This part of the workshop would start with an introduction to linguistic tools and their functions: lemmatizers, syntactic parsers, named entity recognizers, auto-summarizers, tools for detecting concordances/n-grams and semantic correlations. Participants were then given a live demo of the software tools and then some step by step guided exercises with data. The first tool to be introduced was Voyant , a lightweight text analysis tool that yields output on the fly . This was followed by Stanford CoreNLP , a linguistic tool that can automatically tag words in a number of different ways, such as recognizing part of speech, type of proper noun, numeric quantities, and more . Lastly, participants were encouraged to use Autosummarizer , a website which uses AI to automatically produce summaries of texts. These tools are relatively lightweight and require little to none installation of programs, so were far more readily amenable to the participants. A more complex tool was TXM, which stands for 'textometry', a methodology allowing quantitative and qualitative analysis of textual corpora, by combining developments in lexometric and statistical research with corpus technologies . It allowed for a more granular analysis of language features, requiring the integration of a specific language model, the splitting of speakers, the conversion of data into computer readable XML language, and the lemmatization of the data. --- Emotion recognition tools Emotion recognition tools are often developed and used in the field of Social Signal Processing , where the goal is to investigate and develop machines that are socially intelligent; this implies that they are capable of recognizing and interpreting social and affective signals automatically . Tools exist that can extract characteristic speech parameters which can subsequently be used in machine learning software to find and learn new patterns from this data. Applying these tools requires programming, so for social scientists and historians this is only feasible to apply in tandem with a computer scientist. What was key to convey to the participants, is the existence of this non-textual dimension of the recording. Emotion is indeed dealt with in the discipline 'discourse analysis', but not in a multimodal way. A way to profit from this tool, would be to identify particular emotions in an entire corpus, as a basis to go back to the interpretation of a single interview. Participants were first presented with the concept. During the session the use of the linguistic tool Praat was demonstrated, showing the silences in a corpus and how these can be relevant for emotional expression analysis . The hands-on component encouraged participants to get familiar with different speech features, for example, how to digitally detect and analyse these using a voice recording . --- Pedagogical considerations for preparation and evaluation Prior to the workshop, participants were invited to reflect on their own research trajectory and provide us with a short narrative of a typical research journey they had undertaken when working with interview data. Based on this homework, we assessed and visualized their workflows, and constructed a series of typical 'research trajectory' flow charts. This enabled us to come up with a high-level simplified trajectory and to identify how and where the digital tools might fit into the researchers' workflow. This is illustrated in Figure 4. Selected papers from the CLARIN Annual Conference 2019 with specific tools that they worked on in the workshops. Anticipating that the diversity of participants and tools would make the organization of the workshop complex, it was essential to follow principles in the design of the workflow that ensured 'satisfying user and research experiences'. To this end we took great care of ensuring a basic level for preparation: we gathered information on the participants on their level of digital shrewdness; prepared data familiar to the participants in both a common language and in their native language; assigned homework in order to make participants become familiar with the tools; and ensured that a participant with advanced digital skills was present in each of the language groups. After each session, each language group was asked questions on their experience and their assessment of tools' strengths and weaknesses. We also asked them if they would use the tool in their own research and if so, in what way. Lastly, we asked them for suggestions that we could pass on to the tool's developers. --- Evaluation of tools Even before the workshops started, some participants struggled to download unfamiliar software prior to meeting, suggesting a lack of basic technical proficiency. This can turn out to be a significant barrier to the use of open source tools that often require a bit more familiarity with, for example, laptop operating systems. It was useful to have speech technologists sitting amongst the scholars, witnessing first-hand some of the really basic challenges in getting started. --- Evaluation of the Transcription Chain The first hurdle with which the participants were confronted was the slow pace of the ASR process for particular languages. This meant that not all participants were able to fully experience working with the OH-portal. Those who did get the chance to play around with correcting the ASR results, appreciated the simple design and usability of the T-Chain. One participant remarked that they were glad the tool did not require much technical know-how. A happy surprise was that the software catered to all native languages represented by the different groups. With regard to criticisms, lack of transparency seemed to be the overarching theme for all groups. During the long waiting time for results to show, participants were bothered by having no insight in what was happening behind the scenes. Several participants expected more information about the ASR-engines in terms of accuracy and speed. The interface in some cases was unclear, for example, there were two options to choose as ASR-engines , but the difference between the two was not clear. Similarly, the OCTRA-editor included for correcting ASR results had a lot of shortcuts, but these were unclear to those unfamiliar with speech technology terminology. Attendees also expressed concern about the issue of privacy in sources that were uploaded to the web-based system, indicating that this may well be a problem in using the OH portal in their own research. Are the data stored somewhere after the processing is completed? They further questioned who owned the ASR-engines. Will the ASR results be used for improvement of the engine? One Selected papers from the CLARIN Annual Conference 2019 British participant remarked that without answers to these questions, it would be hard to justify using the tool in front of an academic research ethics committee. When asked for possible improvements on the T-Chain, participants stated that more documentation, on the technical, ethical and legal side, was needed. They pointed to the need for dejargonisation of terms or brands and further description or help added. One participant had the idea of a quick list on the side of the OCTRA-editor, where all the shortcuts to actions could be listed. File limits were of course also a problem. Participants would have liked to be able to upload not just wave files of a limited length, but also mp3 and different video files. More options for file conversion and export were requested, such as automatic conversion to TEI-encoded documents. Lastly, one feature that a British researcher would appreciate, is diarisation: the automatic detection of a speaker change, as well as a way of visualizing it. To conclude, most of the participants were intrigued by the general concept of a T-Chain with its speech-to-text and alignment software. Almost all of them saw ASR as a way of potentially easing the transcription process. With some improvements, participants could see themselves using this resource for this purpose, although a long period of acculturation would be needed. Some doubted whether they would use the included OCTRA editor for correcting results, and stated they would feel 'more comfortable' using an external tool or word processor for this purpose. --- Evaluation of text annotation tools Overall, the familiarity of annotation across disciplines made both NVivo and ELAN accessible to participants. But the vastly different terminology and user interface meant that users had to spend additional time acquainting themselves to the tool's unique layout before being able to annotate. What would help is a uniformity of language and terminology for features that all tools have in common. A useful step to take is the dejargonising of the interface, or creating custom user interfaces for different types of users. The NVivo tool worked particularly well with written transcripts, and allowed users to actually see mark-up and notes in the context of a transcript. Being able to collate all documents related to a single research project proved to be a clear benefit of the tool, with one user commenting that ELAN had a much more visual display and worked solely with audio and video data sources. But the learning curve of NVivo was steep for all participants unfamiliar with the software. Many experienced it as overwhelming and hard to work with. Another issue was how closed-off the package is. With barely any useful export and import functions, it is nearly impossible to use NVivo in combination with other software. ELAN, on the other hand, had good support for importing and exporting files. Some users named working with ELAN as a 'pleasant experience', as it had a clear and comprehensible interface . The concept of 'tiered' annotations was found interesting, and a useful way of visualizing codes/notes. With ELAN, codes and annotations are tiered and placed on a timeline, something which NVivo lacks. While ELAN was taken up more quickly by the participants, its focus on the particularities of linguistics was experienced as a hurdle. Specifically, users disliked the lack of the possibility to make a distinction between transcriptions and annotations/codes in the tiers. It seemed that transcribing in ELAN is less suited for the in-depth interviews, typically used in Oral History, than briefer interviews that are often analysed by linguists. All in all, it was hard for participants to imagine getting out of their 'comfort zone'. The amount of time needed to become familiar with the features of the tools, and to actually experience the benefits was too short. Some expressed interest in exploring the tool further while others were turned off by the idea of using such intricate tools in general. The reason is that a choice of a particular annotation tool leads to an engrained practice of research that cannot be easily traded for an alternative. The most open to change were those who already used existing similar software such as ATLAS.ti. An experienced participant pointed to the suitability of ELAN for research where multimodal annotation/coding was required, with video/audio and text in tandem. The less digital savvy researchers suggested offering functionalities with different levels of complexity: a Simple Mode and an Expert Mode. This would make simple actions a lot more accessible to researchers with second to no experience with digital research. Selected papers from the CLARIN Annual Conference 2019 --- Evaluation of on-the-fly linguistic analysis tools Whereas the introduction to gain insight in the generic linguistic tools and their shortcomings/opportunities was very much welcomed, the hands-on components were met with varied reactions. Overall, the participants enjoyed these tools, and referred to them as "easy-to-use", "simple", and "lightweight". Voyant and Autosummarizer, while not necessarily useful for drawing conclusions, inspired the participants to think about their own process of getting insight into a text and summarizing it. The limited amount of text that can be analysed was perceived as a barrier for the take up. There was an overall need to already be informed in a very concrete way about the added value for use of these tools by non-linguists. Exploring what the possibilities could be, proved to be demanding within the available time slot and only of interest to those interested in experimenting. What became clear is that sociolinguists may benefit from the use of the Voyant word frequency functionality. Although the use of word frequency raises controversy within linguistics, it is widely accepted that frequent words may influence phonetic change, and also may act as 'locus of style' for a given speaker . At the same time, it seemed that Voyant was not sophisticated enough to process uncleaned transcriptions. Not everyone found the tools easy-to-use. Voyant, with its many different windows, was described by one researcher as "incredibly frustrating", another participant wanted to know how the word clouds were generated. Stanford NLP a tool for more 'heavy-duty' linguistic analysis, was hard for the oral historians to relate to. --- Evaluation of a textometry tool Among advanced digital scholars, TXM was the most liked tool of all. One participant described it as the "most complete and transparent tool used so far". The combination of both power and transparency gave the researchers lots of inspirations and ideas on how to use the software. Functionalities that were mostly appreciated were the Tree Tagger, the visualisation of concordances and co-occurrences, and the ease with which it was possible to get an overview of the complete corpus. Aside from the tool itself, the clear printouts of instructions in this session that each could follow at his or her own pace, were greatly appreciated. They formed a counterbalance to the complicated nature of TXM. Interest was expressed for using co-occurrences and concordance in analysing both separate texts and sub-corpora. Some participants thought of this as a wholly new way of interacting with the data and discovering new aspects, while others thought it could prove or disprove 'hunches' they had about data, in that it is possible to quantitatively prove prevalence of certain words in text. A specific use for TXM that was mentioned was analysing differences in gender. TXM allows users to tag lets a user tag the gender of an interviewee and interviewer, which makes it possible to quantitatively analyse difference in the way these people speak, and making it a good tool to evaluate the entire corpus. For most participants without experience with digital tools, the complexity of TXM was a hurdle. Some encountered problems with the terminology used in the program . Several groups found the need to pre-process the data time-consuming and complicated. What could be improved of TXM is making the interface more approachable, adding more colour, turning the tool into a web-based service, and incorporating a glossary in which all the terms used in the software are explained. There were exceptions however: one user noted that "[TXM was] a bit of a struggle at first, but this helps you to do a close reading of an interview, and I think it fits perfectly within my traditional hermeneutical approach". Overall, it appeared difficult to understand how to attribute meaning to the frequency of a particular term in the entire corpus of interviews, when being used to focus on the interpretation of a single interview. TXM can offer insights in features of the interview process in its entirety, such as: the relation between words expressed by interviewer and interviewee, the difference in active and passive use of verbs between gender, age or profession, or the specificity of certain words for a respondent. In some ways, this might require the scholar to temporally disregard the individuality of the person talking, and switch from close listening to interpretations in which scale and numerical relations can be relevant. This requires a widening of methodological perspective in data analysis. Selected papers from the CLARIN Annual Conference 2019 --- Evaluation of emotional recognition tools The session on emotion recognition was the most remarkable one. While the technology behind it was the most complex, the relevance of identifying emotional features was clear to everyone. Participants first of all highly appreciated the outline of the discipline of Social Signal Processing . Even though Praat, as a tool for computational linguistics, was perceived as complex, the presentation illustrated its power in a way that all participants could easily relate to it. Here as well, the step by step guide provided was appreciated. One participant observed that she struggled less with terminology in this last session. She felt accomplished in having become familiar with technical terms like "tiers". Still the step of connecting this dimension of the data to their own research practice was difficult to make. Experimenting with Praat was an enriching experience, but even after fully understanding how differences in pitch, speed and silences can be extracted from the data, they were doubtful on whether such applications could be integrated in social science or oral history research. How do you blend in insights with regard to scale, frequency and paralinguistic features into the classic interpretation of the interview data? --- Conclusion Interview data provide rich and promising information sources with which to engage in methodological interdisciplinary or multidisciplinary conversations. Our analysis of the user experience before, during and after the workshop suggests that scholars are open to cross-fertilization. At the same time, scholars are only willing to integrate a digital tool into their existing research practice and methodological mindset, if it can easily be used or adapted to their needs. The limited functionality of the free easy-to-use tools, and the observed methodological and technological complexity and jargon-laden nature of the dedicated downloadable tools, were both seen as significant barriers, despite the availability of clear documentation. Time investment is key to really grasp the essence of a tool. This means that addressing the right audience at the right stage of their career is crucial. It could also mean that we have to offer different trajectories with different levels of complexity to different types of scholars. With regard to assumptions we had about the potential of the tools to affect existing research practicesquestioning the dogma of full verbatim transcription, exploring a collection with text mining tools, integrating the emotional features of an interview into an analysisit is too early to be able to draw any conclusion. The workshops offered insights in new approaches to a broad group of researchers, but we have only scratched the surface of what is possible. A much longer and intensive engagement with data and tools in small multidisciplinary teams is necessary to test our assumptions. We intend to continue to publish the results of our endeavours through case studies, that can be selected from the multilingual archive of interviews on the topic of migration, that was created by the team for the workshops. In terms of improving the take up among social scientists and historians who work with interview data, of what the CLARIN infrastructure has to offer, it is clear that jargon is an obstacle. More user friendly, well-documented and stable tools would be welcomed, especially in a form that makes it possible to skip the lengthy process of installing software. More specifically, it may be worth exploring the integration of open source annotation tools into the latter end of the T-Chain to enable a seamless experience, and thereby moving towards the ever-appealing concept of the workbench. Moreover, as in all ASR services, privacy concerns must be addressed so that users have a very clear understanding of what will happen to a source once uploaded to a tool. In this respect, an explicit GDPR-compliant data processing agreement may allay worries. A closer collaboration with the CLARIN Ethical and Legal Committee is therefore recommended. As different disciplines and tools for interview data use varying metadata schema, work needs to be done on mapping and crosswalks and export of marked up formats. Empowering the curators and publishers of interview data to get their collections 'analysis-and tool ready" is useful, as is encouraging them to also make use of text mining tools, such a term extraction, for enhancing resource discovery. Selected papers from the CLARIN Annual Conference 2019

There is much talk about the need for multidisciplinary approaches to research and the opportunities that have been created by digital technologies. A good example of this is the CLARIN Portal, that promotes and supports such research by offering a large suite of tools for working with textual and audio-visual data. Yet scholars who work with interview material are largely unaware of this resource and are still predominantly oriented towards familiar traditional research methods. To reach out to these scholars and assess the potential for integration of these new technologies a multidisciplinary international community of experts set out to test CLARIN-type approaches and tools on different scholars by eliciting and documenting their feedback. This was done through a series of workshops held from 2016 to 2019, and funded by CLARIN and affiliated EU funding. This paper presents the goals, the tools that were tested and the evaluation of how they were experienced. It concludes by setting out envisioned pathways for a better use of the CLARIN family of approaches and tools in the area of qualitative and oral history data analysis.

education interventions " , while here we take up the second part: Are educators using it? Measuring attitudes toward, capacity for, and actual use of research evidence has become a central focus of education researchers. In the United States, the William T. Grant Foundation has sponsored research on the use of research evidence in youth settings since 2009, while in 2014 the National Center for Research in Policy and Practice and the Center for Research Use in Education were formed to investigate whether educators are using research to inform their decision-making. Similar efforts toward measuring the use of research evidence in educational settings have also emerged in the United Kingdom , Australia , Canada , Germany , and the Netherlands . Research use can occur in many different ways, including for instrumental purposes such as selecting a program with demonstrated effectiveness, as a conceptual tool that informs how programs are examined but may not impact which program is selected, and as a symbolic gesture that confers legitimacy on the decision to select a particular program . However, regardless of the specific way that research evidence is used in schools, measuring it has proven challenging for a number of reasons. Educators' busy schedules make it difficult to collect data directly from them, and more than a decade of promoting evidence-based programming has raised the risk of educators providing socially desirable responses. Moreover, even when data can be collected from educators as individuals, this provides limited information about research use by schools as institutions. The Archival Search for Use of Research Evidence is an archival measure that aims to overcome these challenges and meet the needs of research focused on the use of research evidence. ASURE directly measures what we call the rhetorical use of research evidence: the invoking of research or evidence in communication to outside audiences . However, when a person or organization engages in rhetorical use of research evidence, it is often to communicate about an actual instrumental, conceptual or symbolic use of research evidence. Thus, ASURE may also indirectly measure these other types of use. It differs from other measures in three important ways. First, whereas most other measures aim to assess the use of research evidence by individuals, ASURE is focused on use at the organizational-level, for example by a school, school district, or other education entity. Second, rather that attempting to directly capture instances of actual research use, ASURE instead aims to identify instances of organizations communicating about use to outside audiences . Third, as an archival measure, ASURE is non-reactive and collecting it does not require direct interaction with organizations or people , and thus is both less prone to social desirability biases and places less burden on respondents. Moreover, because ASURE is derived from data that are readily accessible using internet search engine results, it can be used at large and nested scales and in near real-time. This paper is divided into five sections. In the first section, we briefly review the meanings of "use of research evidence," then in the second section we discuss some of the challenges to measuring the use of research evidence in schools. In the third section, we introduce the ASURE measure as a possible solution to some of these challenges. In the fourth section, we use data collected from all public school districts in Michigan to present evidence of ASURE's feasibility and reliability as a direct measure of rhetorical use, and evidence of its validity as an indirect measure of actual use. We conclude in the final section with a discussion of the limitations of ASURE, and directions for its further development. --- What is "Use of Research Evidence"? As early as 1980, scholars have noted the difficulty of defining the use of research evidence and the related constructs of "knowledge utilization" and "evidence informed decision making," leading Larsen to describe it as "one of the most pressing needs in the field" of knowledge utilization . Many efforts to define these concepts trace initially to the mid-1970s, with separate strands focusing on types and degrees of use. Rich and Caplan et al. both articulated two types of research useinstrumental and conceptual -in the same year, however they defined them in subtly different ways. For Rich , instrumental use occurs in the short-term and "refers to use…of information that can be documented: it appears directly in a memo," while conceptual use occurs in the long-term and "refers to influencing a policy-maker's thinking about an issue" . In contrast, for Caplan et al. , instrumental use is "specific, task oriented", while conceptual use is "general, broadly oriented" . In 1977, Knorr instead juxtaposed instrumental use with symbolic use, which "refers to post hoc legitimations of decisions already taken" . This triumvirate of types of research use -instrumental, conceptual, and symbolic -were ultimately joined together by Pelz , Weiss and Bucuvalas , and Beyer and Trice , but continued to evolve. For example, Weiss referred to what had been called instrumental uses as enlightenment, and subdivided symbolic uses into those that are political and tactical . More recently, Estabrooks adopted a new set of terminology for the same set of types, replacing instrumental with direct, conceptual with indirect, and symbolic with persuasive, finding that although they are distinct types of research use, they are each aspects of a single underlying construct of research use. While much of the theorizing and empirical research on the use of research evidence has focused on defining its types, others have also aimed to define degrees of use. Larsen distinguished complete use in which research findings are used in their original form, from adapted use that modifies findings to fit the user's context, and partial use that relies only on those findings that are relevant or fit existing beliefs. Knott and Wildavsky offered a more complete seven-stage framework for understanding the degrees of use. In their framework, the most minimal use of research evidence is reception, in which policy and decision makers have merely received research evidence. Following reception, use may proceed through the stages of cognition , reference , and effort . The process concludes with the adoption of the actions justified by the research, their implementation, and their impact. Although this framework focuses on degrees of use, there is also overlap with frameworks that focus on types of use. For example, the reference stage mirrors conceptual use, while the effort stage mirrors symbolic use. Each of these definitions of the use of research evidence raise the question: what counts as "research" or "evidence"? In much of the work reviewed above, research evidence is ambiguously defined, but from context implicitly refers to a kind of knowledge generated via the scientific method . Importantly, this work is clear that research is defined by the process, not the person who generated it: a university professor can generate research evidence, but so too can a practitioner. Under this definition, data by itself is not research because while data is "systematically collected and organized to represent some aspect of schools" , it may not be subject to formal analysis or have been collected for the purposes of answering a pre-defined question. Accordingly, the constructs of "data use" and "data based decision making" that often arise in the field of education are different from the use of research evidence, but nonetheless share some similarities . For example, there are multiple types of data use, and data may be used in decision-making to varying degrees. Thus, past efforts to measure whether or to what extent educators are using data, and whether or to what extent they are using research evidence, may inform each other. --- Challenges to measuring the use of research evidence in schools Despite recent attention on the importance of the use of research evidence by schools, few quantitative measures have been developed to measure it. Often schools' use of research evidence is assessed qualitatively , which can be valuable for understanding the processes involved, but can be difficult to employ in largescale studies and for other researchers to replicate. Although quantitative measures of the use of research evidence have been developed in related settings like health care, these require adaptation for use in schools . In this brief review, we do not attempt to present a comprehensive review of the measurement of the use of research evidence, but rather to summarize the measurement challenges identified by existing reviews , with a particular focus on identifying the extent to which those challenges extend to measurement in schools. First, nearly all measures are individual-level, assessing the extent to which individuals use research or characterizing individuals' attitudes about or ability to access research. The pool of individuals varies in scope, from teachers alone , to teachers and principals , to teachers, administrators, andstaff . A similar individual-level focus appears in other contexts as well, with some of the most widely used measures focused on individual social workers and case managers . Such individual-level measures can be aggregated within organizations , however this yields an indirect organization-level measure and can be problematic when there is variation among the individuals within an organization . Thus, while existing measures can provide insight into educators' use of research evidence, they are less suitable for measuring schools' use of research evidence. Second, nearly all measures of the use of research evidence are collected via self-report using a survey or structured interview. Unless specific steps are taken to avoid priming respondents, for example by not asking explicitly about research or evidence , these types of measures can introduce the risk of a social desirability bias. For example, Anderson, Leithwood, and Strauss sought to assess the use of research evidence using a four-item scale that included asking school principals : "I rely frequently on research evidence in my decision making." In the current policy climate that promotes evidence-based practice, it is difficult to imagine a principal selecting the "disagree" or "strongly disagree" response option. Indeed, among 237 principals, the mean response on this item was 4.86, well above the scale midpoint and corresponding to "agree." Similarly, Williams and Coles found that only 2.7% of principals in the United Kingdom reported having a negative attitude about research. Selfreport measures that invite socially desirable responses can inflate estimates and lead to ceiling effects that hamper subsequent statistical analysis. Third, the majority of measures with evidence of validity are multi-item scales. Although scales allow the researcher to assess reliability, measure multiple dimensions of the use of research evidence, and examine the measurement's structure, their collection also requires more time . Some of the scales developed for educators have more than 40 items . Scales frequently used in social work are similarly long: the Evidence-Based Practice Process Assessment Scale has 51 items , and the Structured Interview for Evidence Use has 45 items . The length of these scales may limit their use in large populations or in populations with limited time . Finally, because many measures of the use of research evidence are designed to be collected directly from respondents, they raise concerns about low response rates and patterns of missingness. Most studies measuring the use of research evidence in schools did not report their response rates , while those that did reported fairly low response rates . Response rates were slightly higher among social workers , mental health practitioners , and government officials , but still well below levels necessary to avoid non-response bias. The exception appears to be when such measures are collected from a captive student population for the purposes of evaluating training in the use of research evidence . --- Developing an archival approach to measuring the use of research evidence in schools Having encountered some of these challenges during the conceptualization and data collection stages of a larger study about the use of research evidence in public education , we sought to develop a new measurement strategy that might provide some solutions or supplement existing measures. Actual instrumental , conceptual , and symbolic uses of research evidence are difficult to observe or detect directly, often because they are subtle and occur "behind the scenes." However, schools' engagement in these types of uses can leave behind indirect traces, including instances of schools communicating to outside audiences about having engaged in the uses of research evidence. This led us to explore the possibility of an archival measure of use of research evidence that focuses not on capturing instances of actual use, but instead on capturing the traces of use in schools' communications . There are many different archival sources where a school's use of research evidence might be reflected, including school board meeting minutes, school improvement plans, and teachers' classroom materials. However, among the most readily accessible and publicfacing archival sources is a school's own website, including the web pages and documents hosted there. Drawing on this archival data source, the Archival Search for Use of Research Evidence measures a school's rhetorical use of research evidence by identifying and counting references to using research or evidence on its website. It is collected by performing the following search using Google allintext: site:XXX where XXX is replaced with a school's top-level domain. This search will return a list of all web pages within the school's website that contain the phrase "research based" and/or the phrase "evidence based" , along with an approximate count of the number of pages meeting these criteria. Accordingly, ASURE scores take the form of a count variable, and thus range from 0 to, in principle, positive infinity, but in practice likely rarely exceed 1000. Figure 1 shows an example for South Lyon Community Schools, with the ASURE score circled. The selection of keyword phrases is critical; too many, too few, or inappropriate keywords can lead to errors. We experimented with a large number of keyword phrases in different combinations, each time reading the pages returned by the search to determine whether they included references to the use of research evidence. For example, we found that the phrases "use of research evidence" and "evidence informed decision making" are rarely used and resulted in undercounting. Conversely, the keyword "research" is commonly used on pages that do not reference the use of research evidence and resulted in overcounting . In the context of Michigan public schools investigated in the next section, we found that the keyword phrases in the search above offered a balance between including relevant pages and excluding irrelevant ones . This approach offers a potential solution to many of the challenges associated with existing measures of the use of research evidence reviewed above. By focusing on a school's website, it measures use of research evidence at the organizational rather than individual level, and as an archival measure, it is nonreactive and thus reduces the risk of obtaining socially desirable responses and eliminated burdens on the respondents. Additionally, because this measure can be collected electronically using publicly accessible websites, the cost of data collection is minimal, and the risk of non-response is limited to schools that do not maintain websites. Moreover, it may offer some additional advantages. First, it can be collected in near real-time, allowing researchers to collect baseline data or to characterize a sample of schools very quickly . Second, it can be collected at large scales, for example, about all schools in a state or country. Third, it can be collected at multiple, nested scales by modifying the domain specified in the search query, allowing researchers to characterize the use of research evidence not only in individual school buildings, but also in whole school districts, or in county-or higher-level administrative units . While ASURE has the potential to offer some advantages, it is important to be clear about what it is and is not designed to measure. It directly measures schools' rhetorical use of research evidence, which we define conceptually as the invoking of research or evidence in communication to outside audiences , and which ASURE operationalizes as website references to research and evidence. In the next section, we present evidence of ASURE's feasibility and reliability as a direct measure of rhetorical use. In contrast, ASURE does not directly measure the extent or quality of schools' use of research evidence. However, to the extent that rhetorical use and actual use co-occur , ASURE may provide an indirect or proxy measure of the extent to which a school engages in the use of research evidence. In the next section, we present evidence of ASURE's validity as an indirect measure of schools' use of research evidence. --- Illustration and Validation: The use of research evidence in Michigan Public --- Schools We initially experimented with ASURE by collecting it for approximately half of all public school districts and intermediate school districts in Michigan in October 2016 . We then collected ASURE for all districts in Michigan in March 2017 to more rigorously investigate its reliability and validity as a measure of the use of research evidence ; results reported in this section refer to this full-scale data collection. ASURE could not be collected for 33 districts because they either did not maintain a website, or their website was not fully indexed by Google. Thus, we were able to collect ASURE for 562 districts , which took approximately two hours, highlighting its feasibility even in relatively large settings. Because ASURE is a single-item measure, the only form of reliability that is relevant is testretest reliability, which assesses a measurement's stability over time. To evaluate ASURE's test-retest reliability, we compare ASURE scores in October 2016 and March 2017. The high correlation indicates that ASURE scores were stable over this six-month period and offers evidence that it exhibits test-retest reliability. More concretely, schools' ASURE scores do not fluctuate dramatically over short periods of time, but instead offer a time-stable measure of their rhetorical use of research evidence. Figure 1 illustrates the distribution of ASURE scores among Michigan public schools in March 2017. Approximately 27% of districts' websites contained no pages referring to research or evidence , and an additional 16% of districts referred to them on only one page . However, the majority of districts in Michigan refer to research or evidence on two or more of their web pages . On average, districts refer to research or evidence on 9.62 web pages, however this masks substantial variation in the measure . For example, some local public school districts referenced research or evidence on more than 100 separate web pages. These ASURE scores directly capture the frequency of a school's rhetorical use of research evidence when engaging with the public through its website. Although web pages are authored by individuals, the positively skewed distribution suggests that ASURE is not affected by social desirability and the associated ceiling effects. --- Qualitative Validation Table 1 presents qualitative evidence of ASURE's content validity and provides a window into exactly what ASURE is measuring by reporting, for school districts with low , medium , and high values of ASURE, the context within which these keywords appeared on their websites. The website for Madison District Public Schools, located in suburban Detroit, contained only one page using either keyword -in an annual education report letter sent to parents and community members -and thus receives an ASURE score of 1. This may communicate an instrumental use of research to the public because it suggests the district is focusing teacher professional development on learning strategies that are based on research, but it may also communicate a symbolic use of research to the public because it communicates directly to parents the district's commitment to high-quality pedagogical strategies. The website for Huron School District, located on the Southern edge of Detroit Metropolitan Airport, contained these keywords on five separate pages, and thus receives an ASURE score of 5. A reference to "research based" in the district's vision statement on its home page communicates a symbolic use of research evidence, conveying immediately to all website visitors that the district values research-based instructional practices . Likewise, references to "research based" in materials promoting a tax increase communicates a symbolic use of research evidence to the public, in this case of a specifically political nature . Notably, although the phrase "research based" is used in exactly the same context in B4 and B5, these are nonetheless distinct items on the website and therefore are counted separately to arrive at an ASURE score. In some sense, this "double-counts" references to uses of research evidence, but it captures the fact that the district has placed such references in multiple locations throughout its website. Like Madison District, Huron District also uses the phrase "research based" in its annual education report letter to parents . However, in this context, it may be viewed as a communication of conceptual use because thinking about research-based practices guides the district's progress toward school improvement. Finally, in a page providing parents links to special education resources , the National Dissemination Center for Children with Disabilities is highlighted as a source for "research based" information, which explicitly communicates instrumental use of research. Finally, the website for Mattawan Consolidated Schools, located in rural Southwestern Michigan, contained the relevant keywords on 24 distinct pages, but receives an ASURE score of 28. When the number of pages containing the relevant keywords exceeds 10, the number reported by Google on the first page of search results is an approximation. However, we found that these approximations are typically quite close to the actual page count, and as we demonstrate below, exhibits strong test-retest reliability. These 24 pages communicate several different types of the use of research evidence to the public, including instrumental , conceptual , and symbolic . However, while most of the pages identified by ASURE in this district assess rhetorical uses of research evidence , some do not. For example, the phrase "research based" appears in the title of an item in the bibliography of a curriculum manual , and in a newsletter to describe a new component of the SAT exam , but in neither case is the keyword used to refer to the use of research evidence. --- Quantitative Validation Although ASURE directly measures schools' rhetorical use of research evidence, it may also offer an indirect or proxy measure of schools' actual use of research evidence. To explore this possibility, Table 2 presents quantitative evidence of ASURE's validity as a measure of the use of research evidence using correlation coefficients. The statistical significance of these coefficients was evaluated using Monte Carlo permutation tests to avoid increases in Type-I error associated with large sample sizes. Validity is a more complex concept than reliability, and is composed of multiple aspects . Here, we focus on what Messick calls the external aspect, which can be established through "convergent and divergent evidence…as well as evidence of criterion relevance and applied utility" . First, convergent evidence is a "pattern indicating a correspondence between measures of the same construct" , and aims to demonstrate that a new measure is consistent with an already established measure. To provide evidence of ASURE's convergence, we compare ASURE scores to scores on the Evidence Based Practice Attitudes Scale , which is a widely used measure of the use of research evidence. As part of a related study conducted in 2015, a random sample of 200 Michigan school district superintendents were invited to complete two adapted versions of the openness and divergence subscales of the EBPAS . In the first version, they responded to items focused on themselves , while in the second version they responded to items focused on their district . We find that ASURE is positively correlated with both the self-focused and district-focused versions of the EBPAS. Notably, the correlation with the district-focused version is slightly higher, which is expected because ASURE is intended to be an organizational-level, rather than individual-level measure of the use of research evidence. Although the correlation coefficients are in the expected direction, neither is statistically significant, the implications of which we discuss below. Second, discriminant evidence is a "pattern indicating a distinctness from measures of other constructs" . Given its measurement, there is one construct in particular for which distinctness is most in jeopardy, and thus for which discriminant evidence is most needed: the overall size of a district's website. Because ASURE is measured as a count of web pages, there is the risk that it simply measures the size of a district's website, but not the extent of a district's use of research evidence. To provide evidence of ASURE's ability to discriminate these two potentially related constructs, we compare ASURE scores to the total number of web pages on each district's website. Despite its statistical significance, the weak correlation indicates that ASURE is not merely measuring website size, and thus offers evidence of its discriminant validity. Importantly, because ASURE is necessarily less than or equal to the total number of web pages on a given site, some minimal correlation between these two constructs is required, however it is smaller than most other correlations presented in Table 2. Third, evidence of applied utility involves demonstrating a relationship between the measure in question and "criterion measures pertinent to selection, placement…or other accountability purposes in applied settings" . To provide evidence of ASURE's applied utility, we focus on two broad categories of such measures that are expected to be associated with schools' use of research evidence: organizational capacity and student achievement. Domitrovich et al. and others have argued that "the amount and type of resources available to deliver evidence-based services in schools are important organizational-level factors to consider" when understanding schools' implementation of evidence-based practices . Because locating, understanding, and implementing research evidence is time consuming, time is one important resource to provide capacity for the use of research evidence, which can be limited in districts serving large numbers of students. Accordingly, we find that ASURE is negatively correlated with district enrollment, controlling for revenue . Because the implementation of evidence-based programs can also be costly, money and especially capacity for greater per-pupil spending is another important resource. We find that ASURE is positively correlated with district expenditure, controlling for district enrollment . Finally, simply having the autonomy and expectation to engage in using research evidence is an important, but often overlooked factor in capacity. In Michigan, Intermediate School Districts are county-level agencies that exist primarily to provide support services, including consultation on and assistance with research. We find that ASURE is positively correlated with whether or not a given entity is an ISD . Whereas capacity to engage in the use of research evidence is an important precursor to the actual use of research evidence, student achievement is an important outcome. Promotion of the use of research evidence in schools is most often advocated as a strategy for improving learning outcomes. For example, in the United States, the purpose of the What Works Clearinghouse is to facilitate the use of research evidence for the selection of the most effective programs, while the purpose of the IES-sponsored National Center for Research in Policy and Practice is to explore "how research can best be used to improve school performance and student outcomes." The Education Endowment Foundation and What Works Scotland have similar aims in the United Kingdom. Reflecting the effect of the use of research evidence on outcomes, we examined the relationship between ASURE and students' academic proficiency as indicated by scores on the Michigan Student Test of Educational Progress , a standardized test introduced in 2015 to measure students' progress toward state educational standards and used by all public schools in Michigan. We find that ASURE is significantly positively correlated with the percent of a district's students that achieved proficiency in the areas of math , science , social studies , but not literacy . --- Discussion ASURE provides a direct measure of schools' or school districts' rhetorical use of research evidence, which refers to their communication with outside audiences about engaging in the use of research evidence. It also provides an indirect measure of schools' actual use of research evidence. A school's ASURE score directly conveys the number of pages on its website where research or evidence is referenced, but a more conceptual interpretation of individual scores is challenging without a frame of reference. That is, when looking at a single school's score, it is difficult to say whether it is high or low, good or bad. Instead, it is more useful to interpret schools' ASURE scores with reference to other schools' scores. First, there is an important difference between schools with ASURE scores of 0 and those with non-zero ASURE scores: it distinguishes schools for which notions of research and evidence are sufficiently important to be mentioned when communicating with outside audiences from those where notions of research and evidence are not particularly salient. Second, among schools with non-zero ASURE scores, it may be possible to draw comparisons. For example, schools with higher ASURE scores invests more effort in, and perhaps places more value on, the use of research evidence, than schools with lower ASURE scores. However, as an indirect measure of use of research evidence, precise numerical comparisons may not be appropriate. For example, the difference between schools with ASURE scores of 1 and 2 may be more important than the difference between schools with ASURE scores of 50 and 51, despite the numerical differences being the same. Similarly, the difference between schools with ASURE scores of 500 and 1000 may be negligible, despite the substantial numerical difference. As the text excerpts in Table 1 illustrate, ASURE captures school districts' communications to the public about instrumental, conceptual, and symbolic uses of research evidence while rarely capturing instances that are not related to the use of research evidence, providing preliminary qualitative evidence for its content validity. At the same time, these qualitative data offer an opportunity to consider some of ASURE's limitations. First, as a single-item measure, it cannot be used to independently measure and distinguish school districts' communication about different types of uses of research evidence. Second, if a webpage has recently been redesigned, or if it is written in a non-HTML language , search engines may not have indexed the contents of their pages, leading to coverage issues. Finally, this measure could be susceptible to false positives and false negatives. False positives include cases where a district uses phrases like "evidence-based" on their website, but is referring to something other than the use of research evidence . Conversely, false negatives include cases where a district communicates information about the use of research evidence, but does not use the phrases specified in the search query on their website. In principle, these types of errors could be corrected by using the same measurement procedure, but by narrowing or broadening the keyword phrases, respectively. While our qualitative examination of search results suggests that false positives are rare, the frequency of false negatives is unknown. The results presented in Table 2 provide preliminary quantitative evidence for ASURE's reliability as a direct measure of schools' rhetorical use of research evidence, and of its validity as an indirect measure of schools' actual use of research evidence. Specifically, they show that ASURE is stable over time, consistent with an existing measure of the use of research evidence, distinct from website size, and associated in expected ways with measures of district capacity and student performance. Some of these findings, especially those that provide somewhat weaker evidence, offer greater insight into ASURE and warrant closer consideration. It might be surprising that ASURE is not more highly correlated with the total size of a district's website, and thus that ASURE does not require normalization by website size . A more detailed look at district websites revealed that total website size is driven primarily by the site's architecture. For example, most district websites provide a staff directory, but some directories list all staff on a single page , while others list each staff member on their own contact page . This helps explain the low correlation between ASURE and website size, and also why it is unnecessary and inappropriate to normalize ASURE by website size. The positive correlations observed between ASURE and EBPAS offer some convergent evidence, but this may be viewed as weak evidence because these correlations are not statistically significant. However, the lack of statistical significance may be driven by the fact that the EBPAS is a self-report measure, and thus subject to social desirability biases and ceiling effects observed in many existing measures of the use of research evidence. Indeed, in this sample we observe evidence of ceiling effects . This could suggest that the lack of a significant correlation may be more closely associated with threats to the validity of EBPAS, than of ASURE. The correlations between ASURE and student achievement on standardized tests were positive and significant for most subjects, but smaller and non-significant for literacy. This is surprising given the volume of research on literacy-focused programs and practices. Indeed, the What Works Clearinghouse lists nearly twice as many literacy-focused programs than in any other focus. The non-significant correlation observed for literacy achievement may reflect that schools are exposed to a large pool of literacy-based programs, making the selection and implementation of evidence-based ones more challenging. It also represents an opportunity to reflect on what ASURE does and does not attempt to measure. ASURE is designed as a measure of schools' rhetorical use of research evidence, but it does not directly measure schools' implementation of the findings of that research. For example, a school may use research evidence to select a particular literacy program, but subsequently be unable to fully implement the program due to other time, cost, or political barriers. More generally, however, the modest correlations observed for achievement across subject areas can be explained by the fact that schools' use of research evidence is only one of many factors that may influence students' achievement. There are a number of ways that ASURE might be used in future research. First, ASURE provides a direct measure of schools' rhetorical use of research evidence, which can be used to better understand how different schools communicate with their outside audiences, and the extent to which they highlight research and evidence in those communications. Second, it provides a new indirect measure of the extent of schools' actual use of research evidence, which can be used to examine both potential predictors and outcomes faster and in larger setting than are possible with existing measures. Third, it can be used in a complementary fashion alongside other strategies for investigating the use of research evidence. For example, ASURE might be paired with additional quantitative measures or qualitative investigation to identify specific types of use of research evidence, barriers to use, or the process of use. Such a combination of multiple measures and modes of investigation of the use of research evidence can provide a more comprehensive understanding of how schools are engaging with research. Finally, ASURE can be used as a diagnostic measure to identify schools that are or are not using research and evidence, or an evaluative tool to examine the impact of interventions intended to facilitate schools' use of research evidence. However, supporting these future research applications, additional research on ASURE as a measure of the use of research evidence is needed. The evidence presented in Tables 1 and2 of its reliability and validity should be viewed as tentative, and future work should aim to establish its reliability and validity in other contexts and at other organizational levels . Additionally, further investigation of methods for selecting keyword phrases used in the search query may help identify ways to tailor these keywords. For example, while the phrases "research based" and "evidence based" are commonly used in primary public education settings in the United States, other phrases may be more appropriate for investigating the use of research evidence in other settings or locations . For example, the phrase "evidence informed decision making" is not widely used in public education settings in the United States, while it is more common in the field of public health in Canada . More broadly, future research may also explore whether ASURE can be adapted as a general measure of organizations' rhetorical and actual use of research evidence. While in this paper we have described and validated ASURE in the context of public schools, in principle this measurement strategy could be employed to measure the use of research evidence by any kind of organization that maintains a website. Again, because different kinds of organizations may use different keywords and phrases to refer to research evidence, the specific terms used in ASURE may vary across contexts. However, this initial exploration offers a starting point for the development not simply of a measure for schools, but instead of an archivally-based, organization-level measure of the use of research evidence. Our brief review of existing strategies for measuring the use of research evidence in schools and related social service settings revealed a series of measurement challenges: a focus on individuals but not organizations, risks of social desirability bias and ceiling effects, time consuming and costly data collection, and low response rates. To address these challenges, we developed the ASURE measure, which uses readily available internet search engine results to directly measure schools' rhetorical use of research evidence, and indirectly measure their actual use of research evidence. Despite its potential limitations, our application of ASURE to measure the use of research evidence in all 595 Michigan public school districts suggests that ASURE holds promise as a rapid measure of use of research evidence that is both reliable and valid, and thus offers education researchers a viable new measurement strategy. The redesigned SAT includes "Scale from 200-800 for evidence based reading/ writing" --- Example Google Search for ASURE --- Distribution of ASURE ---

Measuring the use of research evidence (URE) by schools has become a central of education researchers. However, it has proven challenging due to low response rates, social desirability bias, and costly or time consuming data collection methods. To overcome these challenges and meet the needs of research focused on URE, this paper introduces a non-reactive archival measure: Archival Search of Use of Research Evidence (ASURE). ASURE counts references to research or evidence on a school's or school district's website to capture the extent of its rhetorical use of research evidence. After illustrating the collection of ASURE in all public school districts in Michigan (N = 595), we use data on these districts to show that ASURE is reliable and valid, and thus offers a promising new strategy for measuring URE in schools. We conclude by considering future steps for exploring ASURE not simply as a measure of URE in schools, but instead as a measurement strategy for assessing URE in a broad range of organizational contexts.

INTRODUCTION User-controlled personal assistance is an arrangement developed by, and for, people with disabilities. UPA for people with disabilities is 'seen as a tool for liberation and a decisive instrument to realise their right to control over their own life' . This involves transferring control from an external service provider to the person with disabilities, empowering them to administer their own arrangement by deciding when they want assistance, how they want to use it and who their assistants should be . UPA emerged from the independent living movement that originated in the United States in the 1960s . The core ambition of IL was to fight the oppression and discrimination that people with disabilities faced in America during this period. According to Ratzka , the IL ideology is founded upon five core values: • De-medicalisation: People with disabilities are citizens, not patients. • Cross-disability: Changing the views of people with disabilities from sick/injured to a group that is discriminated against in society. This further builds on the conception that a common experience of discrimination unites, whilst diagnostic descriptions separate. • De-institutionalisation: Institutions that control the lives of people with disabilities need to be phased out. This also includes what IL defines as mobile institutions, a term which refers to health and care services provided in people's homes. • De-professionalisation: External actors, public or private, should not control the lives of people with disabilities. Instead, IL demands the recognition of people with disabilities as the foremost experts of their own lives. • Self-representation: People with disabilities should be given the right and opportunity to speak on their own behalf, both collectively and as individuals. Emerging from the IL movement, UPA was intended to be founded on all the above-mentioned values and represent an alternative to traditional health and care services. This means that the person receiving UPA should decide what, where and how they wish to use their own arrangement ). This stands in contrast to other public services where assistance or care is often provided at set times, where the recipient often has less control over who is providing the service to them and when they receive it. Traditional services for people with disabilities have been criticised by the IL movement and disability activists alike for focusing primarily on the health or care aspect instead of independence, self-determination and empowerment . Askheim, Bonfils and Hugemark refer to UPA as a 'contradictory ideological hybrid' because it attempts to combine two discourses that are often considered opposites. On the one hand, UPA is rooted in a social justice discourse, viewing disability as a concept that is produced and maintained by barriers in society . On the other hand, it builds on a neo-liberal discourse that emphasises marketisation and free consumer choice . Within public services, the latter discourse is perhaps best illustrated through new public management , which can, in short, be described as a political ambition to organise services based on inspiration from principles governing the private sector . In Norway, UPA was first introduced for adults with physical impairments who were able to be in charge of their own arrangement . In 2005, UPA became available as an alternative to children and others who required assistance in managing their arrangement By extending the 'user group' of those eligible for UPA, potential issues arose related to the IL ideology and consequently the political intention that UPA builds upon. As already mentioned, self-determination, independence, freedom, user control and selfrepresentation represent important aspects of UPA. However, children and young people under the age of 18 years are dependent on an external actor to organise and lead UPA on behalf of or in cooperation with them in order to receive it ). Consequently, having an external actor influencing day-to-day decision-making raises questions about how and in what ways UPA for this population is able to maintain the above-mentioned values advocated by the IL framework. Looking at the IL ideology and the principles governing UPA, these seem to be developed with an adult user group in mind with little attention given to children and young persons . This article is part of a research project focusing on UPA for children and young persons under the age of 18 in Norway. Through qualitative interviews with two cases, each consisting of the leader of the young persons' UPA and the children/young persons who received the arrangement, complemented by pictures taken by the families over a three-to six-month period, our ambition with this article is to discuss the following: Are the core values of the IL ideology as a foundation for UPA sufficiently adapted to the reality in which children under the age of 18 live their lives? The purpose of this paper is not to state any general tendencies regarding how UPA is applied or utilised within families per se. Rather, this article seeks to illustrate empirical examples of potential issues that may arise when applying an ideological framework intended for adults with physical impairment, capable of leading their own arrangement, onto a childhood context. UPA has the potential to increase autonomy, integrity, influence and participation for adults with disabilities . However, the values in the IL ideology intended to increase autonomy, integrity, participation and more, such as deinstitutionalisation, de-professionalisation and self-representation , may create challenges related to families where the child has UPA. This is because these values, as will be elaborated more in-depth below, do not necessarily conform directly to the idea of childhood and parenting. --- UPA IN A SCANDINAVIAN CONTEXT The Norwegian policy on UPA is similar to that in Sweden, where children and young persons under the age of 18 are covered by the same legislation as adults . However, Sweden is considering moving away from offering UPA as a welfare service to children and replacing it with alternative services . Despite UPA being an arrangement that exists in all three Scandinavian countries, it is only in Norway and Sweden where persons under 18 have access to UPA . In Denmark, there is a strong emphasis on the notion that the person who receives personal assistance must also be able to manage their own arrangements, meaning in principle that minors are excluded from having their services organised as UPA . There are also differences between the Scandinavian welfare states concerning how UPA is defined within the respective nation's legal framework. In Norway, UPA is defined as a health and care service, whilst Sweden and Denmark define it as a social service. This implies differences between the countries regarding which needs UPA is intended to cover. When UPA was introduced in Sweden and Norway in the 1980s and 1990s, the arrangements in both countries were firmly rooted in the IL ideology, whilst in Denmark the arrangement was argued to be both strict and paternalistic. In recent years, however UPA, when introduced, was intended to represent a radical alternative to existing services for people with disabilities. Instead of an external actor controlling how, what and when the person receives assistance or care, UPA seeks to transfer this power to the person in need of assistance. Thus, rather than be treated as passive recipients of health and care services, people with UPA would instead be provided with the power to decide for themselves when they wanted assistance, what they wanted to use their assistance for and who the assistants would be . Thus, self-determination is one of the multiple core values that UPA seeks to achieve on behalf of those who use the arrangement . NPM and free consumer choice imply a certain understanding of freedom and self-determination, where it is suggested that people have the capacity to experience full freedom and exert full autonomy in their own lives . This view stands in contrast to the social model of disability, which could be used to argue that choices and decisions are influenced by the structures surrounding the individual . Utilising user control and self-determination through UPA, as emphasised in the IL ideology, requires the ability to choose and make conscious decisions about what is in one's best interests . Self-determination and user control are closely related to one another as both refer to the control people have over major and minor decisions in their life . There are, however, potential issues between how UPA and IL define self-determination and the reality in which children and young people under the age of 18 live their lives. Children are subjected to certain social restrictions that affect their ability to be self-determined, such as legal age limits that prevent them from making certain choices and family members who may choose to inhibit decision-making alternatives. Further, the ability to choose what is in one's best interests also relates to the experience of choosing, where choice could be considered to represent the ongoing interactions between individuals and the multiple environments they are subjected to . This implies that the ability to become self-determining is not a static state, as appears to be suggested by IL, but rather a process where self-determination competence is practised through gradual trial and error. The ability to choose is not only a question of cognitive capacity. In order to choose what is in one's best interest, one must become familiar with the variety of available choices and have gained experience in predicting their potential outcomes. A child, who lacks life experience, might not know which decisions are beneficial and thus may need adult supervision and guidance in the process of making decisions on their own behalf . Further, the UN Convention on the Rights of the Child states that children are to be provided with the right to exert independence, autonomy and freedom. However, the Convention also states that children 'because of their age and considered immaturity are in need of extra protection and safeguard' . The UN Convention illustrates that at least two approaches to childhood need to be considered. Qvortrup argues that these approaches relate to the view of children as 'human becomings', where they are viewed as cognitively unready to utilise independence to the same degree as adults, or 'human beings', which underpins their right to independence, self-determination and freedom. Regardless of whether one views the ability to choose as a social skill or an innate feature, UPA for children and young people does complicate the ambition that the arrangement should provide full 'user control' and thus enable the person to be a fully self-determined and independent agent, since children and young people are often restricted by legal, normative and developmental barriers. --- DE-INSTITUTIONALISATION AND DE-PROFESSIONALISATION IL claims that people with disabilities need to be freed from institutions controlling their lives, which here refers to externally organised health care services provided at a physical institution or at people's homes . With the person no longer dependent on a centralised service provider, the intention is that the person receiving UPA is provided with both power Replacing institutions, i.e., traditional health care services, with free consumer choice reflects the neo-liberalist aspect of UPA . However, this causes potential issues when applied to children. Firstly, one can argue that the IL ideology has a rather narrow definition of institutions. It seems that the IL movement mainly refers to health care services when arguing in favour of de-institutionalisation . However, what seems to be lacking in the IL definition in relation to the present is an acknowledgement of the family as a relevant institution. This is important because it might have consequences regarding how independence and freedom are understood and utilised. Perhaps more concretely, as there are different actors involved in the UPA/family institution , there might be a variety of perspectives that need to be taken into account, and these may affect how independence and freedom are exercised within UPA for children and youth. When translating the IL ideology to fit the framework of UPA to children, a potential paradox emerges in cases where the person formally in charge of the arrangement has a double role because he is also a parent. --- THE FAMILY INSTITUTION: APPROACHES TO PARENTING AND PARENTS' DOUBLE ROLE As mentioned above, when UPA is arranged for children, it is often a parent or close relative who functions as the administrator/leader. In contemporary society, a parent is perhaps not to the same degree as before expected to be an authoritarian figure who demands respect and obedience from their children. Instead, norms regarding upbringing seem to expect that parents choose an authoritative approach, one characterised by a willingness to negotiate and be responsive to the child's needs . UPA, organised around the perspective of user control, self-determination, independence and freedom seems, to a degree, to support this idea of parenting . UPA might conflict with parental approaches where parents take a more authoritarian approach. In contrast to an authoritative approach, parents using an authoritarian approach would generally place high demands on their child without being responsive to the child's needs, and would lack flexibility and be unwilling to negotiate on the rules their child has to follow . Here UPA might be viewed as a threat to the authority of the parents as it will challenge many of the mentioned values present in the IL ideology. Further, it appears that UPA, as it is organised for children and young persons, also complicates the IL ideology's perception of the person as the foremost expert in their own life . Thus, UPA organised in this way can come into conflict with the full self-determination and user control that the IL ideology advocates for because the parent/leader of the arrangement might have perspectives that differ from their child on what constitutes a beneficial choice for their child/youth . In addition, since there is often a parent formally in charge of the arrangement, it may also create a conflict between the different roles this person has. For example, parents who are leaders in their child's UPA must balance a double role. On the one hand, they are leaders and administrators of UPA and are thus expected to ensure that the user benefits from the principles of user control and self-determination. On the other hand, however, they are parents that are expected to protect and care for their children, thereby ensuring that no harmful decisions are made. --- METHOD The data in this study were collected using qualitative semi-structured interviews combined with photovoice. The fieldwork consisted of two cases. Each case involved a person under the age of 18 who had UPA and the person leading the arrangement. In both cases, the leader was the user's mother. The children/young persons in the two cases were at the time 16 and 17 years old. Both written and oral consent were obtained from the child and their parents. Invitations to participate in the study, accompanied by a letter of consent, were distributed through userorganisations and organisations facilitating for UPA in Norway. The letter of consent was signed by all participants, which included the parent/leader of the arrangement and the child with UPA. In order to ensure anonymity, the declaration of consent was addressed directly back to the researchers. This ensured that the researchers had no knowledge of who had received the invitation to participate. In the same way, the organisations that distributed the invitation letters had no insight into who had agreed to participate in the project. Oral consent was obtained from all participants at the beginning of both the first and second interview, and they were also provided with information about the project, their freedom to withdraw their consent, the option to skip any questions experienced as being intrusive or unpleasant, and their right to anonymity. The researchers made sure that this information was addressed both to the child and their parents. Two interviews were conducted in each of the two cases. The time between the first and the second interview was, in Case A, approximately three months and, in Case B, approximately six months. All interviews lasted approximately one hour. Due to the ongoing COVID-19 pandemic, some adaptations were made when conducting the interviews. One interview was conducted with both researchers present at the informant's home. In two other interviews, one researcher was present whilst the other participated digitally. Finally, one was conducted digitally with neither of the researchers physically present. All interviews were conducted in the participants' first language, which was Norwegian. The data material was translated from Norwegian to English by the researchers afterwards. The decision to have both the child and the parent present served different purposes. Firstly, this article is concerned with family institutions and the everyday lives of families with a child who receives UPA, and it was therefore crucial to gain voices from different actors in order to identify the variety of values, perspectives, experiences and so forth that might be affecting the arrangement. Secondly, having the parent present was also considered necessary for practical reasons due to the children's impairment. One child appeared to have some difficulties comprehending some of the questions asked by the researchers whilst the other had verbal impairments that caused the researchers some difficulties when trying to interpret her answers. In the first case, the parent played an important role as mediator where she would assist her child in understanding the researchers' question by rephrasing it or trying to make her child remember situations or contexts relevant to the question asked. In the second mentioned case, the mother served as a translator in cases where it was difficult to understand the child's answers. There are some potential ethical issues arising from having a parent present during the interviews. Cuskelly argues that the power imbalance that occurs when studying children with disabilities is often greater than when studying children in general because they are often more dependent on external actors. We made various efforts to ensure that the presence of parents did not affect the answers given by the child. For example, the child with impaired verbal language skills was dependent on her mother to translate in order to communicate her perspectives. The researchers were aware of this issue during the interviews, and continuously made efforts to direct questions intended for the child to her alone. In addition, in cases where the mothers translated or in other ways spoke on their child's behalf, we asked both children whether they agreed with the answers given. In the interview guide, we also tried to make a clear distinction between the questions intended for the parent/leader and the questions intended for the child receiving UPA. Despite our efforts, we also acknowledged that the mere presence of parents did have potential impact on the child's answers. At the end of the first interview, informants were provided with an iPad and were asked to go out and take pictures of their everyday lives. The second interview was structured around Wang and Burris's photovoice methodology. Photovoice has a number of benefits when ). The participants in our study both selected the motif and chose which pictures should be included in the second interview. In addition, photovoice can promote inclusion and accessibility, as conversing over a photo creates a concrete reference point for the conversation, thus reducing the demand for abstract thinking and reasoning often associated with traditional interviews . This methodology proved beneficial in both cases, as the pictures provided a relevant context which assisted in communication and reduced the aforementioned communicative barriers between the researchers and the young persons with UPA. Based on the work of Wang and Burris , the study applied photovoice as follows: 1. Selecting-allowing the informant to choose which pictures most accurately reflect important aspects of their life: The informants were asked to choose five to ten of the pictures that they had taken. During the second interview, they were asked to elaborate on what they had taken pictures of, such as who/what were in the pictures, and what they were doing. --- 2. Contextualising-asking the informant to tell stories about what the selected pictures mean to the informant. In this step, the informants were asked why they had chosen the photos they decided to show us, what was going on in the pictures, why they had taken these pictures, and what was taking place before and after each particular picture was taken. --- 3. Codifying-identifying together with the informant those issues, themes and theories that emerged from contextualising the selected photographs. Here the participants were asked to share their thoughts, perspectives, experiences, etc., concerning what was taking place in the pictures . The idea of combining traditional semi-structured interviews with photovoice is that the analysis begins together with the informants who share their interpretations of the pictures they take . The themes that occurred when discussing the pictures were further analysed using a thematic case study analysis as presented by Creswell . This analytic approach consists of six steps that progressed as follows: 1. Data organisation: The transcripts from the interviews were sorted into separate files and imported into NVivo for further analysis. --- Reading and memoing: The researchers read the transcripts from start to finish. Initial notes on potential themes were written down. --- 3. Describing and organising the data into themes and codes: Codes were developed based on the issues, themes and theories that emerged from the informants' answers and from topics that emerged during the process of reading through the data material. --- 4. Classifying the data into codes and themes: Text sources were placed into different codes that were established in step three. The same coding scheme was used for all interviews in both cases. --- 5. Interpreting the data: The codes were here compiled under broader themes such as independence, user control, self-determination, self-representation and more. Those mentioned here were considered especially relevant for this article. --- 6. Representing and visualising the data: The data included in this article are represented in ways that resemble the themes mentioned under step five, which are further operationalised in the results section under the headings 'Independence' and 'User control and self-determination'. The child in Case B had impaired language skills, and some of the sound recordings were unintelligible. In the results, we have marked with parentheses those places where it was difficult to understand what the child said, i.e. . The study has been approved by the Norwegian Committee on Research Ethics . --- RESULTS --- INDEPENDENCE In Case A and Case B, both the mother and the child appeared to advocate independence as a core value that they wished to achieve through UPA: Mother A: You think that it is important that you get to choose where you want to live? Child A: Yes, I am very determined. The mother in Case B shared similar views with the mother in Case A, claiming that UPA enables her child to get a job during the summer and to get her own flat when she turns 18, and it provides her with the opportunity to hang out with friends without the need for her parents to be present. To live independently from her mother was mentioned as important by the child in Case B as well: Child B: It [UPA] makes it so that I can live alone. … If I want to spend time with friends, my mum does not need to be present. When I [eventually] move out … it will be very nice to be able to do things without having to be together with my family. There do, however, appear to be some differences between the two mothers regarding how to provide possibilities for their children to live independently. The mother in Case A seemed to view a gradual reduction in UPA hours as a means to accomplish the goal of independence. In relation to this, assistants appeared to play an important role in developing the child's independence, thus also gradually preparing the child for a life without UPA: Mother A: I think that the UPA arrangement should contribute so that she [the child] would need less assistance after each year, so we would reduce the number of hours [of assistance] each year. In our case they [the assistants] are not called assistants, they are called 'independence developers'. Though sharing the same value of independence, the mother in case B had a different perspective on how they would accomplish independence through UPA: Mother B: When she moves into her own apartment, we will apply for assistance 24 hours a day and then she would be able to travel a lot. It would become a completely different equation. Though more apparent in Case B than Case A, both parents seemed to share the goal of enabling their child to live as independently as possible once they reached adulthood, and UPA was viewed as an important tool in that respect. In Case A, the mother said that the child was, among other things, practising taking the bus alone. However, before she would be allowed to travel by herself, she had to first practice together with one of her assistants. Regarding Case B, the preparation towards an independent adult life appears to be a significant part and function of their UPA. The stated ambition from both the parent and the child is that the child will move into her own apartment after turning 18. In addition, they are gradually preparing a transition of power, where the child will eventually take formal responsibility for her own UPA. As part of this process, the mother gradually provided the child with more tasks related to hiring assistants and scheduling at what times she would like to receive assistance: Researcher: How do you [the mother and the child] divide tasks and responsibility … how are decisions made? Child B: We are often together [in decision-making]. Mother B: When we are hiring new assistants, she [the child] always takes part and we discuss together and, well, really she decides. … She sends messages herself if she wants to make changes to the assistants' work schedule. … She has become quite good at, well, running these things herself. The mother in Case B appeared to view the opportunity to enable her child to practise leadership in her own arrangement as a vital step towards becoming gradually more experienced in leading her own UPA: Mother B: I notice that it is important for [child], but I think it is exhausting to have… I think it is exhausting to have multiple people around me that I need to 'raise'. In addition, I always need to have a clean home. … Yes, I am tired of having people around me, I am, I am the kind of person that prefers being alone. So, it is incredibly exhausting, but I manage. I will manage a while longer. Child B said that if it were up to her, she would prefer more hours of assistance: 'I want more, I want a few more hours each month.' The mother seemed to acknowledge this but stated that 'I cannot have people here 24 hours a day.' The mother in Case B seems to struggle with the tension between her own preferences regarding how much time she feels comfortable spending with the assistants present in her home and her daughter's opportunity to receive the amount of assistance that she wants: Mother B: She [child] does wish that things were better in regards to me having assistants here because me being tired also affects her [child]. … We are negotiating things. I've said, you know, weekends are family time, but I think that, now that we have been together for the whole weekend it impacts on the atmosphere/energy here negatively. Child B: Yes. Mother B: Because she needs assistants, and I see that, and, yes, it is difficult being together [mother and child] without them. Child B: I want more. … Mother B: Yes, she [child] wants more but she knows that it is not possible. In Case B, there appeared to be a very clear difference in preference concerning UPA, i.e., regarding how much the assistant should be present in the everyday life of the child when at home. However, both the child and the parent seemed confident that this disagreement would be solved once the child moved into her own flat. Regarding Case A, they did not report any major disagreement concerning how they would run the arrangement in a way that maintained the interests of both the child and the mother. However, the mother shared some reflections concerning the double role that she had as both a mother and a professional leader, in relation to both the child and the assistants: Mother A: What has been a dilemma up until recently is that I am both a leader and a mother being present at the assistants' workplace and that can cause some insecurity. We also travel to summer-school in [anonymised place] you know, where the assistants live together with us. They have their own room and everything, but they are still present there. In this case, I am a mother and that is very, you know, we have an agreement about what is going to happen in advance, and we have briefly talked about things that, in a way, could turn out to be difficult. … In these cases, I think that the responsibility as a mother is closely connected with being responsible for the arrangement. You know, [the child] having a drinking party [translated from the Norwegian phrase 'rølpefest'] is not within the Working Environment Act. --- DISCUSSION The results presented in this paper seem to illustrate the claim that the IL movement's ideological framework does not sufficiently translate to UPA as an arrangement provided to children and youth under the age of 18 in Norway. By restricting the definition of relevant institutions to traditional health and care services, rejecting any form of external actor's influence upon the arrangement and demanding full user control, self-determination, independence and freedom on behalf of the user does not appear to reflect the reality in which children and youth find themselves. However, the informants in this study appear to have adapted some of the principles in the IL movement's ideological framework in order to make it function within their family institution. This suggests, as will be further discussed below, that even though UPA --- THE FAMILY INSTITUTION The double role that parents have in relation to their children when they also function as an administrator/leader in their child's UPA was demonstrated in both cases on an explicit and also seemingly implicit level. The mother in Case A argued that she was aware of the potential insecurities that being both a mother and a leader could cause and stated that it was not always easy to separate the two roles. On a more implicit level, she argued that having a party involving alcohol was unacceptable as it was not within the Working Environment Act. Though this might be the case, it can also be argued that ensuring that your underage child does not consume alcohol is part of the protective role one is expected to have as a parent. In Case B, the mentioned double role was perhaps most evident in the feeling that the mother shared towards having assistants present in their home. On the one hand, she appeared to acknowledge that having assistants was important for the child, but on the other, she claimed she struggled with having external people in her home. Consequently, she even occasionally overruled her child's preferences by saying that she does not allow assistants to be present on weekends. The issue raised by the mother in Case B is relevant in relation to acknowledging the importance of family institutions when it comes to UPA organised for this group. Similar discussions are also present in Axelsson , where the author argued that the preferences of parents or other family members affects the opportunities that the receiver of UPA has regarding when and where they wish to receive assistance. Hence, it underpins the argument that it is important to take the family institutions into account when discussing children's possibilities to apply the core values advocated in the IL ideology in their everyday life with UPA. The parents in both cases appear to take a somewhat authoritative approach to their children. Despite sometimes appearing to mix their roles as a parent and as a leader, and occasionally choosing to overrule their child's preferences in favour of their own desires, both parents seemed to be responsive to their child's needs and willing to negotiate and explain their position to their child . Viewing this in light of the IL ideology and neo-liberalist perspective of personal independence , it seems that neither an authoritarian nor an authoritative parenting approach is directly translatable to the personal independence, freedom and full user control advocated by the IL ideology and mediated through UPA . However, of the two approaches, an authoritative parental style appears to work best in relation to the IL framework. This is because parents who are responsive yet demanding and willing to explain their position to and negotiate matters with their child seem able to maintain their protective and caring role as parents whilst at the same time empowering the child to enjoy a degree of user control, selfdetermination and independence . --- PREPARING FOR INDEPENDENCE The ambition of this paper is not to question the values of the IL movement. The quest for independence, freedom and self-representation has been vital in relation to inclusion in society for people with disabilities . However, this article relates to how these aforementioned important values can be adapted in order to encompass the wider group of people currently qualified for UPA in Norway . In the current IL framework, there seems to be a discrepancy between how independence, self-determination and freedom are expected to be utilised by the user and the reality of how children and youth live their lives. Part of this issue relates to the family institution and norms about childhood in society, where it is not solely up to the child to decide what, how and when the arrangement should be used. In examining the results and the parental approach that appears to be present in the two cases, these mothers seemed to have adapted the principles developed by the IL movement. By combining their role as a mother with the role as leader, these families seem to use UPA as a tool to practice independence competencies. This means that full user control, freedom, self-determination and independence are not things that are necessarily practised to the full extent at present but instead something that UPA could help achieve for the child in the future. For example, the mother in Case A claimed that they defined assistants as 'independence developers', implying that the core function of the assistants was to support the child towards becoming gradually more independent. The mother in Case A exemplified this by describing how her daughter practised taking the bus with her assistants with the ambition that she would one day be able to do so herself. The mother in Case B seemed to hold the same view by claiming that she was gradually providing her child with more tasks and responsibility with regard to managing her own arrangement, with the end goal that her child would one day move into her own flat and lead her own UPA. However, the parents in Case A and B had different perspectives on how independence was to be achieved, where one claimed that independence meant gradual reduction in the need for assistants whilst the other argued in favour of more hours for UPA. Despite this, it appears that through an authoritative parenting approach, where the role as a caregiver and protector is combined with negotiation, sharing responsibility and so forth, both parents chose an alternative strategy with respect to independence that is slightly different from the intentions communicated in the IL ideology. --- CONCLUSION The main research question discussed in this article is as follows: Are the core values of the IL ideology as a foundation for UPA sufficiently adapted to the reality in which children under the age of 18 live their life? Based on the results, this article has discussed how two families appear to have adapted their UPA in order to make the core values of the IL movement, such as independence, work in combination with caring for the child and ensuring that they do not make unwise or inexperienced choices in life. In order to discuss this, the article has focused on whether the formulation in the IL ideological framework as a foundation for UPA sufficiently includes minors with disabilities. The findings in this study provide a useful starting point for further research into how UPA could be successfully implemented in the life of children with disabilities. The core values of IL as they are presented through the works of Ratzka and Dejong, Batavia and McKnew emphasise de-institutionalisation, de-professionalisation and selfrepresentation. As IL constitutes the ideological foundation for UPA, it is perhaps no wonder that the arrangement in both Norway and elsewhere was initially intended for an adult population capable of leading their own arrangement. This, in turn, seem to have created a rather narrow definition of what is considered to be a relevant institution, consequently overlooking family institutions which are undoubtedly important when discussing UPA as an arrangement for minors. Family institutions do in fact inflict limitations and restrictions on the life of children and youth, which ultimately hinder them in utilising independence as defined by the IL movement. The same is also true with other IL values, such as de-professionalisation and self-representation. We do agree with and acknowledge the fundamental rights of children with disabilities to state their opinions and influence matters concerning them, as stated in the CRPD . However, research suggests that parents, in addition to being responsible for their child's needs and wishes, must also be able to set clear boundaries on behalf of their child. Thus, there are limits concerning the degree to which all children and youth can be freed from control by external actors, which in turn impacts their ability to represent themselves and be independent. That being said, UPA is an arrangement that represents something fundamentally different from traditional health and care services provided to children and youth, and it does seem to contribute with increased possibilities for people with disabilities to participate in society. However, relatively few children and youth receive UPA in Norway compared to other age groups . Therefore, asking what it would take to increase the number of children and young people receiving UPA is an important question. As the current formulation of the core values of the IL ideology does not seem to sufficiently reflect the situation of children and youth, it may cause state and local authorities to be reluctant to present UPA to families. Parents themselves may also be reluctant to apply for UPA on behalf of their children because they might consider it too difficult to combine the principles advocated by the IL movement with the expectations that follows from being a parent. --- Snipstad and Vik Scandinavian Journal of Disability Research DOI: 10.16993/sjdr.931 Mother B: I gradually give her more tasks where she must reflect about things. For example, if we, if she is going to send a text to an assistant, we can discuss what she has written in the message, you know, what questions did they [assistants] have, what questions did they not have. I am trying to prepare her [daughter] to start thinking by herself how and in what way she needs to run the arrangement. Gradually providing the daughter with more responsibility appears to relate to the abovementioned ambition of one day moving out and running her own arrangement: Mother B: The intention is that, when she, well she is very prepared to move when she turns 18 and get her own place. Then the intention is that she will be, that you become the leader of your own assistants. --- USER CONTROL AND SELF-DETERMINATION In both cases, there was a tendency for the mother to speak on their child's behalf. It did not become explicitly clear why the mothers tended to do so, but it seemed on occasions that the reason for this might be to 'fill in' the gaps or elaborate on the child's answers to compensate for impaired verbal language. For the child in Case B, the mother's elaboration and translation of the child's statements received fewer objections from the child as opposed to when the mother in Case A intervened or made claims on behalf of her child. Mother B: it is not always easy to understand [the child]. If that is the case, she won't be mad or anything if you just … Researcher: If you help us to. Mother B: Translate. The quote above is an example of how this family communicated throughout the interviews. At no point during the two interviews did the child display discomfort with this way of communicating. In contrast, the child in Case A, appeared to often resist or disapprove of her mother's attempts to intervene or elaborate on the discussion, and the child seemed more determined to answer the questions herself. Two examples of this, illustrated in the following quotes, occurred when the child was asked about what she usually does together with the assistants: Child A: Hush. Regarding tensions or disagreement between the child and the mother/leader of the arrangement, there were also instances where the child and parent seemed to have different desires regarding how often assistance should be provided. This was most apparent in Case B. In this case, the mother argued that she was not overly fond of having people from the outside coming into her home and explained that she found this stressful. However, she also said that her daughter was very social and outgoing and claimed that if it were completely up to her daughter, they would have far more assistance at home: Mother B: to have assistants come into your home, I do think that is … I don't know if it is because I have been tired or if it is just me, but I almost can't stand having people in our home. [child] is very social and want things to happen around her. She is young, you know. It's been a, well, I think it has been difficult. This is also underpinned in the second interview with the same family: Researcher: Last time we talked, we talked about how it is to have assistants present in the house. How do you [child and parent] feel about this now? … More research is needed to present concrete suggestions for how the IL framework could be reworked to better encompass children and youth. However, when these core values are to be translated to a user group consisting of minors, the uniqueness of the structures influencing their life, such as the family, need to be taken into account. One potential way to go about this is to view independence, de-institutionalisation, self-representation, user control and freedom as processes where the child develops towards gradually becoming more independent, rather than as a state that the individual should benefit from in the present. Thus, it might perhaps be that assistants in UPA for children are not merely assistants but also 'independence developers'. --- COMPETING INTERESTS The authors have no competing interests to declare. --- AUTHOR INFORMATION

In Norway, user-controlled personal assistance (UPA) is a right for children under the age of 18. Based on the independent living (IL) ideology, the intention of UPA is to provide the person with user control, independence and more. However, in order to receive UPA, minors need an external actor to be formally in charge. Through a qualitative approach, this article discusses whether the ideological principles governing UPA can be utilised as intended in families where the parent is expected both to care for and protect the child as well as act as an administrator providing opportunities for the child to enjoy the IL principles. The findings in this article suggest that there may be a need to revise the ideological framework in order to better encompass the reality of childhood. Instead of full user control at present, UPA could be a viewed as an empowering tool in the process towards future independence.

Sebastián sits in the pew in front of me. He twists around to face me and begins talking about his work in the neighborhood. He has worked with drug users and their families for three years, running workshops and individual and small group counseling sessions at the center. He explains that this helps him understand many of the difficulties that his clients face: "Not just drug use, but also HIV, violence, anything." Sebastián places his arm on the back of the pew and asks, "You know about Enrique Pichon Rivière, right?" My blank stare sends him into a history lesson on how this renowned psychiatrist shaped the face of psychoanalysis in Argentina in the mid-20th century through his promotion of social psychology. His focus on group dynamics strayed from what Sebastián decries as the more individual-focused therapies of Sigmund Freud and Jacques Lacan. Sebastián proudly admits that this shift toward el contexto greatly influences his own work at the center. Sebastián continues to talk about his day-to-day activities and the challenges of working on such a delicate subject as drug use. "Drug use is always swept under the rug," he says with a shrug. "Parents, family, neighbors: nobody wants to admit to their role in it." Sebastián insists that the only way to approach the topic is to work with and within the community, to observe the dynamics of the neighborhood, to see the interactions between its members, and to understand the different factors that influence users' lives. In essence, he must understand the broader social context. To drive home his point, he touches my arm and says, "You're an anthropologist. You understand perfectly. It's exactly like Malinowski." Drawing an analogous link between his work and Bronislaw Malinowski's pioneering ethnographic method of participant observation is a telling sign of how Sebastián envisions his professional orientation to drug use and drug users. He considers knowledge of and participation in the social world of users to be a central part of his work. Like the ethnographer who strives "to grasp the native's point of view, his relation to life, to realize his vision of his world" , Sebastián spends time outside of the center to familiarize himself with the everyday environment in which his clients live, operate, and use. He socializes with members of the neighborhood and talks regularly with his clients as well as their partners, friends, and families on the streets and in their homes. These exchanges illuminate the motivations and pressures faced by his clients and he has a broad perspective on the issues he addresses at the center. This not only extends his frame of reference beyond face-to-face interactions with his clients but also presents potential avenues for intervention. The social, rather than solely the individual, is Sebastián's framework for understanding and intervening in drug use and its effects. This article considers the role of the social in the work of Sebastián and others in Argentina who approach drug use from a harm reduction perspective. "Harm reduction" is a public health model that emphasizes reducing the negative effects of drug use rather than eliminating drug use or ensuring abstinence . Based on extensive ethnographic fieldwork in Argentina, this article illustrates how harm reduction in Argentina is both envisioned and observed as a social practice by analyzing how Argentine harm reductionists position their efforts in relation to social context. This social focus is identified by these harm reductionists as characteristic of a "Latin" kind of intervention. They differentiate this from an "Anglo-Saxon" approach, which they maintain focuses overwhelmingly on individual health behavior change. In this article, I show how this mapping of social and individualistic orientations to interventions onto different cultural models serves multiple functions for Argentine harm reductionists. First, it guides their social orientation to drug use, risk, and harm by situating interventions in relation to the multiple milieus in which users operate and where drug use norms and "risky" behaviors are fostered and practiced. Second, it is a way for Argentine harm reductionists to differentiate their social form of intervention from the narrowly neoliberal one that they associate with much of the global North. As such, I argue that the construction of seemingly distinct cultural models of intervention-"Latin" vs. "Anglo-Saxon"-is a means of critiquing neoliberal approaches to public health that focus primarily on technical solutions to changing individual behavior. Ultimately, this construct acts as a political commentary on the limits of an individual-oriented harm reduction project when applied to the Argentine context. By engaging in a Latin kind of intervention, Argentine harm reductionists design and implement interventions that do not begin and end with the physical harms to the individual drug user. They consider their approach more holistic than an Anglo-Saxon one, with its purported neoliberal emphasis on instigating individuals to make informed choices about changing their behavior because it broadens the field of intervention to the user's family, friends, and community. This approach also allows them to focus on social harms that affect more than just the individual user through the promotion of socially-informed and practiced interventions. Pushing for this kind of harm reduction draws critical attention to the necessity of addressing and working within social contexts and conditions that influence drug use, risk, and harm, such as poverty, inequality, and social exclusion. It is important to note, however, that Argentine harm reductionists are not completely averse to said Anglo-Saxon interventions. They do utilize certain neoliberal strategies to promote behavior change among individual users. However, they recognize that while individually-focused interventions are important and serve particular purposes, they must be complimented by actions that seriously address the larger social context. For my informants, this is what differentiates the Latin kind of harm reduction from the Anglo-Saxon. While much research emphasizes how drug use, risk, and harm are influenced by social and contextual factors, this article extends the conversation by discussing how such a focus affects the conceptualization and delivery of harm reduction interventions on the ground. The aim of this article, therefore, is to analyze the particular social practice of harm reduction in Argentina and consider how it is informed by contextualized experiences. By investigating this practice ethnographically, I underscore the importance of studying how interventions are envisioned, developed, and performed in relation to sociocultural, political economic, and historical contexts by those who design and execute them. In doing so, I do not wish to paint an idyllic picture of harm reduction in Argentina but rather highlight the complicated-and often obscured-ways in which harm reductionists identify their targets and methods of intervention. Paying heed to the intricacies of these processes can help us understand why harm reduction programs conceived or used in one locale may succeed or fail in another. --- Problematizing the Social Anthropologists and sociologists have long examined the social in relation to drug use . Since the mid-20th century, such ethnographic illustrations of and theoretical reflections on the social dimensions of drug use were primarily a reaction to research that analyzed use from biological, psychological, and moral perspectives. This important work influenced countless studies on how the social, in its various forms, affects drug use experiences as well as users' everyday lives. In other words, they incited drug scholars to take the social seriously. One particularly fruitful way drug scholars address the social is to study the "social context" of drug use. Such analyses often conflate the social with context, sometimes referring to it as "setting" or "environment." This reinforces the idea that context is simply the ground upon which activity takes place. Serving more as a frame for behavior, context as a concept does not account for the dynamic interaction between "context" and "contextualized" . David Moore specifically argues that "social setting" is often imagined as the fixed backdrop to a drug-using scene; it is frequently applied to the act of drug use rather than dynamic processes that shape use. Cameron Duff similarly attests that the idea of context does not help explain how various human and non-human actors influence drug use events. As Moore states, there is "a richness and diversity of experience too often summarized under the narrow phrase 'the social setting of drug use.'" These issues touch on broader concerns regarding the social as both a topic and tool of analysis . Critiques frequently revolve around the identification of the social as a distinct domain of inquiry and action. Nikolas Rose , for instance, claims that recognizing the social as a domain sui generis is the project of all social sciences. Bruno Latour questions this analytic tendency by highlighting the problem of using "social" as a descriptor. He argues that employing "social" in this manner assumes that the social is a specific component that is different or altogether separate from other domains like the "biological," "political," and "economic." Such a division incorrectly marks such domains as "asocial." This process of domaining is indicative of what Latour claims is an outdated approach whereby "social context" is labeled as a specific arena of reality in which everything is framed and analyzed. He maintains that this is unproductive for understanding the world, and that providing the "social explanation" for phenomena should no longer be the project of social science . Such cautions are important to consider given the analysis of harm reduction presented in this article. But, while not discounting these critiques, I chose to pay close attention to how the social is identified and mobilized by my informants. I consider this worthy of study as it provides invaluable insight into how my informants themselves frame and approach drug use, harm, risk, and their broader project of intervention. By focusing on the emic perspective of my informants , I prioritize what the social signifies to them rather than myself in order to more clearly recognize and examine that meaning and its attendant activities. The analysis presented below demonstrates that Argentine harm reductionists equate the social with social context. This means that the social, as they recognize it, encompasses the broader factors and forces that shape the people, practices, and places that are their targets of intervention. Their focus on social context arguably aligns with the risk environment framework for analyzing and addressing drug use, risk, and harm. A "risk environment" is a physical or social space in which a range of factors exogenous to the individual interact to produce risk and to increase the chances of harm . Taking seriously the social foundations of drug use and risk, this framework promotes an understanding of harm as contingent on the social situations and environments in which users operate . This framework critiques how public health typically emphasizes the role of individual behavior in producing and reducing harm. The behavioral focus of HIV/AIDS prevention projects aimed at injection drug users , for example, is criticized for this focus . Understanding HIV risk requires looking at the social and structural factors that influence and shape risk practices and vulnerability to harm . In fact, anthropologists have decried the behavioral focus of HIV prevention since they first engaged in HIV research with IDUs in the late 1980s . They demonstrated the shortcomings of such interventions and called for interventions and research that take context into account. A similar critique is made of harm reduction programs that underscore individual behavior change. Tim Rhodes suggests that such a focus fails to capture the ways in which risk, harm, and drug users' perceptions of risk and harm are context-dependent. Moreover, the individuation of harm reduction and responsibility obscures the influence of power inequalities related to such factors as race, class, gender, and sexuality as well as political economic conditions in shaping harm and responses to interventions . As Philippe Bourgois asserts, drug use and harm are "virtually meaningless outside their sociocultural as well as political economic contexts." By linking social context with a Latin form of intervention, Argentine harm reductionists are making a statement with their social orientation to harm reduction. They label their work as "Latin" in order to distinguish it from and critique Anglo-Saxon interventions precisely because the latter are perceived as adversely decontextualizing drug use, risk, and harm in favor of individual behavior change models. --- Methods Fieldwork was conducted over the course of sixteen months in Buenos Aires and Rosario, the metropolitan areas with Argentina's greatest concentration of drug users . This included a two-month preliminary visit in 2006 and fourteen months of fieldwork from September 2007 to October 2008. Data was collected using several methods. First, participant observation was carried out with two of Argentina's foremost harm reduction NGOs.2 This included attending meetings, researching and writing reports, participating in advocacy projects, and accompanying NGO members to interventions and trainings at clinics, hospitals, and other community locations. I also accompanied NGO members to conferences and events related to drug use, harm reduction, and HIV/AIDS in order to observe how information and experiences were exchanged at the national, regional, and international levels. Second, over fifty interviews were conducted with individuals working on drug use and HIV/AIDS, including members of the above-mentioned NGOs, public health professionals, psychologists, medical doctors, social workers, community organizers, and government employees. Interviews focused on harm reduction, HIV/AIDS prevention and treatment, drug policy, prevention, treatment, and use, and the work of national and regional harm reduction and drug user networks. Third, participant observation and interviews were supplemented by archival research on Argentine government and civil society responses to drug use and related health issues. This literature consisted of scholarly articles and books, government and civil society reports, organizational newsletters, and newspaper and magazine articles. This also involved an analysis of documents produced by organizations and individuals with whom I conducted fieldwork. The majority written in Spanish, these documents largely concerned harm reduction, drug use, drug policy, HIV/AIDS, and other health concerns, and included scholarly articles and books, policy reports, conference proceedings, research studies, newspaper and magazine articles, and intervention materials. Fieldnotes from participant observation, interview transcripts, and literature were analyzed for key themes. A coding system was developed to further refine the data through the classification of sub-themes to establish a structural framework for organizing the analysis presented in this article. --- A "Latin" Kind of Intervention The role of the social in determining where, how, and with whom harm reduction is carried out in Argentina was first made evident during a conversation with Cecilia, the intervention coordinator of a harm reduction NGO. "We do a Latin kind of intervention here," she said. Puzzled, I asked, "What do you mean by a 'Latin' kind of intervention?" She elaborated, "Well, it's more common in the Anglo-Saxon world to focus on individuals or specific populations. Here, we do more community outreach. We focus on the social context, on the users, their families, their partners." As our conversation progressed, she explained what made this type of work recognizably "Latin." What Cecilia described was not a uniquely "Latin American" modus operandi. Rather, it signified a social-oriented approach that she and several of my other informants associate with Latin America and the "Latin" European countries of Spain, France, Portugal, and Italy. Cecilia spoke of a "cultural connection" between the approach used in Argentina and those employed in these locales. Her reference to "Anglo-Saxon" interventions, conversely, denoted an individualistic, technical approach that she and other informants identify with most countries in the global North, particularly the United Kingdom, Australia, Canada, and the United States. She clarified: Basically, what I see in more Anglo thinking is cause and effect thinking. When I listen to someone Anglo speak, it is always very clear. If this happens, then this happens. Or if A happens, then B happens. For me, that construction of social problems is a very Anglo construction. For me, a more Latin construction is where there is complexity. If A, then B doesn't happen, or B, C, D, and E happen at the same time…. So, when you see a harm reduction program in England, there are a bunch of rules to follow. If a guy does this, you do this. If the guy does another thing, you do this other thing. And if the guy does this, you do that. I feel that in our situation, that way of constructing an intervention doesn't work. Cecilia's description of two distinct approaches aligns with what María Epele and Mario Pecheny describe as a tension between "North-framed" neoliberal models of public health and Latin American social health models. The prevailing approach in the Anglo-Saxon world, they claim, promotes individual self-care and self-cultivation. The individual is considered a rational actor who makes sound decisions based on the costs and benefits of particular behaviors. 3 Therefore, intervention is organized around how to alter individual actions. Epele and Pecheny argue that this Anglo-Saxon behavioral model of intervention does not align with the Latin American tradition, which situates health and illness within social relationships, everyday interactions, and political economic conditions. 4 My informants recall that harm reduction in Argentina was initially a response to their country's HIV/AIDS epidemic in the mid-1990s, when alarming rates of needle sharing and HIV infection among IDUs were first reported . By 1999, approximately 41 percent of all AIDS cases in the country were attributable to drug use . Consequently, Argentina had one of the highest rates of drug use-related HIV prevalence in all of Latin America. To counter this trend, Argentines began designing and carrying out projects at the individual level. Some interventions still focus on individual behavior change, such as the distribution of condoms, needles/syringes, and information as well as workshops on safe injection and sex. Individual users are taught how to use these devices and informed of the health risks associated with sharing or not properly using these items. Information pamphlets, for instance, are emblazoned with catchy slogans that speak directly to the user: "Jugá seguro: Usá preservativo." ; "Si te picas, tomá menos riesgos." ; "¡Para cuidarte del SIDA, se usa una vez y se tira!" ; "¡Loco hacete cargo! No compartás la jeringa." 5 3 Notably, however, many public health scholars in Anglo-Saxon countries, particularly those focused on social determinants of health and community health research have critiqued rational action theory. 4 Several social health movements in Argentina, such as Latin American Social Medicine , social psychology , and the salud mental movement , situate health and illness within social contexts, relations, and processes. 5 For additional research on health materials that promote individual responsibility or drug users, see Dodds 2002 andFraser 2004. These activities are illustrative of the Anglo-Saxon approach to health because they promote individual responsibility for modifying behavior through technical interventions. Harm reduction as a public health model is rooted in this neoliberal conviction that users are capable of changing their behaviors, making rational choices for improving their health, and reducing the risks of drug-related harm . My informants recognize that they have historically relied on this kind of selfgovernance when endorsing behavior change, particularly when working with IDUs. Nevertheless, their interventions do not stop at the individual; she and her behaviors are not the only targets. Rather, with the social in mind, they design interventions to be implemented in the very contexts where drug use and risky practices take place. Such work cannot be done without negotiating what Cecilia calls the "social fabric" where these activities are situated. This means working in and with the communities where interventions are implemented. --- On the Ground Working in el terreno or el campo is an essential part of harm reduction in Argentina. It helps workers recognize what is taking place on the ground and better enables interventions "to take hold," as Cecilia puts it. This type of work is not unique to Argentina, as it has a long history in many parts of the world . My informants, however, believe that this type of work is no longer dominant in Anglo-Saxon countries due to what they perceive is a shift toward more technical solutions to individual problems rather than community-based interventions. They are adamant, rather, that a Latin form of harm reduction prioritizes working on the ground because it allows for more nuanced and contextually appropriate actions. Aligning their work with a Latin kind of intervention, rather than an Anglo-Saxon one, is one way of distancing their efforts from those they deem decontextualized and too narrowly focused on individual behavior. It also validates the importance they attribute to working on the ground in designing and implementing harm reduction projects; it signifies a privileged and necessary space of intervention. Working on the ground takes many forms. The most visible, el recorrido are carried out weekly, semi-weekly, or daily by community operators around their neighborhoods. These outreach workers serve as liaisons between organizations, drug users, family members and friends, and neighborhood institutions. As members of the community, they are well positioned to establish contact with local users and their families and friends; provide them with condoms, needles/syringes, information, and advice; and learn about drug use in the area. As one outreach coordinator declared, "Our community operators are the key to whether an intervention is going to be a success or a failure." During my fieldwork, I shadowed several community operators on their rounds. One I regularly accompanied was Agustín. Walking beside him, I saw how he effortlessly navigated his way along the streets and dirt paths of his neighborhood in Rosario and the adjacent shantytown, carefully skipping over stagnant pools of water and dodging children as they rushed through alleys and narrow corridors lined with scraps of wood and sheet metal. Having lived in the area his whole life, Agustín knows these streets and its residents well. He talks to both friends and strangers and hands out materials to drug users and their families and friends dispersed throughout the area. Reflecting on the many challenges of working in these communities, Agustín often mentioned how most users do not go to clinics or hospitals for general healthcare, let alone for drug-related issues, a point that many other community operators also made. "So many of them are intimidated for different reasons and just don't go. So outreach is absolutely necessary," he told me. Pointing to the ground, he added, "Working out here in the street is the best place to do this kind of work." Another community operator I accompanied was Ignacio, a former drug user who works in a city along the northern edge of Buenos Aires called San Martín. Ignacio spends a lot of time on his rounds talking to young men on street corners and plazas where they congregate to smoke and drink. He greets each one with a kiss on the cheek in typical Argentine fashion and chats about whatever topic comes to mind. After a few minutes, and before moving on to the next group a few blocks away, he gives them condoms and pamphlets on HIV, drug use, and safe sex. As we walked around San Martín one night, he gestured to the people dancing to music and drinking beer on the curb and commented, "Everything seems happy right now because it's Friday night. People are drinking, hanging out, listening to their music, but there is a lot of misery here." Ignacio, like other community operators, sees his experiences as an asset to community-based work. This is why he is well-suited for this job: "I've used drugs. I've been depressed. Many people are suffering here, and I have suffered, too. I can identify with what these people are going through." The inclusion of current or former drug users like Ignacio in outreach has proven useful to harm reduction interventions around the world . Although not uniquely "Latin," this practice is once again considered by my informants as less necessary in the Anglo-Saxon world because of the seeming shift away from community-oriented and socially-based approaches. Emphasizing the importance of social context and actors in their interventions is part of my informants' attempt to distinguish their form of harm reduction from that of their Anglo-Saxon counterparts in the global North. They consider the incorporation of current and former users as vital rather than peripheral to harm reduction, as a way to access users that are difficult to identify and contact. 6 Recalling one of her NGO's first projects in the late 1990s, Cecilia explained just how critical current and former users were in designing and implementing community interventions. She described them as a "bridge" between users and professionals, opening many doors and providing contact with user networks. In fact, the home of a former user served as a space where NGO members conducted workshops and where users could go for needles/syringes, condoms, and information. What made this space so useful was the fact that it was known among users as a place where they could casually and safely come together. The physical location of this space as well as the presence of community operators within the neighborhood points to the recognition on the part of my informants that harm reduction interventions must also be delivered within the community. Places like the former user's home and the one described in the opening vignette are spaces where harm reductionists can literally set up shop. One NGO, for instance, has a consultation office in a small community health clinic in Avellaneda, a city just south of Buenos Aires. A poster asking, "¿Sabían que se pueden reducir los daños del consumo?" , greets people as they seek advice or information, pick up condoms and needles/ syringes, and learn about services inside and outside their neighborhood. For a population with generally little to no relationship with formal health institutions, these offices are important apparatuses for connecting with drug users and bringing them into the fold.7 These places also host workshops and meetings for drug users as well as their families and friends. Belén, an outreach coordinator based at the consultation office, runs a weekly support group where mothers discuss their child's drug use and the problems they and their families face as a result. When the office first opened, family members came forward, and although many were strangers, they soon recognized that they had similar concerns. They shared stories and strategies through their common experiences, what some informants called "material and affective exchange." These conversations and collaborative work provide Belén with a useful window into the goings-on of the neighborhood as well as another avenue through which to address the diffuse social harms that stem from drug use. Working on the ground also entails building good relationships with community institutions. One way this is accomplished is through outreach with professionals in order to promote harm reduction at the institutional level. Trainings are organized around sensibilización of harm reduction and reflexión on drug use and the provision of services in the community. During one such training at a neighborhood clinic, for instance, an outreach coordinator named Facundo explained to the room of doctors, nurses, social workers, and administrators what he meant by "harm reduction," what interventions his NGO promotes, and what support the NGO could provide to their clinic. Facundo posed questions to the staff to provoke contemplation and conversation, focusing mostly on how users are received at the clinic, what obstacles users face in accessing services, and what information the staff lacked in order to best serve their patients. Engaging in such activities and creating connections with institutions-be they clinics, youth centers, or recreation clubs-assists harm reductionists in mapping the institutional layout of the communities where they work. This helps identify potential sites of collaboration and intervention and ensures that harm reductionists have a sustained institutional presence and influence in these communities. --- The Primacy of Context Much of this work on the ground aims to reduce the harms that drug use poses to individual and public health; the sharing of injection, sniffing, or smoking paraphernalia; unsafe sex; and the volatile mixing of substances all have their corresponding interventions. This kind of community work has proven crucial in reaching "hidden populations" of drug users through various harm reduction programs, particularly those related to HIV prevention. The harm reductionists with whom I worked, however, pointed out that too narrow a focus on health and drug use might actually miss the mark. Such a singular mission to reduce the physical harms of use draws attention away from the myriad of social harms that also affect users' everyday lives. These harms may not be direct consequences of drug use but can contribute to it and the numerous issues that harm reductionists seek to address. A psychologist at a community center named Martina explained that her work with drug users means inevitably attending to these other issues. The center is located on the outskirts of Villa 1-11-14, one of the largest villas in Buenos Aires and home to mostly poor immigrants from the provinces and countries along Argentina's northern border. Martina is part of the center's outreach team that works in the homeless encampments scattered throughout the villa. She shared her thoughts on why harm reduction necessitates a broad social orientation: It seems to me that reducing harm and risks here is not only related to drug use. It also deals with the social situation. We think a lot in those terms. We have an orientation very close to France, for example, where we locate ourselves in the society in which we're living. So, what we do is deal with the issues of getting users closer to services, resolving legal problems, finding them housing, and many times dealing with other social issues simultaneously, other things that do not directly relate to drug use or health. The issues she identifies are what many Argentine harm reductionists consider to be part and parcel of working in low income and impoverished communities. Several members of one NGO similarly explained that harm reduction in contexts of poverty and social exclusion requires reaching beyond drug use and physical harms. Structural issues such as violence and lack of housing, education, and unemployment must also be considered and, when possible, addressed. This position echoes a conversation I had with Belén after a panel at an international harm reduction conference. She was irritated that she could not identify with the content of many of the presentations, especially those by panelists from the United States and the United Kingdom. The subjects and contexts these panelists discussed were vastly different than those in Argentina because they addressed issues far beyond users' basic needs. Belén was particularly shocked that the presenters did not begin with or even mention the socioeconomic conditions or educational backgrounds of the users with whom they work. "These are so central," Belén said. "I would have mentioned them first!" She was not devaluing or dismissing what the panelists were saying, nor the types of interventions they discussed. Rather, her priorities as an outreach coordinator are simply different when the needs of so many users and their families are not being met. She asked me rhetorically, "How can anyone think of doing harm reduction without also dealing with all of these other issues?!" What Martina and Belén point to is the necessity of a social approach to harm reduction that draws in part on a structural perspective. This aligns with the "risk environment" framework for understanding and reducing drug-related harm. The importance that this framework assigns to context clearly speaks to issues raised by my informants regarding the limits of individual-oriented interventions. It is not only the place, the "where" of drug use and harm reduction, but also the various structures and factors that produce and reproduce them. Epele and Pecheny argue that such factors must play a central role in shaping how harm reduction is designed and practiced in Argentina. While the concept of "harm" underlining the majority of interventions in Anglo-Saxon contexts are usually confined to the individual health consequences of drug use, they suggest that the concept be expanded to include harms associated with the social and political economic factors influencing use and users' everyday lives. In essence, there is a need for continuous social "recontextualization" when it comes to designing and promoting harm reduction in Argentina. --- Conclusion Julián, the secretary of a harm reduction NGO, made the following remark as we talked in his office: We have to try to construct an Argentine view of harm reduction. We do not have to reproduce experiences, but take those experiences and construct them from our point of view in Argentina, from the point of view of health professionals, scientists, lawyers, anthropologists, drug users, and leaders of community organizations. So, in that sense, we must force ourselves to find an Argentine point of view in the presence of the Argentine particularities. As Julián indicates, harm reductionists in Argentina are crafting a form of harm reduction based on the particulars of their social context. This article ethnographically illustrates how Argentine harm reductionists envision their work as a social practice that is framed by a cultural distinction between Latin and Anglo-Saxon modes of intervention. In examining the intricacies of this distinction, I presented how a social point of reference-rather than an exclusively neoliberal alignment-shapes how harm reduction is carried out in Argentina. My informants use this distinction to illustrate the limits of individual-oriented interventions, especially those designed for and used in different environments, in addressing the specifics of drug use, risk, and harm in Argentina. Indeed, neoliberal interventions conceived and used in Anglo-Saxon contexts are not designed around Argentina's specific sociocultural, political, and economic circumstances. Such decontextualized, individual-oriented interventions do not get the job done in this Latin context. The social practice of harm reduction in Argentina, therefore, challenges the universal applicability of neoliberal harm reduction programs. Well versed in the history and current trends of harm reduction at the international level, my informants are acutely aware that certain elements of their self-identified Latin approach to harm reduction are present in other parts of the world, including Anglo-Saxon countries. They fully acknowledge how various organizations and even some governments have targeted and politicized the social through harm reduction. Groups like the Junkie-Bond drug user union in the Netherlands, Vancouver Area Network of Drug Users in Canada, and AIDS Coalition to Unleash Power and Voices of Community Activists and Leaders in the United States were historically driven by grassroots efforts and community organizing. My informants, in fact, have used the work of these organizations as examples for their own social-oriented interventions. Nonetheless, they maintain that harm reduction in much of the global North, particularly in areas where the Anglo-Saxon mode of intervention dominates, is becoming increasingly mainstream and normalized toward a neoliberal approach to health and individual behavior. 8 For Argentine harm reductionists, this is useful for the specific purpose of promoting individual behavior change. However, it is not useful for addressing social forces that affect drug use and users. The social still weighs heavily in the design and implementation of community-based and context-specific interventions assembled under the banner of Argentina's harm reduction.

Harm reduction" is a public health model that places emphasis on reducing the negative effects of drug use rather than on eliminating drug use or ensuring abstinence. Based on sixteen months of ethnographic research, this article examines how harm reduction in Argentina is both envisioned and observed as a social practice by analyzing how local harm reductionists position their work in relation to "social context." My informants consider this social emphasis to be characteristic of a "Latin" kind of intervention, which they differentiate from an "Anglo-Saxon" approach focused on individual behavior change. Differentiating between these "cultural" models of intervention helps Argentine harm reductionists guide their social orientation to drug use, risk, and harm by situating interventions in the contexts in which users live and operate. It also allows them to distinguish their social form of harm reduction from a neoliberal one that they associate with the global north. The construction of these distinct cultural models of intervention is a means of critiquing neoliberal approaches to health that advocate technical solutions to changing individual behavior. Ultimately, this construct acts as a political commentary on the limits of an individual-oriented harm reduction project when applied to the "Argentine context." Keywords drug use; harm reduction; social context; public health; Argentina I'm waiting for Sebastián, 1 a counselor at a drug counseling center, as he talks with a young man in the next room. The center operates in a space on loan from the Catholic Church, allowing Sebastián and his colleagues to conduct their meetings within this neighborhood of Rosario, Argentina. Doubling as both a counseling center and a place of worship, the main area is comprised of a small altar, a handful of pews, and a crucifix. Photos and drawings adorn the walls; I am surrounded by saints, popes, and Claudio "Pocho" Lepratti. A member of several neighborhood organizations and the director of a community kitchen, Lepratti was murdered in the December 2001 riots during Argentina's most recent economic crisis. As the police opened fire around the school where Lepratti worked, he climbed on the roof and shouted a now famous phrase: "Hijos de puta, dejen de tirar que hay pibes comiendo!" (You sons of bitches, stop shooting! There are kids eating!). Fatally shot, he became a martyr for the poor, a symbol of social activism, and a local folk hero. 1 Informant names have been changed to ensure confidentiality.

Introduction: Incest is categorized to be a form of sexual abuse that contributes to the establishment of a sexual relationship between a man or a woman, a woman and woman, and a man and man that are more likely to be subjected as close relatives. This sexual relationship is legally, ethically, and morally forbidden from marriage. The category of sexual abuse is also regarded as a blood type that can lead to the development of a sexual relationship between a brother and a sister, a father and a daughter, and a mother and her son . The prevalence of this sexual abuse contributes to causing multiple harmful effects, including physical, sexual, and psychological challenges to the victims. It also leads to cause multiple harmful effects, including marital difficulties and increased risks of physical and emotional abuse of children . This incest delivers closeness within a relationship in a family that lacks proper nurture and affection. The impact of such a relationship negatively influences families and children and demands a psychotherapist's involvement to pay some attention to it . The inference from the report of Haaretz dictated that the prevalence of incest cases varies between 4 to 52% in different geographical locations. The empirical research has also dictated that it has pertained to a sexual relationship that involves fathers molesting their children. However, most of their psychotherapists also dictated that the brothers towards the victims usually practice this molesting behavior. This issue has been significantly increasing along with other forms of sexual abuse; however, it still a lack of awareness regarding the problem . Many of the theoretical and contextual perspectives can be utilized to describe the practice of incest and to develop its understanding. From a contextual perspective, the incest phenomenon can be better understood responsibility among the older siblings. This is how the older siblings can utilize their power to practice child abuse, known as incest . Based on the above-described context, it has also been dictated that the frequency of child maltreatment has been widely increasing on a large scale due to the presence of different social problems and the involvement of children, their families, and society All these factors do have a major impact on negatively impacting the children. Most of the social and environmental factors also contribute to letting them practice sexual behavior. Although, many of the efforts are considered to provide these children with basic services and involve clinical and forensic interventions . The increased child maltreatment and other factors contribute to causing an increase in the sexual abuse known as incest within Israel. Most Muslim women associated with Arab Israel are more likely to suffer from sexual abuse due to different factors associated with the Israeli system. The differences between Israeli culture and Western societies and other cultural and political factors cause an increased prevalence of incest . The cultural context of Israeli Arab society has dictated that it is largely characterized due to the presence of traditional collectivist orientation and different values of harmony, considering reputation within the family, social cohesion, and satisfying the needs of others at both the social and family levels. These characteristics greatly impact the development of a challenging cross-cultural encounter with the Jewish majority within the country. These encounters contribute to causing multiple social changes within society and the division of roles within the family . Based on the above-described cultural context, one of the significant manifestations that are involved in the social change in Arab society within Israel associates with the status of adolescents and children. This social system and the traditional structure devalue the children's identity based on their feelings and desires . Other than this, the parent-child relationship within Arab Israel is also characterized as dominant and submissive. The emergence of this dominant and submissive relationship between children and parents is one of the major factors that contribute to threatening the child. The same is the case in the sibling relationship in which the older siblings are characterized as dominant while, the younger ones are submissive. This dominantsubmissive relationship is one of the key reasons why an increased prevalence of incest has been addressed . Other than the social and cultural abandonment, parents of Arab Israeli families also highly contribute, causing an increased incidence of sibling incest, in the presence of extramarital affairs, and parental infidelity results in family abandonment. This scenario explains that sibling incest is the efforts of children to compensate for emotional deprivation and increase the chances of emotional attachments to decrease the risk of family disintegration . Generally discussing, despite the Arab Israel nation, others nations also have an increased prevalence of incest based on psychological, cultural, and family factors. All these three factors are quite common and highly contribute to increasing the chances of incest. The occurrence of incest involves the presence of a closely guarded family secret. This increased occurrence of incest demands a focus on child abuse prevention strategies, due to which physicians and psychotherapists play an important role in dealing with this issue This issue is not subjected to be discussed openly because of its association with societal taboos within Arab Israel. Within Arab Israel, incest is becoming a sinful and illegitimate relationship between non-married persons. It is categorized as a serious sin within Islam, Israel's Middle East, and the Palestinian population. Islamic law has also dictated that these sinners are publicly punished for their sexual acts. Another aspect associated with Arab families is that they are sensitive to fadiha. It suggests that they fear the scandal that can result in causing damage to their reputation within society. This context is defined by the fact that these other families are subjected to hiding these kinds of scandals, especially incest. This fear is also augmented due to the involvement of a dominant external locus that can influence the collective norms . Moreover, their abusive parents also tend to hide these sorts of abuses from the family to maintain their reputation. In such a relationship, the victims usually fail to seek outside support, and the abusive parents usually consider managing their public image. Within the traditional Arab communities, these sorts of sexual relationships are also categorised to be as highly harmful to their honour, impacting the images of the families . The cultural conceptions of the Arabs also involve that most families prefer to go for honour killing to maintain their reputation. All these Arab norms are associated with different sectors of Middle East Arab society that do have a significant influence on incest, as per the claim of Schetky and Green . All the above-described conceptions and perspectives have a major impact on muting the professional discourse to deal with incest in Arab society. But along with the advancement of time and globalisation, information has started to emerge all over the Internet due to the increased awareness of addressing the issues associated with incest . Many factors are associated with the prevalence of incest, and the abusers considered the involvement of different strategies to practice this unethical and illegal conduct. --- Figure 1: Different kinds of refrigerators and their strategies The above figure presents different kinds of refrigerators and their strategies. The type of preparators that are usually involved in practising incest includes fathers, grandfathers, stepfathers, siblings, cousins, and their friends. These perpetrators consider different strategies to practice sexual violence against the victims . The three major strategies usually considered in its list by the fathers or grand or stepfathers include the exchange of favours, paying, sex commodification, extortion, physical and psychological threat, and sexual violence. At the same time, incest among siblings, cousins, and friends is based on the consideration of gameplay and normal and habitual fun . Among all the above-described factors, physical aggression, credibility, and violence are among the most emerging factors, along with the prevalence of torture. All these dynamics also contribute to increasing the prevalence of sexual relationships between family members. Different sorts of incestuous relationships have different bases and factors that impact them . Throughout history, there have been different forms of intimacy within the family setting that usually leads to cause the emergence of sexual violence. Although the government has set different rules and the involvement of different clinical experts to deal with this sort of traumatic effect still, most individuals do not prefer to discuss this issue with legal and professional bodies . Also, the government has been focusing on the control and prevention of incest practice, But still, it has been dictated to me as an emerging issue. In most of their cases, the preparators are usually reported male adults, and the victims are young female girls. This issue has been underestimated in most societies. Besides this, one of the most commonly involved factors is the involvement of distributed family relationships. The presence of distributed family relationships contributes to shifting the individual responsibilities and expectations among the siblings, which can lead to cause incest The practice of this sexual violence demands the consideration of a psychotherapist to deal with the traumatic events. They also face future characterisation, including a lack of self-esteem, impaired interpersonal relationships, and post-traumatic stress disorder. It also imposes the psychotherapist to involve different strategies, including family and individual therapy, to deal with these problems and to incorporate appropriate strategies to address them. --- Figure 2: Flow Chat for Mother-daughter relationships Based on the above-discussed flow chart, mothers play an important role in addressing the issue of incest. The two major categories of incest include that the mothers do not align with the perpetrators and, in most cases, are allied with them. In the case of aligning with perpetrators, the strategies they consider to involve include denial, minimisation, victim blaming, sex commodification, and the role of exchange with the daughter. All these factors are also involved in the emergence of incest . Many social and cultural factors are involved in the prevalence of interest within the Arab Society of Israel. These factors are supposed to be considered by policymakers to avoid their prevalence within this sector. The government must also introduce legal values and legislation to control the issue. To address future traumatic events, there is a need for psychotherapy to adjust to post-traumatic stress disorder and the traumas the victims face . Many cultural and societal factors are associated due to families preferring to go for e-therapy to provide treatment to the victims who suffer from incest. Fear of maintaining privacy and COVID-19 are some factors that the sexually abused families prefer to go for e-therapy. The psychotherapist plays an important role in treating patients move to suffer from incest . The background has dictated that most families suffer from sexual violence due to previously present mental health problems. The families who are present in the aftermath of the sexual abuse are highly subjected to be impacted by different traumas due to which E therapy is provided to these victims. Also, sexually victimised children feel severe emotional trauma which is one of the major concerns of the professionals in providing them with therapy . The psychotherapist considers many of the theoretical implications and strategies to deal with the victims of incest. Even in the case of e-therapy, the psychotherapist needs to be aware of different factors that can worsen the situation of the victims. These symptoms include interpersonal difficulties, clinical syndromes, and personality traits. Considering all these factors has an impact on controlling the traumatic events faced by the children. Within the online platforms, the therapist-patient dialogue focuses on rapport building . The pretreatment phases are essential in developing a positive relationship between the psychotherapist and the victims. While within the later phases of treatment, the psychotherapist played an influential role in discussing different symptoms and traumatic issues faced by the victim. These symptoms include suicidal feelings, dissociative phenomena, distorted self-image, sexual disturbances, and substance abuse. All these factors are essential to be considered by the psychotherapists to provide these victims with treatment The presence of the incest experience might involve different mental health challenges and societal fears that psychotherapists also consider. The professionals also focus on the abnormal personality traits and attitudes of the incest victims. Some examples that are usually considered to examine the personal traits of victims include said activeness, impulsivity, emotional volatility, and mistrustfulness. It is also evident that most incest victims have borderline personality disorder. This personality disorder contributes to highly polarised attitudes towards sexual partners . Overall, the above discussion has revealed that the Arab sector in Israel has confidentiality issues, due to which they do not practice discussing incest openly. The family rituals and the cultural and societal context play an important role because the families do not discuss it to maintain their reputation. Other than this, they also feared stigmatisation due to the practice of sexual abuse by an internal family member. Therefore, most inner families prefer to go for online therapies by professionals to control the prevalence of this issue age to help the victims deal with the traumatic events . The study aims to highlight different aspects of abused children based on the case study of incest in the sector in Israel and the role of psychotherapy lists from behind the screen. Considering the above notions, this study will attempt to delve deep into the phenomenon of abused children by analysing the case study of incest in the Arab sector in Israel. In particular, the impact of sexual relationships among family members and its impact on the children, their parents, and the psychotherapist, the job will comprehensively be discussed. An evaluation of sociocultural ramifications as a result of such taboo relations and socio-demographic data within the Arab sector in Israel will be an important part of this study. --- Statement of the problem Sexual abuse is common, and without interventions to stabilize the family, the abusers frequently get away with it. The goal of therapy from behind the screen in Israel is to stabilize the family and offer support to the parent and children who have been subjected to abuse so that they may go on to understand and accept the psychotherapist's help. The experiences of children and their parents who went to incest treatment from behind the screen have not been the subject of any research. What interventions are helpful to stabilize the family and the victim are not quite evident, nor is it clear how the program supports the victim's child and parent. --- Significance of the Study The research is of greater significance as the findings will enhance the awareness of incest and the role of families and psychotherapists in controlling its prevalence. Due to the historical and traditional views, the Arabs in Israel do not focus on discussing this issue due to the fear of stereotypic challenges and the loss of their family reputation. The research findings will help increase awareness and highlight different interventions and the role of a psychotherapist in safeguarding children within families and communities. Protection of children from sexual abuse, especially incest, will also contribute to the creation of a safe family environment where they can grow and thrive. Many cultural and societal factors are involved in the prevalence of incest who live in Arab in Israel, and it is essential to conduct research to control the increased prevalence of this issue. The findings will highlight all the factors involved within it and in executing different interventions that can contribute to the threats and challenges associated with this issue. These kinds of relationships are regarded as blood relatives, which may involve sexual relations between a brother and sister, a mother and her son, and a father and his daughter, to name a few. Simply put, incest is sexual intercourse with harmful effects like marital difficulties between spouses and an increased risk of emotionally and physically abusing children. Based on the above-discussed context, the current study will bring new insights that can contribute to dealing with child abuse issues based on the case study of incest. It will also contribute to bringing multiple policies that can help control its prevalence and academically; the students can also take assistance from the research findings to conduct further research.Overall, the study finds its significance in social, communal, and professional settings of Arab in Israel to control incest prevalence. --- Contribution of the study The above theoretical framework has dictated that the increased role of psychotherapists in dealing with incest cases will help decrease sexual abuse within Arab countries. An inverse relationship is presented between the role of psychotherapists and the incest cases in Arabs. It will be followed throughout the study. In addition, interviews will be utilized extensively in the study. --- Materials and Methods The study was based on the qualitative method. The qualitative tradition, data gathering and analysis occur concurrently . Depending on the researcher's approach, case study data analysis might frequently be the most challenging portion of the study . According to Yin , the investigation's data analysis phase should begin by assessing the study's questions. According to Yin , starting in this way enables the researcher to locate the data that addresses the inquiry, enabling the researcher to construct a conclusion. Each question was to be followed by the same procedure, and so on, until all were answered. This indepth comprehension of each research topic helped me respond more effectively to the overall research question. --- Results: Thematic Analysis Theme 1: Definition of incest Most of the respondents stuttered at first, by definition, there was silence and then defined it as recitation: Incest refers to sexual activity between family members closely related by blood or adoption. This can include sexual contact between siblings, parent and child, grandparents and grandson, uncles and aunts which is surprising that most of them referred to a cousin as being included in incest. Most of them noted that there are various forms of incest abuse, indecent acts, harassment, sodomy, most of which are not committed with threats. One of the respondents said:"Incest is a very disturbing phenomenon that usually describe a forbidden sexual relationship among the family member." --- Theme 2: Prevalence of child abuse and Incest in the Arab sector in Israel The interviewees repeated the same theme it is difficult for us to know, fewer noted statistics, which was repeated due to the sensitive nature of these issues it can be difficult to accurately measure the prevalence of child abuse and incest as many cases are not reported or are not reported there are no official data on prevalence in the Arab sector in Israel.. On respondents said regarding the prevalence of child abuse and incest in the Arab sector in Israel: "Due to the fact that this phenomenon is very sensitive and it is even considered as a taboo, it is difficult to give a clear image the prevalence of child abuse in general and incest in particular in the Arab sector in Israel" --- Theme 3: The psychotherapist role in dealing with child abuse and Incest phenomenon According to the interviews, the psychotherapist has key role in dealing with the phenomenon of child abuse in general and the incest phenomenon in particular. Firstly, the treatment creates a safe and protected, this does not take place then the treatment in the treatment room will be useless especially when it comes to incest, He supports the victim in order to share his experiences and feelings and thoughts without fear of judgment. Moreover, the therapist works with the child and family to develop a treatment plan that addresses the unique needs of the victim, including emotional or psychological problems and symptoms from abuse. The therapist uses a variety of therapeutic approaches, play therapy, cognitive behavioral therapy, dialectical behavioral therapy, family therapy or dynamic therapy, to help the victim process the trauma of the abuse and develop coping skills. One respondent said: " …the therapist must provide a safe environment for the therapy process, in this environment it will be able for the abused child to share his experiences, feelings and fears, without any fear of judgment…" Theme 4: Methods of treatment for child abuse in general and the phenomenon of incest in particular: The main methods were, Individual or group counseling, cognitive-behavioral therapy , play therapy, desensitization and eye movement reprocessing . It can be used to treat symptoms such as anxiety, depression or post-traumatic stress disorder , relaxation, mind and body Treatment, SE treatment method. An approach that believes that during trauma the body embraces the trauma and the focus is to release the trauma from the body referral to support services such as victim advocacy programs or legal aid. A therapist in Arab society must use everything connected to the culture from which the patient comes from and to his world of values and cultural characteristics. One therapist mentioned: " Some of the most common methods of therapy are, Individual or group counseling, cognitive behavioral therapy , play therapy, eye movement desensitization and reprocessing ….Theses methods can be used to treat symptoms such as anxiety, depression or post-traumatic stress disorder ." Theme 5: Special treatment and coping methods for the Arab sector: The interviewees raised some important issue regarding the Arab sector in Israel. First, in Arab society there are cultural and social factors that must be taken into account, for example stigma or shame associated with these issues and this may make it difficult for victims and victims to come and ask for help, there are also cultural beliefs and customs that can contribute to and perpetuate child abuse, for example family structure on date on attitudes towards gender and sexuality. One therapist said: "there are a great importance and influence of the cultural and the social factors in the Arab sector in Israel, the fear of shame and stigma associated with theses issues may cause the victims not talk about them or ask for help." Additional point under this theme was, that it is important to approach the issue of child abuse and incest in Arab society with cultural sensitivity and high awareness and commitment in cultural and social factors. This can include working with community leaders, sometimes also using clerics, providing education and awareness of child abuse and its impact and adapting treatment methods. One respondent added:"When dealing with child abuse and incest cases in the Arab sector it is important to be very sensitive and fully aware to the social and cultural circumstances. For example, we can usually ask for the community leaders and clerics… we also try to raise the awareness for the child abuse phenomenon, adapt the treatment methods for each case" Another point regarding the treatment methods in the Arab society, there are no special methods of treatments for the Arab sector. The treatment methods are universal, but the way they are being used differ according to the context, it all depends on the challenges that the therapists face during the therapy process.. For example, one of the therapists said: "there are universal treatment methods As in different cultures, the difference is in preparing the infrastructure in recruiting families to come to treatment, there is a difference in awareness of the cases that exist among other societies or in a large part of Arab society" Another barrier for the treatment process is the language barrier, the interviewees claimed that, there is a problem in using therapeutic language in Arabic. Especially, that the professional terms are usually in English and Hebrew and it is difficult to find equivalent terms in Arabic. About the langue barrier, one therapist said:"… is difficult to translate and also that to translate in the exact meaning. All the treatment method are taught to us in Hebrew and English. Another problem is that it is difficult to topic to talk about sex, sexuality, sexual abuse. " Furthermore, the participants talked about unconventional ways of treatment that they use when dealing with incest cases in the Arab sector in Israel. Such as, using verses from the Quran or praising using a rosary, or asking for religious people in order to reduce stress and calm the victims and their families. On therapists said:" in the Arab sector we sometimes integrate religious beleifs in order to calm down the abused child or even his family, for example we can use a rosary which saying verses from the Quran" Another point that raised from the interviews was the "obligation to report", in the cases of child abuse in general and Incest in particular there are an obligation to report, but this step can harm the entire extended family and creates a negative stigma on the whole family. Therefore, in many cases, the therapists avoid reporting to the police and even get a special approval not to do so because it can harm the victim and threaten murder. Especially, that it is a known fact that in the Arab culture, the norm imposes to keep everything within the family, and as one respondent said "not hang the dirty laundry out." In this case, one therapist said:" we do our best to avoid reporting the cases of child abuse, especially incests to the police and try to solve the problem within the family, because the consequences will be catastrophic no only to the victim, but also the whole family.." Another important consequence of the cases of child abuse and that almost only in the Arab sector is being treated a priority is the "virgin chromium", one part of dealing of the problem in the eyes of the Arab sector, is to make sure that the female victim is still a virgin. The therapists in the interviews described the joy and relief that the families show when discovering that the victim is still a virgin, and on the other hand they talked about the sadness and disappointment that the families demonstrate when they discover that the victim has lost her virginity. The therapists also described the disappointment of the victim due to the reaction of their families, they feel that their feelings and the trauma they've gone through doesn't matter. Regarding this point one respondent said: " the most important thing to families, before even the treatment is to check the the virgin chromium, ‫البكارة‬ ‫,غشاء‬ when the family discover that the victim is still a virgin they become very happy and feel that the problem is not that serious" A final point in this theme was the relationship of the families with the authorities especially the police. The therapists insisted that families usually avoid dealing with authorities because they are afraid that the police will interfere and take away the victim, which will harm the reputation of the family. On respondent described the perception of the families regarding the police: " most of the families has fear of the government, of the police, because they usually say that the victims' homes is not always the safe place, if a report is made to the police, there is a strong fear that the police will take the victims away". --- Theme 6: The transition to treatment during the COVID-19 period from in-person to behind-the-screen therapy Various sub themes were identified under this category relating to COVID 19. Three themes were identified: preparation for online therapy for therapists, patients and their families, online platform used by therapists today and the availability/readiness of the resources required to conduct online therapy in Arab society in Israel. --- Theme 6a: Preparation for online therapy for therapists, patients and families The interviewees claimed that the preparation for the new way of therapy during COVID-19 was insufficient and superficial. There were no clear instructions, everything was through trial and error, in the Arab society there was no clear internet infrastructure, most of the patients had a low socioeconomic status, and the training that was given did not match the needs of the Arab society. For example one therapist said:"we didn't get enough guidance and preparation for the new way of therapy behind the screen, we had to learn things on our own during the process." --- Theme 6b: Online platform used by therapists today From the answers, it was clear that there are no special platforms for behind the screen therapy, the therapists used the different technological devices randomly and without any plan, they used phone calls, WhatsApp, video calls, zoom meetings . On respondent said: " we use whatever is available, for example at first, we used the phone and had regular conversations, then we switched to WhatsApp, after that we used Zoom meetings.." --- Theme 6c: Availability/readiness of the resources required to conduct online therapy in Arab society in Israel Depending on the interviews, all of the respondents agreed that the resources for behind-the-screen therapy is very limited, especially in the Arab sector in Israel. Although, computer was distributed by the government to the families, it was after along time since the pandemic have started. Moreover, most families have maybe children and therefore the computers were not enough. Another problem, is the physical environment of the Arab homes, usually, there were no safe and quit space for holding the therapy meeting. A therapist mentioned:" one of the problems is lack of resources, for example not all families had internet or computer, it is true that the government has distributed computers for the families, but it was late " Theme 7: Dealing with the phenomenon of incest using the online method Three themes emerged in this section: Effect of online treatment on patients Effect of online therapy on therapists The relationship between therapist and patient. --- Theme 7a: Effect of online treatment on patients The interviewees mentioned many negative consequences on the patients, which they are trying to deal with, such as keeping in touch with the patients, keeping the patients from dropping out, reach the objective and aims of the therapy plan. For example, someone said:"the most dominant in using therapy behind screens that was not therapy, was maintaining contact, keeping the therapists from dropping out, keeping in touch, not as it was before touching clear content and goals" Additional point of this way of treatment was the stress and fear that the corona crises has created. Some of the participants said that in addition of dealing with the bad experience of abuse, some children talked about their fear of the corona virus and the feeling that they are imprisoned and had to stay indoors, everything was enforced on them even the online meeting of therapy. One of the therapist said:"the whole situation was stressful, especially for the patients, they have to deal with additional fear, which is the fear of the corona… the felt like they were in prison, therefore they were resistant to the therapy." Furthermore, the therapist explained how difficult for the patients to accept and cooperate with the therapist behind the screen, some of them felt unsafe and it was hard for them to talk about their feelings and thoughts freely. Moreover, some of the patients felt that there was an intrusion of privacy, there were embaressed to show the situation at home, like the furniture, shouting or fights…. etc. According to one respondent:"Many patients were frightened to see their faces in front of the screen, it was difficult to be exposed to what was happening to them and how the therapist interpreted it." But, it must be noted that from few patient this way of therapy was convenient, they felt free were to sit, they have control on when to end the session, they don't have to arrange transportation to get to a treatment center, and the most important thing they will not be seen arriving for treatment. For example a therapist said: "Some patients appreciated the new way of treatment, they said they felt a lot of freedom in choosing the place and the time of therapy… some even were felt relief that no one will see them coming to the therapy center." --- Theme 7b: Effect of online therapy on therapists Most of the therapists express negative feelings and experience when talking about the online therapy. Most of them expressed frustration and stress. They didn't feel any connection to the screen, they even felt that their professional ego was hurt. Moreover, the feeling of lack of experience and control over the new devices, especially among old therapists make it difficult form many therapists to conduct their therapy plans in a proper and professional way. According to one of the interviewees:"this was one of the most difficult experiences in my career life, the uncertainty, the frustration put everything in my experience into a questions, I have to deal with many new things that I was not ready for" Additional difficulty that they mentioned was, the lack of ability to see concrete things and indications through the face-to-face therapy meetings, such as body language and facial expressions. And the most important thing, they are not able to control who will be with th child during the online meeting, maybe the offender is there with them. On this matter one therapist said: " it all about lack of control, we as therapists can control the face to face session, we can see every movement, every eye blink and learn from it. In the online therapy, we lose this control we can't even make sure that the abusing family member is not there with the child during the session" --- Theme 7c: The relationship between therapist and patient The therapist-patient relationship important determinant of treatment outcome and is considered central to the therapeutic process. All of the participants agreed that the online therapy had a negative impact on the therapist-patient relationship. The feeling of distance, made the patient feel that the therapist is an outsider a stranger who lives in a different place. They stressed that the most important bases of the therapist-patient relationship are trust, and trust is build with time and effort. Through online therapy, this process is harmed, it is difficult for the therapist to build trust-based relationship between the therapist and the patient, especially with the difficulties that we mentioned before regarding keeping meeting schedule and the technical problem that they may face. On therapist said: "The online therapy deprives us from building the bridge of trust between the patients and us, we felt a wall, our patients couldn't be open enough with us.? Theme 8: the impact of online therapy method on parents/guardians; Perception, acceptance, readiness, responsiveness, cooperation. All of the participants focused on the importance of the family involvement in the therapy process. They also emphasize that parent engagement in the treatment process is particularly important for child and family treatment given the critical role that parents. The main reason for that is, the impact of family context on children's development and behavior. The participants, mentioned that the therapists has no control in building a safe environment for both the child and his family during the therapy session. One participant said: "if we look at the therapy process in the online method, we can clearly see that it is not a complete success, especially due to the lack of immediate relationship between the therapist and the parent. Because families have and important role in the treatment process." --- Discussion From the answers of the interviewees, the incidence of this phenomenon is only approximate, although it is clear that its dimensions are common. There are no exact data regarding sexual abuse in general and incest in particular against children, only estimates. However, it is clear that sexual violence against children, especially girls, is a very common phenomenon. This result may be explained by looking at the characteristics and the situation of the Arab sector in Israel. The Arab society in Israel is described as having a patriarchal collectivist nature, with a set of laws that give the traditional man supremacy . Moreover, in this society, there is concern for maintaining harmony within the family, without revealing family disputes to others who are outside the family system. Therefore, the individual is required to show maximum consideration for others and concern for the integrity of the extended family even when he is required to make personal decisions. obedience to it . Furthermore, Arab society emphasizes the main role of family and the importance of family honor, religion, virginity, and therefore topics in the areas of sex are taboo and cannot be spoken and discussed . Inbar Lebkowitz and Sna Kamel Jabor claim that the percentage of Arab children who are victims of sexual abuse is similar to the percentage of children who have experienced sexual abuse in other societies, with no difference between the two genders. Children who have been sexually assaulted, like children in other societies, suffer from a variety of psychological problems, such as anxiety, phobias, nightmares, suicidal thoughts, antisocial behaviors, paranoid thoughts, depression, aggressiveness, and are more likely to leave their home. According to the answers, the psychotherapist has a significant role in dealing with this phenomenon. First and foremost, they have to create a safe environment for the abused child. Second, they have to build a special treatment plan for the victim and his family. Furthermore, the main techniques included cognitive-behavioral therapy , play therapy, desensitization, and eye movement desensitization and reprocessing . It can be used as a relaxation, mind-body, or SE therapeutic strategy to treat symptoms of anxiety, depression, or post-traumatic stress disorder . Regarding the Arab sector, there were no special treatment methods, but the therapists made some adjustments to the existing methods to make them more appealing to the Arab culture, like integrating verses from the Quran. In addition, the majority of the psychotherapists had negative perception regarding the online therapy, they claimed that during COVID-19, the preparation for the new kind of therapy was inadequate and insufficient. The majority of the patients had poor socioeconomic positions, there were no clear instructions, everything had to be learned by trial and error, and the provided training did not take into account the needs of Arab society. Many previous studies showed a similar position toward online therapy, for example in the study of Kotera and his colleagues , they found that all participants agreed that restricted physical contact and body language, both of which might be further harmed by technological disruptions, are the most significant limitations of online treatment. Moreover, Regarding the impact of the online therapy on the abused child, the study has revealed a number of negative consequences: First, the respondents discussed a variety of difficulties that have to deal with during online therapy, including maintaining contact with the patients, preventing drop-off, and achieving the goal and objectives of the therapy plan. Second, the tension and terror that the Corona Crisis generated was a further problem. Some of the participants claimed that in addition to dealing with their past experiences of abuse, some also discussed their dread of the coronavirus and how they felt imprisoned and forced to stay indoors, even the online therapy sessions were imposed on them. Third, the therapist also discussed how challenging it was for the patients to comply with and accept the therapist working behind a screen; some of them felt unsafe and found it difficult to express their feelings and thoughts in a natural way. Additionally, some of the patients felt that their privacy had been violated and some were embarrassed to provide details about their personal lives, especially when details from their personal life are shown in the background, such as the furniture or loud voices of arguments between their family members. Moreover, These results match the results of another research by Collin-Vézina, Brend, and Beeman, , who found that access to a private, secure setting for therapeutic sessions is another physical restriction while conducting an online therapy session. It is advised that treatment sessions take place in a closed-off space with a door, preferably not the child's bedroom. Children may not have access to a private space in low-income families with little space, especially during a pandemic when other family members are present. As a result, it is possible that client confidentiality may be jeopardized. To rule out this possibility, procedures to limit this risk should be discussed and repeatedly examined with the client. In addition, one of the most significant results of the study was the negative impact of online therapy on the psychotherapists' work, which was clearly demonstrated by the participants, when discussing online therapy, the majority of the therapists express their unpleasant thoughts and experiences. The majority of them indicated stress and frustration. They felt no connection to the screen, and their professional ego even felt bruised. Additionally, many therapists find it challenging to carry out their treatment plans in a proper and professional manner due to their perception of a lack of familiarity with and control over the new technologies, especially among older therapists. Another issue they raised was their inability to observe physical cues and signs during face-to-face therapy sessions, such as body language and facial expressions. The most crucial factor is that they have no control over who will be with the child during the online meeting; it's possible that the attacker will be present. Furthermore, according to the study results, The therapist-patient relationship is seen to be crucial to the therapeutic process and a significant driver of treatment outcomes. Everyone who took part in the study agreed that the therapist-patient relationship suffered as a result of online therapy. The patient felt that the therapist was an outsider, a stranger, who lived somewhere else because of the sense of separation. They emphasized that trust is the cornerstone of a successful therapeutic alliance and that it takes time and effort to develop. This process is affected by online treatment; it is challenging for the therapist to establish a rapport based on trust with the patient, particularly given the challenges we previously noted regarding meeting schedule adherence and potential technological issues. These results are in line with results of previous studies, such as the study of Kaluzeviciute , a number of significant issues with therapist privacy, virtual impingements, through which online discoveries alter the physical therapeutic relationship, and a desire to internalize digital versions of the therapist or digital communications, such as developing transference through email exchanges, were identified as challenges to therapeutic relationships caused by the digital space and social media. Similar results were also found by previous studies for example Scharff, found that one of the main criticisms against this way of treatment was the space, hour, and season of the environment for each of them may fluctuate significantly due to the therapist's and patient's different locales. Compared to traditional therapy, it could initially be more challenging to establish the treatment contract and collaborative relationship between the therapist and patient. Additionally, it could be harder for the patient to commit to therapy, making it simpler to stop the course of treatment. Moreover, all of the participants emphasized the value of including the family in the therapeutic process. Additionally, they stress how crucial it is for parents to participate in the therapy process because of the vital role that parents play in their children's and families wellbeing. The primary cause of this is the influence of family setting on children's behavior and development. According to the participants, the therapists have no influence over creating a safe environment for the child and his family throughout the therapy session. According to a study of Simons, Noordegraaf and Van Regenmortel , there has been a rise in reports of family violence as well as the risk of violence towards children and adolescents. Finally, according to the study results, a number of benefits were mentioned by the participants regarding the use of online therapy, first Accessing care might be hampered by factors like transportation, location, or scheduling conflicts. Online therapy can help. Regardless of location, online therapy can be customized to meet the needs of the child and his family and can take the form of individual, family, or support group treatment. The use of technology in therapy can provide more schedule flexibility and enable treatment to be delivered in a variety of settings, including the therapist's office, a clinic, the child's home, or a classroom. Second, Arab society may have a stigma associated with seeking therapy, therefore behind screens can help reduce this stigma by providing anonymity and privacy. Third, Children may be more involved in therapy when using technology because it can be a familiar and convenient medium for them. Fourth, online therapy can be more economically affordable than personal care because it eliminates the need for travel and reduces overall costs for the parents, especially in Arab society in which the socioeconomic situation is particularly low. Fifth, since there aren't many Arab therapists in the field, those who live in rural or isolated places sometimes lack access to health care. However, behind-thescreen counseling can provide them with access to therapies for sexual abuse. Since the topic of sexual abuse is still taboo in some parts of Arab society, therapy conducted behind screens can help preserve secrecy by lowering the probability that others would learn about treatment sessions. We can find additional benefits of online therapy, in the study of Kaluzeviciute and his colleagues think that even when there is a physical distance, e-therapy upholds the fundamental principles of conventional one-on-one therapy. For instance, the amount of physical communication that occurs online is comparable to that of an in-person analytical session. Other advantages of the e-therapy claim that other modalities will likely compensate when the route of touch or smell in communication is closed, as it does when it is done online. Additionally, some supporters emphasize the telepresence phenomenon as a crucial element of online treatment. --- Conclusion Based on a case study of incest in the Arab part of Israel, this study significantly advances our understanding of the various components of child abuse. An ecologically based theoretical model or framework of practice for behind-the-scenes sexual abuse therapy with child victims has been developed in light of the

We know that child sexual abuse (CSA) and incest does not occur in isolation, but often in conjunction with emotional and physical abuse, neglect, and domestic violence within the family (Tener, et al., 2021). The more types of child maltreatment experienced, the greater the negative impact on abused children mental health. The family situation greatly affects the mother's ability to respond positively toward the disclosure of CSA. A recent cluster analysis of 35 psychotherapists from behind the screen in Israel in dealing with incest in the Arab sector has been discussed in this study. This study used a qualitative methodology based on interviews with 35 psychotherapists who work from behind the screen with sexually abused children based on the case study of incest in the Arab region. Interviews were utilized to gather qualitative information regarding the abuse in the Arab sector in Israel. These abused Arab youngsters had undergone counselling and psychological treatment before the interviews. The last themes that emerged were: characteristics of the therapist that support behind the screen therapeutic connection, narrative therapy, turning points, and counsel for therapists working with abused children in the Arab sector in Israel. The factor that affected the participants the most was confidence in the therapeutic alliance based on precise boundaries between the therapist and the abused child presented themes offered helpful therapeutic ideas and tactics that aided in speeding up the healing process.

Introduction Over the last decade, the number of internet users has significantly risen. Thailand in particular, is no exception. There has also been an increase in reports of people being preoccupied with the internet to the extent of having a negative impact on their lives. Internet addiction is the term used to identify this kind of behavior [1]. According to Young, internet addiction can be categorized in five specific subtypes including cyber-sexual addiction, cyber-relationship addiction, net compulsions, information overload and computer addiction [2]. Despite having five subtypes of internet addiction, obsessive computer game playing has received the most attention over the years. The term internet gaming addiction was first reported in 2004 [3]. In the following years, studies were conducted to further explore the nature of internet gaming addiction. In 2012, a systematic review included neuroimaging studies providing an explanation on the pathology and mechanisms among those with internet addiction and also internet gaming addiction [4]. In 2013, the official term, "internet gaming disorder" , was established by the American Psychological Association with the definition of "repetitive use of Internetbased games, often with other players, that leads to significant issues with functioning". The term was also added to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition . However, it was labeled as a condition warranting further research. The diagnostic criteria for IGD consists of nine items, having at least 5 within 1 year warrants the diagnosis. The IGD-20 test was later developed as a valid and reliable tool for diagnosing IGD [5]. Factors associated with IGD include functional and dysfunctional impulsivity, belief self-control, anxiety, pursuit of desired appetitive goals, money spent on gaming, weekday game time, offline community meeting attendance, gaming community membership [6], game genre [7], age of initiation [8], poorly functioning family [9], high levels of psychological distress, use of alcohol, suicidal ideation [10], having distinct problematic thoughts about gaming [11], higher neuroticism, decreased conscientiousness and low extraversion [12]. Although the direction of these associations have yet to be concluded, studies are still ongoing to clarify these issues. Studies have been conducted in various countries on the prevalence of IGD. The prevalence in a systematic review of 50 studies ranged from 0.7 to 27.5% [13]; the author also noted that comparison might be difficult due to the diverse tools used to identify IGD. Few studies included in this systematic review used the IGD-20 tool. Moreover none did specify whether the area of study was urban or rural. Up to the present, many studies on IGD have been conducted. However, there have been few studies who have aimed to estimate the prevalence of IGD in a rural area of a developing country where there is a technological gap compared to urban areas. Thailand is an area where such a gap exists [14]. Therefore, this study aimed to estimate the prevalence of IGD and also identify its associated factors in rural area of a developing country. --- Main text --- Study design A cross-sectional study of prevalence of IGD was conducted from December 2017 to January 2018 among secondary schools in Chachoengsao Province, Thailand. Chachoengsao is a sample of a rural area in Thailand. Our target population was the age of 12-18 years. So we used students currently studying in secondary schools in Chachoengsao as our population. There were a total of 43 secondary schools in Chachoengsao, 12 were private schools while the rest were public schools. A stratified sampling based on type of school and size was used to select the schools. Our sampling yielded 10 public schools and 2 private schools. Students currently studying in the selected schools were recruited via advertisement from the school director. Informed consent was required for each participant to partake in the study. Eligible participants comprised Thai nationality, students attending the 12 secondary school in Chachoengsao Province, Thailand. Information of general characteristics, IGD and mood disorder screening were collected by self-administered standardized questionnaires. --- Measures Both online and paper questionnaires contained 45 independent variables, divided in 6 parts. The first part comprised general characteristics, the second part described father and mother status while the third part covered internet and game assessment. The fourth part involved the internet gaming disorder test translated to Thai and the fifth part measured depression, anxiety and stress using the short form of the Depression Anxiety Stress Scales Thai version. The sixth part comprised questions about bullying and sexual intercourse. The main outcome of this study focused on internet gaming disorder. Other variables in addition to the main outcome involved depression, anxiety and stress. General characteristics, also in the questionnaire were age, sex, family income, debt status, weight, height, school location, school type, bullying factors and internet access. --- Internet gaming disorder test The main outcome was measured using the IGD-20 Test translated to Thai consisting of 20 questions. Each question has scores from 1 to 5, minimum and maximum scores are 20 and 100 and the cut point is 71. Questions covered salience, mood modification, withdrawal symptoms, conflict and relapse. --- Statistical analysis Descriptive statistics including percentage, mean, median and mode were used to evaluate distribution before further statistic evaluation. We conducted univariate regression to compare the IGD group to the control group in terms of general characteristics, psychological symptom, internet assessment and bullying. The potential independent risk factors with p-value < 0.2 were included in multivariate logistic regression analysis, which was performed to determine the risk factors associated with IGD. The analysis was performed using SPSS 22.0. A p-value < 0.05 was considered statistically significant in the analysis. --- Results Of those 9649 students from the 12 schools, 6000 were enrolled in the study. After excluding missing data, only 5497 were applicable. Of 5497 participants the prevalence of IGD-20 positive was 5.4%. Psychological symptoms were around 49.2% of those reporting depressive symptoms. In all, 55.4% accounted for anxiety symptoms and 28% for stress symptoms. The sex of participants was 44.9% male and 55.1% female. Totally, 51.8% of the participants had grade point average lower than 2.50 , and 68.4% had failed an exam in the past 12 months. The proportion of schools inside and outside the city district was 55.2 and 44.8%, respectively. Type of school was divided in public and private . Altogether, 98.8% of participants had internet access and 80.7% have played online games. In this population 36% of gamers have topped up in the game ranging from 9 to 100,000 Thai baht ). Fully, 87.3% of participants used their phone as the most used device, 22.7% had been cyber-bullied and 17.8% had bullied others . After univariate and multivariate logistic regression analysis was conducted, factors associated with internet gaming disorder exhibiting a p-value < 0.05 included being male; odds ratio = 1.4 1.06-1.85), not living with both father and mother; OR = 1.75 , use of online dating; OR = 1.53 , being bullied at school; OR = 1.51 , depression; OR = 1.92 , anxiety; OR = 1.62 and stress; OR = 3.57 . --- Discussion The prevalence among secondary school students in a rural community of Thailand was 5.4%, which could be considered slightly higher than average in other studies. However, the difference was quite minimal suggesting that sociocultural differences may not be associated with internet gaming disorder [15]. Being male was significantly associated with internet gaming disorder. Women may show better executive control than men when facing gaming cues, which may provide resiliency against developing IGD [16]. Another study identified the differences of the brain in men and women with IGD [17]. Not living with both parents was also significantly associated with internet gaming disorder. Having a non-intact family is associated with poorer family functioning, lower maternal and paternal behavioral control [18]. This increases the risk of developing IGD [19,20]. The use of online dating reflects higher social anxiety [21,22], thus increasing the likelihood of internet addiction [23]. Being bullied at school may indicate an individual's low self-esteem [8,19,24,25]. This also serves as a criteria for internet gaming disorder. As for depression stress and anxiety, the causal relationship is unclear due to limitations in this study design. The associations may be interpreted both ways. The individual may feel depressed, stressed or anxious by the events in the real world and may choose to use the virtual world to escape these feelings. Another interpretation may be that internet gaming disorder causes depression, stress and anxiety due to its impact on an individual's neuro-circuitry [26][27][28]. Further studies employing a different design that would be able to explain the causal relationship should be conducted to make a more valid conclusion. The strengths of this study were the relatively large sample size, inclusion of comprehensive risk factors, our standardize definitions of diagnoses, the recently updated information and to our knowledge this constitutes the first study conducted in Thailand. --- Conclusion In conclusion, this research demonstrated the most recent estimated prevalence and the associated factors of Internet gaming disorder among adolescents in a rural community of Thailand. A qualitative study should be conducted in the future to better understand the relationships to mental health outcomes at the national level. Although the prevalence of Internet gaming disorder among Thai secondary school students may not be high when compared with other published studies, the global trend shows a continuous increased prevalence. Therefore, preventive measures should be taken. Interventions should particularly target those with increased risk of developing this disorder. --- Limitation of the study Because the study employed a cross-sectional design, causal relationships remains unclear. In addition, the data obtained may have been subjected to recall bias. However, we did address this issue by including the period of the most recent year in our questionnaire. Although we have endeavored to explain the logical viewpoint behind our findings, a more detailed explanation should be obtained from a qualitative study. Despite the sample size being able to represent secondary school students in Chachoengsao Province, the population of Chachoengsao province may not represent the whole Thai population. Therefore, a nationwide study should be conducted to confirm the problem of internet gaming disorder in Thailand. --- --- Abbreviations IGD: the internet gaming disorder; OR: odds ratio; APA: The American Psychological Association; DSM-5: The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition; DASS-21: The Depression Anxiety Stress Scales; IGD-20 Test: internet gaming disorder test; GPA: grade point average; THB: Thai baht; USD: US dollar; 95% CI: 95% confidence interval. --- --- --- Consent to publish Not applicable. --- Competing interests The authors declare that they have no competing interests. ---

Objective: Internet gaming disorder (IGD) is an emerging mental problem for adolescent that has been increasingly piqued interest over the last decade. Although many studies have been conducted, very few studies have studied populations with low technological access. Therefore, this study aimed to estimate the prevalence and associated factors of internet gaming disorder among secondary school students in an area with a comparatively lower technological access in a large community sample. We used Chachoengsao province, Thailand as our sample area with a comparatively lower access to technology. This cross-sectional study was conducted during December 2017-January 2018 among 12 secondary schools in Chachoengsao province, Thailand. Results: 5.4% of the 5497 subjects were positive for IGD. The associated factors found were male gender (odds ratio (OR) = 1.4), not living with both parents (OR = 1.75), use of online dating (OR = 1.53), being bullied at school (OR = 1.51), depression (OR = 1.92), anxiety (OR = 1.62) and stress (OR = 3.57) after being adjusted for age, family composition, failure of an exam, limit of internet use, use of online dating, bully perpetration, bully victimization, cyber bully perpetration, cyber bully victimization, suicidal ideation, use of alcohol, depression, anxiety, and stress.

Introduction With the implementation of the Affordable Care Act , HIV healthcare delivery and health insurance coverage for many people living with HIV in the United States changed [1]. Across the US, many PLWH with low incomes gained insurance coverage through expanded Medicaid [1]. Additionally, even for those who did not receive Medicaid due to income restrictions or living in a Medicaid nonexpansion state, many aspects of HIV care changed [2]. Almost all state AIDS Drug Assistance Programs offered to purchase ACA Qualified Health Plans for PLWH with low incomes [2,3]. Virginia ADAP paid the insurance premiums, deductibles, and medication copayments, so most of the possible financial costs related to coverage through the ACA were covered by the state [2]. Our group and others have published studies demonstrating that PLWH with ADAP-funded QHPs are more likely to achieve viral suppression compared to PLWH who receive medications directly from a state ADAP [4][5][6]. In addition to the available quantitative data suggesting the importance of comprehensive insurance coverage for PLWH, the Kaiser Family Foundation has performed two focus groups with PLWH in urban centers to understand their experience with the ACA [7,8]. ese studies' participants with QHP coverage reported putting a lot of trust in case managers to help them make QHP enrollment decisions and prioritizing being able to continue to see their established HIV clinician [7,8]. Our group also published a qualitative study about the perspectives and opinions of nonurban PLWH in Virginia who enrolled in ADAP-funded QHPs [9]. Besides the previously mentioned work, little else has been published about the ACA from the perspective of PLWH. We aimed to add more from the patient perspective. Additionally, with this descriptive, hypothesis-generating study, our group sought to understand the interplay of ACA knowledge, stigma, trust, and attitudes about the ACA, which have not been examined together, to our knowledge. In terms of knowledge, previous studies had demonstrated knowledge gaps about the ACA for PLWH in Nebraska [10]. We examined this topic in a nonurban southern population and added the examination of associations between ACA knowledge and stigma, trust, and attitudes about the ACA. ese three patient-centered topics were chosen based on the review of previous research. We hypothesized that these could influence PLWH's decisions about healthcare and might be important areas to consider in thinking about how to convey information about changes in healthcare delivery to PLWH more effectively. For stigma, it has been identified as one of the most significant barriers to ending the HIV epidemic worldwide [11] and has been shown to mediate the relationship between self-efficacy and HIV medication adherence and quality of life [12]. We wondered if stigma may be associated with less self-efficacy in making decisions about the ACA. For trust, the Kaiser Family Foundation's work in urban focus groups has highlighted trust in HIV clinicians as important sources of knowledge within the changing healthcare system [7,8]. Given this, we wanted to explore trust in HIV clinicians for a nonurban southern population, as well as trust in other clinicians, insurance companies, and governmental bodies. For attitudes, it has been shown that better ACA knowledge is associated with increased favorability of the ACA [13,14]. e specific objective of this study was to explore ACA knowledge, HIV-related stigma, trust in various healthcare and governmental bodies, and attitudes toward healthcare and the ACA among PLWH covered by ADAP-funded QHPs in Virginia. is current work adds to the literature by offering more perspectives from PLWH who live in the nonurban US, as they likely have different experiences than those in urban centers. Moreover, the surveys were conducted with individuals, so participants were not influenced by dominant respondents as can happen in focus groups. Exploring knowledge, stigma, trust, and attitudes towards new healthcare policies and their interactions may help guide future interventions in designing health policy or education related to health system delivery changes. --- Methods --- Study Enrollment. is prospective study's goal for recruitment was to enroll at least 5% of people who were eligible for ADAP-funded QHPs in two Virginia Department of Health planning regions . e University of Virginia Institutional Review Board for Social and Behavioral Sciences and the Centra Health IRB approved this study. Participants recruited for the study were English-speaking people living with HIV and were eligible for a Virginia ADAP-funded QHP. ey were recruited face to face before or after an HIV medical visit in a medical exam room to ensure privacy and confidentiality. Recruitment took place at three Ryan White HIV/AIDS Program clinics between December 2015-May 2016 and January 2017-February 2017. Participation in the study took an average of 45 minutes, and participants received compensation for their time. e study included a survey and an interview, both of which were administered verbally to minimize any barriers related to low literacy. Findings from the interviews are published elsewhere [9]. --- Cohort Characteristics. Participants were surveyed with validated measurement tools, when possible. Baseline characteristics collected included demographic, socioeconomic, and HIV-related information. Characteristics included age, self-reported gender, race/ethnicity, financial status ), highest level of education completed, housing stability using methods from Montgomery et al. [15], transportation difficulties, internet access, and mental health including depressive symptoms assessed using the 5-item MHI scale from Berwick et al. [16], problem drinking assessed using the AUDIT-C questionnaire from Bush et al. [17], and a single-question screening test for illicit drug use [18]. Other information related to HIV care that was collected included self-reported current antiretroviral prescription status and self-reported current viral suppression status . --- Variables 2.3.1. Sources of ACA Knowledge. Participants were provided with a list of possible sources of information about the ACA, which included physician, nurse, clinic case managers, clinic social workers, clinic support staff, other hospital staff, television or magazines, websites, social networking sites, radio, mail, your health insurance company, and friends or family. From this list, they were asked to select their primary source of information and then all sources of information used. --- ACA Knowledge. Adapted from a previous study, the following questions were used to assess ACA-related knowledge with the answer options yes, no, and I don't know [19]: Does the Affordable Care Act provide subsidies for people with low incomes to purchase health insurance? Does the Affordable Care Act make it illegal to exclude a person from an insurance plan due to a pre-existing condition? Does the Affordable Care Act eliminate the Ryan White HIV/AIDS Program? Did Virginia decide to move forward with the Affordable Care Act's optional Medicaid expansion? Answering "I don't know" as an answer choice was considered an incorrect answer. Correct ACA knowledge was defined as getting the first three questions correct, as there was a very low correct response rate about Virginia's Medicaid expansion status. --- Stigma. Information regarding HIV-related stigma was collected using the Berger HIV Stigma Scale [20], and the total score was reported. A higher score means that the person is experiencing more stigma. --- Trust. Additionally, participants' trust in their main HIV clinician, non-HIV clinician, and health insurance companies was captured by asking their agreement with five statements about each entity [21]. Likert scales were used for these statements, with options including strongly agree, agree, neutral, disagree, and strongly disagree. ese were each associated with a numeric score from 5 to 1, and a maximum total score of 25 was possible. Participants' trust in the US federal government and the Virginia state government was also assessed [22]. e questions assessing trust in the US federal government and Virginia state government asked "how often can you trust the governmental body to do what is right," with answer choices that included always, most of the time, about half the time, some of the time, never, and don't know [22]. e "don't know" answer choice was removed during analysis due to ambiguity. --- 2.3.5. Attitudes towards the ACA. Participant attitudes were assessed about five topics using a Likert scale as described above: if health insurance helps improve health outcomes, whether the ACA will improve US health outcomes, if they believe they have enough information about the ACA to understand how it will affect their HIV care, if they think the ACA will improve their HIVrelated health, and if they believe the ACA will improve their non-HIV-related health. e majority of these questions was adapted from a previous study [19]. e question about having enough information was converted to a binary variable so that its association with correct ACA knowledge could be studied. --- Data Analysis. For statistical testing, all baseline characteristics were collapsed into two or three categories to avoid sparse data bias: age , gender , race/ethnicity , financial status , education level , housing stability , transportation difficulties , internet access , presence of depression , problematic alcohol use , and illicit drug use during the past year . Data analysis was performed using R and RStudio . Each question was analyzed with the available data. Any missing data are noted in the results. Descriptive statistics were used to evaluate baseline characteristics, correct ACA knowledge, sources of ACA knowledge, HIV-related stigma, trust in the medical system and government, and attitudes towards the ACA. Mann-Whitney U tests or Kruskal-Wallis tests were used to assess for an association between baseline characteristics and each of the following: correct ACA knowledge, HIV-related stigma, trust in the medical system and government, and attitudes towards the ACA. Additional analyses were performed to investigate if there are any associations between correct ACA knowledge and the following data: sources of ACA knowledge, HIV stigma, and trust. A Kruskal-Wallis test was used to assess if any source of knowledge, which was used by at least 5 participants, was associated with a different distribution of correct ACA knowledge questions. Mann-Whitney U tests were used to assess the association between correct ACA knowledge and average HIV Stigma Scale overall score and all trust scores. e interaction of participants' perception of having enough information to understand how the ACA will affect their healthcare and performance on the ACA knowledge questions was studied using a Fisher's exact test. ). e majority of participants was male, and just over half were black race/ethnicity. Most participants made less than 133% FPL, and two-thirds completed education equivalent to a high school diploma or less. Nearly 20% of participants reported concerns related to housing stability, about 30% endorsed transportation difficulties, and 17.0% reported having no reliable internet access point. Almost a quarter of participants reported problem drinking or illicit drug use within the past year, while two-thirds endorsed depressive symptoms. More than 90% of participants reported being prescribed ART, and 78.8% of participants reported being virally suppressed. --- Results --- Participant --- ACA Knowledge. Almost 80% of participants correctly knew that the ACA provides for low-income subsidies . Just over 40% knew that the ACA provides protection for people with pre-existing conditions. Over two-thirds knew that the RWHAP would continue under the ACA. irty percent of all participants had correct ACA knowledge. 11% of participants who correctly knew about Virginia's Medicaid expansion status also had correct ACA knowledge. Participants with higher incomes were more likely to demonstrate correct ACA knowledge than those with lower incomes . No other baseline characteristics were associated with correct ACA knowledge. --- Sources of ACA Knowledge. Participants reported that their primary source for obtaining ACA information was clinic case managers followed by using websites , television , clinic social workers , and newspapers or magazines . In terms of all sources of information about the ACA, the most common sources were learning from clinic case managers , using television , learning from clinic social workers , learning from an attending physician in charge of their care , and learning from friends or family . e mean number of reported sources was 3.6 : 2.1; range: 1-10). Participants who used websites for ACA information were more likely to have correct ACA knowledge compared to those that did not . While not statistically significant, participants who learned ACA information from clinic social workers were more likely to have correct ACA knowledge compared to those that did not . Use of other sources of ACA information was also not associated with correct ACA knowledge. 2). e mean overall stigma scores were higher for participants who were older than 45 years compared to those under 45 years old . ey also differed for those who had transportation difficulties compared to those who had stable transportation . Mean stigma scores were higher for those who did not have internet access compared to those who had internet access on a computer or a phone and those who had access on both a computer and a Does insurance improve healthcare? 3.9 Will the ACA improve US health outcomes? 3.5 Will the ACA improve your HIV health outcomes? 3.7 Will the ACA improve your non-HIV health outcomes? 3.4 Do you have enough information on the ACA to understand its impact on your HIV care? Agree 28 Disagree 25 1 ACA knowledge and attitudes toward the ACA were assessed using questions from McManus et al. [19]. 2 Correct ACA knowledge was defined as getting the first three questions correct as there was a very low correct response rate about Virginia's Medicaid expansion status. 3 Stigma was assessed using the Berger HIV Stigma Scale [20]. 4 Trust in clinicians and insurance companies was assessed using methods from Dugan et al. [21]. 5 Trust in governmental bodies was assessed using methods from the American National Election Studies [22]. phone . Lastly, participants with depressive symptoms had higher mean stigma scores than those who did not have depressive symptoms . Gender, race/ethnicity, financial status, education level, housing stability, problem drinking, and illicit drug use were not associated with differences in overall HIV-related stigma. ose with correct ACA knowledge had decreased overall stigma scores compared to those without correct ACA knowledge . --- Trust. e overall average trust score in HIV clinicians was 21.8 . Overall, the average trust score for general clinicians was 19.5 . e overall average score for participant trust in insurance companies was 13.6 . Differences in trust in HIV clinicians were not associated with any baseline characteristics or with correct ACA knowledge. Correct ACA knowledge was associated with lower trust in general clinicians compared to participants with incorrect ACA knowledge . No other baseline characteristics were associated with differences in trust in general clinicians. Participants who had an education level of high school or less trusted health insurance companies more than those who had education beyond high school . Other baseline characteristics and correct ACA knowledge were not associated with differences in trust in health insurance companies. In terms of trust in the federal government, 3.8% said they could "always" trust the federal government, 15.1% said "most of the time," 22.6% said "about half the time," 28.3% said "some of the time," 15.1% said "never," and 15.1% said "don't know" . In terms of trust in the Virginia state government, 5.7% said they could "always" trust the Virginia state government, 17.0% said "most of the time," 24.5% said "about half the time," 22.6% said "some of the time," 15.1% said "never," and 15.1% said "don't know." Differences in trust in the federal government were not associated with any baseline characteristics or with correct ACA knowledge. Participants with depressive symptoms had less trust in the Virginia state government compared to those without depressive symptoms . Other baseline characteristics and correct ACA knowledge were not associated with differences in trust in the Virginia state government. --- Attitudes towards the ACA. e mean response for the statement "You believe that having health insurance improves one's healthcare" was 3.9 . e mean score for the question "Do you think that the Affordable Care Act will improve US health outcomes?" was 3.5 . Participants' mean response to "Do you think that the Affordable Care Act will improve your HIV-related health?" was 3.7 . e mean response for the question "Do you think that the Affordable Care Act will improve your health?" was 3.4 . Over half of participants agree that they believe that they have enough information about the ACA to understand its impact on their HIV care. Participants who reported a history of problematic alcohol use were less likely to believe that the ACA would improve their non-HIV-related health compared with those who did not have problematic alcohol use . ose who reported using an illicit substance in the past year were more likely to say that they did not have enough information about the ACA to understand how it will impact their HIV care . No other baseline characteristics were associated with differences in attitudes towards the ACA. No association was found between a participant having good ACA knowledge and saying they have enough information about the ACA to understand how it will impact their HIV care. --- Discussion is study highlights that participants had knowledge gaps related to the ACA. Like many PLWH, especially in the south, a significant portion of participants in this study had major barriers to healthcare access including unstable housing, transportation difficulties, a lack of internet access, and high HIV-related stigma scores. ere was no association between a participant having correct ACA knowledge and their feeling as though they had enough ACA information to understand how it will affect their HIV care. In light of this finding, HIV clinicians and HIV clinic staff should consider that PLWH may not recognize their own knowledge gaps. Nearly one-third of the study participants did not know that the RWHAP would be continuing under the ACA, and just over 10% of participants correctly knew that Virginia had not expanded Medicaid at the time of the survey. A 2013-2014 Nebraska study investigating a similar population of PLWH found that only 25% knew about the preservation of the RWHAP, and 63% did not know about whether Nebraska decided to expand Medicaid [10]. is suggests that lack of knowledge about specific aspects of the ACA may be common among PLWH. Our team performed a 2015 study assessing national HIV clinician knowledge of the ACA that showed that a majority of HIV clinicians knew about the preservation of the RWHAP and their state's Medicaid expansion status . We performed a follow-up study in 2018 that demonstrated HIV clinicians' improved knowledge on these topics as well [23]. is suggests that HIV clinicians can share with PLWH about these topics [19] as well as about the association between ACA Qualified Health Plans and viral suppression [4][5][6]. From this study, it seems that only one-third of PLWH received any ACA information from their HIV clinician, so this is an area for improvement. Increasing dissemination of this information to PLWH is an important goal for HIV clinicians and HIV clinic staff, such as medical case managers, so that PLWH will have actionable and correct knowledge about the ACA and can advocate for themselves. Excellent skills in system-based medicine have been noted to be an important skill for infectious diseases clinicians [24]. e Accreditation Council for Graduate Medical Education defines system-based medicine as an awareness of and responsiveness to the larger context and system of healthcare, including the social determinants of health, as well as the ability to call effectively on other resources in the system to provide optimal healthcare [25]. Skills in this area may be even more important for HIV clinicians given the barriers that their patients face issues related to social determinants of health that have only been exasperated by COVID-19 [26] and the known impact of social determinants of health on HIV outcomes [27]. Our study population demonstrated high levels of trust in both their HIV clinicians and general clinicians, relative to their trust in health insurance companies. Additionally, for this study population, no baseline characteristic was associated with the difference in trust in HIV clinicians, suggesting that the HIV clinicians are maintaining the trust of PLWH of different ages, genders, race/ethnicity groups, and socioeconomic groups. Previous studies have demonstrated that African Americans may trust their HIV clinicians less than those of other race/ethnicity groups [28]. Trust in clinicians has been shown to be an important factor in care for PLWH, including that it is associated with adherence to antiretroviral therapy [29] and improved retention in HIV care [30]. Trust in clinicians can allow them to become key information brokers related to healthcare, public health, and research [31]. 108 Differences in stigma scores for baseline characteristics were examined with Mann-Whitney U tests or a Kruskal-Wallis test . Differences between stigma scores and correct Affordable Care Act knowledge were evaluated with a Mann-Whitney U test. 1 One participant did not fill out a sufficient number of questions to be included. Given the observed trust in the HIV clinician relationship in this population, it seems that there may be an opportunity for education about the ACA to be brokered through HIV clinics by HIV clinicians or case managers [32]. We did not find any association between correct ACA knowledge and learning ACA information from HIV clinicians and HIV clinic staff. However, future strategies to combine trusted and commonly used sources, HIV clinicians and case managers, with websites, which were the only source of ACA knowledge in this study that was associated with correct ACA knowledge, should be explored. While there will be variable health insurance literacy [33], HIV clinics could develop low-cost websites with videos to share accurate and actionable ACA knowledge with PLWH. Videos could be disseminated via a private YouTube channel or a clinic-specific mobile health application. For example, an HIV clinic-based mobile health application utilized its platform to share how the ACA was going to impact HIV care in Virginia [34]. Sharing information electronically reaches PLWH outside of their busy HIV clinic visits, and if it is asynchronous, it could be viewed at a time that is convenient for them. AIDS Education and Training Centers are poised to organize these efforts, as they have a track record in creating changes in clinician practices and changes to the care system [35]. Additionally, given that using websites was associated with correct ACA knowledge, access to the internet is important for PLWH to gain accurate knowledge about healthcare system changes. Internet access is being increasingly recognized as a social determinant of health, and this has been supported by the Federal Communications Commission [36]. Advocating for increased broadband in rural areas and access to smartphones for all PLWH is essential to ensure equitable access to health information [37]. In addition to knowledge benefits, HIV stigma scores were lower with increasing access to the internet. Additional work needs to be done to understand the interaction between internet access, stigma, and correct knowledge. As mentioned previously, stigma has been called one of the most significant barriers to ending the HIV epidemic [11]. Participants with higher stigma scores were less likely to demonstrate correct ACA knowledge. is raises the question of whether having good knowledge of the healthcare system helps decrease stigma, or if factors that contribute to higher stigma scores are also barriers to accessing knowledge of the healthcare system. Our data revealed similar patterns about what characteristics are associated with HIV-related stigma as many previous studies [38]. Compared with HIV clinicians and general clinicians, there was lower trust for health insurance companies. is is not surprising given that, before the ACA was passed in 2010, HIV was essentially an uninsurable pre-existing condition in the private marketplace [39]. Due to this issue, having health insurance is relatively new for many PLWH. After the full implementation of the ACA in 2014, the percentage of PLWH with private insurance was estimated to double [1]. It was surprising that the entities that support the RWHAP and ADAP, the federal and state government, did not seem to have much trust from the participants. e RWHAP clinics, ADAP, and ADAP-supported QHPs were generally viewed as beneficial or necessary in the qualitative analysis of this same population's interviews [9] and in the Kaiser Family Foundation's focus group studies [7,8]. Based on the findings from these participants, it is possible that any goodwill accorded to the governmental bodies for these programs is outweighed by other laws or policies. Looking at trust overall, this study's results suggest that new initiatives or changes to how healthcare is delivered to PLWH may be better accepted if they are communicated from HIV or general clinicians, rather than coming directly from insurance companies or the government. Given the constraints of clinic flow and timing, these messages may need to be electronically delivered, as discussed above. In terms of looking at specific groups that may need more educational outreach, participants who engaged in illicit drug use reported that they did not feel that they had enough information about the ACA to make informed decisions about their health. When examining ACA attitudes, participants with a history of problem drinking were less likely to believe that the ACA will improve their non-HIV-related healthcare. is could be due to them factoring in their own personal experience or the historically low treatment rates for people with alcohol use disorder [40]. However, due to the ACA, QHPs must cover Essential Health Benefits which include substance use disorder treatment. ere is some leeway at the state level to mandate what exact services must be covered, but this is the first time that any treatment for substance use disorder has to be covered in the US [41]. is study has several limitations including that there was no information collected on those who chose not to participate and the possibility of unmeasured confounding. Moreover, ACA knowledge was measured with only 4 questions. e findings may not be representative of the US given the limited geographic scope. Additionally, all participants were enrolled in ADAP-funded QHPs and received care at RWHAP clinics, which means there was homogeneity in how participants' care was being supported and delivered. e study also has a small sample size. Additional research is needed in larger groups. Participants were recruited from HIV clinic visits, so this population is likely more engaged with the healthcare system and may have a more positive view of the healthcare system than people who are not regularly seeking care. Lastly, as a hypothesis-generating study, we did not use a Bonferroni correction, given that it is a conservative test that protects from type I error, but increases type II errors [42]. Results were presented as they were calculated, and readers should interpret the results in the context of the overall descriptive study. Since this survey was completed, Virginia has expanded Medicaid [43], so it is possible that people's method or ability to access healthcare, attitudes toward the ACA, or correct ACA knowledge may have changed. Nevertheless, the healthcare system will continue to shift and change. PLWH may not be aware of their knowledge gaps, as systems change. HIV clinicians are a trusted source, HIV case managers are a highly utilized source, and websites are associated with correct ACA knowledge. Combining these three, internet-based videos of HIV clinicians and case managers could help to educate PLWH about the ACA and its impact on HIV care delivery. Lack of internet and stigma pose threats and need to be addressed. Future larger studies should examine how knowledge, stigma, trust, and attitudes may impact the healthcare decisions of PLWH. --- Data Availability Access to the survey data used for this study is restricted by the University of Virginia Institutional Review Board in order to protect patient's privacy. Data are available from Dr. McManus for researchers who meet the criteria for access to confidential data. --- Disclosure e content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. --- Conflicts of Interest Dr. McManus reports an investigator-initiated research grant from Gilead Sciences, Inc., and stock ownership in Gilead Sciences, Inc. Dr. Dillingham reports an investigatorinitiated research grant from Gilead Sciences, Inc, and consulting for Warm Health Technology, Inc.

Background. Many AIDS Drug Assistance Programs (ADAPs) purchased Affordable Care Act (ACA) Qualified Health Plans (QHPs) for low-income people living with HIV (PLWH). To date, little has been published about PLWH's perspective on the ACA. We explored ACA knowledge, HIV stigma, trust in the healthcare system, and ACA attitudes among PLWH with ADAPfunded QHPs in Virginia. Methods. Participants were surveyed about demographic characteristics, ACA knowledge, HIV stigma, trust in various healthcare and government entities, and attitudes toward the ACA. Descriptive statistics were used. We assessed for associations (1) between baseline characteristics and correct ACA knowledge, HIV-related stigma, trust, and ACA attitudes and (2) between correct ACA knowledge and the following data: sources of ACA knowledge, HIV stigma, and trust. Results. Participants (n � 53) were a vulnerable population based on the assessment of social determinants of health, and 30% had correct ACA knowledge. Almost three-fourths of participants used HIV clinic case managers for ACA information. Participants who used websites for ACA information had correct ACA knowledge more often compared to those that did not (71% vs. 15%; p � 0.001). ose with correct ACA knowledge had lower stigma scores compared to those without correct ACA knowledge (93.8; SD: 15.4 vs. 108; SD: 20.3; p � 0.01). Participants trusted HIV clinicians more than general clinicians and insurance companies. No association was found between having correct ACA knowledge and endorsing having enough information about the ACA to understand how it will impact their HIV care. Conclusions. Websites imparted accurate ACA information. HIV clinic case managers were the most used source, and HIV clinicians were a trusted source of information. HIV clinicians and case managers should consider disseminating information about the ACA and its impact on HIV care delivery via internet videos. Lack of internet and stigma are a threat to PLWH gaining actionable healthcare information.

Introduction Human immunodeficiency virus stigma is a welldocumented barrier to the health and well-being of people living with HIV. As described by Goffman [1], stigma is a discrediting attribute that reduces a person from a whole person to a tainted or discounted person. HIV stigma has been associated with delaying or avoidance of HIV testing [2][3][4], poor adherence to antiretroviral therapy [5,6], increased risk behaviors [7], and poor engagement with care [8]. In addition, people living with HIV experience numerous mental and psychological sequelae of stigma, including stress, fear, anxiety, and depression [9][10][11][12]. Recent studies have shown that people living with HIV who report experiences of HIV stigma also report lower levels of perceived social support [12][13][14][15]. Social support refers to the provision of psychological and material resources by people within one's social network [16]. The finding that people living with HIV who are more vulnerable to stigma also have less access to social resources has profound public health consequences because social support has been associated with powerful health benefits for people living with HIV. These include less depression [10], positive health behaviors such as adherence to medication [6], improved coping and quality of life [17], and slower progression of disease to AIDS [18]. These benefits have been understood in the context of a larger body of literature examining social support and health. The mechanisms underlying the health benefits of social support have been attributed to its various functional components, which include informational, emotional , and instrumental support [16,19,20]. Starting with the 1979 study by Berkman and Syme [21] who showed that social isolation was a significant risk factor for mortality, research on social support and health has shown that social support fosters psychological well-being, enhances self-esteem and selfefficacy, reduces physiological arousal, and promotes functional and adaptive coping with stressors [20,[22][23][24]. These psychosocial benefits translate to improved health through decreased physiological stress responses, engagement in health-promoting behaviors, and avoidance of healthdamaging behaviors [20,[22][23][24]. --- Conceptual Model Based on evidence that stigma is a multidimensional construct, researchers have developed and utilized a conceptual model that separates the experience of stigma into interpersonal and intrapersonal experiences. The interpersonal experience of stigma is called enacted stigma and is defined as discriminatory behaviors directed towards people with the stigmatized condition [25]. The intrapersonal experience of stigma is called internalized stigma and is the endorsement and internalization of negative evaluations held by others [26][27][28]. Models of stigma describe how people internalize stigma when they perceive the negative stereotypes to be legitimate, and suffer negative cognitive, emotional and behavioral consequences, such as ambivalence about identity, low-self esteem, and low self-efficacy [26,27,29,30]. While the terminology may vary, these concepts of enacted and internalized stigma are used widely in other health conditions, such as obesity [31] and mental health [32], to understand the differential effects of these two dimensions of stigma on health behaviors and outcomes. Historically, models of stigma have predominantly focused on individuals-the stigmatized person and the stigmatizing person-and their cognitive, affective, and behavioral processes, but recent sociological and anthropological work have proposed to embed stigma in the social space [33]. These works demonstrate that stigma is a social experience in which the effects of stigma extend to the affected individual's social ties, and in which those social ties in turn shape the experience of the stigmatized individual. Qualitative studies have demonstrated that family members of people living with HIV become reluctant to disclose to others the serostatus of the affected family member for fear of discrimination and loss of social standing in their community [9,34]. Furthermore, close social ties can often be the source of stigmatizing attitudes and actions. People living with HIV experience avoidance, ostracism, and verbal insults from their friends and family [9], and some studies theorize that the enactment of stigma is in response to the devalued status they acquire through association with the stigmatized person [34]. While HIV stigma strains existing close relationships, it can also profoundly limit the ability of people living with HIV to seek new relationships. One proposed mechanism is the lack of disclosure. Disclosure is essential for people to receive social support; yet, fear of discrimination prevents people living with HIV from disclosing their status [35,36], and the higher their level of internalized stigma, the more likely they are to avoid disclosure and interactions with others [11,37]. Finally, HIV stigma has been correlated with depression [10,12], which may further limit the capacity of people living with HIV to form and maintain social relationships. These mechanisms take on particular significance in Uganda, where HIV stigma is a prominent concern among people living with HIV with profound implications for their social experience. In one study conducted in Uganda, fear of HIV serostatus disclosure was the most common concern voiced by people living with HIV and was noted by more participants than concerns about lack of food [38], which is notable in light of the high prevalence of food insecurity among people living with HIV [39,40]. Recent findings linking social support and HIV stigma, though suggestive, have been based on cross-sectional data [12][13][14] or data from two time points [15], limiting our ability to illuminate the dynamic relationship between social support and HIV stigma. Furthermore, these studies have not examined how the interpersonal and intrapersonal dimensions of HIV stigma could differentially affect the social experience of people living with HIV. To address these gaps in our current understanding of HIV stigma and social support, we examined the dynamic relationship between two dimensions of social support and two dimensions of HIV stigma using longitudinal data collected from people living with HIV receiving ART at a public hospital in rural southwestern Uganda. The primary aim of our analysis was to use time-lagged models to understand how the interpersonal and intrapersonal experiences of HIV stigma shape the social support networks of people living with HIV in rural Uganda, and to understand how these relationships in turn shape their experience of HIV stigma. --- Methods --- Setting and Participants We used data from an ongoing, prospective cohort of people living with HIV initiating ART in rural Uganda. Eligibility criteria included having no prior history of treatment with ART, being over 18 years of age, and living within 20 km of the Immune Suppression Syndrome Clinic at the Mbarara Regional Referral Hospital. The ISS Clinic is located in Mbarara District, 275 km southwest of Kampala, and provides free ART for people living with HIV in southwestern Uganda, Rwanda, and the Democratic Republic of Congo [41]. Most participants live in outlying villages surrounding the town of Mbarara, spending an hour on average to travel to the clinic by paid motorbike and on foot [42]; live in multigenerational households with other relatives living close by; engage in subsistence agriculture; and frequently interact with other members of the community through religious services, agricultural work, and community gatherings. The predominant ethnic group is Ankole, and the local language is Runyankole. Our analyses are based on data from participants who were enrolled into the cohort from 2007 through 2010. Survey questions were translated into Runyankole, back-translated into English, further modified through focus groups with key informants, and pilot-tested to ensure clarity and relevance. Trained research assistants who spoke Runyankole interviewed participants every 3 months in a private room at a research office near the ISS Clinic. Each survey took approximately 1 h to complete. Informed consent was obtained from all study participants. Ethics approval for all study procedures was obtained by the Committee on Human Research, University of California at San Francisco; the Partners Human Research Committee at Massachusetts General Hospital; and the Institutional Ethical Review Committee, Mbarara University of Science and Technology. Consistent with national guidelines, we received clearance for the study from the Uganda National Council for Science and Technology and from the Research Secretariat in the Office of the President. --- Measures The four variables of interest were emotional social support, instrumental social support, internalized stigma, and enacted stigma. We measured social support using the Social Support Scale [43], which contains six items on emotional support and four items on instrumental social support. This scale was adapted from the Duke/University of North Carolina Functional Social Support Questionnaire, which was designed to measure multiple dimensions of social support among patients in a primary care setting [44]. Higher scores reflect higher levels of social support. We measured internalized HIV stigma using the Internalized AIDS-Related Stigma Scale, which contains six items corresponding to the guilt, shame, and worthlessness described in Goffman's conceptualization of stigma [45,46]. The internalized stigma scale has demonstrated good internal reliability, a coherent internal structure, and good construct validity among people living with HIV in rural Uganda [47]. To measure enacted stigma, we asked participants about whether they had experienced ten different discriminatory events in the past 3 months as a result of their HIV status, such as abandonment, housing, property loss, or physical violence . These questions were adapted from a previous publication by Nyblade et al. [48]. We created an enacted stigma index by constructing a total count of the different types of discriminatory events experienced, with higher index scores indicating greater intensity of enacted stigma. Of note, we did not have any a priori expectation that the variables would be internally consistent because these different events are diverse in both severity as well as potential drivers. Nonetheless, for the sake of comparison with our other variables of interest, we calculated the reliability of the index at baseline. --- Statistical Analysis In our regression models, we adjusted for baseline and quarterly health status using the Medical Outcome Study-HIV Physical Health Summary [49,50] and CD4+ Tlymphocyte cell count. A higher PHS score reflects a better health status. Because prior studies have shown that both HIV stigma and low social support are associated with depression [10,12], we also adjusted for depression symptom severity. We measured depression symptom severity using a version of the 15-item Hopkins Symptom Checklist for Depression [51] that was adapted to the local context with the addition of a 16th item, "feeling like I don't care about my health" [10,52]. We restricted our calculation of the score to the 12 affective items in light of prior research suggesting that the somatic items overlap with symptoms of HIV infection and may inflate the prevalence of depression among people living with HIV [53,54]. Participants were classified as having probable depression based on the conventional threshold score of 1.75 [55]. We adjusted for a range of other baseline demographic and socioeconomic covariates with potential for influencing the relationships among stigma, social support, and health. We measured household wealth using a household asset index [56], which was entered into the models as a continuous variable, with higher values of the asset index indicating greater household wealth relative to other households in the sample. We also adjusted for baseline age, sex, educational attainment, and marital status. Time on treatment was measured in years since starting ART. Data analysis was conducted using SAS statistical software . We employed multilevel modeling to address the lack of independence among residuals in the hierarchically structured data. Since our data consisted of measures that are nested within individuals, measures from the same individual may share common, unobserved characteristics that may affect the outcomes of interest. Our modeling technique allowed us to separate the composite residual into two parts: a measure-level residual unique to the particular time at which the survey was conducted, and an individual-level residual unique to a particular individual . We used multilevel models for change, in which the models are specified by simultaneously postulating a pair of subsidiary models: a level-1 submodel that describes how each individual changes over time, and a level-2 submodel that describes how these changes differ across individuals [57]. Our level-1 submodel stipulated that the trajectories of stigma and social support are linear with time. To examine the effects of each of the two social support dimensions on each of the two stigma dimensions and, reciprocally, the effects of each of the stigma dimensions on each of the social support dimensions, we specified eight contemporaneous regression models. First, in two regression models, internalized stigma was specified as the outcome, with instrumental and emotional social support alternately included as the main predictors . Second, enacted stigma was specified as the outcome, with instrumental and emotional social support alternately included as the main predictors. Third, emotional social support was specified as the outcome in two regression models, with internalized and enacted stigma alternately included as the main predictors. Finally, instrumental social support was specified as the outcome, with internalized and enacted stigma alternately included as the main predictors. We also fitted lagged-covariate models, in which each of the predictors of interest were lagged by 3 months, adjusting for covariates and the lagged outcome variable. In total, we fitted 16 regression models: 8 models in which the explanatory variables of interest were measured contemporaneously with the outcomes and 8 models in which the explanatory variables were measured with a 3-month lag. --- Results Table 1 presents the baseline demographic characteristics of the 422 participants. The average age of participants at baseline was 35 years, and they were enrolled in the study for a mean of 2.3 years . The majority of participants [298 ] were female. Approximately half were married and half were widowed or divorced. Most [357 ] had completed primary school or more. The mean internalized stigma score at baseline was 1.3 points with a range of 0-6, the mean enacted stigma score was 0.4 points with a range of 0-7, the mean emotional social support score was 3.8 points , and the mean instrumental social support score was 3.6 . The mean CD4 count at baseline was 230 cells/mL . Sixteen percent of participants screened positive for probable depression at baseline. Throughout the study period, the most frequently endorsed item on the internalized stigma scale was "difficult to tell other people about my HIV status," , followed by "I hide my HIV status from others," [832 ]. Similarly, the most frequently endorsed form of enacted stigma was "being gossiped about," [768 ] followed by "being teased or insulted" [201 ]. At baseline, the Cronbach's alpha of the internalized stigma scale was 0.73. Both social support subscales showed good internal reliability at baseline , as did the social support scale as a whole . The Cronbach's alpha for the enacted stigma index was 0.56. Preliminary analyses supported the use of multilevel models for change and lagged models. Briefly, empirical growth plots showed substantive changes within individuals over time in enacted stigma, internalized stigma, emotional social support, and instrumental social support. Furthermore, intraclass correlation coefficients indicated large variability within individuals over time. The intraclass correlation for emotional social support was 0.53, indicating that an estimated 53 % of the total variation in social support was attributable to differences between individuals while 47 % was attributable to variability over time within individuals. Overall, over the entire study period, 198 participants had a negative slope over time for internalized stigma while 69 had a slope of zero and 155 had a positive slope. Averaged across all participants, internalized stigma decreased at a rate of 0.13 points per year. Similarly, the intraclass correlations for enacted stigma, emotional social support, and instrumental social support were 0.74, 0.83, and 0.72, respectively. --- Internalized Stigma In the contemporaneous models specifying internalized stigma as the outcome, we found no relationship between internalized stigma and either emotional or instrumental social support . In the lagged-covariate models, we found an inverse relationship between internalized stigma and lagged emotional social support. A 1-point increase in emotional social support was associated with a 0.13-point decrease in subsequent internalized stigma , a 10 % relative difference compared to the baseline value. There was no statistically significant association between internalized stigma and lagged instrumental social support. In all four models, higher levels of self-reported physical health and lower levels of depression were correlated with lower levels of internalized stigma. --- Enacted Stigma In the contemporaneous models with enacted stigma as the outcome, we found that individuals with higher levels of emotional social support or instrumental social support reported lower levels of enacted stigma . A 1-point increase in emotional social support was correlated with a 0.30-point decrease in enacted stigma , and a 1point increase in instrumental social support was correlated with a 0.16-point decrease in enacted stigma . In the lagged-covariate models, we found that lagged instrumental social support was negatively correlated with subsequent enacted stigma , but we found no statistically significant relationship between lagged emotional social support and subsequent enacted stigma. A 1-point increase in lagged instrumental social support was correlated with a 0.07point decrease in subsequent enacted stigma. In all four models, higher levels of education, wealth, and physical health status were consistently associated with lower levels of enacted stigma. Emotional Social Support In the contemporaneous models with emotional social support as the outcome, we found that individuals with higher levels of internalized stigma or enacted stigma reported lower levels of emotional social support . Each 1-point increase in the internalized stigma scale was associated with a 0.014point decrease in the emotional social support scale . Each one-point increase in enacted stigma was correlated with a 0.095-point decrease in emotional social support . In the lagged-covariate models, lagged internalized stigma was negatively correlated with subsequent emotional social support , and lagged enacted stigma was negatively correlated with subsequent emotional support . In all four models, higher levels of wealth and physical health status were correlated with higher levels of emotional social support. --- Instrumental Social Support In the contemporaneous models with instrumental social support as outcome, we found that individuals who reported higher levels of enacted stigma reported lower levels of instrumental social support, but we found no statistically significant relationship between internalized stigma and instrumental social support . A 1-point increase in enacted stigma was associated with a 0.11-point decrease in instrumental social support . In the lagged-covariate models, lagged enacted stigma was negatively correlated with subsequent instrumental social support , but lagged internalized stigma did not have a statistically significant relationship with subsequent instrumental social support. In all four models, higher levels of education, wealth, and physical health status were correlated with higher levels of instrumental social support, while higher CD4 counts were associated with lower levels of instrumental social support. We further examined this apparently paradoxical relationship between instrumental social support and CD4 count. We estimated the effect of the two dimensions of stigma and two dimensions of social support on CD4 count using four multilevel modeling controlling for covariates, and found no statistically significant relationship between internalized stigma, enacted stigma, or emotional social support with CD4 count . However, we found that individuals who reported higher levels of instrumental social support had lower CD4 counts and that a 1-point increase in instrumental social support was correlated with a 14.7 decrease in CD4 count . We conducted exploratory subgroup analyses to further explore this finding and estimated the effects of interactions between sociodemographic variables and instrumental social support. We found that the joint interaction between gender and instrumental social support did not have a statistically significant relationship with CD4 count, but that the joint interaction of education and instrumental social support as well as the joint interaction of marital status and instrumental social support were statistically significant predictors of CD4 count. We also estimated separate multilevel models with CD4 count as the outcome and instrumental social support as the main predictor for men and women, married and unmarried participants, and participants with and without education. We found that instrumental social support was a statistically significant predictor of CD4 count for men (b =-22.0; 95 % CI, -38. Figure 1 summarizes the lagged relationships between the two dimensions of stigma and two dimensions of social support. In summary, low levels of instrumental social support are associated with high subsequent levels of enacted stigma, which in turn are associated with lower subsequent instrumental social support. High levels of enacted stigma are associated with low subsequent levels of emotional support. Low levels of emotional social support are associated with high subsequent levels of internalized stigma, which in turn are associated with even lower subsequent levels of emotional support. --- Discussion In this longitudinal analysis of data from people living with HIV initiating ART in rural Uganda, we found evidence that enacted stigma may compromise the ability to access both emotional and instrumental support from friends and family. We also found that internalized stigma may compromise the ability to access emotional support. At the same time, we found that instrumental social support was protective against future experiences of enacted stigma but not against internalized stigma. Finally, emotional social support was protective against future internalization of stigma, but not future experiences of enacted stigma. The estimated associations were strong, large in magnitude, and robust to lagged specifications that ensured a temporal ordering between the exposures and outcomes. One of our primary findings was that the relationship between enacted stigma and social support was bidirectional. Lagged enacted stigma had an inverse association with both emotional and instrumental social support, indicating that people living with HIV who experienced discrimination lost social support. Lagged instrumental social support had an inverse association with subsequent enacted stigma, indicating that people living with HIV who had less access to instrumental social support experienced more subsequent discrimination. These findings suggest that enacted stigma may trigger a vicious cycle, in which friends and family of people living with HIV abandon the HIVaffected person, and themselves become perpetrators of discrimination toward people living with HIV. One explanation may be that friends and family members become targets of discrimination by association. Goffman [1] describes this stigma by association, called courtesy stigma, as the process in which people who are "related through the social structure to a stigmatized individual…are all obliged to share some of the discredit of the stigmatized person" . Goffman [1] further added that courtesy stigma "provides a reason why such relations tend either to be avoided or to be terminated" . Bogart and colleagues [9] similarly reported that people living with HIVexperience avoidance and ostracism by family members and friends, as well as overt acts of discrimination or hurtful remarks from those who remained in contact. Yang and colleagues [34], using the example of mental illness in Hong Kong, proposed that stigma threatens the moral standing of the family and friends, and the family members' fear of social contamination and loss of face motivated them to abandon and discriminate against their ill family member. A second primary finding of our study was that there was an inverse and bidirectional relationship between emotional social support and internalized stigma. The inverse association between emotional support and reduced subsequent internalized stigma is consistent with previously published findings from cross-sectional studies [12,13,15,32]. The social cognitive behavioral model of internalized stigma holds that stigmatized people are more likely to endorse demeaning beliefs when they blame themselves for negative evaluations or when they do not have positive self-perceptions [26]. Having emotionally supportive family and friends may help decrease the perceived legitimacy of negative evaluations and help people living with HIV develop a more positive sense of self, leading to less internalization of stigma. Conversely, lagged internalized stigma was inversely associated with emotional social support, indicating that people living with HIV who internalize stigma are less able to have supportive relationships with friends and family. This is consistent with reports that people with high internalized stigma are less likely to disclose their HIV status to their friends and family or to solicit support from them [12,37]. Internalized stigma has also been associated with depression [10,12], which could also compromise the affected persons' effectiveness in maintaining supportive relationships. Furthermore, caring for people living with HIV exerts substantive physical and psychological burdens on their caregivers, particularly in the setting of depression [58]. This could result in a negative "feedback loop" of social support [23], in which the strain of supporting a person with a serious illness results in caregivers withdrawing and severing the relationship in order to cope with the strain. How can we understand why individuals living with HIV who report high levels of perceived instrumental social support subsequently report low levels of enacted stigma, but not internalized stigma, while those who report high levels of emotional social support subsequently report low levels of internalized stigma, but not enacted stigma? We hypothesize that having friends and family who provide tangible help with tasks and finances can protect the person from becoming targets of external, visible acts of discrimination and insults. However, such transactional relationships may not be as helpful as emotionally supportive relationships in protecting people living with HIV from endorsing negative views about themselves and losing self-esteem. While internalized stigma has been implicated in loss of self-efficacy such as that required for the disclosure of HIV serostatus to partners [27], the null association between lagged internalized stigma and instrumental social support may reflect that this loss of self-efficacy is most relevant to intimate, emotional relationships. Our results confirm the conceptual difference [11] between enacted stigma and internalized stigma by showing that internalized and enacted stigma each originate from different interpersonal processes. These findings suggest that people living with HIV who are most affected by HIV stigma may suffer the additional burden of losing social support. The emotional and material resources provided by social support are critical for people living with HIV in resource-poor settings like Uganda, who must address day-to-day economic challenges while adhering to ART, maintaining positive health behaviors, and coping with the burden of illness and stigma. In one qualitative study of 252 individuals living with HIV in three sub-Saharan African countries, social relationships were critical for maintaining ART adherence, not only because individuals living with HIV relied on them for transport to clinic, encouragement, and regular reminders but also because of the social expectations that created obligations for people living with HIV to adhere [59]. We acknowledge several limitations of this study. First, our measures are self-reported and therefore suffer challenges generic to all analyses based on self-reported data. Second, it is difficult to disentangle the extent to which the estimated associations may simply reflect an unmeasured common factor. However, in the lagged models, we examine determinants of stigma or social support after adjusting for lagged values of the variables. Third, the perception of social support may not correlate perfectly with the actual degree of social support received. However, prior studies have demonstrated that perceived social support is more predictive of health outcomes than actual social support for people living with HIV/AIDS [60]. Fourth, our study sample consisted of individuals living with HIV who were initiating ART. Given that stigma is known to compromise the ability of people living with HIV to access and adhere to ART [6,61], and given that access to ART has been shown to lower stigma [62][63][64], it is likely that overall levels of internalized stigma were lower in our sample compared to untreated individuals living with HIV. Because social support is also known to be positively associated with treatment access [59], this could have biased our estimates away from the null. Fifth, the enacted stigma index had a relatively low reliability, which was expected given the diversity of behaviors included in the index. The lack of internal consistency simply increases the amount of random noise so that regression models in which enacted stigma was specified as the dependent variable would have yielded estimates that were biased towards the null. The mean of the internalized stigma and enacted stigma scores were low, but comparable to those found in the literature [45]. Finally, the cut-off for the Hopkins Symptom Checklist used to determine probable depression is based on studies conducted in Western populations, and we acknowledge that this specific cutoff has not been validated in the Ugandan context. Of note, we found that internalized stigma, enacted stigma, and emotional social support did not have statistically significant associations with CD4 count and that instrumental social support had an inverse association with CD4 count. This finding is paradoxical in that social support is generally thought of as being linked with better ART adherence [6] and other positive health behaviors. However, there are likely multiple pathways leading from social support to improved health, so extrapolating a direct association from the data may not be warranted. In addition, instrumental social support may not have uniformly beneficial effects on health, especially in settings where the nature of the support does not meet the recipient's needs. For example, instrumental social support has been found to increase dependency and disability among older adults [65] or worsen glycemic control among people with diabetes mellitus [66]. Further research is indicated to clarify these associations among people living with HIV. In summary, we found that enacted stigma may compromise the ability of people living with HIV to access support from close social ties, and that instrumental social support may be protective against future experiences of discrimination. We also found that emotional social support may be protective against future internalization of stigma. Taken together, our findings provide unique longitudinal evidence on the bidirectional relationships between stigma and social support. They also suggest the potentially powerful impacts that antistigma interventions may have on the lives of people living with HIV by interrupting the vicious feedback loop between stigma and social isolation. --- Conflict of Interest The authors have no conflict of interest to disclose.

Background Cross-sectional studies show that human immunodeficiency virus (HIV) stigma is negatively correlated with social support. Purpose The purpose of this study is to examine the bidirectional relationship between social support and HIV stigma. Methods We collected quarterly data from a cohort of 422 people living with HIV in Uganda, followed for a median of 2.1 years. We used multilevel regression to model the contemporaneous and 3-month-lagged associations between social support and both enacted and internalized stigma. Results Lagged enacted stigma was negatively correlated with emotional and instrumental social support, and lagged instrumental social support was negatively correlated with enacted stigma. Internalized stigma and emotional social support had reciprocal lagged associations. Conclusions Interventions to reduce enacted stigma may strengthen social support for people living with HIV. Improved social support may in turn have a protective influence against future enacted and internalized stigma.

Introduction Social media such as blogs, forums, chat applications, and social networking are platforms for online interactions regardless of a user's physical location [1] and have become integrated into daily life. Twitter is a growing microblog that allows users to send text messages composed of up to 280 characters [2]. User activities on social media have been subjected to data collection and monitoring and are considered meaningful data sources for various public and private organizations, including in the industry and academia. The largest use of social media data comes from microblogs, as much as 46% [1]. Twitter data can be used in a remarkably diverse number of research studies, such as sentiment analyses [3,4], text analyses [5][6][7][8], opinion analyses [9,10], as well as analyses of influence or information diffusion [11][12][13][14]. Studies of information diffusion on Twitter are important as it is a topic that continues to attract researchers' attention and is a subject useful for scrutinization and various advanced analyses. Information diffusion is defined as the process of information travelling from a sender to a set of receivers through a carrier. In the case of Twitter, the sender is the user who posted the tweet, the carrier is the tweet that was posted, and the recipients are followers of the user who posted the tweet [15]. A user is influential regarding delivering tweets if their messages can spread to many other Twitter users. In this case, these people with a strong influence in the Twitter network are called influencers [16]. Various themes and methods related to the study of information diffusion on Twitter have been investigated, such as comparing influential measures [17], finding the most influential users [11,[18][19][20][21], maximizing influence [22][23][24], measuring the influencer index [25,26], and modeling the diffusion of information [11,27]. Although some studies on information diffusion in social networks exist, such as [28][29][30][31][32][33][34][35], the following have not been studied in previous literature reviews: article selection reviewed according to the SLR procedure, a bibliometric analysis and theme evolution approach, the determination of research objectives related to the information diffusion model on Twitter, and the metrics and measures used by researchers. This study applied a systematic literature review as an approach to obtain an overview of existing studies and trends related to information diffusion and social media, especially on Twitter. Our work proposes a bibliometric analysis that allows us to know popular places and networks from which authors conducting research on information diffusion and social influencers gather their data. We also conduct an evolution analysis, allowing us to detect the changes in topics over time. In other words, this paper gives a survey report and systematically presents existing studies on information diffusion and Twitter analysis from the perspective of the methods, metrics, and measures used. We added a bibliometric analysis to assess the evolution of themes year after year, which has not been covered in previous review articles. To be precise, the SLR that is used in this paper is a method of identifying, evaluating, and interpreting all existing research relevant to a phenomenon of interest [36]. Referring to [36], the determination of a research question is based on the research objectives. We studied the topic of information diffusion on Twitter in our research, so we read several articles related to information diffusion, such as [12,14,21]. Varshney et al. [12] aimed to predict the probability of information diffusion and used a Bayesian network method based on tweet/retweet metrics. Kumar et al. [14] used the susceptible-exposed-infected model to model the diffusion of information on Twitter. Meanwhile, Oo and Lwin [21] used PageRank to measure the influence of users on Twitter. Through a discussion of the study results from all of these authors, we determined the RQs. Thus, in this paper, we focus on information diffusion on Twitter and answer the following research questions : 1. What are the purposes of information diffusion-related research on Twitter? 2. What methods have researchers used regarding the information diffusion model on Twitter? 3. What metrics from Twitter data do researchers use? 4. What measures do researchers use to determine influencer rankings? Information on Twitter spreading from one user to another fulfills the nature of a Markov chain, that is, the information redistributed by the next user depends only on the current user's information and does not depend on the history of the previous dissemination of information [11]. This means that information diffusion on Twitter can be modeled with the continuous time Markov chain . In this paper, we aim to find gaps in the research theme of CTMC in modeling information diffusion on Twitter. To conduct this research, we applied bibliometric analysis software, namely VOSviewer and R-bibliometrix. VOSviewer was used to implement co-authorship-author, co-authorshipcountry, and co-occurrence-word analyses. Meanwhile, R-bibliometrix with the biblioshiny web interface was employed to assess the evolution of themes. This paper is structured as follows: Section 2 provides a related literature review. Section 3 presents the research method, especially the method used to collect the articles for analysis. In Section 4, we describe the bibliometric analysis of the papers obtained using two software and the results of a study on the selected articles covering research about information diffusion on Twitter, the methods used in information diffusion modeling on Twitter, the metrics used in Twitter data, and the measures used to determine the rank of influencers. Section 5 comprises the discussion and further research agenda. Section 6 concludes this article. --- Related Literature Review Several surveys or literature reviews have been conducted regarding the study of information diffusion on social networks in general and not specifically on Twitter. No previous review articles performed a complete systematic literature review. Kakar and Mehrotra [28] conducted a review of 90 filtered papers from six databases: namely, Scopus, Science Direct, ACM Digital Library, Springer, IEEE, and Google Scholar. This work focuses on three research areas under the umbrella of information diffusion in social networks, namely influence modeling, influence maximization, and retweet prediction. However, it did not discuss the metrics and measures used by researchers. Razaque et al. [29] conducted a review focused on the classification of information diffusion models and the vulnerability of each model. However, this work did not discuss network influencers and how to maximize influence within the network. Alamsyah and Rahardjo [30] investigated social networks from the perspective of graphical representations to find the SN taxonomy. It included the SN topology, structural modeling, community detection, tie strength, community detection, as well as metrics. Graphical representation techniques were the focus of this study, rather than discussing information diffusion models. Hamzah [31] reviewed 49 articles filtered from six databases, namely the ACM Digital Library, Google Scholar, IEEE Xplore, Science Direct, Springer Link, and Taylor & Francis Online. This article discussed machine learning and visualization techniques used for Twitter analytics. In this work, neither network influencers nor information diffusion analysis techniques based on the perspective of user behaviors were discussed, and the focus was more toward identifying social vulnerabilities. Meanwhile, a survey conducted by [32] divided the diffusion model into two categories, namely explanatory models and predictive models. This explanatory model included epidemic models and influence models, while the predictive model included the independent cascade model , the linear threshold model , and the game theory model . Singh [33] analyzed how information dissemination is carried out through networks and how people influence each other on social networks. This survey focused on maximizing influence with LTM, ICM, and epidemic models but did not discuss the metrics and measures used by researchers. Firdaus et al. [34] conducted a survey on the information diffusion mechanism on Twitter. The authors focused on predicting tweets: starting from how to retrieve Twitter data, users who post tweets, tweet content, and predicting whether a tweet will be retweeted. Machine learning techniques were used for the tweet prediction. Additionally, some of the measures used to evaluate the performance of the model were discussed. This work did not discuss influence maximization or influential users on Twitter. Riquelme and González-Cantergiani [35] conducted a survey on the size of a user's influence on Twitter. This work collected and classified various measures of influence on Twitter. Some were based on simple metrics, and some were based on complex mathematical models. Various criteria were given to determine the most influential users on Twitter. However, an information diffusion model was not discussed in this work. What is different about our work compared with that of previous researchers is the systematic literature search conducted on studies of information diffusion models, especially on Twitter. We also added a bibliometric analysis to describe the distribution of research topics regarding the diffusion of information and changes in themes that occurred during each time period. The aspects covered in our article and in existing reviews are summarized in Table 1. The SLR procedure that we carried out was referenced from [36]. SLR procedures include the search strategy, quality assessment, data extraction and monitoring, and data synthesis. Starting with database selection, we all agreed to choose four databases, i.e., Sco-pus, Science Direct, Dimensions, and Google Scholar. These four databases provide many articles from various domains such as science, engineering, computer science, medicine, social science, and others. We hope that our research can be considered a contribution to the field of research. The data from these four databases are quite demanding on our efforts to conduct a bibliometric analysis because the metadata of each database are different. Referring to [37], our keyword selection was performed through RQ analysis and by looking at related papers. We all agreed on the keywords applied to the four databases. The keywords included "information diffusion", "user influence", "influence maximization", "social network", and "Twitter". Capturing all articles about information diffusion studies, especially on Twitter, was assumed to be sufficient. In the inclusion process, we decided together that the selected articles had to be articles that had been published in an English-language journal from 2000 to February 2021 . In the manual article-exclusion stage, two authors read the abstract and the article content to mark the article as being relevant or not. If opinions differed, another author participated in reading the abstract and the contents of the article and made the final decision. The complete research procedure carried out can be seen in Section 3. Twitter/SN? Bibliometric [28] × √ √ √ √ × SN × 2000-2019 [29] × × × √ × × SN × 2002-2017 [30] × × × × × √ SN × 1998-2012 [31] × √ × × × × Twitter × 2011-2016 [32] × × × √ √ × SN × 2001-2017 [33] × × × √ √ √ SN × 1978-2012 [34] × × × √ × √ Twitter × 2001-2015 [35] --- Methods In this section, we describe how this research process was carried out: namely, the collection of article data and the selection method. This study began with a systematic search for publications indexed in four selected databases: Scopus, Science Direct, Dimensions, and Google Scholar. The keywords used in this first search were OR OR OR . We limited publication time to 2000 as Twitter was founded in 2006, and we ended collection time in February 2021. We limited our search by only looking for journal article publications and excluded conference proceedings or books. We only included articles written in English and published in peer-reviewed in international journals. Data retrieval in the Scopus, Science Direct, and Dimensions digital libraries was carried out with a few keywords applied to the "title, abstract, and keywords". Meanwhile, in the Google Scholar database, the keywords were only applied to the title, since the Google Scholar search engine does not provide a search process using the abstract. The first step was to find all papers related to information diffusion. From these search activities, 2675 papers were obtained from Scopus, 850 papers were obtained from Science Direct, 2950 papers were obtained from Dimensions, and 5950 papers were obtained from Google Scholar. Then, we applied the inclusion filter using two new keywords, namely OR , aiming to acquire papers that included social media data or social networks when scrutinizing information diffusion. In this second round, several papers from the Scopus database were removed, reducing the number to 1211 papers. The number of papers from Science Direct decreased to 367 papers, while the number of papers from Dimensions and Google Scholars were brought down to 1090 and 110 papers, respectively. The filtering process continued by applying the keyword "Twitter" to capture papers examining information diffusion studies on Twitter. From this search, we obtained 199 papers from Scopus, 50 papers from Science Direct, 172 papers from Dimensions, and 3 papers from Google Scholar. A summary of the search results from the three filtering processes on the four databases can be seen in Table 2. Note that the "Type" column in Table 2 represents the use of the following keywords: A. OR OR OR ; B. OR ; and C. "Twitter". Furthermore, after semi-automatic selection of all articles with the three keywords in the four digital libraries, we removed 168 duplicate articles and 3 survey articles. Then, the selection of articles was carried out through the abstracts, obtaining 204 relevant articles. Next, we performed manual filtering by reading the full text and obtained 34 articles. Our general selection process is shown in Figure 1. A. OR OR ; B. OR ; and C. "Twitter". Furthermore, after semi-automatic selection of all articles with the three keyw the four digital libraries, we removed 168 duplicate articles and 3 survey articles the selection of articles was carried out through the abstracts, obtaining 204 releva cles. Next, we performed manual filtering by reading the full text and obtained 34 a Our general selection process is shown in Figure 1. --- Semi-Automatic Selection We developed a simple script using Python to select duplicate documents. We used Scopus articles as a reference for viewing duplicates in Dimensions, Science Direct, and Google Scholar. From this process, 122 Dimensions articles, 45 Science Direct articles, and 1 Google Scholar article were found to be redundant. After removing the duplicate articles, we obtained a total of 256 unique articles. --- Manual Selection The manual selection process was carried out in three stages: --- • First: We examined the title, abstract, and full text from the filtered articles to find articles conducting a survey or literature review. We removed three articles in the form of surveys, namely two articles from Scopus and one article from Dimensions. Thus, in total, from this stage, we obtained 253 articles. --- • Second: We examined the abstract to assess the relevance of the article to our research focus. Based on the abstracts, we discarded a total of 49 out of 253 articles, so we obtained 204 selected articles . Note that the original raw data returned from each digital library came in different formats. The selection results of this article originally had a different data format. Hence, we adjusted the article data for Dimensions, Science Direct, and Google Scholar in such a way that their formats were uniform to the raw file from Scopus. After restructuring all datasets into a homogeneous structure, bibliometric analysis was carried out for Dataset 1 . --- • Third: We thoroughly read the full text and the content and discussion of the articles to further evaluate their relevance. At this point, we obtained 34 articles , which were used further for our systematic literature review analysis. To sum up, we used Dataset 1 to conduct the bibliometric analysis as presented in Section 4.1 and Dataset 2 to discuss the results from the systematic literature review as presented in Section 4.2. The results of this semi-automatic and manual selection process are shown in Table 3. --- Bibliometric Analysis We performed a bibliometric analysis for Dataset 1. This analysis technique is often used for literature analyses intent on obtain bibliographic overviews of scientific selections of highly cited publications. It can recover a list of author productions, national or subject bibliographies, or other specialized subject patterns [38]. We performed the bibliometric analysis using VOSviewer and R-bibliometrix. VOSviewer is a computer program used for bibliometric mapping [39], while R-bibliometrix is a package from the open source R software with a shiny web interface capable of conducting comprehensive analyses and scientific mapping of data with complete bibliographic information [40]. Both software have their respective advantages in bibliometric analysis. For example, VOSviewer has better visualization and clear links among different nodes in the network images compared with R-bibliometrix. In contrast, R-bibliometrix has a Sankey diagram feature that is particularly useful in conducting thematic evolution analyses. --- Results --- Results from Bibliometric Analysis In this section, we present the results of the analysis using the network visualization, grid matrix, and Sankey diagram techniques. This analysis was divided into three parts: co-authorship-author and co-authorship-country, co-occurrence-words, and thematic evolution. In this section, the co-authorship analysis was conducted by examining the relationship between authors and their countries of origin. In VOSviewer, the co-authorship-author menu was selected by limiting each author to a minimum of one article. This means that all articles were analyzed. Based on this provision, VOSviewer obtained 559 authors, but only 70 authors were connected with other authors. The co-authorship-author relation was divided into nine clusters, namely red, yellow, green, blue, orange, pink, aqua, brown, and purple, as shown in Figure 2. In this case, the most productive author on the topic under study was Zhang, Y with five articles, followed by Zhang, C and Wang, Y with four articles each. have their respective advantages in bibliometric analysis. For example, VOSviewer has better visualization and clear links among different nodes in the network images compared with R-bibliometrix. In contrast, R-bibliometrix has a Sankey diagram feature that is particularly useful in conducting thematic evolution analyses. --- Results --- Results from Bibliometric Analysis In this section, we present the results of the analysis using the network visualization, grid matrix, and Sankey diagram techniques. This analysis was divided into three parts: co-authorship-author and co-authorship-country, co-occurrence-words, and thematic evolution. In this section, the co-authorship analysis was conducted by examining the relationship between authors and their countries of origin. In VOSviewer, the co-authorship-author menu was selected by limiting each author to a minimum of one article. This means that all articles were analyzed. Based on this provision, VOSviewer obtained 559 authors, but only 70 authors were connected with other authors. The co-authorship-author relation was divided into nine clusters, namely red, yellow, green, blue, orange, pink, aqua, brown, and purple, as shown in Figure 2. In this case, the most productive author on the topic under study was Zhang, Y with five articles, followed by Zhang, C and Wang, Y with four articles each. Furthermore, a bibliometric analysis was also carried out to assess the countries of origin of the authors involved in the network. The type of analytic used was the co-authorship-country relation, with the minimum number of documents from a country for a co-authorship being 1. VOSviewer detected 44 countries in our Dataset 1; however, only 36 countries had connections with other countries in the context of the co-authorship- Furthermore, a bibliometric analysis was also carried out to assess the countries of origin of the authors involved in the network. The type of analytic used was the coauthorship-country relation, with the minimum number of documents from a country for a co-authorship being 1. VOSviewer detected 44 countries in our Dataset 1; however, only 36 countries had connections with other countries in the context of the co-authorshipcountry relation. The 36 countries were divided into nine clusters, as shown in the network visualization in Figure 3. The clusters are indicated with different colors. From these results, the US had the most, with 68 articles ; followed by China, with 29 articles ; and then, India, with 23 articles . As an example, the visualization also tells us that the authors in the US cooperated with authors in various countries such as Denmark, Poland, Slovenia, China, Hongkong, Brazil, Vietnam, South Korea, Italy, India, the Netherlands, Germany, Canada, and the United Kingdom. country relation. The 36 countries were divided into nine clusters, as shown in the network visualization in Figure 3. The clusters are indicated with different colors. From these results, the US had the most, with 68 articles ; followed by China, with 29 articles ; and then, India, with 23 articles . As an example, the visualization also tells us that the authors in the US cooperated with authors in various countries such as Denmark, Poland, Slovenia, China, Hongkong, Brazil, Vietnam, South Korea, Italy, India, the Netherlands, Germany, Canada, and the United Kingdom. --- Visualization of Co-Occurrence-Word Relation To conduct a co-occurrence analysis in Dataset 1, we searched for the most frequent words that appeared in all documents. Dataset 1 contains data taken based on the title, keywords, and abstract only. VOSviewer has a support feature allowing us to conduct an assessment of the co-occurrence-author keyword relation from the menu on VOSviewer. We set up the minimum number of occurrences of a word in a document at two. From this, VOSviewer returned 467 words, and only 54 passed the threshold. The words that appeared at least two times in each document were divided into 12 clusters. The results show that the most frequent words appearing in Dataset 1 are "information diffusion", with 66 events; followed by "Twitter", with 44 events; and "social networks", with 37 events. This co-occurrence-word network visualization is shown in Figure 4. Note that the co-occurrence network has extensively been used in social media analyses and text analyses for discovering the relationships among people, organizations, concepts, and other areas of interests. Here, we observe that, for example, the information diffusion concept is often linked to various concepts, especially Twitter, social influence, social networks, user influence, contagion, and popularity prediction, to name a few. --- Visualization of Co-Occurrence-Word Relation To conduct a co-occurrence analysis in Dataset 1, we searched for the most frequent words that appeared in all documents. Dataset 1 contains data taken based on the title, keywords, and abstract only. VOSviewer has a support feature allowing us to conduct an assessment of the co-occurrence-author keyword relation from the menu on VOSviewer. We set up the minimum number of occurrences of a word in a document at two. From this, VOSviewer returned 467 words, and only 54 passed the threshold. The words that appeared at least two times in each document were divided into 12 clusters. The results show that the most frequent words appearing in Dataset 1 are "information diffusion", with 66 events; followed by "Twitter", with 44 events; and "social networks", with 37 events. This co-occurrence-word network visualization is shown in Figure 4. Note that the cooccurrence network has extensively been used in social media analyses and text analyses for discovering the relationships among people, organizations, concepts, and other areas of interests. Here, we observe that, for example, the information diffusion concept is often linked to various concepts, especially Twitter, social influence, social networks, user influence, contagion, and popularity prediction, to name a few. --- Thematic Evolution Using R-bibliometrix, we also acquired an overview of the evolution of themes. Topics that were in a certain quadrant in the previous period could be shifted to another quadrant --- Thematic Evolution Using R-bibliometrix, we also acquired an overview of the evolution of themes. Topics that were in a certain quadrant in the previous period could be shifted to another quadrant in the next period. This evolution was presented as a Sankey diagram. To determine the distribution of time periods or time slices used for thematic evolution analysis, the overall number of published articles in Dataset 1 was analyzed. The number of issues per year from Dataset 1 for the four databases can be seen in Figure 5. --- Thematic Evolution Using R-bibliometrix, we also acquired an overview of the evolution of themes. Topics that were in a certain quadrant in the previous period could be shifted to another quadrant in the next period. This evolution was presented as a Sankey diagram. To determine the distribution of time periods or time slices used for thematic evolution analysis, the overall number of published articles in Dataset 1 was analyzed. The number of issues per year from Dataset 1 for the four databases can be seen in Figure 5. As seen in Figure 5, the publication of information diffusion on Twitter began in 2011 because Twitter was only established in 2006, and no scientific publications related to this platform existed before 2011. The number of information diffusion publications on Twitter increased and slightly flattened between 2015 until the end of 2016. Afterwards, the publications again sharply increased; then, they flattened before they decreased by the end of 2018 and then increased again at the beginning of 2019. The decline in 2021 was due to our data collection only covering publications until 6 March 2021. To sum up, from this observation, we can conclude that two points can be considered cutting points for our thematic evolution analysis, namely the years 2016 and 2019. As seen in Figure 5, the publication of information diffusion on Twitter began in 2011 because Twitter was only established in 2006, and no scientific publications related to this platform existed before 2011. The number of information diffusion publications on Twitter increased and slightly flattened between 2015 until the end of 2016. Afterwards, the publications again sharply increased; then, they flattened before they decreased by the end of 2018 and then increased again at the beginning of 2019. The decline in 2021 was due to our data collection only covering publications until 6 March 2021. To sum up, from this observation, we can conclude that two points can be considered cutting points for our thematic evolution analysis, namely the years 2016 and 2019. The selected thematic evolution parameters were author keywords, the number of words was 450, the minimum cluster frequency was 5, the number of labels was 2, and the number of cutting points was 2. A visualization of the evolution of these is presented based on three time slices, namely time slice 1 , time slice 2 , and time slice 3 , in Figure 6. Information 2022, 13, x FOR PEER REVIEW 10 of 18 The selected thematic evolution parameters were author keywords, the number of words was 450, the minimum cluster frequency was 5, the number of labels was 2, and the number of cutting points was 2. A visualization of the evolution of these is presented based on three time slices, namely time slice 1 , time slice 2 , and time slice 3 , in Figure 6. From Figure 6, notice that a small part of the topics of "information diffusion" in the 2011-2016 period joined the topic of "influence maximization" in the 2017-2019 period, but some information diffusion remained popular until the 2020-2021 period. In the 2017-2019 period, the topic of information diffusion became the most studied topic. The topic From Figure 6, notice that a small part of the topics of "information diffusion" in the 2011-2016 period joined the topic of "influence maximization" in the 2017-2019 period, but some information diffusion remained popular until the 2020-2021 period. In the 2017-2019 period, the topic of information diffusion became the most studied topic. The topic of information diffusion partly remained until the 2020-2021 period, and some of it spread to become the topics social networks, social media, and Twitter. Twitter in the 2011-2016 period joined the topics information diffusion, influence, and social network analysis in the 2017-2019 period. In contrast, the topic influence maximization recently emerged in the 2017-2019 period, remaining stable until the 2020-2021 period. The topic social network analysis started in the 2011-2016 period; remained until the 2017-2019 period; and joined the topics information diffusion, Twitter, and social influence in the 2020-2021 period. For each time slice, this evolution in themes can be described more fully with the Callon centrality method [41]. The most frequently discussed themes in the literature are portrayed and mapped as clusters plotted in the grid diagram consisting of the four quadrants. The clusters are depicted in the form of circles of diverse sizes and colors. The size of the cluster represents the frequency that the word appears in the documents. The first quadrant includes the motor themes. In this quadrant, the cluster has a large centrality and density. This means that clusters have links with other clusters and strong internal links. The second quadrant includes the niche themes. In this quadrant, the links with other clusters are weak, but internally, the links are strong. Quadrant 3 includes the emerging or declining themes. In this quadrant, the centrality and density are small, which describes a new topic developing or having decreased. Quadrant 4 includes the basic themes. In this quadrant, the cluster is strongly connected to other clusters, but the internal link intensity is low. Using the R-bibliometrix tool for visualization, the thematic evolution in each time slice can be seen in Figure 7. Figure 7 shows that the topics discussed in Dataset 1 are presented in certain quadrants and clusters that experience changes in each period. In the 2011-2016 period, all topics were spread out into three quadrants and eight different clusters. The three biggest clusters, namely information diffusion and social networks, Twitter and social influence, social media and continuous time Markov chain , are in the basic themes, meaning that links with other clusters are strong, but internal link intensity is weak. Note that in some literature, CTMC is often called CTMP. In this paper, we sometimes use these two terms interchangeably to refer to the same concept, especially if the literature explicitly uses the term CTMP instead of CTMC. Figure 7 shows that the topics discussed in Dataset 1 are presented in certain quadrants and clusters that experience changes in each period. In the 2011-2016 period, all topics were spread out into three quadrants and eight different clusters. The three biggest clusters, namely information diffusion and social networks, Twitter and social influence, social media and continuous time Markov chain , are in the basic themes, meaning that links with other clusters are strong, but internal link intensity is weak. Note that in some literature, CTMC is often called CTMP. In this paper, we sometimes use these two terms interchangeably to refer to the same concept, especially if the literature explicitly uses the term CTMP instead of CTMC. In the 2017-2019 period, the topic of CTMP did not appear anymore, while information diffusion joined Twitter, and a new topic emerged, namely influence maximization. Furthermore, in the 2020-2021 period, the topic of information diffusion remained the most studied topic and occupied the motor themes quadrant, meaning that the links with other clusters and internal links between clusters are strong. Twitter, which is in the same cluster as the social network analysis, is in the basic themes quadrant, meaning that links with other clusters are strong even though the internal cluster is weak. The topic influence maximization, which was originally in the basic themes quadrant but moved to the niche themes, meaning that links with other clusters were weak. The topic CTMP is in the basic themes quadrant, and it is different from the clusters with "information diffusion" and "Twitter". This indicates that the topic CTMP has a very strong link with "information diffusion" and "Twitter". In brief, the topic of CTMP has not been frequently studied and is open to further research in connection with information diffusion on Twitter. This is our contribution in our next study. --- Results from Systematic Literature Review In this section, we present the results of a study on Dataset 2, namely 34 selected articles discussing information diffusion on Twitter. Articles in Dataset 2 were published within the 2012-2020 timeframe . --- The Purpose of Research on Information Diffusion on Twitter We conducted an analysis of information diffusion on Twitter to answer RQ1: What are the purposes behind information diffusion-related research on Twitter? After examining all of the selected articles, we sorted them into three categories of study areas based on the purpose of each article. The percentages of these three categories can be seen in Figure 8. The three categories are as follows: 1. Information Difference Model on Twitter-articles that focus on modeling how information diffuses or spreads on Twitter; 2. Influential User on Twitter-articles that discuss how to find the most influential users on Twitter or to rank Twitter users; and 3. Influence Maximization on Twitter-articles that discuss how to maximize the influence of users who share information on Twitter. Information 2022, 13, x FOR PEER REVIEW 1 --- The Purpose of Research on Information Diffusion on Twitter We conducted an analysis of information diffusion on Twitter to answer RQ1 are the purposes behind information diffusion-related research on Twitter? After examining all of the selected articles, we sorted them into three categor study areas based on the purpose of each article. The percentages of these three cate can be seen in Figure 8. The three categories are as follows: 1. Information Difference Model on Twitter-articles that focus on modeling ho formation diffuses or spreads on Twitter; 2. Influential User on Twitter-articles that discuss how to find the most influent ers on Twitter or to rank Twitter users; and 3. Influence Maximization on Twitter-articles that discuss how to maximize the ence of users who share information on Twitter. From Figure 8, we can see that the information diffusion model and then ential users are the two most important purposes behind why scholars study From Figure 8, we can see that the information diffusion model and then influential users are the two most important purposes behind why scholars study Twitter analytics. --- Methods Used in Information Diffusion Modeling on Twitter This section intends to answer RQ2: What methods have researchers used regarding information diffusion models on Twitter? Based on our review of the information diffusion model on Twitter, various methods have been used by researchers, such as epidemic models [14,[42][43][44], the stochastic model [11,45,46], machine learning [47][48][49], and the independent cascade model [50]. In the stochastic model, Foroozani [45] used discrete time-random walk and continuous time-random walk ; meanwhile, Li et al. [11] used the continuous time Markov process . In their study, the authors of [11] used homogeneous CTMP, meaning that the rate of information dissemination was assumed to be constant. The methods used by researchers to conduct studies related to the complete information diffusion Model on Twitter can be seen in Tables 456. Our third research question was as follows: What metrics do researchers use from Twitter data? Our study reveals that the most common metric used by researchers to process Twitter data is the number of "retweets"; however, some studies included replies, mentions, and follows. The use of metrics from Twitter data can be seen in full in Tables 4-6. --- Measures for Determining Influencers This subsection tries to answer the fourth research question : What measures do researchers use to rank influencers? For articles with a focus on the study of influential users on Twitter, the measures used to rank influential users are traditional measures such as closeness, betweenness, and PageRank [54][55][56][57]61,63], analytic hierarchy process [20], and buzz rank [62]. The types of measure used to assess influential users can be seen in Table 5. --- Discussion In this section, we discuss the results of the analysis that we obtained from the literature review , totaling 34 articles. --- The State-of-the-Art of Information Diffusion Application on Twitter A review of Dataset 2, which includes the state-of-the-art of our research, is presented in a table, which consists of information diffusion model studies on Twitter in Table 4, influential user studies in Table 5, and influence maximization studies in Table 6. The tables were completed with the research objectives, the methods used, the metrics used, and the measurements used by the researcher. --- Research Gaps From the modeling perspective of Twitter data, our analysis from the previous literature selected showed three research gaps. First, research in homogeneous CTMP for the information diffusion model on Twitter. Referring to Table 4, we observe that one of the methods used in the information diffusion model is the stochastic model. We only found one study, Li et al. [11], that applied homogeneous CTMP for the information diffusion model on Twitter. In such an approach, the rate of transition of information dissemination from Twitter users to other users is considered constant. We notice in Figure 7 that CTMP only appeared in the 2011-2016 period, and we did not observe such an approach used afterwards. On the contrary, information dissemination and Twitter are continuously the most studied topics in each period analyzed. Our analysis on time slice 1 of the thematic maps shows that CTMP lies in the basic theme quadrant, likely linking to the topic Twitter information diffusion. This can be observed from the strong link between this quadrant and other clusters. We also notice in the analysis in Section 4 that only a few studies are related to the application of homogeneous CTMP in Twitter analytics. Second, research in non-homogeneous CTMP for the information diffusion model on Twitter. Looking at the phenomenon of information sharing among Twitter users, the transition rate from spreading information on Twitter is not completely constant but depends on the timing of information dissemination. In this case, the nonhomogeneous CTMP method can be considered an alternative to modeling the dissemination of information on Twitter. Third, research on maximizing influence. As seen in Table 6, the number of publications about maximizing influence is still small . Likewise, as seen in Figure 7b,c, in 2017-2019, the topic influence maximization is in the basic theme quadrant, which means that the connections with other clusters are strong but the links to internal clusters are weak. Then, in the 2020-2021 period, it moved to the niche theme quadrant, meaning that links with other clusters are weak but internal links are strong. This means that more opportunities are available to study influence maximization in the future. --- Conclusions In this paper, we presented a systematic literature review on information diffusion on Twitter. We screened 424 papers from four digital libraries, namely Scopus, Science Direct, Dimensions, and Google Scholar. After going through the selection of duplicates, titles, and abstracts, 204 articles were obtained . We performed a bibliometric analysis for Dataset 1. We showed how the usage of the bibliographic mapping technique can reveal an overview of the existing themes as well as the changes over time. This study demonstrates that publications on the diffusion of information are continuously increasing every year. This description of themes can serve as a basis for deciding further studies. Moreover, we conducted a manual selection of full texts and obtained 34 articles . From the results of the SLR in Dataset 1, we found that 47% of the publications studied the information diffusion model, 41% studied the influence of users, and 12% studied influence maximization. We answered our research questions raised in the Introduction. To sum up, we found that publications on information diffusion models on Twitter have used various methods, such as epidemic models , stochastic models , machine learning, Regression, Bayesian, EGT, and those based on independent cascade models and threshold models. Additionally, the metrics used by researchers in general are retweets, mentions, and replies. Publications about the influence of researchers use the methods of AHP, ACRA, WACRA, WMMEAI, PageRank, influence factorization, T-HT, LDA, and the cluster-based fusion technique. The measures used are degree centrality, closeness, betweenness, eigenvector, PageRank, buzz rank, and the T and HT measures. Our study shows three gaps that could be future directions of influence analysis and information diffusion models on Twitter. First, very limited studies examine influence maximization, which is openly available as a future research direction. Second, we also noticed from our endeavor in this article that studies on the information diffusion model using homogeneous continuous time Markov chain are limited, where we only found one study on a homogeneous CTMC variant. Research in homogeneous CTMC for information diffusion model on Twitter can still be conducted as a future study. Third, the study of information diffusion models with nonhomogeneous CTMC is very open to future research, considering that this model is very realistic and that the transition rate of information dissemination on Twitter is not constant but depends on the time of information dissemination. Our systematic literature review is not without limitations. First, we used four databases to mine data: Scopus, Science Direct, Dimension, and Google Scholar. We hope that most of the articles from other databases are already contained in the database we used. Second, we chose keywords related to our specific topic. Third, to minimize the subjectivity in articles selection, we performed a standard procedure regarding the title and abstract. --- Data Availability Statement: Not applicable. --- Author Contributions: Writing-original draft preparation, F.F.; writing-review and editing, F.F. and J.R.; conceptualization and methodology, F. ---

Information diffusion, information spread, and influencers are important concepts in many studies on social media, especially Twitter analytics. However, literature overviews on the information diffusion of Twitter analytics are sparse, especially on the use of continuous time Markov chain (CTMC). This paper examines the following topics: (1) the purposes of studies about information diffusion on Twitter, (2) the methods adopted to model information diffusion on Twitter, (3) the metrics applied, and (4) measures used to determine influencer rankings. We employed a systematic literature review (SLR) to explore the studies related to information diffusion on Twitter extracted from four digital libraries. In this paper, a two-stage analysis was conducted. First, we implemented a bibliometric analysis using VOSviewer and R-bibliometrix software. This approach was applied to select 204 papers after conducting a duplication check and assessing the inclusionexclusion criteria. At this stage, we mapped the authors' collaborative networks/collaborators and the evolution of research themes. Second, we analyzed the gap in research themes on the application of CTMC information diffusion on Twitter. Further filtering criteria were applied, and 34 papers were analyzed to identify the research objectives, methods, metrics, and measures used by each researcher. Nonhomogeneous CTMC has never been used in Twitter information diffusion modeling. This finding motivates us to further study nonhomogeneous CTMC as a modeling approach for Twitter information diffusion.

Introduction Terrence Deacon [1] in his book, Incomplete Nature: How Mind Emerged from Matter attempts to develop a scientific theory of how properties such as information, value, purpose, meaning, and end-directed behavior emerged from physics and chemistry. He tries to "understand life, then sentience, then the human mind" in terms of teleodynamics. --- OPEN ACCESS Deacon in IN introduces the following three nested levels of the dynamics and the organization of matter: . Homeodynamics or thermodynamics, the lack of organization or the dynamics by which matter dissipates order or organization. . Morphodynamics, by which self-organization can emerge as the result of the interactions of two homeodynamic or thermodynamic processes, as is the case for the emergence of hexagonal Bénard cells when a thin liquid is heated from its bottom surface. These cells accelerate the flow of heat from the bottom surface of the liquid to its top surface. Morphodynamics is not self-maintaining but eventually dissipates, once the two thermodynamic processes have run their course. Once the temperature gradient at one of the surfaces of the thin liquid is removed the Bénard cells collapse and dissipate. . Teleodynamics is the result of the interaction of two morphodynamic processes that creates a system that emerges and acts in its own self-interest. To understand the origin of life, Deacon considers two examples of morphodynamics, namely the autocatalysis of organic chemicals suggested by Stuart Kauffman [2] and the self-assembly of the crystal like structures of cell membranes. It is postulated that the byproducts of these two self-organizing morphodynamic process, fortuitously, are the raw material for the other's morphodynamic self-organization and, as a result, these two morphodynamic processes reinforce each other and combine to form a teleodynamic system. Self-assembly is an exothermic process and auto-catalysis is an endothermic one [3]. According to Deacon, life emerges as a result of a higher-order reciprocal relationship or interaction between the self-organizing morphodynamic processes of autocatalysis and the self-assembly of the cell membrane that create a system, a living organism, with a sense of self that acts in its own self-interest. He also argues that sentience and mind also represent teleodynamic processes that emerge from the higher-order reciprocal relationship of morphodynamic processes, which in turn emerge from the higher-order reciprocal relationship of thermodynamic processes. Deacon then suggests that a living organism is a teleodynamic system that operates in its own self-interest and as such it is "self-creating, self-maintaining, self-reproducing individuated systems" . While there are some that are critical of Deacon's approach, few would disagree that living organisms are "self-creating, self-maintaining, self-reproducing individuated systems". In this paper, I will explore the thesis that culture, language, organization, science, economics, and technology are also teleodynamic phenomena by showing that they, like living organisms, are also "self-creating, self-maintaining, self-reproducing individuated systems". This paper does not attempt to justify Deacon's approach but rather attempts to extend it to include the members of CLOSET. Culture, Language, Organizations, Science, Economics and Technology are activities that behave like living organisms that self-regulate, self-reproduce, self-correct and self-maintain themselves with the one exception that as obligate symbionts they depend on their human hosts for energy, but they assist their hosts acquire energy and do work. This is why I think that culture, language, organization, science, economics and technology represent teleodynamic processes. The elements of CLOSET parallel the processes of living organisms as they also undergo a parallel form of Darwinian evolution of descent, modification and selection [4]. And, like living organisms, they have a telos in that they fit Deacon's definition of a teleodynamic system, in that they are "self-creating, self-maintaining, self-reproducing, individuated systems". --- Language as an Organism Morten Christiansen [5] has argued that human language can be "construed" as an organism that evolved to be easily learned. Terrence Deacon [6] in his book The Symbolic Species makes a similar argument. In my book The Extended Mind: The Emergence of Language, the Human Mind and Culture [7], I incorporate the Christiansen/Deacon hypothesis that rather than considering Chomsky's Universal Grammar as magically hard wired into our brain it makes more sense to consider language as a living organism, an obligate symbiont , that evolved to make language easy to acquire. This also gets around Chomsky's claim that hard wiring is the only way to explain why it is so easy for children to learn language despite the poverty of stimulus. Grammar is universal because human cognition is universal. The linguistic competence of each individual person represents an organism with its own unique semantics and syntax, which can communicate only with members of the same language species. All those possessing an English organism can communicate with each other. The set of all English organisms form the English language species, which is generally referred to simply as the English language. The same is true for all the other human languages of the world. We regard the English language facility of each individual as an organism. We regard the English language as the species of the individual English language organisms and consider all the individual language organisms as conspecifics. --- Is Culture Also an Organism? In the Extended Mind [7] I further postulated that since culture, like language, evolved like an organism that was easy for the human mind to grasp and hence it gave rise to Universal Culture , just the way language evolved in such a way as to give rise to Universal Grammar . It is the universality of human cognition that gives rise to both UC and UG. The arguments for the existence of UG that Chomsky [8] developed are more or less accepted by the entire linguistic community, although many do not accept his notion that we are hard wired with UG. The argument for the existence of UC, on the other hand, is less well known but just as compelling as the argument for the existence of UG. Lee Cronk [9] argues that the great diversity of cultures is perhaps an illusion because anthropologists are biased to look for differences rather than similarities. Languages also look very different from each other, but they share a Universal Grammar according to Chomsky and most linguists. Cronk [9] suggests that maybe the same is true of culture. He cites Donald E. Brown's book Human Universals [10] and in particular the chapter titled "Universal People", which details universals appearing in everything from the details of language and grammar, to social arrangement, to the ubiquity of music, dance, and play. The list includes some surprises. Every society has gossip, all societies understand the idea of a lie, they all have special types of speech for special occasions, they all use narrative, and they all have poetry with lines that take about three seconds to say. Men are everywhere on average more aggressive and likely to kill than women, though individual men and women do differ significantly from the average. Everyone has taboos on certain statements and certain foods. All societies have some sort of music and all are at least aware of dancing . Remarkably, everyone has children's music. --- The Culture of Each Individual in the Society is an Organism When we speak of culture as an organism, we must decide if we are speaking of the culture of the whole society or of individuals within the society. People learn as individuals. Therefore, if culture is learned, its ultimate locus must be in individuals rather than in groups… If we accept this, then cultural theory must explain in what sense we can speak of culture as being shared or as the property of groups…and what the processes are by which such sharing arises. -Ward Hunt Goodenough [11] Based on this insight of Goodenough, we will assume that the culture of each individual of that group is an organism and that the culture of the society as a whole is a species composed of the culture organisms of each member of the society that are therefore conspecifics. --- The Co-Evolution of Science, Technology, Economics and Organization The evolution of technology follows a pattern similar to that of living organisms, as has been pointed out by a wide variety of authors including Basalla [12], Cziko [13], Mokyr [14] and Vincenti [15]. Basalla [12] cites three basic analogies between technological and biological evolution. The first is the fact of the great variety of both biological organisms and technological tools. Basalla cites the fact that the U.S. Patent Office granted approximately 4.7 million patents between 1790 and 1988, the date of the publication of his book The Evolution of Technology. As he put it: "The variety of made things is every bit as astonishing as that of living things". Basalla's [12] second point is that technology evolves through a process of descent and modification: "Any new thing that appears in the made world is based on some object already in existence". He cites many examples of how innovative technologies borrowed significantly from earlier technologies, citing the cotton gin, the electric motor and the transistor as three examples. The third point that Basalla makes is that technologies survive through a selection process by which a society chooses a particular technology from a large number of variations for incorporation into its material life. Finally, I cite my own work in which I too saw the evolution of technology as analogous to that of living organisms: Cognitive tools and physical technology are two resources at the disposal of human innovators, and the needs or demands of society are often the motivating force. Necessity is the mother of invention, yet invention does not occur in a vacuum. All of the previous innovations in a culture provide the resources, both cognitive and physical, for the next level of innovation. The previous innovations also contribute to changes within the socioeconomic system that give rise to new social demands. Each new invention, technological innovation, or discovery gives rise to new technical capabilities, new cognitive abilities, and new social conditions. These then interact with the existing economic, political, social, cultural, technical, and cognitive realities of the culture to set the stage for the next round of innovation. Thus, technological change in our model is part of an ongoing iterative process. It began with the inception of Homo sapiens and continues to this day at an ever-quickening pace. -Robert K. Logan [16] Science is another symbol-based activity unique to humans, which also propagates its organization and evolves like a living organism. The mechanism for the propagation of science's organization is what Thomas Kuhn [17] termed normal science. Every success in science gives rise to a paradigm, which is articulated and applied to as many phenomena as possible. This is the mechanism of descent. Once a paradigm fails to provide a satisfactory description of nature a period of revolutionary, science begins with the search for a new paradigm. This is the mechanism of modification. If the new paradigm provides a satisfactory explanation to the science community by providing replicable results, a new round of normal science begins. This is the mechanism of selection. Science propagates its organization through normal science and evolves by descent, modification and selection just like living organisms. The analogy between the Darwinian evolution of living organisms and the process of descent, modification and selection in Kuhn's model led him to cautiously conclude at the end of his analysis of scientific revolutions the following: The analogy that relates the evolution of organisms to the evolution of scientific ideas can easily be pushed too far. But with respect to the issues of this closing section it is very nearly perfect… Successive stages in that developmental process are marked by an increase in articulation and specialization. And the entire process may have occurred, as we now suppose biological evolution did, without benefit of a set goal, a permanent fixed scientific truth, of which each stage in the development of scientific knowledge is a better exemplar. -Thomas S. Kuhn [17] Economics is another symbol-based activity unique to humans, which also propagates its organization and evolves like a living organism. The original economy of human kind was hunting and gathering. Gathering evolved into agriculture when it was observed that certain nourishing plants could be easily cultivated. Hunting evolved into pastoralism when it was realized that certain animals could be domesticated. Primitive tool-making used for hunting and gathering evolved into handcraft manufacturing, stimulated by agriculture and pastoralism. The coordinated hunting and gathering led to food sharing, and from there it evolved into a key aspect of the human economy, namely local trading within a clan and from there trading between clans. With agriculture and pastoralism, trading between local clans evolved into trade between clans living in different ecological zones, which in time evolved into the manor system. The evolution of the economy became closely linked with technology, as tools were developed to improve the efficiency of agricultural processes and the processing of food. Other technologies contributed to the evolution of economics such as weaving, pottery, woodworking and metallurgy. As the scale of manufacturing increased, the economy of the town and the burgher emerged. This led to capitalism to finance larger and larger manufacturing enterprises. The next technological breakthrough of the rotary action steam engine led to the Industrial Revolution and a major discontinuity in the evolution of the economy. Finally the emergence of electric media led to a new stage in the evolution of the economy, namely, the Information Age. With each new stage in the evolution of the economy, structures from the previous period are incorporated into the new economic order. Capitalism was preserved, from its beginning in the burgher economy through the Industrial Revolution into the Information Age, with most of its feature in place. Even socialism retained many of the features of market capitalism and could easily be seen as state capitalism. The evolution of the economy is closely aligned with the evolution of technology so that changes in the economy give rise to new technologies and, vice-versa-new technologies give rise to new economic practices. Economics and technology co-evolve and they in turn co-evolve with organization or governance to which we now turn our attention. An organization in the sense of a group of individuals working together with a common objective is another symbol-based activity unique to humans, which also propagates the way it is organized from day to day from year to year and in some cases from century to century. The way an organization is organized can be thought of as its governance, so organization and governance basically overlap. Examples of organizations include political organizations like countries, states or provinces, cities, political parties, organized religions, companies or firms, associations, societies, clubs, and even right down to the level of families. They reproduce themselves in the sense that although the individual members of an organization might change the organization will still persist. Individual organizations change and evolve like living organisms, as can the type of organizations that come into being. For example, the guild system of the European Middle Ages emerged once an urban economy of specialized craftsmen arose, which in turn was the product of the new technologies that were developed and utilized in Europe during this time period. The guild system changed the nature of the economy and further stimulated the development of technology. Technology, economics and organization truly coevolved. We might also add that science may be thrown into this co-evolutionary mix as science thrived in a milieu in which technology, economics and organization were thriving and changing. It is no accident that the roots of the Scientific Revolution of Renaissance Europe can be found in the Middle Ages when the first universities were being formed and scientists the likes of Roger Bacon, Oerseme, and Buridan were laying down the foundations for modern science by challenging the scientific ideas of Aristotle. Johnson and Earle [18] in the Evolution of Human Societies show that a similar pattern of evolution exists for the econosphere that embraces both economics and organization. Human societies based on symbols evolved from extended families, to clans headed by a big man, to tribes headed by a chief, to the state headed by various forms of government adapting to pressures from increasing populations. Each new form of governance or social organization incorporated elements from the form it descended from. Family is still the basic unit of society. Descent, modification and selection once again. --- Are the Members of CLOSET Individual Organisms or Are They Species We have argued that the members of CLOSET can be construed as living organisms in the sense that they propagate their organization and that they evolve much like living biological organisms. We have also indicated that the distinction one makes for living biotic organisms between individual organisms that are conspecifics and the species they belong to can also be made for language and culture construed as organisms. One is not able to make this distinction for science, technology, economics and organization construed as organisms because these cultural forms do not admit to idiosyncratic differences among those individuals that are involved in these activities, because they are strictly group activities. Once one learns a language or adopts a culture one can pretty much use that language in written form by either reading or writing in that language without interacting with others. By the same token one can live by one's cultural norms, even when one is living in a society with another altogether different set of cultural practices. Englishmen during Britain's colonial era were able to adhere to their English cultural norms even when no other Englishman was in their neighborhood. In the hottest climates like India, Saudi Arabia or Africa they dressed and dined like Englishmen. By their very nature, the cultural practices of science, technology, economics or organization require group participation and agreement and hence the distinction between individual science, technology, economics or organization organisms and species of conspecifics of these activities is meaningless. So when we talk of the teleodynamics of these cultural forms we are talking about the collective forms of these activities as behaving like a teleodynamic system. The same is true of language and culture because it is the collective language and the collective culture, i.e., the language species and cultural species, which act in their own self-interest. We therefore propose that the teleodynamic parallel of the elements of CLOSET with biotic living systems operates at the level of species and not at the level of individual organisms. But we also claim that, in addition to an individual organism acting teleodynamically in its own self-interest, species of biological living systems are also teleodynamic systems, in the sense that they act in a way that promotes the well being of the species as a whole as evidenced by kin selection, herd instincts, and social insects. Species act in a way to propagate themselves, i.e., their species. I would argue that evolution is a way that a species makes corrections to insure its survival as a species as the environment in which it operates changes. --- Are Culture, Language, Organization, Science, Economics and Technology Teleodynamic Phenomena? A Probe The probe that I would like to examine is whether or not Deacon's notion of teleodynamics applies to culture, language, organization, science, economics and technology . If CLOSET behave as organisms, as I have suggested, then perhaps some form of teleodynamics might pertain to their organization and their persistence. I must confess that the motivation for this probe and the reason I embarked on this project to explore the question: "Are culture, language, organization, science, economics and technology teleodynamic phenomena?" came from the following passage from Deacon's book, Incomplete Nature. Teleodynamics can be understood as characterizing the distinguishing dynamics of life. However, rather than being an abstract description of the properties that living processes exhibit, teleodynamics is a specific dynamical form that can be described in quasi-mechanical terms. Although it is the distinguishing characteristic of living processes, it is not necessarily limited to the biological. Teleodynamic processes can be identified with respect to the specific end-directed attractor dynamics they develop toward. -Terrence W. Deacon [1] This passage prompted the following thoughts: Do culture, language, organization, science, economics and technology represent teleodynamic processes? Is there not an autonomy of CLOSET as they maintain themselves, as they self-organize, as they have agency? They are obligate symbionts and hence their energy is provided by their hosts, but they assist their hosts to acquire energy and do work. With regard to autonomy, the CLOSET do not have energy autonomy in the sense that they depend on humans for their source of energy, but they are autonomous from the standpoint of their development, in that a single individual cannot destroy them as they are self-contained. An individual can contribute to their evolution and enrichment by creating a neologism that catches on, or a new cultural pattern like the Beau Brummel suit jacket, or a technological invention or innovation like all of Steve Jobs' Apple products, or a new scientific paradigm like Einstein's theory of relativity, or a new economic model, or a new form of organization for CLOSET respectively. It seems to me that culture, language, organization, science, economics and technology each have end-directed attractor dynamics they develop toward. This is why I think CLOSET represent teleodynamic processes. I believe that they are in fact autonomous agents that maintain themselves, self-organize, and have agency. The following description of Deacon of the processes of living organisms seems to apply with almost equal validity to CLOSET. We find processes [for both living organisms and CLOSET] that consistently partition thermodynamic processes so that many components processes follow trajectories that run radically counter to global thermodynamic probabilities; are highly heterogeneous in structure and dynamics; produce processes/behaviors that are so convoluted, divergent, and idiosyncratic as to defy compact algorithmic description; generate and maintain aggregate systemic properties that are quite distinct from any properties of the components, and reflect the effects of deep historical contingencies that may no longer be existent in their present context . -Terrence W. Deacon [1] Culture, language, organization, science, economics and technology do not "run radically counter to global thermodynamic probabilities", but they are the tools that enhance their human host's ability to do so. There is no question that, like living organisms, CLOSET "are heterogeneous in structure and dynamics" and that they "defy a compact algorithmic description". It is also the case that CLOSET, like living organisms, certainly have "systemic properties that are quite distinct from any properties of the [ir] components." Finally, CLOSET, like living organisms, are emergent phenomena and "reflect the effects of deep historical contingencies that may no longer be existent in their present context". Not only do CLOSET parallel the processes of living organisms they also undergo a parallel form of Darwinian evolution of descent, modification and selection. Deacon describes the evolution of living organisms in the following way, "the process of evolution, rather than merely maintaining and reproducing dynamical form, exhibits a spontaneous tendency for its dynamics to diversify and complexify these forms, both intrinsically and in their relationship to their contexts" . This description fits both living organisms and CLOSET. Deacon argues that "The incessant need to replace and reconstruct organism components depends on synthetic form-generating processes, not merely resistance to breakdown" . The individual --- members of CLOSET also in a certain sense replace and reconstruct their components through form-generating processes as well. For example: • new Cultural practices arise through technological change, diffusion, and acculturation; • new words are added to a Language through grammaticalization, portmanteau or neologisms; • new Organizational models arise to match changing conditions; • new Scientific paradigms developed in what Kuhn terms revolutionary science; • new Economic models and Technological breakthroughs through invention, innovation and diffusion respectively. Like living organisms, the individual members of CLOSET are also self-correcting and self-maintaining. The claim that the individual members of CLOSET are teleodynamic systems suggests that these six species are self-creating, self-maintaining and self-reproducing respectively. Language reproduces itself and came into being by self-organizing the signals used by individuals into a system of communication that can be easily learned and hence reproduced by imitation. This mechanism also insures the self-maintenance of the system as the use of expressions that do not maintain the integrity of the system will not be imitated and hence discarded. Culture follows a similar pattern. The cultural practices that are easy to learn and ensure the survival of the society in the environment in which they operate self-organize and self-create the culture. Practices that ran counter to norms of society and which were inconsistent with the demands of the environment quickly die out, and hence culture self-maintains itself. Technologies and tools that aid the survival of a society self-organize and survive, but those that do not aid survival of their hosts do not themselves survive. Science by its very nature is a self-maintaining activity as theories inconsistent with the observation of nature will be eventually detected and discarded. Economic and Organizational practices that promote the well being of a society self-maintain and self-repair themselves. Culture, Language, Organizations, Science, Economics and Technology are activities that behave like living organisms that self-created themselves and behave like living organisms that self-regulate, self-reproduce themselves, self-correct and self-maintain themselves with the one exception that as obligate symbionts they depend on their human hosts for energy. In conclusion the analogy between living organisms and the individual members of CLOSET consists of the following points: • all propagate their organization; • all evolve through descent, modification and selection; • all are emergent phenomena; • all arise from self-organization and catalytic closure; and • all have a form of instructional information or constraints. --- Conflicts of Interest The author declares no conflict of interest.

Terrence Deacon's (2012) notion developed in his book Incomplete Nature (IN) that living organisms are teleodynamic systems that are self-maintaining, self-correcting and self-reproducing is extended to human social systems. The hypothesis is developed that culture, language, organization, science, economics and technology (CLOSET) can be construed as living organisms that evolve, maintain and reproduce themselves and are self-correcting, and hence are teleodynamic systems. The elements of CLOSET are to a certain degree autonomous, even though they are obligate symbionts dependent on their human hosts for the energy that sustains them.

Introduction HIV remains prevalent worldwide, especially among men who have sex with men : Despite global efforts to control HIV among key populations, HIV persists as a major public health threat among MSM around the world. For example, in the United States , HIV prevalence among MSM reached levels as high as 14.5% in 2015. In China, data from 107 surveillance sites indicted that HIV prevalence among MSM increased from 0.9% in 2003 to 8.0% in 2015. In addition, alarmingly high HIV incidence rates have been observed among MSM in several cities in China. A previous study conducted by members of our research team found that the HIV incidence in two cities in Jiangsu Province was as high as 13.0/100 person-years in 2011. Control of the HIV epidemic among MSM is a global public health priority, and promotion HIV serostatus disclosure and partner testing is an important HIV prevention and control strategy. HIV serostatus disclosure remains an uncommon practice among men who have sex with men in low-and middle-income countries . For example, a study conducted in India revealed that only about one-quarter of Indian MSM disclosed their HIV status to their male partners. Lack of HIV serostatus disclosure among MSM in LMICs may be due to fear of discrimination and violence , lack of social and psychological support , and low HIV testing rate. For example, due to feared discrimination and social isolation, and feared relationship broken-up, people in LMICs are less likely to disclose their serostatus to partners. Fear of violence from partners was also a strong concern for MSM, especially for those who have multiple partners. These barriers may reduce the benefits of HIV serostatus disclosure, and lead to further transmission of HIV among this key population. HIV serostatus disclosure could facilitate serosorting and seropositioning, promote condom use, improve uptake to HIV prevention and treatment programs, and increase HIV test uptake. Worldwide, previous studies on HIV serostatus disclosure mainly focused on whether an index HIV case disclosed their serostatus to their partner, and mainly focused on heterosexual couples. These studies usually reported on the patterns and processes of HIV serostatus disclosure, evaluated barriers and benefits of HIV serostatus disclosure , and assessed factors associated with HIV positive test results disclosure. Several studies among MSM also have focused on knowledge of sexual partner's HIV status , but very few report the conditions of receiving HIV serostatus disclosure from partners, regardless of the testing results. And very few of them explored the association between coerced HIV testing history and history of post-test violence, while these two are considered to be highly correlated with HIV serostatus disclosure. We defined receiving HIV serostatus disclosure as the partner of a participant actively disclosing their HIV serostatus to the participant. To decrease the risk of HIV acquisition, HIV serostatus disclosure should be promoted from both sides of the sexual partnership, as HIV status disclosure can lead to HIV transmission risk reduction. However, few studies have evaluated receiving HIV serostatus disclosure from partners, and we do not know whether HIV serostatus disclosure from partners is lower than HIV serostatus disclosure to partners. In addition, previous studies on providing HIV serostatus disclosure were usually based on the face-to-face interview, which tends to have report bias and social desirability. A computer-assisted online survey could be another good choice, even we cannot completely prevent social desirability bias , as no face-to-face interview is involved. To answer these questions, we conducted secondary data analysis of a randomized control trial, with the aims of accessing the proportion of men who had received HIV serostatus disclosure from partners before sex, and evaluating factors associated with receiving HIV serostatus disclosure from their most recent regular and casual male partner. --- Methods This study used the data from an online cross-sectional study among MSM in eight Chinese cities , which was conducted in July of 2016. These cities were chosen for two reasons: 1), the selected sites have the heaviest burden of HIV in the two provinces; 2), each city had existing infrastructure for MSM HIV surveillance led by the local center for diseases prevention and control and capacity to deliver new HIV testing services. This was the baseline survey of a randomized control trial to evaluate promoting HIV testing among MSM in China . --- Participants recruitment The anonymous survey was conducted by the University of North Carolina Project-China. The inclusion criteria of this study included: born as a male, at least 16 years old, ever engaged in anal sex with another man, currently living in one of the designated cities, and electronically signed the online written informed consent form. To recruit participants, our study team collaborated with a gay partner seeking smart-phone based application called Blued. For the recruitment, banner advertisements linking to the online survey were sent to registered users of the social media application in the eight cities. Participants could forward the survey link to friends. Participants who clicked the survey link on the social media application were directed to the online survey that was hosted by Sojump . After study eligibility was determined, eligible participants were required to give informed consent prior to beginning the survey, by signing the inform consent form electronically. Participants were asked to provide their cell phone number in order to receive an incentive . Participants could take the survey on a cell phone, tablet, laptop or desktop computer, and the survey took the participants about 14.6 minutes to finish. --- Measures Participants completed questions covering socio-demographic information, sexual behaviors, HIV/STI testing history, self-reported HIV status, and whether or not HIV test results were disclosed between them and their most recent partners. For the socio-demographic information, we collected data on age , residency status , marital status , educational level , and annual income . For reference, the average household net income in 2012 in China was approximately 7000 USD, and approximately increased to 8500 USD in 2016. Participants were asked to report their self-identified sexual orientation . In addition, participants were asked to report their current selfidentified gender . Regarding sexual behaviors, participants were asked if they had used a condom with their last male partner , and if their last male partner was a regular or casual partner. Casual male partner was defined as any sexual partner that the participant did not consider to be his regular partner, while regular partner was defined as boyfriends or any sexualrelationship that last for more than three months. Participants were asked if they had ever tested for HIV , what the most recent testing results were , and whether their first test was an HIV self-test . Information on coerced HIV testing history, and history of post-test violence was also collected. We defined coerced HIV testing as the partners of the index participants who forced him to take an HIV test. We defined post-test violence as the HIV testing leading to a violent confrontation to the participants. HIV testing social norm was measured by six validated items asking participants about the social norms of HIV testing. HIV testing self-efficacy was also measured using a validated six-item scale. Answers were given in a 4-point Likert format: Strongly agree , agree , disagree , strongly disagree . Each item was then scored between 1 and 4, based on the answers provided by the participants. And the mean scores for all the sex items of social norm and self-efficacy were then calculated . The Cronbach's alphas for social norm and self-efficacy are 0.762 and 0.485, respectively. For the outcome measure, participants were first asked whether they ever had a regular male, casual male, regular female, and casual female partner, and if they knew the HIV status of their most recent regular male, casual male, regular female, and casual female partner . Hence, each participant was able to report HIV partner statuses for a maximum of four partners. If the HIV status of a partner was known, then the participant was asked how they knew the results by checking the response options [1=He told me some time ago / I had known for some time, 2=He told me before sex, 3=I knew it from his profile on the Internet, 4=He made it clear without actually telling me, 5=Someone else told me, 6=We were at an event where everyone was HIV negative, 7=We were at an event where everyone was HIV positive, 8=I guessed, 9=Other reason]). We defined receiving HIV serostatus disclosure as the partner of a participant actively disclosing their HIV serostatus to the participant.. Providing disclosure of HIV status from the participant to partners was assessed analogously. In our study, the regular male partner was defined as "boyfriends", or those who were in a stable relationship that did not involve transactional sex. --- Statistical Analysis Descriptive analysis was used to describe the distribution of the socio-demographic characteristics and behaviors of participants. Univariate and multivariate logistic regression were used to evaluate factors associated with receiving HIV status disclosure from the most recent male regular partner of the participants. We analyzed the factors associated with receiving HIV status disclosure from the most recent male regular partners as well as the most recent male casual partners . Factors that were adjusted in the multivariate analyses included age , education level, marital status, annual income and city of recruitment. Model building and confounder selection was informed by the results of a literature search and prior knowledge from previous work of the study group and collaborators. All data analyses were completed using SAS 9.4 . --- Ethical Statement Ethical approval was obtained from the ethics review committees at the Guangdong Provincial Center for Skin Diseases and STI Control , University of North Carolina at Chapel Hill , and the University of California, San Francisco prior to the launch of the survey. --- Results Overall, the survey link was clicked 36,863 times from 25,141 independent IP addresses, and a total of 2,112 eligible participants finished the questionnaire . Among these 2,112 participants, seven records were removed after de-duplication of redundant mobile phone numbers. The final analytic sample included 2,105 participants. --- Socio-demographic characteristics The age of the 2,105 participants ranged between 16 and 64, with a mean age of 26 ± 6, and over three-fourths were less than 30 years old. About two-thirds of the participants are registered residences of the sampling province, most have a marital status of never married, and over sixty percent with an educational attained level of some college education or above. In addition, over seventy percent of participants reported annual income less than $8,500USD , and 67 people self-reported that they are transgender individuals. Overall, 1,678 participants reported that they ever had regular male partners, 1,608 ever had casual male partners, 383 ever had regular female partners, and 286 ever had casual female partners . In addition, 67 participants self-identified as transgender, while 39 participants were not sure about their gender. The mean social norm score on HIV testing of the participants was 2.82±0.37, and the mean self-efficacy score for HIV testing of the participants was 3.16±0.48. --- HIV testing history Overall, 1125 participants reported that they ever tested for HIV, but only 1063 of participants knew their HIV status, and the main reason for the discrepancy between ever testing and knowing their status is the participants refuse to get the testing results. Of these 1063 people who know their HIV status, 62 of them were selfreported as HIV positive. In addition, 685 participants reported that they ever selftested for HIV, and 371 of the participants reported that HIVST was their first-time HIV testing experience . A total of 64 men who ever tested for HIV experienced HIV testing related coercion, and 14 participants who ever tested for HIV experienced post-test violence. --- Receiving HIV status disclosure from partners Among the 1678 people who reported have regular male partners, only 346 participants received HIV serostatus disclosure from their most recent regular male partners. HIV serostatus disclosure rates from other different kinds of partners were: 287 people got HIV serostatus disclosure from their casual male partner, 62 people got HIV serostatus disclosure from a regular female partner, and 48 people got HIV serostatus disclosure from their casual female partner . --- Providing HIV status disclosure to partners The overall disclosure rate from participants to their regular male partners was relatively high . Among the 62 HIV positive participants, 37 disclosed their HIV testing results to their regular partner, 15 participants did not disclose their HIV testing results to their regular partner, and 10 did not have a regular male partner. Among the 1001 HIV negative participants, 639 disclosed their HIV testing results to their regular partner, 179 participants did not disclose their HIV testing results to their regular partner, and 183 did not have a regular male partner. All of these were based on self-reporting. --- Factors associated with receiving HIV serostatus disclosure from most recent regular and casual male partners Multivariate analysis indicated that, compared to people with HIV negative testing results, participants who never tested for HIV or whose HIV status was unknown were less likely to receive disclosure of HIV status from their most recent regular partners, with an adjusted Odds Ratio of 0.43 . Self-reported HIV positive and HIV negative partners had similar likelihood of receiving HIV status disclosure from their most recent regular male partners. Compared with people who never tested for syphilis, participants who ever tested for syphilis had higher odds of receiving HIV status disclosure from regular partners, with an aOR of 1.78 . We found that post-test violence was positively associated with test results disclosure from regular male partners, with aOR of 5.18 . In addition, with the increase of HIV testing related self-efficacy, the likelihood of receiving HIV serostatus disclosure from regular male partners also increased, with an aOR of 1.77 . Compared to people who never self-tested for HIV, participants who ever self-tested for HIV had greater odds of receiving HIV status disclosure from regular male partners . Similar results were found for factors associated with receiving HIV serostatus disclosure from their most recent casual male partners . For example, compared to people with HIV negative testing results, participants who never tested for HIV or whose HIV status was unknown were less likely to receive disclosure of HIV status from their most recent casual partners, with an aOR of 0.45 . --- Discussion HIV serostatus disclosure before sex can facilitate serosorting, seropositioning, condom use and potentially decrease the risk of HIV acquisition. Many existing studies focus on disclosure of HIV-positive status to partners among people living with HIV in different settings. This study adds to the current literature by assessing receiving HIV serostatus disclosure from different kinds of partners and identifying correlates of HIV serostatus disclosure from their most recent regular and casual male partners. Our findings indicated that disclosure of HIV status from recent regular male partners was positively associated with post-test violence, HIV self-testing and HIV testing related selfefficacy. We found that only about one-quarter of regular partners disclosed their HIV serostatus to the participants. This partner disclosure rate and partner status knowledge rate was much lower than the findings of one study conducted among MSM in Nanjing , China. They were also much lower than a previous study among MSM in California, USA, while the California study only included MSM who knew their HIV serostatus . The literature also indicated that these two rates were also much lower than the HIV serostatus disclosure rate among rural people living with HIV in China , MSM living with HIV in the US , and HIV negative MSM in the US, while we realized that it is much easier for HIV negative people to disclose their HIV serostatus. Low rates of HIV serostatus disclosure from regular partners among MSM in China may be due to insufficient social and psychological support, stigmatization and lack of communication skills. To promote HIV serostatus disclosure among Chinese MSM, policies that aimed to deal with these sociocultural and structural barriers could be important. In addition, qualitative studies that aim to identify other reasons that may impede HIV serostatus disclosure among Chinese MSM would be essential for developing targeted interventions. In our study, the disclosure rate from participants to their partners was relatively high compared to the disclosure rate from partners to the participants. Report bias and disparity of HIV status disclosure from different partners could be two potential reasons for this phenomenon. Our study indicated that HIV testing, HIVST, as well as HIVST as first-time HIV testing of the participants were all positively associated with HIV serostatus disclosure from both regular and casual male partners. These findings demonstrated that the lack of HIV testing ) was one of the main reasons for low HIV serostatus disclosure among Chinese MSM. Previous studies indicated that promoting HIV testing, especially couples-based HIV testing, was essential for facilitating HIV serostatus disclosure across diverse settings. In addition, HIVST also provided an important opportunity to increase test uptake, and our previous study indicated that HIV self-testing kits are widely available online, and over 30% of Chinese MSM have ever been self-tested. Thus, promoting HIV testing and HIV serostatus disclosure jointly could be a promising route. Importantly, policies on promoting HIV testing, HIV serostatus disclosure and partner service jointly, especially among newly identified HIV positive cases are needed. Previous studies indicated that post-violence is one potential barrier to HIV serostatus disclosure , and our study found corroborating results. However, post-test violence is very rarely reported among Chinese MSM. For example, only 14 men in our study self-reported that they ever experienced any post-test violence. Future studies that further to confirm this finding in China are needed, as this finding was only based on 14 men , and our results may be biased from selection bias. Interventions and further implementation research to facilitate safe disclosure are still urgently needed for MSM. Our study has several limitations. First, as an online study conducted on the mobile application, our study was prone to selection bias. Participants would at least have a smart phone, which led our sample to tend to be young and well educated , and many potential participants who clicked the survey link withdrew before the eligibility screening. Second, the cross-sectional design precluded us to identify any causal relationships. Third, as all data were collected through self-report, our study may suffer from information bias. Fourth, recall bias might have occurred when we collected information on HIV serostatus disclosure. Our recruitment advertisement used "Men's Health Survey" to attract potential participants, which may preclude those transgender women who identified as female. Fifth, even the total sample size for our study is large, only a few people experienced rare outcomes, such as post-test violence. Also, even we have used a validated scale, the Cronbach's alphas for self-efficacy was only 0.485, which makes this measure unreliable. --- Conclusion HIV serostatus disclosure from partners was uncommon among the participants, while HIV testing is highly related to HIV serostatus disclosure. Policies that focus on dealing with the sociocultural and structural barriers of HIV serostatus disclosure, and to promote HIV testing and HIV serostatus disclosure jointly are essential. In addition, policies and strategies that aim to increase accessibility of facility-based HIV testing, expand HIVST, facilitate safe disclosure, and increase social and psychological support for HIV testing and testing results disclosure may improve rates of HIV serostatus disclosure among Chinese MSM. In addition, qualitative and quantitative research should elucidate unexplored barriers to HIV status disclosure, develop and evaluate new intervention methods for promoting HIV status disclosure, among Chinese MSM and transgender individuals. Associations between men who self-reported HIV status and who received HIV status disclosure from different types of partners Regular male partner was defined as "boyfriends", or those who were in a stable relationship that did not involve transactional sex. # Casual male partner was defined as any sexual partner that the participant did not consider to be his regular partner. Factors associated with men who received HIV serostatus disclosure from their most recent casual male partner ---

Background-HIV serostatus disclosure before sex can facilitate serosorting, condom use and potentially decrease the risk of HIV acquisition. However, few studies have evaluated HIV serostatus disclosure from partners before sex. We examined the rate and correlates of receiving HIV serostatus disclosure from regular and casual male partners before sex among an online sample of men who have sex with men (MSM) in China. Methods-An online cross-sectional study was conducted among MSM in eight Chinese cities in July 2016. Participants completed questions covering sociodemographic information, sexual behaviors, HIV testing (including HIV self-testing) history, self-reported HIV status, and post-test violence. In addition, participants were asked whether they received HIV serostatus disclosure from their most recent partners before sex.

Introduction The healthy of the "self" requires the experience of the continuity of "self" [1][2][3][4][5][6]. This means that the self is an intra-psychological structure [1], and experiences and understanding of life story in a continuous and chronological sequence [2][3][4][5][6]. The continuity of "self" is at the center of finding meaning [4,7] and is also a vital issue for one's psychological well-being [5,6]. But the horrific experience of cancer seems to disrupt the normal flow of life story and its sense of coherence because, in the presence of chronic illnesses, including cancer, a person's daily actions and expectations about his/her life change [8], the person feels that he/she does not have control in some areas of life [9], the person's relationship with his/her body changes [10,11], and confront with mortality and death [11]. Also, patients with cancer often have unmet social support requirements and emotional needs [12], while an important part of identity, and a person's knowledge and perception of herself are made in social relations [13]. A qualitative study of cancer survivors in Mexico found that they face challenges including cancer stigmas, distress from physical change, loss of control and attitude about planning, family as a supportive source, and financial problems [14]. In such circumstances, one may be required to future reappraisal [15] and reorganize his/her standards and beliefs and values system [16]; and perhaps it is because of the experience of such challenges that chronic illness leads to the imposition of changes and redefinition of patient roles and responsibilities [17]. Thus, the experience of cancer conditions may impose changes on a person's understanding of him/herself. Thus, the issue that how is an understanding of self and its transformation process in patients with cancer necessitates conducting in-depth and first-hand qualitative studies. But, in the context of chronic illnesses, concepts related to change of identity/self have often been investigated in the studies of Western and developed countries researchers [10,12,14,18,19], and they have not been considered in the socio-cultural context of the Middle East countries, especially Iranian society. However, the cultural and socioeconomic conditions of a particular society in which a person with cancer lives have some implications and meanings about the experience of life in the presence of cancer illness [17]. Therefore, understanding this process is very important in the cultural and socio-economic context of Iranian society. In this regard, Surbone [20] points out that cultural competence, which requires oncologists to be aware of their cultural values and beliefs, can lead to improved therapeutic outcomes and reduced disparities in cancer-related health care. Therefore, this study can help to understand the level of change and integration of "self" in the process of dealing with cancer and improve treatment interventions and care services for cancer survivors in middle eastern countries, especially Iran. According to what was said, the present study, which has used a qualitative method, addressed the question of how is the change of self in cancer survivors in the context of Iranian society. --- Methods In the present qualitative research, the design of systematic grounded theory [21,22] was used. This study was conducted between July 21, 2020, and January 30, 2021. In the present study, the COREQ standard checklist [23] was used. The research population was cancer survivors referred to cancer treatment centers in Tehran selected based on inclusion/exclusion criteria. Inclusion criteria included these cases: age range 20 to 50 years, informed and satisfactory readiness to participate in the research. Exclusion criteria also included: suffering from other chronic physical illnesses, substance use, and a history of imprisonment. Rapid cognitive changes that occur in childhood continue into adolescence and even into 20 years, and identity construction occurs during these years [24]. Therefore, only individuals over the age of 20 who have passed the identity construction period were included in the study. Also, ages over 50 are associated with increased cognitive impairment [25] which may interfere with the effect of the cancer experience on the definition of "self" and obscure the understanding of the process. Therefore the present study focused only on the age range of 20-50. Based on theoretical sampling, 21 participants entered the research. Inclusion criteria for selecting family members included: Being as the main member of the family of the person with cancer, living with a person with cancer in a shared environment before and after the onset of cancer , and having daily contact with a person with cancer. Exclusion criteria included a history of communication problems and conflicts with the person with cancer. Inclusion criteria for selecting oncologists include having 2 years of experience working with people with cancer. The exclusion criterion was not considered. Initially, an announcement was published about the purpose of the present research on social networks , and people with cancer were invited to participate in this research. Then, the purpose of this research and the ethical principles governing this study were explained to the volunteers, and among the volunteers, those who met the inclusion/exclusion criteria were included in the study. The information in Tables 1 and2 includes the demographic characteristics of the participants, according to their self-reports. In this study, semi-structured interviews were used to collect data. First, the interviews were developed based on a proposed four-axis framework [26,27]: descriptive , structural , contrast , and evaluative . Then, following the interview process, methods such as analytical questions to identify different codes and categories as well as specific questions to encourage the participant to explain his/her experience in more detail were used. The interviewer had no contact with the participants before beginning the study. Because of the prevalence of Coronavirus , and its risk, especially for people with cancer, the interviews were conducted via video call . With the consent of each participant, his/her voice was recorded simultaneously using an audio recorder. Then, interviews were transcribed in Microsoft Word by someone out-of-study. To explore the cultural and socio-economic conditions in the interview process, a question was asked at the beginning of the interview: "How was the story diagnosis of cancer about you, and how did you become aware of it?". In this section, participants usually pointed out the strengths and weaknesses of the health system in diagnosing the disease, supporting the patient, how to inform him, financial challenges, family/friend reactions. Also, at the end of each interview, the participant was asked, "What challenges or other issues does she/he want to talk about?". In addition, some of the four-axis interview questions evoked answers that reflected the socio-cultural and economic dimensions of their experiences. None of the participants in the study dropped out. The sampling reached saturation from patient no. 15 , and the codes extracted from interviews 16 and 17 did not have added value for the explanatory capability of the extracted model. Also, 2 oncologists and 2 family members of patients with cancer were interviewed. This action paved the way for the formation of triangulation, by providing evidence from numerous sources [22,28]. However, the analysis of the data of these four interviewees did not have the added explanatory capability and adequacy for the research, which indicated saturation. Therefore, the interview with these people was not continued. The interview was conducted by the first author . Initial coding was done by the first author and then reviewed by other authors. Then, the extracted codes and categories were reviewed by two out-ofstudy psychology Ph.Ds. The interview grid was the same in survivors, family members, and oncologists. All interviews were conducted in Persian and analyzed in Persian. Then, the research report was translated into English. In this process, two independent English translators were used, and then, in consultation with the third translator who had a Ph.D. in psychology, the final English translation of the research report was provided. In this study, researchers maintained their theoretical sensitivity. The researchers tried to use their previous knowledge from the psychological literature and professional experiences to determine what happens in the data. By going beyond mere descriptions, the researchers tried to abstract the similarities between the different codes, concepts, and categories, and compare and modify them in subsequent interviews. Also, by abstracting from the interviewers' statements, the interaction between the categories and their position in relation to each other was identified in a process coding to achieve theoretical integration. The process of collection and analysis of research data has been drawn in Fig. 1. --- Results In the present research, five categorical clusters appeared: Self-disruption, Cancer-based socio-cultural experiences, Individual-environmental preparedness, and Self-reconstruction strategies, and the Quality of self-coherence; and the relationship between these five concepts have been understood by the major concept of "transitional selfdisappear." Categories and components of 5 clusters can be seen in Table 3. --- Self-disruption The concept of "self-disruption" includes several various components that indicate a kind of cracking and gap in the experience of self and the emotions associated with this experience. By abstracting from the data, the category of self-disruption seems to be an antecedent to the phenomenon of "transitional self-disappear." In the following, each of its 7 categories is described: 1. Temporal disruption refers to the point that by touching and a close encounter with death, patients think they have lost the past, and the phenomena of cancer and death are dominant on their present time, and the future is ambiguous and dark: "Those early days when I was newly infected the future was dark for me. I do not want to think about the future now. I thought I would not be alive any longer for another four months ," and "According to some patients, the situation of cancer is 'as if I am a rock that has been left on top of a mountain and I know that I will collapse at the bottom of this mountain', and then it will be in ambiguity ." 2. Highlighted body refers to the point that due to severe physical experiences the person's body is in the center of his/her attention and monitoring more than before, and it seems that a rift is created between the person and his/her body: "I think I am an imperfect creature right now. That day I told my husband that I am no longer a woman at all, so I am imperfect ," and "After my wife got cancer, her body became weak, and now my wife suffers from impotence and sexual weakness ." 3. Interference in agency reflects the feeling in a patient that she/he has lost agency and control over his/her roles, tasks, and actions of life : "Compared to before my illness, I lost a lot of ability to do tasks. Well, one of my hands does not work much as before. I have to be dependent on others ," and "Cancer transmits some of the feelings to the person that is not really in the patient's control. I think what is going on in the person is that 'we have nothing left in our hands' ." 4. Individual-self disruption indicates that many people with cancer state that they are different from someone they have been in the past in terms of interests, goals, inner values, and so on: "I am very different from the person I was before; one varies very much. I was com- pletely another person before. I was very good. I am not like the previous person at all ," and "My husband has been feeling very, very weak about herself since he got cancer ." 5. Over-differentiation means that when people are affected by cancer, are faced with the ontological question, "Why me? Why was I chosen to have this illness and not others?." Also, they feel that their experiences and flow of life have become very different and unusual, and their distinction from others has increased: "I am very different from people who do not suffer, in terms of my ability, in terms of my beauty ," and "When my sister found out she had cancer, she was always faced with this question, 'Why me? of all the people, why me?' ." 6. Relational self-disruption indicates the disturbance, being threatened, and the fragmentation of a person's definition of themselves in relation to others; because after getting cancer, significant relationships and mutual bonds of an individual are damaged. In addition, the affected person with the idea of his/her possible absence in the future has important concerns about important relatives and his/her relationships with them: "Ninety percent of people with cancer, like me, are those who are not seen by those around them, and have put them aside ," and "Some relatives and friends of a person with cancer, when they find out that person has cancer, do not go to see what is happening, do not call, do not follow up, while that person is waiting for support by them ." 7. Painful emotional experiences refer to a range of unpleasant emotional experiences that occur after getting cancer and damage to various dimensions of the self: "Ever since I got cancer, these feelings have generally been inside me, perhaps a deep nostalgia, perhaps a deep disillusionment, frustrated heart, perhaps a heavy disgust-Interviewee L)," and "When she realized that she had cancer, she became very angry with the world and became very angry with God ." Cancer-based socio-cultural experiences This concept means a set of socio-cultural experiences based specifically on the experience of cancer that patients face. These experiences can affect the sufferer's self, which is now undergoing a kind of transformation. In the following, each of its 6 categories is described: 1. Unexpectedness is related to this cultural attitude that patients considered themselves far from cancer because everyone believes only certain people get cancer, that is, people who have behaved wrongly and sinfully in Fig. 1 Visual representation of the research data collection and analysis process their lives. So everyone knows him/herself away from cancer and experiences it unexpectedly: "One always thinks that this illness is for others and never suffers from such a thing-Interviewee C)," and "People who do not get cancer live their lives, and they always do, and they think that events, deaths, and illnesses are for others ." --- 2. Cultural attitudes indicate the viewpoints and ideas of community members and those around the survivor about "cancer," which included two ideas and beliefs: cancer as a catastrophe and as death . "People around me said that it seems that a person who refers to the hospital for cancer will really die ," and "I think cancer is a shock in a person's life, but as much as the society is afraid of cancer and see it as very big, the disease itself is not so scary ." 3. Illness explanation describes that cancer is usually considered retribution of past errors and sins, being chosen by the destiny , the consequence of unhealthy behaviors and psychological stresses: "In our culture, it is believed that whoever does the wrong and sinful thing will finally get the answer ," "Cancer is just a choice by fate; I might say the choice of God or the choice of the universe. And I definitely have a very bad feeling about it that I was so miserable that the lot fell upon in my name ," and "In my opinion, cancer does not come to a person all at once, but it is a thing that has a history; It is either based on nervousness, or trauma, or something else ." 4. Cancer metaphors refer to the representation that each patient has of their illness. These representations seem to be shaped by social beliefs and feedback from others about one's illness. cancer metaphors were expressed by participants in three ways: cancer as an "opponent/enemy" : "Cancer illness is a real enemy that is hitting from within ." Cancer as an "uninvited guest" : "One day I gathered all my colleagues and told them I have an uninvited guest that I'm not going to fight, but I have to cope with ." Cancer as an "inspiring" : "Cancer is a thing that wants to show us the value of our health value or our existential value ." versations and interactions between the patient and the treatment team and others about cancer and form a part of the survivors' lives; and included "negative feedback from the doctor, nurse, and hospital employees" to the patient and his/her needs as well as some "unpleasant messages about the illness" to the patient: "The doctor told me that you would experience severe symptoms, and you would not survive for more than six months. He said we would start with chemotherapy but only six months ," and "When I went to see my husband at the cancer unit in the hospital, the behavior of the cancer unit nurses were not at all appropriate for these patients, and unfortunately, they had no knowledge of the conditions and concerns of the cancer patients ." Individual-environmental preparedness This concept includes a set of general individual or social conditions and factors that are not specific to the experience of cancer, but affect the way a person encounters what has happened. In the following, each of its 3 categories is described: 1. Past characteristics/strategies explain the previous coping styles, traits, and values that have developed in a person over the years, and now that a person has the disease, it can also affect in facing cancer in exposure to the main phenomenon: "I am generally a person who tries to cope with the conditions, that is, I was the same before the cancer illness, I do not take it hard ," and "When people receive a cancer diagnosis, all the values that they have grown up with since childhood help them after a while, to adapt to the situation ." 2. Financial problems explain the very high costs of treatment and the financial problems of people at the time of getting cancer, that can affect how a person copes with the illness and its consequences: "I had to sell my daughter's golds, for chemotherapy ," and "Financial problems and medical expenses really increase the pressure of the disease and even the fear of being disabled and it is very annoying ." 3. Health system shortcomings refer to the set of inefficient programs, functions, and actions of the health system and its activists that are not limited to cancer illness, but can affect the confrontation experiences and procedures of people with cancer: "Unfortunately, doctors and nurses do not provide enough education about the course of cancer symptoms, and there is no proper nutrition counseling ," and "When we went to the doctors, they did not spend enough time and answered very briefly and concisely, which made us more worried ." Self-reconstruction strategy This concept refers to strategies that are intentionally or unintentionally used to reconstruct the "self" that has been disrupted and disappeared in facing cancer. In the following, each of its 5 categories is described: 1. In the redefining theme strategy, after getting an illness, one tries to find a new theme or redefine some former possessions in a different and new way to make the "self" coherent around it: "I feel that my mission is just to get these two children to a stage in life where they can be independent, and no longer depend on or need anybody, then I have nothing to do in this world ." 2. In the agency-seeking strategy, a person tries to regain a sense of agency and control over life by resuming activities, showing his/her "self" normal, and fighting his/her illness. The consequence of this effort is a feeling of "self" again: "I exercised during chemotherapy while the doctors said you should not do it. I, by doing my activities, wanted to show that I was still alive ." 3. In the redefining Identity strategy, after facing an illness crisis, people try to redefine the position of the body in their understanding of self , accept the illness identity as a part of their identity , and emulate the heroes who have won the battle against cancer , and reconstruct themselves. 4. In the denial of illness identity strategy, one tries to reform and reconstruct the fracture and disruption of "self" by denying cancer and what has happened: "From the day I realized that I was sick, I did my best to avoid anybody who has cancer. I do not want to, I did not want to accept at all that I am one of them ." 5. In the strategy of considering illness as a stage, regarding cancer as one of the stages of life, one tries to integrate this experience with other stages and periods of life, in this way to redefine her/himself life story: "When I finished the chemotherapy, I cut my hair short and took a photo and posted a story on Instagram, telling all my friends, family and acquaintances that I was going to start the new stage of my life ." --- Quality of self-coherence The quality of self-coherence explains the consequences that occur after experiencing self-disruption and applying strategies. By abstracting data, these consequences are defined in a range from adjusted to unadjusted coherence: 1. Adjusted coherence includes a set of healthy and adaptive consequences that lead one to believe that after cancer, her/his life has become meaningful and directional: "Now I understand how much a person loves life. At that time, life was not valuable to me ." 2. Unadjusted coherence is a set of non-adaptive consequences, and it seems that the survived person has a confused definition of "self" leads one to believe that her/his life no longer has a recognizable meaning and purpose: "I no longer have the vivacity I had before, I have no previous mood. In this situation, I'm isolated and bored ." Transitional self-disappear This study developed the substantive model of "transitional self-disappear" to explain how people understand the "self" after getting cancer . This title was abstracted from the interviewees' descriptions and relationships between five major concepts. Indeed, Experiencing cancer and facing the issue of death makes people feel that the present time is a painful limbo that cuts the connection between the past and the future. That is, disruption is created in the temporary aspect of the self. This disruption and disconnection between the past, the present, and the future occur in various dimensions of understanding of self, including agency, physical, intrapersonal, relational and social, and emotional aspects. Therefore, in facing cancer, numerous aspects of experiencing and understanding the "self" are damaged and disrupted, and that previous "coherent and integrated self" is suddenly faded and lost. However this situation is not necessarily stable, rather self-disappear occurs transiently, meaning that self-disappear is an annoying but transitional stage to enter new and different conditions of life. And it is the result of self-reconstruction strategies and occurs in the context in which one lives . The process of transitional self-disappear has been drawn in Fig. 2. --- Discussion This qualitative study was conducted to explore the process of change of self in people with cancer. According to the present study, at the time of an unexpected encounter with cancer, people experience a "temporal disruption"; meaning that they lose the sense of self-continuity over time. They suddenly think whatever they have built in the past is lost and there is no future to build. This is consistent with the previous finding that has shown people with cancer expose existential challenges in their relationship to time [11]. Therefore, it seems that the sense of self that connects the past to the present and future of a person has disappeared. Also, getting cancer is associated with some physical consequences , which attack the person's previous understanding of his/herself. Probably the reason for such an experience is because the body becomes the center of attention and is considered by the person more than before, which changes the person's interaction with his/ her body. Besides, following physical changes caused by cancer, people experience bodily doubt, and their previous assumptions about the relationship between the body and the "self" and their sense of wholeness are disturbed. Some previous studies [11,14] also support this idea. After the occurrence of such experiences of chronological disruption and body highlighted for the affected person, the sense of control and agency of "self" fades and is distorted. The patient, as a result of changes and losses in the experience of "self," is both confused and thinks that his/her life story is different from the life story of the person he/she was before and that his/her difference with others have proliferated because he/she is no longer an ordinary human being according to the definition of the culture and society in which he/she lives. One of the important experiences in this regard that has serious effects on the experience of "self" in chronic illness conditions is a change in a person's daily habits. Because of these unpleasant experiences and social reactions to a person's illness, his/her relationships with others diminish or change, and he/she experiences cases like isolation and loneliness. Thus, consistent with the study of Tarbi and Meghani [11], such experiences can impair the relational self, which is related to reciprocal interactions, intimacy, friendships. The study of Moore et al. [29] has shown that social isolation predicts the overall survival of patients with cancer. The sum of these experiences threatening the integrity and coherence of the "self" is associated with a range of unpleasant emotions . But the findings seem to show that the journey of patients with cancer does not end here. Rather, self-disappear provides an opportunity for the sufferer to relinquish the understanding and narration he/she already had of him/herself, and by transcending from the living past and the imagined future, he/she reconstructs and redefines the "self." The experience of trying to reconstruct the identity of self by cancer survivors has also been reported in the study of Harkin et al. [12]. Patients with cancer try for self-reconstruction and use different strategies for this purpose. For example, redefining theme and agencyseeking strategies can be ways to retrieve thematic coherence and retrieve the individual "self." Consistent with the results of Tiedtke et al. [30] on the return of patients with cancer to jobs, this finding seems to show the importance of increasing Fig. 2 Model of "transitional self-disappear" in the study of cancer survivors the sense of agency in cancer survivors. Besides, redefining identity through the acceptance of cancer-related experiences as a part of the identity of "self" is used by survivors for a variety of purposes, such as reforming chronological disruption, reconstructing relational-self, and reducing over-differentiation. These strategies can be efficient or inefficient depending on the situation and the amount of use. Ultimately, after a long period that people ignore their chronic illness, and know it insignificant, struggle with it, or compromise with it, they reach the sense of wholeness again, that is, the unity of "self" and the body versus loss [10], and they can experience self-re-coherence. Thus, self-disappear is not a permanent experience, rather it is a stage of transient, and each person experiences it under the impact of the type of strategies and the conditions of his/her experiences. The conditions of the experience of patients with cancer and survivors can be examined at two general and specific levels. The general level includes past characters and the previous coping strategies of the individual and macrosocial conditions , that is not limited to the experience of cancer and the experience of transitional self-disappear but can affect how to face it. But the condition limited to experiencing cancer includes attitudes, conversations, and actions that are solely specific to cancer and the person with cancer. One of the implications of the present study is that in assessing the degree of adjustment of people with cancer, it can be determined that what extent each of the components of "self-disruption" has occurred in him; for example, how much the sense of agency of the person has been disturbed, the body has been highlighted, and the integrity and continuity of the person's narrative chain of his/herself that have been disturbed. Also, the person with cancer can be helped to redefine autobiographical memories, life goals, and future plans in a way that, while not denying the real changes caused by cancer, strengthens the coherence and integrity of the identity. In addition, it seems that if the policies of the health system include "education of the medical team and family of people with cancer," "more attention to the necessary and sufficient medical and psychosocial services for people with cancer," "changing the socio-societal beliefs and attitudes about cancer," and "cancerrelated financial problems," people with cancer will experience the path of self-destruction and self-reconstruction more easily, and go through it more successfully. --- Conclusion Few qualitative studies have examined the process of changing various components of "self" in cancer survivors, and especially in the socio-economic conditions of Iran, no research has been done so far. However, the process of changing the "self" can determine the degree of adjustment of a person to new living conditions in the context of their illness. The rich data and findings obtained from this study led to the illumination of the process and path of change of "self" in survivors. The findings also show that intrapersonal and extrapersonal factors-both at the macrolevel and at the near and specific level -can affect the changes and reconstruction of "self" of people with cancer. The consistency of the findings with the theoretical and research literature indicates the accuracy and precision of the findings. The findings of the present research should be interpreted and used with caution because although it was tried to examine as much as possible the diversity of experiences, but interviews with survivors were limited to a few specific types of cancer. --- Data availability Not applicable. Code availability Not applicable. --- Author contribution Conceptualization: MD, JH. Data curation: MD, JH. Data analysis: MD. Investigation: all authors. Writing original draft: MD. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript. --- --- Conflict of Interest The authors declare no competing interests. Publisher's note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Purpose People who experience cancer often face serious and unpleasant challenges in understanding their past, present, and future. They think they have lost their lifetime, agency, and interpersonal relationships, and no longer know their bodies. These experiences can change survivors' perceptions of themselves. Therefore, the present study aimed to develop a deep theoretical understanding of the change of self in cancer survivors. Methods Semi-structured interviews were used to collect data. Interviews were conducted with 17 cancer survivors, 2 oncologists, and 2 family members of survivors. In this study, grounded theory methodology was used to explore the process of understanding and experiencing "self" in cancer survivors.The present study generated a model about the change of self, with the main concept called "transitional self-disappear," which is understandable based on the concepts of self-disruption (temporal disruption, highlighted body, interference in the agency, individual-self disruption, over-differentiation, relational self-disruption, and painful emotional experiences), self-reconstruction strategy, and quality of self-coherence, and occurs in the context of the cancer-based socio-cultural experiences and individual-environmental preparedness. Conclusion This model illuminated the complex paths and roads of the survivors' journey from self-disappear to self reconstruction/re-coherence. A healthier experience of this journey can be facilitated by the transcendence of the "self" conceptualized in the past, and the promotion of specific (cancer-based socio-cultural experiences) and general (individualenvironmental preparedness) conditions.

Strategies to record and use ethnicity information in routine health data Ethnicity information is often missing from health data, impeding action on inequalities. Recording and using ethnicity data will require training, efforts at standardization, and policy changes, while engaging with patients and the public. Ash Routen, Ashley Akbari, Amitava Banerjee, Srinivasa Vittal --- Data collection To researchers who study ethnicity and health, these inequalities came as no surprise 1 . It has long been recognized that people from certain groups experience substantial barriers to accessing health care, as well as disproportionate rates of disease and its consequences, compounding their many other disadvantages in sectors such as employment, education, and housing, themselves risk factors for poor health 2,3 . Therefore, from a health equity perspective, the case for measuring and understanding variation in health and its determinants in different ethnic groups is obvious. Effective planning of health, social care and public health services requires data on ethnicity to ensure they are culturally appropriate, allocate resources equitably, and evaluate the impact of policy, with the ultimate aim to reduce variations in outcomes 4 . A lack of such data is a particular problem in research, where participants are often unrepresentative of those who will ultimately receive interventions being evaluated. This has been apparent throughout the COVID-19 pandemic, with many clinical trials failing to record or report results by ethnicity 5 , in part because some countries prohibit the collection of data on ethnicity, citing concerns about privacy 6 . Ethnicity is a complex concept, incorporating notions of race , religion, and culture, especially for individuals born into families with multiple heritages. When asked their ethnicity, a patient's first instinct may be to question why they are being asked. Their answer may differ according to their previous experience, especially if they have several possible identities, as is increasingly the case, and where they perceive that answering the question may place them at risk of discrimination or even violence, as described, for example, among Roma in central Europe 7 . There are also particular challenges in international comparisons, as context influences the response. For example, it may be quite different to be a Gujurati in India, Kenya, or the UK. Even where such data are collected, the quality may be variable. It has been suggested recently that inconsistencies in data on race in the USA delayed identification of groups at greatest need during the COVID-19 pandemic 8 . The experience in countries that collect ethnicity data shows its importance, with many examples from the UK, which is unique in that data on ethnicity are collected routinely in most interactions with public authorities. There is a legal requirement on the National Health Service to do so, rather than, as in some other countries, limiting this to ad hoc research studies or using proxy measures, such as country of birth , as in France. --- Defining ethnic groups The recording of ethnicity principally involves collecting data on an individual's membership of an ethnic group, but related information on primary language, religion and country of birth may also be collected, depending on the country and healthcare sector. In the UK, information on ethnicity is collected across a wide range of routine electronic health record data sources, primarily captured from patients within NHS systems at the point of care. These data are collected predominantly via self-reporting by patients and with or by health care practitioners. Ethnic groups are socially constructed and distinct from genetic ancestry. Ethnicity is defined on the basis of a society's norms, attitudes and expectations, rather than being a readily measurable biological variable where there is widespread agreement on measurement 9,10 . For this reason, the categorization of ethnic groups can differ over time and place. In the UK, the broad ethnic group Asian largely comprises people from the Indian subcontinent, whereas in the USA the term often implies people from East Asia. Similarly, classifications often evolve over time, with the 'one-drop' rule defining a person as Black if they had any Black ancestry, which was used for the purposes of segregation in twentieth century USA 11 . Terminology reflects social factors such as experiences of migration and broader historical processes. Establishing meaningful ethnic groups to analyse health disparities is not a straightforward task. On the one hand, it is often preferable to study narrow ethnic groups lest important heterogeneity be masked 10,12 . On the other hand, some minority ethnic communities may be relatively small, which can prevent robust statistical analysis and raise concerns around maintaining confidentiality. It is increasingly appreciated that ethnicity intersects with other characteristics, such as gender, sex, or socioeconomic position 13 . There can be considerable value in adopting an intersectionality perspective, but this may again require a trade-off against studying more disaggregated ethnic groups. In the UK, a pragmatic classification of 18 ethnic categories has been chosen 14 , which, where available, provides standardized categories across government and healthcare settings, allowing for the monitoring of inequalities across health, policy and social care spheres. --- Patient involvement Although information on ethnicity is typically collected through patient self-report, minority ethnic communities have rarely been involved in the design, implementation, collection, and use of routine healthcare data on ethnicity 15,16 . The active involvement of minority groups in the various processes of collecting and utilizing ethnicity data should be prioritized as a way to build trust in communities that are often hesitant to provide data due to wrongful use or past abuse of gathered information. The quality and accuracy of ethnicity data and the evolving relevance of ethnic categories will likely be improved by community members validating or sense-checking ethnic group coding standards 15 . Community members have been mobilized in some inclusive ethnicity data collection or design processes. For example, in the 2018 census in Colombia, the national statistical office undertook a wide-ranging consultative exercise with various indigenous and minority ethnic groups. This consultation resulted in revised question wording and ethnic group response options, to align with the consulted communities' needs. Such public involvement should be undertaken by all organizations collecting routine ethnicity information in health and social care systems, who should also work with ethnic minorities on governance of data repositories and ownership of data 17 . --- Boosting collection One barrier to ethnicity data collection is healthcare professionals' lack of knowledge about the importance and use of the data, including a reluctance to ask for ethnicity data and a lack of demonstrated need for the collection of data . Experiences of providing ethnicity information within healthcare have been reported as acceptable, although in some studies, participants have expressed dissatisfaction about being asked to provide their ethnicity on repeat visits 19 , and there needs to be a clear explanation from the healthcare provider as to why the data is being collected and how and what it would be used for 19 . At the organizational level, a comparison of self-reported ethnicity and Hospital Episode Statistics -coded ethnicity in England found that misclassification varied only by a small amount between ethnic groups, but varied by a greater degree between hospitals 20 . This suggests that processes within hospitals may influence coding accuracy, although whether this is driven by staff or organizational issues is unclear. --- Box 2 | Recommendations to improve ethnicity recording in routine health data • Embed ethnicity information collection within routine processes, such as during regular health checks within primary care. • Regular reporting of data quality at regional, national and international levels, with cycles of improvement for both completeness and quality. • Convey the value of data collection to the public in order to maintain public trust. This could involve a cycle of feedback and improvement between healthcare providers, data providers, and the public. 21 . Challenges remain, however, as while there is high accuracy for people who self-identify as white British , there is poorer accuracy for minority ethnic groups 20 . --- training and standardization Two key factors that affect collection of ethnicity data are staff training and knowledge, and variation in data collection procedures 18,22 . Standardized data collection protocols and the use of standardized ethnicity categories that can be harmonized across sectors would reduce this variation. Harmonization across countries or continents may not be appropriate, as ethnicity is a social construct and varies significantly between countries. Self-identification of ethnicity by the patient will avoid errors and emphasizes the value of an individual's lived experiences, as will self-completion of developed data collection forms. This will require comprehensive staff training to address barriers such as lack of time, or patient capacity for self-report, which can present in pressurized clinical situations 4 . Training should be developed with patients and public members to ensure that developed protocols are acceptable to patients, the reasons for collecting ethnicity information are clear and justifiable for both patients and staff members, and conveyed in appropriate languages and spoken or written formats 19 . Public involvement will avoid pitfalls. During the COVID-19 pandemic, the initial practice in the UK was to use the ethnic grouping Black, Asian and Minority Ethnic for early data analyses on outcomes, until this was discontinued following public input and feedback that this was not an appropriate description, as BAME groups together disparate ethnicities 23 . Community members should also be involved when disseminating information to the public on the importance of data linkage and collection more generally, as well as communications on how health and ethnicity data in particular are used and interpreted. As well as collecting ethnicity information, data on the wider determinants of health will help to understand inequalities. Most of the differences between ethnic groups in COVID-19 outcome analyses are due to wider structural factors, such as housing and intergenerational living, poor-quality employment and occupational exposure, and environmental support for health behaviours, that are imperfectly collected in electronic health records, if collected at all 24 . --- Policy and professionalism Newly developed protocols, guidance and ethnic grouping standards will require support across sectors. Policy changes will be needed to enshrine regular reviews of guidance, as well as routine monitoring and publication on the quality of ethnicity coding data 4 . There is an opportunity for ethnicity to be an exemplar for improving data quality overall; the power of ethnicity data will be increased if all data recording is also improved. Minimum standards for electronic health records should be introduced and health informatics, including the work of the Professional Records Standards Body and the Faculty of Clinical Informatics in these areas should be professionalized, and research using electronic health records increased. Data quality should be regularly reported at regional and national levels, with cycles of improvement for both completeness and quality. In addition, ethnicity collection reporting could include cross-disease and cross-country comparison; there was little or no mention of ethnicity in the Global Burden of Disease studies and other similar inter-country or global data collection exercises 25 . Efforts to collate and improve comparability of ethnicity data globally are needed, as comparison of health inequalities data between countries is limited due to inconsistency in ethnicity data collection methods and variance in ethnic group categorizations. Addressing these issues will be complex as self-defined ethnicity will differ depending on the social and cultural context in which the individual is responding 26 . In addition, any international comparison analyses must be clear on the different experiences and cultural context of comparable ethnic groups between countries, such as how they are or are not minoritized. Ultimately, funding is required for health care systems and researchers, with supporting policy to ensure continued implementation and monitoring. These are not new arguments, but they are receiving renewed attention following the impact of the COVID-19 pandemic. Action is required to ensure that existing health inequalities based on ethnicity are not maintained or exacerbated. Improving the collection and reporting of ethnicity information in routine health data should be one part of a wider process to tackle health inequalities. ❐ Ash Routen 1 , Ashley Akbari 2 , Amitava Banerjee 3 , Srinivasa Vittal Katikireddi 4 , Rohini Mathur 5 , Martin McKee 6 , Vahe Nafilyan 7 and Kamlesh Khunti --- --- Competing interests The authors declare no competing interests. --- --- Competing interests --- Adverse effects of acquisitions in the pharmaceutical industry Publicly funded research leads to the development of many new drugs, but the profits are largely reaped by big pharmaceutical companies through exclusive licensing deals, mergers and acquisitions, which can reduce competition and patients' access to medicines. Melissa Newham and Kerstin N. Vokinger D eveloping new therapies is a risky, lengthy process that requires substantial up-front investment. Governments are actively involved in supporting research and development . However, promising drug candidates often migrate from publicly funded research institutes and small biotech companies into the hands of big pharmaceutical manufacturers through a sequence of licensing agreements and acquisitions 1,2 . These deals are problematic for at least two reasons. First, they result in the private sector disproportionately reaping the financial rewards from drugs that often originate from publicly funded research. Second, these deals have the potential to be harmful to patients, and society at large, because they can provide manufacturers with an opportunity to kill the competition, leading to fewer therapeutic alternatives on the market as well as higher drug prices. Chimeric antigen receptor-Tcell therapy for the treatment of certain hematological malignancies is a useful case study to highlight the challenges of these acquisitions. --- Lessons from CAR-t therapies CAR-T therapy is an innovative new treatment class for certain hematologic malignancies, such as B cell lymphoma, which uses genetically modified versions of the patient's own immune cells to attack cancer cells. Currently five CAR-T therapies are approved in the United States, European Union and/or Switzerland 3 . The development of approved CAR-T therapies can be traced back to research undertaken by academic institutions and research centers . Technologies were then transferred from research centers and academic spin-offs to biotech companies through exclusive licensing agreements. Shortly before the approval of these therapies, in their late stages of development, all therapy candidates were acquired by large pharmaceutical manufacturers. Therefore, although numerous stakeholders have been and are involved in developing CAR-T therapies, three large pharmaceutical manufacturers now dominate the market for approved therapies. The pathway to big pharmaceutical companies cornering the market for innovative therapies is paved by three types of deals that transfer drug ownership from one entity to another: mergers, acquisitions and licensing agreements . The development history of axicabtagene ciloleucel illustrates the typical ownership trajectory of a CAR-T therapy well. Axicabtagene ciloleucel originated from research undertaken at the Weizmann Institute of Science in Israel. The scientist leading this research then founded a spin-off company, which entered an exclusive licensing deal with a small biotech, Kite Pharma, for patents related to CAR-T. Axicabtagene ciloleucel was also developed using technology invented by and licensed from the US governmental agency the National Institutes of Health by Kite Pharma. Finally, Kite Pharma was acquired by the large biopharmaceutical company Gilead, while axicabtagene ciloleucel was under priority review by the US Food and Drug Administration . --- Early public funding Publicly funded research plays a crucial role in the development of new drugs, particularly in the early stages of research and development, and CAR-T therapies are no different 1,4,5 . The first approved CAR-T therapy was primarily developed by researchers at the University of Pennsylvania with funding from the NIH, which has directed almost US$2 billion towards CAR T therapies. Similarly, in Europe, CAR-T research has been funded by the EU Horizon 2020 program and national funding bodies. Technologies invented and owned by the NIH were necessary for CAR-T therapy development, as indicated by the licensing deals between the NIH and biotech companies. Biotech

continued to decline until elimination was achieved. China's success in achieving elimination was due to multiple factors including a sustained political commitment, economic and social development, community involvement, and an evolving health system aiming to provide universal health coverage. Underpinning the success was a problem-solving mindset that valued research and innovation. Beyond the success of drug development, which was coordinated at a central level, the capacity of regional governments and health systems was critical to generate and use data and adapt to local epidemiological and other contextual elements. Malaria was thus seen as a problem to be solved and not just a task to be performed.

Introduction Adolescence is a critical period of social and emotional development , during which normal developmental processes, such as hormonal changes, difficulties with emotion regulation, and salience of peer relationships, mean young people are especially susceptible to socioemotional problems when faced with challenging contexts. Further, there is evidence that rates of mental distress have increased among adolescents in the past 20 years, particularly among girls . Explanations for this have centred on increased pressures related to exams, the rise of social media, and the impacts of rising inequality and poverty . It is against this background that there is concern about the impacts of Covid-19 on adolescent mental health, especially for the most disadvantaged, marginalised, and vulnerable groups . School closures and social restrictions directly impact aspects of young people's lives already implicated in the occurrence of mental distress , amplifying these pressures and risks at a critical developmental stage, with potential lifelong consequences. There is particular concern about the impacts on mental health among those living in households directly affected , among those vulnerable to abuse and violence, among girls, and among young people from minority ethnic backgrounds. For example, minority ethnic communities have been impacted more by issues related to housing, finances, and employment during the pandemic , and have experienced higher rates of infection and death from Covid-19 . Some relevant evidence has been published. Many surveys have been conducted, some with repeated measures at several time points. However, findings are inconsistent across studies. Some surveys suggest the mental health of young people worsened, particularly among specific subgroups , and others suggest mental health has remained constant or even improved slightly . However, most early surveys were cross-sectional, used convenience online samples, which are subject to selection biases, and did not have pre-Covid-19 data for comparison. More recent studies including pre-and post-Covid-19 comparisons have emerged , but findings are again mixed, methods varied, and samples relatively homogenous, with minority ethnic groups and those from low-income householdsthat is, those most likely to be impacted by social restrictions and school closuresunderrepresented. Further, a primary focus on overall trends neglects variations by social and ethnic group and by direct impacts of the pandemic, be these negative or positive. Our study of adolescent mental health in inner-London, the Resilience, Ethnicity, and AdolesCent Mental Health study, comprises socially and ethnically diverse cohorts, initially aged 11-14 years, followed annually for 3 years immediately prepandemic. To examine the impacts of the first period of social and economic restrictions in the United Kingdom on the mental health of young people from diverse backgrounds, we followed these cohorts midpandemic . We sought to examine variations in impacts on mental health by social and ethnic group, by preexisting risks , and by the direct consequences of Covid-19, social restrictions, and school closures. We sought to test four primary hypotheses: 1. Mental distress increased between Time 1-3 and Time 4 2. Increases in mental distress between T1-3 and T4 were greater among those in putative risk groups: those with prior mental health problems; girls; those in low-income households; and minority ethnic groups 3. Increases in mental distress between T1-3 and T4 were greater among those in putative risk groups and who reported worse midpandemic circumstances 4. Changes in mental distress between T1-3 and T4 varied by perceived impacts of the pandemic, with increases among those who reported negatives and decreases among those who reported positives --- Methods REACH has been codesigned and implemented in partnership with young people and teachers. For T4, in March-April 2020, we conducted several focus groups and interviews with our Young Persons Advisory Group and Teacher Advisory Group to shape our research questions, methods of recontact, and the content and wording of the questionnaire. --- Design, participants, and T4 procedures REACH is an ongoing accelerated cohort study of adolescent mental health in two socially and ethnically diverse inner-city London boroughs, Southwark and Lambeth, United Kingdom. The cohorts, local context, and prepandemic study procedures are described in detail elsewhere . The REACH cohorts were recruited from twelve local secondary schools and are representative of secondary school pupils in the two boroughs . At T3, participants were provided with a 'Consent to Contact' form, providing options to be contacted about participation in future waves of data collection. For T4, we sought to recontact, reconsent, and collect data from all young people who had taken part in at least one prepandemic wave of REACH and who, by then, had provided recontact information . --- Data collection Prepandemic, participants completed three waves of data collection at yearly intervals . All completed a questionnaire that comprised validated schedules designed to elicit detailed information on demographic characteristics and social circumstances, mental health, and putative risk and protective factors . At T4, we revised the questionnaire, retaining core validated and widely used schedules on mental health and social circumstances. Overall and specific types of mental distress were assessed using the Strengths and Difficulties Questionnaire , the Short Mood and Feelings Questionnaire , the Generalised Anxiety Disorder Scale , and a single item on lifetime self-harm . We also added items related to the impacts and experiences of Covid-19 by reviewing all emerging Covid-19-related mental health research to maximise comparability. We included items on Covid-19 infection; housing space and quality; household economic impacts; relationships and supports; lifestyle and daily routines; and worries, concerns, and perceived positives. For full details, see Appendix S1. Primary outcome measure. The self-report SDQ is one of the most widely used and well-validated measures for screening 11-17-year-olds for emotional and behavioural difficulties during the preceding 6 months . Following established procedures , we calculated a total difficulties score and internalising and externalising scores . Where relevant, total difficulties scores were categorised using . Prior to completing the T4 questionnaire online, all young people provided electronic informed consent after reading information sheets. T4 data collection is ongoing. The analyses presented in this paper were conducted on those who participated between May and August 2020 , that is, before the reopening of schools in England. All procedures were approved by the Psychiatry, Nursing and Midwifery Research Ethics Subcommittee , King's College London . --- Analyses Analyses were conducted in three steps, following the approach used by Pierce and colleagues in their analyses of the acute impacts of the Covid-19 pandemic on adult mental health . First, we produced descriptive statistics for the T4 sample and, to assess potential biases, compared the T4 sample with the full REACH cohort and the target population. To account for potential nonresponse bias we calculated inverse probability weights, as follows: we selected putative predictors of nonresponse a priori and by comparing those who completed the T4 questionnaire with those who did not on core variables; we modelled selected predictors using multilevel logistic regression, checking model fit using Hosmer-Lemeshow goodness of fit test ; we used predicted probabilities to calculate weights ; and after checking the range and distribution of weights, we truncated weights at 10 to address potential issues with large weights. We applied inverse probability weights to all subsequent models. Second, to test Hypothesis 1, we estimated the prevalence of mental health problems and lifetime self-harm at each wave in the sample that took part at T4 . Mental health problems were defined as SDQ scores ≥18, depression as SMFQ score ≥12, and moderate-to-severe anxiety as GAD-7 score ≥10. We also calculated mean SDQ total difficulties, internalising, and externalising scores at each wave. 95% confidence intervals were estimated using robust standard errors to account for the clustering of pupils within schools. Third, to test Hypotheses 2-4, we used fixed effects regression to estimate the pre to midpandemic withinperson change in SDQ scores , overall and by social group, prepandemic risks , and midpandemic circumstances, concerns, and experiences. These models included those who completed a questionnaire at T4 and at T3 or T2 or T1 . Following the approach by Pierce et al. , an indicator variable was created and fitted in all models to capture change in mental health scores between T1-T3 and T4, adjusting for age and the passage of time . Continuous SDQ scores were used as the outcome in these models to maximise the use of all available data and improve statistical power. As fixed effects regression models quantify the within-person change in the dependent variable , each participant effectively acts as their own control, thereby accounting for potential confounding effects of time-invariant variables, for example, sex and ethnic group. Positive coefficients indicate worseningand negative coefficients improvingwithinperson mental health between T1-T3 and T4, accounting for prepandemic trends in mental health. To examine variation in the impact of the pandemic on within-person change in SDQ scoresthat is, between-group differences in within-person change we fitted interactions between each independent variable and the Covid-19 indicator . We then used Stata's lincom and testparm commands to estimate subgroup-specific within-person change in SDQ scores and to examine the strength of evidence for an interaction. The proportions with missing data pre-and mid-Covid were very low , so available case analyses, with inverse probability weights, were used. All analyses were completed in Stata Version 16. In interpreting findings, we focus on the magnitude and precision of estimated effects and, where effects are modest and confidence intervals wide, we are cautious in drawing inferences. --- Results Between May and August 2020, 1074 completed the T4 questionnaire. Of these, 1055 had completed questionnaires prior to the pandemic . There were some variations in response at T4 by demographic characteristics and prior mental health. Those who completed the T4 questionnaire were more likely to be girls , more likely to be of British White ethnicity , and less likely to be of Black Caribbean ethnicity . Among boys, but not girls, those with a probable mental health problem at prior time points, particularly at T2 and T3, were more likely to participate at T4 than those without . When applying inverse probability weights, the representativeness of the sample on core demographic variables and prior mental health problems was, broadly, restored. That is, weighted proportions were broadly similar to the REACH total sample . --- Social impacts Overall, social impactsand related worries and perceived positiveswere mixed . For some, home circumstances, relationships, and routines were profoundly disrupted, especially those in low-income households and in minority ethnic groups . For others, there were positive changes reported that relationships with family improved). Almost all reported a mix of concerns and positives related to social restrictions and school closures, with over 50% reporting 4 or more concerns and 88% reporting 4 or more positives. The most common concerns included exams and grades , falling behind with schoolwork , and not seeing friends . In general, girls expressed more concerns than boys . Concerns related to household financial stability were generally more common among those from Black African and Black Caribbean backgrounds and among those in receipt of free school meals. --- Mental health Overall Against a background of high prepandemic levels of mental distress , there was no evidence of an overall increase in the prevalence of mental health problems or in mean SDQ scores or, when modelled longitudinally, within-person change in distresspre to midpandemic . This was also the case for depression, anxiety, and selfharm . However, there was considerable variation around the average of 0 change in SDQ scores, with many reporting marked changes in distressincreases and decreases . --- Mental health Variation in change by demographic group and pre-Covid-19 risks The primary focus in our longitudinal analyses was on modelling variations in within-person change in distress by social group and putative risks to test Hypotheses 2-4 . We found some evidence of variations in withinperson change in distress by demographic group. There was a modest variation by gender, with a small increase in distress among girls , primarily in internalising scores, and a small decrease among boys , primarily in externalising scores. There were no notable variations in changes in overall distress by ethnic group, but there was some evidence of a decrease in externalising scores among some groups . Similarly, there was no evidence of variation overall by receipt or not of free school meals, but there was some evidence of a variation in changes in externalising scores, with a decrease among those in receipt of free school meals and no change among those not in receipt of free school meals (À0.16 [À0.53, 0.21]; p for interaction .069]. When we examined variation in within-person change in distress by pre-Covid-19 mental health problems and several pre-Covid-19 risks, we found: strong evidence of variation by prior mental health problems , with a modest reduction in overall distress, on average, among those with prior problems ; some evidence for variation by household affluence, with, on average, a small decrease in distress among young people from less affluent households prepandemic , mostly reflecting a reduction in externalising scores; no evidence that change in distress, overall or by type, varied notably by the level of other pre-Covid-19 risks . That is, pre-Covid-19 disparities in distress linked to household discord, income, and isolation largely persisted or decreasedbut did not widenin the early phase of the pandemic. --- Mental health By mid-Covid-19 experiences, worries, and positives There was stronger evidence of variations in withinperson change in distress by several midpandemic experiences, withbroadlyincreases among those reporting negative impacts and decreases among those reporting positive impacts . For example, there were notable variations by family relationships, with a marked increase in distress among those who reported that relationships with family were a lot worse than usual and a decrease among those who reported that relationships were a lot better than usual ; p for interaction, .011). These broad patterns were clearer for internalising than externalising scores. Further, there was strong evidence of variation by household financial circumstances, with evidence of an increase in distress, on average, among those who reported household financial problems at T4 , but no change among those who did not . Similar patterns and effects were evident for impacts related to social connections, activities, and routines, that is, around a 1.5 increase in SDQ total scores for the most negative impacts in these domains and around a 1.0 decrease for the most positive impacts. Further, many young people experienced multiple negative impacts. For example, around 30% of the cohort reported 2 or more negative impacts and around 10% 3 or more. Using a simple index counting the number of impacts, we found strong evidence of cumulative effects, such that within-person increases in distress were amplified with each additional adverse effect. That is, for every additional negative impact, within-person change in distress increased by around 0.43 [0.22, 0.65]. Finally, we found that the greater the number of concerns the greater the within-person increase in distress and the greater the number of positives the greater the within-person --- Discussion This is among the most comprehensive studies of the impacts of Covid-19 on the mental health of adolescents from diverse ethnic and social backgrounds in a densely populated inner-city UK sample during the initial period of the pandemic. We found evidence of small variations in changes in mental distress by social group and notable variations in social and economic consequences of the pandemic. Two broad trends emerged. First, mental distress remained high in this cohort and prepandemic disparities in mental distress linked to household discord, income, and isolation largely persistedbut, with some exceptions, did not widen. Second, there was strong evidence of an increase in distress, on average, among those living in challenging circumstances , those directly affected , and those expressing multiple concerns related to impacts of the pandemic. --- Methodological considerations Our findings need to be considered in light of several limitations. Most importantly, we were only able to collect information from around 40% of the young people we sought to include from the REACH cohort . This was what was practically feasible in the period prior to schools reopening, using online methods. This introduces bias . It is also notable, for example, that the prevalence of lifetime self-harm at T4 was slightly lower than at T3 , which may reflect higher attrition among those with higher levels of distress. It is consequently possible that our findings misrepresent the extent of the impacts of the pandemic and underestimate the level of and changes in mental health problems among young people in inner-London and by social and ethnic group. We did have extensive pre-Covid-19 data which allowed us to identify possible sources of bias, analyse predictors of response, and create inverse probability weights, which broadly restored representativeness of the sample on core variables. However, this does not fully address the challenge of potential bias and inverse probability weights may bias standard errors . Caution is therefore still needed in drawing inferences from our findings, especially where effects were modest and given the large number of analyses we conducted. At T1-T3, all questionnaires were administered inclass, on study tablets, with trained researchers present to answer questions. At T4, data were collected remotely. In using a remotely completed selfreport questionnaire, the potential for measurement error and misclassification is high. This limitation is offset, to some extent, by our use of validated measures that have been used extensively in previous epidemiological studies of adolescent mental health . This limitation characterises all Covid-19 research, given the restrictions on face-to-face interviews. In addition, T1-T3 data were collected throughout the academic year . The T4 data included in this analysis were collected during a 4month window . We restricted analyses to this time window because of the importance of producing analyses relevant to the initial stages, and short-term impacts, of the pandemic. This approach was reinforced by feedback from our Young Person Advisory Group, which stressed the importance of capturing impacts at different stages of the pandemic. This noted, it is possible that restriction to this period impacts comparisons with data from T1 to T3. To mitigate this, all regression models were adjusted for the passage of time. Further, our main outcome measure, the SDQ, covers a 6-month period. We would not, therefore, expect this measure of distressand its ability to capture distress during the period of lockdownto be impacted by the precise timing of assessment within a 4-month window of data collection. There are limitations to using predefined cutpoints to indicate high levels of distress, particularly when applying such thresholds to wide age ranges and diverse samples. For example, the SDQ thresholds have been validated for 11-17-year-olds, but notas far as we are awarefor 18-year-olds. In our analyses, we used the established cut-points for 11-17-year-olds because only 8 participants were aged 18 at T4, so it is unlikely that the use of alternative thresholds would have substantively altered overall prevalence estimates. Further, there is some support for measurement invariance of the adolescent self-report SDQ across genders, ages, and ethnic groups in several European countries . However, the evidence is not consistent and the validity of pre-specified thresholds to identify high levels of distress across all groups consequently remains somewhat uncertain. Similarly, the thresholds used to indicate the presence of anxiety on the GAD-7 were developed in older age groups and their appropriateness for younger groups is not clear. It is for these reasons that we focussed our analyses, beyond Hypothesis 1, on continuous SDQ scores. Specifically, we used total difficulties, internalising, and externalising scores, as recommended for community-based samples . In relation to Hypothesis 1, our findings were consistent across a range of measures and for both categorical and continuous scores. For cross-sectional measures at T4 of impacts and experiences related to the pandemic and social restrictions, we cannot rule out the possibility of reverse effects; it is possible that increases in mental distress occurred prior toand therefore influenced reports of concerns and worries. However, given that most worries related to challenges that arose because of the pandemic, this seems implausible and it is more difficult still to argue that increases in young people's mental distress influenced housing problems, household financial problems, and so on. Further, those who were already distressed may have been more inclined to appraise their circumstances negatively, a possibility made more likely by our use of single informants. That said, our use of the same measure and informant across time points meant we were able to assess changes in levels of distress over time, independent of measurement differences that may arise in the use of multiple informants. Finally, it is possible that some findings, for example, modest reductions in distress among those with prior mental health problems, simply reflect regression to the mean. There are several notable strengths of REACH. For example, it comprises a diverse inner-city sample, with large proportions from minority ethnic groups and disadvantaged backgrounds, groups often under-represented in other cohorts. Studies based on national samples may obscure important variations by place and clustered adversities to which some social and ethnic groups are exposed. Indeed, rates of infection, morbidity, and mortality due to Covid-19 have varied widely across the United Kingdom, and by social and ethnic groups. The geographical focus of REACH may limit the extent to which we can generalise to other regions and nationally, but it provides much-needed data about impacts among a more diverse and disadvantaged population. Further, data were collected at multiple and regular time points, including immediately prepandemic, which meant we were able to model within-person change in distress longitudinallythe first study to date in this age group, as far as we are aware, to do so. Trends in mental distress pre-and mid-Covid-19 In line with several other reports, we found that the initial impacts of social restrictions and school closures on daily routines, relationships, and educationand related concerns and perceived positives among young people in inner-London were mixed . It is perhaps not surprising, given this, that we found no evidence of an overall increase in mental distress. These findings broadly align with other, but not all , similarly designed longitudinal studies that have assessed and compared levels of mental distress prepandemic and midpandemic . With the exception of the MHCYP , most studies that report high levels of mental distress among young people midpandemic used different designs, that is of convenience samples, recruited online, with no pre-Covid-19 data for comparison . It is possible, then, that where findings differ between our and other studies it is, in part, because of differences in design. In short, the most robust studies, with pre-Covid data, and that sought to minimise biases due to attrition, are consistent with ours . However, these overall trends mask inequalities; some were clearly impacted more than others. For example, we found a modest increase in distress, mostly internalising problems, among girls, such that prepandemic disparities between girls and boys widened. This is in line with some other reports . It is plausible that school closures and social restrictions have affected boys and girls differently, and those in poorer and more marginalised groups. It may be, for instance, that the areas of life most disruptedthat is, education, peer relationships, family healthare more salient concerns for girls and therefore a greater source of worry. Further, there were some groups that reported, on average, decreases in forms of mental distress. For example, contrary to expectations, we found evidence of a decrease in externalising problems among some ethnic groups and those in low-income households. It may be that these changes reflect normal fluctuations over time. But it is also possible that prior problems were linked to more challenging experiences at school for some groups and for some from low-income households, and thatinitially at leasta period away from school was beneficial. This may also explain our finding that those with mental health problems prior to the pandemic experienced, on average, a decrease in mental distress. It is notable that Widnall et al. in the only other study we are aware of with relevant data in the 6-12 months immediately pre and midpandemicalso found a decrease on average in mental distress among those who reported poor mental health prepandemic . --- Social impacts of Covid-19 and mental distress The strongest impacts on mental healthboth negative and positivewere evident for those variables that captured changes in circumstances and relationships consequent on the pandemic and social restrictions. For example, we found an increase in mental distress among young people who reported challenging household circumstances and negative impacts on social connections, activities, and routines. Several other studies have reported similar findings . For example, in the UK Mental Health of Children and Young People Survey, children with a probable mental disorder were more likely to live in households that had fallen behind with the payment of bills , less likely to spend time with family , and less likely to do physical exercise . Our study strengthens these emerging findings by modelling associations between negative impacts and within-person change in distress over time, controlling for potential confounding by time-invariant factors, and enabling stronger causal inferences. --- Implications Adolescence is an important development stage, during which interconnected biological, psychological, and social processes have long-lasting impacts on subsequent education, work, relationships, and health. Understanding the varying impacts of the Covid-19 pandemic and social restrictions on young people's mental health is consequently important in developing appropriate responses to mitigate these in the most affected groups. Several implications follow. First, the positive experiences that many young people reported, and the benefits of these for their mental health, cast light on aspects of young people's lives that, prepandemic, were sources of stress, anxiety, and unhappiness. These may, in turn, provide valuable pointers for social and education policy as attention shifts to rebuilding society postpandemic. Our findings that the mental health of some in more marginalised and vulnerable groups improved with the closure of schools suggests that, unintentionally, this afforded some protections against harmful expectations and relationships and, as such, reflects poorly on our current education systems. This suggests that more consideration should be given to how we can better support those who find school challenging and, more boldly, to how the education systems can be restructured to mitigate inequalities. Second, the most frequently reported concerns related to educationto concerns about exams, falling behind with schoolwork, and advancing to further education. This is in line with findings from other surveys that suggest the impact of the pandemic on education was a prominent factor in increasing levels of distress among young people . Together, these findings emphasise the importance of mitigating impacts on schooling by, for example, prioritising in-school teaching, providing necessary resources for online learning, and ensuring certainty around format and processes for exams and for grading. Third, the impacts were greatest among those who reported financial hardship, poor housing, worse relationships and isolation, and disruption to routines. Government income and other schemes in the United Kingdom have, undoubtedly, mitigated the impacts of social restrictions and economic recession on the mental health of families and their children, by providing a measure of stability at a time of considerable worry and threat. As such, they point to the potential longer-term benefits of strategies to prevent household poverty and insecurity for the mental health of young people. Further, irrespective of overall changes in mental distress, young people living in households directly impacted by the economic and social consequences of the pandemic are more at risk. Consideration should be given to how these young people can be identified and supportedin non-stigmatising ways by schools and communities to prevent initial, understandable distress from crystallising into longterm, more intractable disorders. In sum, responding to the impacts of the pandemic on the mental health of young people requires social and economic policy, public health strategies, and community-based and school-wide interventions. Finally, our data provide insights that relate to the first period of lockdown in the United Kingdom and elsewhere and it may be that impacts have changed over time. We plan further waves of data collection to capture these impacts. Future research is essential to develop the evidence base to inform effective responses to limit the long-term negative effects of the pandemic on the lives of a generation of young people. --- Data access --- Supporting information Additional supporting information may be found online in the Supporting Information section at the end of the article: Appendix S1. T4 Questionnaire. Appendix S2. Missing Data. Table S1. Comparing those who completed T4 questionnaire with those who did not Table S2. Sample characteristics of T4 sample compared with full REACH cohort and target population Table S3. Social circumstances, relationships, and routines mid-covid-19 Table S4. Reported worries or concerns . Table S5. Reported positives . Table S6. Weighted prevalence estimates and 95% confidence intervals of depression, anxiety, and lifetime self-harm pre-and mid-covid-19 Table S7. Social circumstances and experiences precovid-19 . Table S8. Fixed effects regression models: withinperson change pre-covid to mid-covid, overall, and by demographic group and select pre-Covid-19 risks, adjusted for age and passage of time Table S9. Fixed effects regression models: withinperson change pre-covid to mid-covid, by mid-Covid-19 circumstances, experiences, and routines, adjusted for age and passage of time Figure S1. Weighted prevalence estimates and 95% confidence intervals of depression, anxiety, and lifetime self-harm at each time point.

Background: Adolescence is a critical period for social and emotional development. We sought to examine the impacts of Covid-19 and related social restrictions and school closures on adolescent mental health, particularly among disadvantaged, marginalised, and vulnerable groups. Methods: We analysed four waves of data -3 pre- Covid-19 (2016Covid-19 ( -2019) ) and 1 mid-Covid-19 (May-Aug 2020; n, 1074; 12-18 years old, >80% minority ethnic groups, 25% free school meals) from REACH (Resilience, Ethnicity, and AdolesCent Mental Health), an adolescent cohort based in inner-London, United Kingdom. Mental health was assessed using validated measures at each time point. We estimated temporal trends in mental distress and examined variations in changes in distress, pre-to mid-Covid-19, by social group, and by pre-and mid-pandemic risks. Results: We found no evidence of an overall increase in mental distress midpandemic (15.9%, 95% CI: 13.0, 19.4) compared with prepandemic (around 18%). However, there were variations in changes in mental distress by subgroups. There were modest variations by social group and by pre-Covid risks (e.g., a small increase in distress among girls (b [unstandardised beta coefficient] 0.42 [À0.19, 1.03]); a small decrease among boys (b À 0.59 [À1.37, 0.19]); p for interaction .007). The most notable variations were by midpandemic risks: that is, broadly, increases in distress among those reporting negative circumstances and impacts (e.g., in finances, housing, social support and relationships, and daily routines) and decreases in distress among those reporting positive impacts. Conclusions: We found strong evidence that mental distress increased among young people who were most negatively impacted by Covid-19 and by related social restrictions during the first lockdown in the United Kingdom.

INTRODUCTION As the coronavirus outbreak has spread across the globe, it has had massive social and economic consequences and led to sudden lifestyle changes in the form of social or physical distancing . College campuses worldwide have been significantly impacted by the pandemic, as most governments have temporarily closed colleges and universities in an attempt to contain the spread of COVID-19. College students have had to rearrange their daily lives and have been exposed to a completely new campus environment, with a wide variety of modalities being tried across countries. Meanwhile, the pandemic has posed an existential threat to college students' mental health. An environmental change can result in mental health issues in vulnerable people when environmental stress affects their mood, thinking and behavior. The COVID-19 pandemic, which has disrupted daily life for people worldwide, may put people at greater risk for mental health challenges. Global pandemics cause emotional and health issues, and neuropsychiatric consequences for both infected patients and non-infected individuals . Studies have identified psychiatric symptoms such as anxiety, stress disorders, and depressive symptoms as consequences of a viral pandemic . For example, during the SARS outbreak in Hong Kong, most people felt anxious and changed their social behaviors . Amid the COVID-19 crisis, symptoms of mental health conditions have become a growing concern, and college student populations are not an exception . Lockdowns and outbreaks occurring on college campuses may lead to a lack of social support, social and physical isolation, and the disruption of daily routines and activities, increasing college students' mental health problems. According to the results of the Healthy Minds Study survey , mental health conditions have affected college students' rates of stress and depression since the start of the pandemic. The report highlighted that over 50% of American college students were concerned about being infected by COVID-19, and nearly 90% were worried about their personal safety and security. Students also expressed a lower level of psychological well-being than they had prior to the outbreak of the virus . New research is investigating the effects of COVID-19 on students' mental health, focusing on different country contexts. In terms of its impact on higher education, COVID-19 has triggered unfavorable mental health outcomes for college students. Studies from different countries have indicated that college students need more support or interventions to cope with stress and uncertainty during the pandemic. Huckins et al. points out that American college students have decreased their physical activity and are going to fewer places while reporting an increase in anxiety and depression symptoms. Focusing on Bangladeshi students, Khan et al. identify stress, anxiety, and depression as common symptoms among college students, with fear of COVID-19 infection as the main causal factor. In addition, studies of Chinese college students indicate that students are worried about their academic delay, negative economic consequences, and routines and activities of daily life . However, no studies to date have shown how COVID-19 affects college students' lifestyles and mental health conditions from a comparative perspective, especially in Asia. This study attempts to compare the impacts of the COVID-19 pandemic on college students' lifestyles and mental health conditions in South Korea and Taiwan. The hypothesis of this study is that students' experiences may vary based on how different institutions and countries have reacted to the pandemic. Therefore, considering the new circumstances created by the COVID-19 crisis and the different policy responses to the pandemic in South Korea and Taiwan, the study aims to understand how lifestyle changes have impacted students' mental health in Korea and Taiwan during the COVID-19 pandemic. Using data collected from college students in both countries, this study explores differences and similarities across the following three aspects of their experience in relation to the threat of COVID-19. First, we investigate whether students in the two countries face different issues related to mental health. Second, we examine whether students in the two countries have different patterns of lifestyle changes. Third, we examine whether the extent of lifestyle changes contributes to the mental health of college students in the two countries. In doing so, the study tries to examine the different scenes on college campuses and compare the unintended consequences of the pandemic for college students' lives in the selected countries from a comparative perspective. --- POLICY RESPONSES TO COVID-19 IN KOREA AND TAIWAN Until last August, both South Korea and Taiwan were among the few countries that had demonstrated success in curtailing the spread of the virus by adopting necessary measures to mitigate the impact of subsequent outbreaks . Capitalizing on their prior experience with SARS in 2002-2003 and MERS in 2015, both countries exhibited robust and consistent standard operating procedures . The governments' decisive actions early in the crisis achieved favorable outcomes, flattening the curve in both countries . More recently, the early gains in South Korea have given way to alarm as the country has faced an unstoppable wave of infections . Taiwan took aggressive action to combat the outbreak as soon as the WHO reported the existence of a virus of unknown cause in Wuhan, China. Taiwan immediately closed off all travel from China, activated its Central Epidemic Command Center, began screening arrivals, and deployed detailed contact tracing, even before the World Health Organization advised such a step . The Entry Quarantine System was also launched, requiring travelers to complete a health declaration detailing their travel histories, specific symptoms, and health evaluations . Travelers were mandated to complete a 14day home quarantine, which included self-isolation without going out or having visitors and recording temperature twice a day . Travel restrictions were implemented, and only those foreigners holding Alien Resident Certificates were allowed into the country . Finally, the government disseminated a health promotion message recommending handwashing routines and mask-wearing in crowded or enclosed places . In South Korea, the situation was more challenging, as the country reported the second-highest number of confirmed cases of the virus after China between January and February when a cluster of cases was identified in Daegu, a city of ∼2.5 million . After this peak, the number of confirmed cases declined rapidly, although occasional minor resurgences continued to occur. Korea's response to COVID-19 was seen as successful, as it was one of the first countries to quickly flatten the curve. Korea managed to mitigate the pandemic by implementing widespread testing, contact tracing, and quarantines for all positive patients . Beginning in the early stages of the major outbreak, the government collaborated with the scientific community and directed companies to produce a diagnostic reagent. In April, Korea expanded its testing capacity to provide an average of 15,000 diagnostic tests per day . However, the virus spread through local communities, increasing the chances that the virus would spread over a wider part of the country, and the government announced that Level 2 social distancing, the second highest tier in a three-tier system, would be implemented in the capital area beginning in August 2020 . The Korean government also adopted a nationwide contacttracing program that combined traditional shoe-leather epidemiology with new methods that make efficient use of technology and large databases . People identified as having had contact with confirmed or suspected cases were asked to self-quarantine at home or in designated facilities, and as in Taiwan, mandatory 14day quarantines were required for all travelers entering the country . --- HIGHER EDUCATION RESPONSES TO COVID-19 IN KOREA AND TAIWAN In response to the COVID-19 outbreak, Korea and Taiwan moved quickly to order their populations to stay at home, practice handwashing, engage in social distancing, and wear masks in public settings . Given this situation resulting from the global pandemic, college students have experienced a "new normal" in the higher education environment. The International Association of Universities survey report on the impact of COVID-19 on higher education institution highlighted that one of the key challenges encountered by HEIs was the sudden shift to distance learning . The results of the report revealed that over 50% of HEIs across the globe made transitions from classroom teaching to distance learning. The rate of change varied by region, e.g., 85% in Europe, 72% in the Americas, and 60% in Asia. HEIs in different regions explored various formats for learning; some colleges and universities continued face-to-face learning, some explored blended or hybrid learning, and some went primarily online with some in-person courses or went fully online with no students on campus . Colleges and universities in Korea and Taiwan took proactive actions, implementing different levels of restrictions to secure the safety of students. For example, college students in South Korea were temporarily restricted from campus facilities, and all courses switched to an online format in the spring of 2020. As remote learning became prevalent on campuses, the frequency of face-toface interactions with peers and faculty decreased tremendously for Korean college students. Taiwan, on the other hand, was one of the few countries in which campuses remained in session, due to the virus appearing to be under control. In Taiwan, the government established guidelines to secure the safety of students and staff, while colleges and universities remained open during the spring of 2020. Taiwanese students were required to wear a facemask, maintain social distancing in the classroom, and check their body temperature on a daily basis. The guidelines, including measures of self-management of health, quarantine, and regulations on school assemblies, also reduced opportunities for interacting with peers and faculty among Taiwanese college students . As campus lockdown restricted opportunities for socialization and interaction among students and faculty on campus, college students' mental health became a special challenge during COVID-19 . Previous studies have pointed out that the campus environment is where socialization occurs, and also where students gain knowledge, integrate skills, and develop the capacity to cope with challenges in society . The new normal of non-face-to-face learning on campuses has limited college students' opportunities for physical interaction with peers and faculty. Thus, the pandemic had the unintended consequences of decreasing college students' opportunities to develop their capacities and resilience , causing an existential threat to their mental health. To better understand the ways that COVID-19 has impacted college students' lifestyles, the following research questions were asked: Research --- PARTICIPANTS AND METHODS --- --- Measures Three aspects of mental health were assessed in the study, including "worry, " "risk of contact, " and "happiness." These three measures reflect key aspects of mental health, and have often been used in studies to determine mental health conditions during a pandemic . To measure the first indicator "worry, " we asked students "On a scale from 0 to 10, please rate how worried you are about COVID-19." The second variable, "risk of contact" was assessed using the question, "On a scale from 0 to 10, please rate the possibility of contacting with a person known to have COVID-19." The third question measured happiness using a 4point Likert scale that asked, "How would you say things are these days-would you say that you are not at all happy, not too happy, fairly happy, or very happy?" All three variables were treated as continuous in the analysis. Seven measures of lifestyle change adapted from the existing literature were assessed to understand how COVID-19 changed students' lifestyles . Students were asked, "Compared to before the COVID-19 outbreak, how has your lifestyle changed?" with regard to seven aspects of lifestyle, including traveling, spending time with friends, eating at restaurants, getting restaurant takeout, getting food delivered, having part-time jobs, and shopping online. The response options used a 5-point scale to allow the individual to express the change in frequency of each event. The scale responses were "decreased a lot, " "decreased a little, " "no change, " "increased a little, " or "increased a lot." All measures were treated as continuous variables indicating the frequency of lifestyle changes. The questionnaire also collected data on sociodemographic characteristics, including gender, college major, parental education level, and living arrangements. --- Statistical Analysis To analyze the effects of lifestyle changes on students' mental health during COVID-19, we conducted the following three analyses. First, descriptive statistics of the key variables of the analytic sample were provided. Second, a t-test was used to examine whether the main items were significantly different between South Korea and Taiwan. Third, regression analyses were performed to examine the association between lifestyle changes and three aspects of mental health. All statistical regressions controlled for gender, parental educational level, college major, and living arrangement. For the Taiwanese data, <1% of cases were missing, and listwise deletion was applied in the analysis. The Korean sample included no missing values. All analyses were conducted using Stata/MP16.1. were more worried about COVID-19 than Taiwanese college students were . Additionally, the mean response for the possibility of having contact with someone with COVID-19 was 5.60 ± 2.36 in South Korea, but it was 3.05 ± 2.02 in Taiwan. Finally, the mean happiness score was 2.67 ± 0.78, compared to 2.89 ± 0.60 in Taiwan. The results from the t-test also indicated that South Korean college students presented a relatively higher level of mental health concerns than Taiwanese college students did. To visualize differences in mean scores between the two selected countries with regard to the main outcome variables used in the study, Figure 1 presents information for each item. --- RESULTS --- Mental Health During COVID-19 --- Lifestyle Changes During COVID-19 To investigate the different patterns of lifestyle changes, the survey questions inquired about college students' daily experiences during the COVID-19 lockdown. The two countries presented variations in their lifestyle changes resulting from the COVID-19 pandemic . Compared to Taiwanese students, South Korean college students significantly decreased their frequency of traveling , spending time with friends , eating at restaurants , and working part-time . Additionally, the results from the t-test indicated an increased frequency of food delivery and online shopping in South Korea compared to Taiwan . --- Effects of Lifestyle Changes on Mental Health To examine the relationship between lifestyle changes and three aspects of mental health, multiple regression analyses were conducted while controlling for gender, parental education level, living arrangement, and college major. For South Korea, age was also included as a control variable, since the data sample included undergraduates between 19 and 29. The age distribution of undergraduates ranged between 19 and 29 in the sample because in South Korea, the majority of college-aged male citizens are required to serve at least 21 months in the military, choosing whether they will suspend their undergraduate work during their years in college or take off immediately after graduation to serve in the army. To assess the robustness of the findings, this study conducted a series of sensitivity analyses for Korean sample using senior college students only and also performed sets of analyses without controlling for age in each model. The overall results were similar to those based on primary analyses. The results of each model are reported in Table 2. First, standard multiple regression analyses were performed to investigate the effects of lifestyle changes on worry during COVID-19 . The results show that among South Korean college students, an increasing frequency of spending time with friends and working part-time was negatively correlated with being worried about COVID-19. In other words, when students had a higher level of worrying about COVID-19, they were more likely to decrease the time they spent with friends and engaged in part-time employment. Additionally, an increased frequency of online shopping was positively correlated with being worried about COVID-19. Students who were more worried about COVID-19 were more likely to go shopping online. Among Taiwanese college students, the pattern of part-time jobs was similar to that of South Korean college students, reflecting the negative relationship between part-time employment and being worried about COVID-19. The results of Taiwanese college students also presented a positive correlation between getting restaurant takeout and worrying about COVID-19. Students who were more worried about COVID-19 increased their frequency of getting restaurant takeout. Second, we investigated the relationship between college students' lifestyle changes and their risk of contact with someone who has COVID-19, as demonstrated in Table 2. In Korea, the increasing frequency of spending time with friends and working part-time was negatively correlated with the self-reported risk of having contact with someone who has COVID-19. College students in Korea considered spending time with friends and working part-time to decrease the possibility of contracting COVID-19. However, Taiwanese college students presented different patterns. In Taiwan, the increasing frequency of online shopping was positively correlated with a self-reported risk of contact with someone who has COVID-19. Since the result indicated a relation and not causality, reverse causality existed between online shopping and the risk of contact with someone who has COVID-19. Taiwanese college students who reported a higher risk of contact with someone who has COVID-19 may go shopping online more often. Third, the results predicting life changes and happiness indicated different patterns in both South Korea and Taiwan . In South Korea, the increasing frequency of spending time with friends and getting restaurant takeout was positively correlated with happiness, but food delivery was negatively correlated with happiness. During the COVID-19 pandemic, spending time with friends increased happiness among South Korean college students, reflecting the important role of social support from peers. The positive relationship between restaurant takeout and happiness also indicated the importance of having contact with other people during the COVID-19 pandemic in South Korea. In Taiwan, the increasing frequency of working part-time was positively correlated with happiness, reflecting that part-time employment increased levels of happiness as well as reflected the importance of interacting with other people during the COVID-19 pandemic. Finally, statistically non-significant relationships between college students' lifestyles and mental health conditions were also presented in Table 2. The non-significant findings indicated the various role of life changes in predicting different aspects of mental health conditions in both South Korea and Taiwan. For example, both traveling and eating at restaurants were statistically non-significant with mental health conditions . Getting restaurant takeout was statistically non-significant with the possibility of contracting COVID-19. The frequency of food delivery was statistically nonsignificant with both worry and risk of contact. The frequency of online shopping may not increase college students' happiness, since the relationship between online shopping and happiness was statistically non-significant. --- DISCUSSION AND CONCLUSION The purpose of the study was to examine the correlation between lifestyle changes and mental health among college students in South Korea and Taiwan during the COVID-19 pandemic. HEIs have been significantly disrupted, with millions of students around the world studying remotely due to campus closures . There is no clarity as to how COVID-19 will impact the overall operations of HEIs in upcoming semesters; however, what we clearly know is that this pandemic has produced some unexpected changes in the higher education community. In this regard, it is necessary to understand emerging patterns of lifestyle changes caused by the pandemic and college students' responses to their new experiences and mental health consequences of COVID-19. The main findings of the study are as follows. First, we explored whether lifestyles changed among college students confronting a "new normal" in the two selected countries given the serious global health threat caused by the COVID-19 pandemic. College students in South Korea indicated a decrease in traveling, spending time with friends, eating at restaurants, and part-time employment, and an increase in food delivery and online shopping compared to college students in Taiwan. During the pandemic, Korean students significantly decreased their daily activities, as did many in other countries, while students in Taiwan experienced less lifestyle change . Second, we examined different patterns of mental health among students in the two countries. Similar to findings from Bangladesh, China, and the U.S. , college students in South Korea reported a higher level of worry, a higher possibility of having had contact with someone with COVID-19, and a lower level of happiness than before the pandemic. However, Taiwanese college students presented a different pattern, with a higher level of happiness than the South Korean students. A possible explanation could be that students in South Korea were temporarily restricted from campus facilities, while campuses remained open in Taiwan as the pandemic was under greater control there . Since campus lockdown restricted the opportunities for socialization and interaction on campus in South Korea , college students there may have struggled with mental health problems, feeling unsafe and anxious during COVID-19 . The results from South Korea indicate that environmental changes such as those that occurred during the global pandemic can cause emotional and health issues even among non-infected individuals . Third, we discovered how different levels of lifestyle change have contributed to the mental health of college students in the two countries. The results indicated that social activities, including spending time with friends, were positively correlated with mental health in South Korea and Taiwan. The positive correlation between mental health and social activities in both South Korea and Taiwan confirmed the important role of the campus environment in developing students' capacity to cope with challenges in society . College students in South Korea who increased the frequency of time spent with friends were less worried about COVID-19, reported a lower possibility of having had contact with a person known to have COVID-19, and indicated a higher level of happiness. College students in Taiwan were less worried about COVID-19 if they increased the frequency of part-time employment. In this study, we tried to investigate the unintended consequences of COVID-19 on college students' lives, assuming that their experiences might vary based on how different institutions and countries have reacted to the pandemic. There were different patterns of policy and institutional responses to COVID-19 among HEI in South Korea and Taiwan . College students in Korea were required to stay at home, take online courses, or maintain social distancing during the pandemic, while students in Taiwan remained onsite with safety measures implemented on campus. Given the increase in confirmed COVID-19 cases and use of online teaching platforms in South Korea , this may be the main factor explaining why Korean college students experienced more disruption of their daily routines and more mental health issues than Taiwanese college students. Finally, since both countries implemented a series of policy/program actions in response to the virus , college students in both South Korea and Taiwan decreased the frequency of daily activities and had fewer opportunities for socialization and interaction with peers and faculty under the new circumstances created by the COVID-19 crisis. As the number of confirmed cases has continued to increase, governments and HEIs have taken more aggressive actions against the COVID-19 pandemic, including year-long campus lockdowns, temporary closures, and virtual learning formats . Campus lockdowns and online learning formats are aimed at reducing the possibility of physical contact during the pandemic; however, college students are receiving less emotional and social support from peers and colleagues who are self-isolating at the same time. This study highlights the positive relationship between social support and interaction with friends and mental health conditions. In line with previous studies that specified the importance of perceived social support in reducing mental health problems , our findings shed light on the importance of social and institutional support for college students in reducing the incidence and prevalence of some mental disorders during the pandemic, and suggest that more interventions and support from policy/program perspectives are needed. The comparison between South Korea and Taiwan with respect to college students' mental health can benefit administration officials and policymakers as they implement policies and practices addressing the aftermath of the pandemic. Governments and HEIs across countries need more empirical evidence to balance safety and learning for college students. We suggest that governments and HEIs organize social support activities through online or hybrid formats, since students' mental health is more vulnerable during COVID-19. Various social activities and forms of social support benefit the learning development and mental health among college students. Along with these contributions, some limitations exist in our study. Considering the time constraints and data availability, the study was limited to two institutions from each of the selected countries. The results should be cautious while generalizing to the entire population in the selected countries. More research is needed in this unprecedented time to share insightful implications from various country contexts; empirical studies with nationally representative longitudinal datasets are also needed to support college students in maintaining their academic path in a safe manner. --- DATA AVAILABILITY STATEMENT The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation. --- ETHICS STATEMENT Ethical review and approval was not required for the study on human participants in accordance with the local legislation and institutional requirements. Written informed consent for participation was not required for this study in accordance with the national legislation and the institutional requirements. --- --- 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.

This study attempts to compare the impacts of the coronavirus (COVID-19) pandemic on college students' lifestyles and mental health conditions in South Korea and Taiwan. As the COVID-19 outbreak has spread across the globe, it has brought significant changes to college campuses worldwide. College students have been heavily affected by the closure, as online learning has become increasingly common in higher education institutions. Using data collected from college students in South Korea and Taiwan in the spring of 2020, this study examines the effects of pandemic-related lifestyle changes on mental health conditions for college students in the two countries. The results were 3-fold. First, compared to college students in Taiwan, college students in South Korea reported greater decreases in time spent traveling, being with friends, eating at restaurants, and engaging in part-time employment, and greater increases in online shopping and ordering food for delivery. Second, college students in South Korea reported a higher level of worry, a greater possibility of contact with a person with COVID-19, and a lower level of happiness than did college students in Taiwan. Third, our findings indicate that social activities, including spending time with friends, were positively correlated with mental health conditions in South Korea and Taiwan. Comparing Korean and Taiwanese students' lifestyle changes and mental health conditions amid the pandemic, the study argues that the decrease in socialization and interaction under these new circumstances may be a significant factor that explains an increase in mental health issues in Korean college students compared to Taiwanese students, given the increase in confirmed COVID-19 cases in South Korea and the corresponding greater use of online teaching platforms there than in Taiwan.

INTRODUCTION There is the term "women's nature", which seems to become a term that places women in certain stratification in society, especially in domestic matters. Taking care of and educating children, preparing food, serving the husband and other household domestic affairs is the responsibility of the wife. This generally proves that there has been a mistake in the understanding in society about what is called gender. Social and cultural construction actually makes it considered as nature. Many households apply the system . This is in parallel with the opinion of Putri and Lestari who stated that in Javanese culture there are many terms that position of women is lower than men's both in the public sector and in the household. The term describing the role of the wife in the domestic sector is kanca wingking, namely as a friend in managing household affairs, especially children's affairs, cooking, washing and others, or more commonly known as cook, macak, manak or what is often referred to as 3M. Apart from that, other terms attached to a woman or wives are kitchen, pupur, mattress and well. This term describes the domestic role that must be carried out by a woman or wife, namely taking care of all matters related to the household such as cooking, washing clothes, doing dishes, cleaning the house to caring for children . In the Sasak community in NTB, the kinship system adheres to a patrilineal system. The patriarchal culture that is still inherent in society makes awareness of the importance of education very low, especially for girls who are the priority in accessing education are boys . The spread of poverty was caused by a lack of resources and women's unproductivity, so it was very urgent to create a conducive climate for programs that were oriented towards increasing income for women. Another opinion also states that the failure of development programs is the exclusion of women . This kind of perspective is not only visible in the pattern of social relations, but also in the scope of the household, and the sphere of life which is private and principled. The patriarchal order causes women to be subordinated, marginalized, and even obtained injustice in society. Social position and role cannot be separated from the influence of a person's gender identity. Men and women will have different roles and social positions in society . According to Sakina and A., several social problems are caused by patriarchal culture, namely Domestic Violence , sexual harassment, early marriage, and stigma regarding divorce, which are often filed by wives . Based on the previous research, Islamic teachings that every woman and man is given similar opportunity in all respects but none of which specifically discusses the culture of sibaliparri between husband and wife in households from various types of work. Therefore this research will discuss the culture of Mandar society related to sibaliparri which does not question one's ethnic background in building a household life. This is because the most important thing is how to build a good cooperative relationship, as the quote goes, "muaq meloqo maqita tobaine, itai tabaine yes mala disiolang sibaliparri" . So that, the involvement of women in earning a living by certain cultures may be seen as something taboo, less elegant and inappropriate, but in the context of Mandar culture, this is considered as something normal and even considered honorable . Adhering to this last analysis, a collaborative effort between husband and wife is needed, especially in forming a healthy and prosperous family. This research was built based on the assumption that sibaliparri is one of the manifestations of the creativity, taste and initiative of the Mandar people. Sibaliparri in the culture of the Mandar people creates a harmony in household life because this culture proves that each partner loves and cares for each other. Thus, patriarchy does not become a hereditary culture. Things which can be a conflict in terms of inequality between women and men should be abandoned because apart from being against human rights, it is also against Islamic law. --- LITERATURE REVIEW Nature comes from the Arabic word "qudrah" which means provision, power or measure. Literally, nature means fitrah kodrati, which is unique, original and natural. The Qur'ān mentions nature in an essential sense, such as: term maḥīḍ, ḥaml and murḍi'ah also mentions the dimensions of natural meaning in an empirical sense, such as fiṭrah-fiṭratullāh "creating humans according to their nature. When the word nature is combined with the word woman, it can be formulated as the qualities inherent in a woman's body such as menstruation, pregnancy, childbirth and breastfeeding. These qualities form the essential formula of women's nature . According to Luttle , gender is very different in the sense of "sex" which is used to identify the differences between men and women anatomically and biologically, and this is something that is brought from birth. Therefore it is more natural and unchangeable. The biological reality that differentiates the two sexes has given rise to two major theories; the first is the nature theory, in which the social roles of men and women are determined by biological factors. These biological differences are used as the basis for determining the social roles between men and women in society. Both nurture theories are opinions which state that the differences in roles between men and women are determined more by cultural factors. This theory concludes that psychological differences between men and women are created through a learning process from the environment. In general, this theory is widely supported by feminists, which later in its development gave birth to various theories, such as liberal, radical and socialist feminist theories . The nature of women in the empirical sense is a cultural value. Values mean beliefs about ideal behavior and expected goals shared by members of a culture. In cultural values, shared ideas about the role and position of women are seen at various levels in terms of expectations, values and social civility. The nature of women is used to rank the role and position of women where certain values embedded in these values influence people's minds. Therefore, women's nature as a cultural value has authority. This authority is impersonal and influences people's choices and social systems develop and change, because it influences people's thoughts, so women's nature can also be called a norm because it consists of cultural rules that link human actions or forms with praise and sanctions. Like other norms, women's nature also has an influence on rules of behavior and appearance. The relationship between natural perception and a person's actions creates territories, namely areas that are suitable to nature and areas that are considered less or not suitable to nature . --- METHOD This research used descriptive-qualitative research which only described the study of fiqh and the culture of the Mandar people. Likewise, data collection was carried out through several stages, namely Observation, which was a method to clearly know what happened to the object under study so that it was expected to get as many facts as possible on the problem under study. Observations were made at several places or areas in Majene; Interviews, in which the data were collected from research subjects on a problem and they were carried out through a free-questioning technique based on an object to obtain more indepth information. Interviews were conducted by questioning some lecturers, humanists, civil servants, honorary workers, fishermen and farmers who applied sibaliparri in their household life; Documentation, collecting documentary data through literature studies, journals, magazines, newspapers and others related to problem to be researched. Data analysis techniques were carried out through data reduction, carried out by making summaries, tracing themes and compiling complete and detailed reports about sibaliparri, Data presenting through conveying information based on data obtained from several families who applying sibaliparri, Data verification which were obtained and supported by valid evidence. --- FINDINGS AND DISCUSSION --- Sibaliparri in the Culture of Mandar Community The concept of sibaliparri originated from the household concept of Mandar community. Mandar women are loyal and good at placing themselves wherever they are. For example, if the husband climbs the coconut, the wife makes oil for her own use or sells it to support the family income. Along with the times, the concept of sibaliparri has expanded its meaning from family domestic life to become a social concept. This is demonstrated by the Mandar community through the use of the term sibaliparri which implies mutual cooperation in social and economic life . Defining that sibaliparri as a concept and system of Mandar cultural values means the husband's concern for his wife, especially in earning a living as a way to maintain the integrity of the household. Sibaliparri also means community concern for various social activities, especially community concern for development in the region. Sibaliparri as a cultural value system can be found in various Mandar community activities. For example, making a living, marriage ceremonies, death ceremonies are accompanied by symbolic meanings in the cultural processions adopted by the Mandar people . RH, explained that "sibaliparri originated from the Mandar fishing community. When the husband goes fishing, the catch is sold by the wife to meet the needs of the family". . In the Mandar community, there are certain times when there are no men in several villages in Mandar. This is because men from the community go to sea to catch fish. In certain seasons the courtiers coordinate sawi to catch certain types of fish. During the dry season, Mandar fishermen who are in coastal areas catch fish in the Mandar Bay. Historical evidence shows that the Mandar people are skilled sailors who make the sea as a source of life. In general, the people of Mandar live from the sea because the land is not fertile. Residential settlements were built directly facing the open sea. This is what makes the Mandar people as sailors, both as inter-island traders and as fishermen . --- The Implementation of Sibaliparri Values in the Culture of Mandar Community SY conveys, "The implementation of sibaliparri values in the household life of the Mandar community can be in the form of mutual understanding, mutual love, mutual cooperation, and sincerity. For example, when the wife gives birth, the husband takes over the work of washing, cooking, cleaning the house and so on". . In the Mandar fishing community which supports gender equality relations, the characteristics and social roles attached to men and women are exchanged in many ways by the individuals concerned. When connected with gender awareness, it is very strongly imprinted in the relationship between husband and wife where these cultural values do not strictly divide the division of roles between men and women. In the life of a fisherman's family in Kenje Polewali Mandar Village, a father as the head of the family is not fully responsible for meeting the economic needs of the family, but a wife as a housewife also plays a role in fulfilling the family's economy. The wife helps her husband, and vice versa. In principle, cooperation is created on the basis of equal partnerships . The basic assumption of the existence of gender equality relations in this field is that; First, patriarchies, which is used as a justification for men's power over women for most members of society, is not very visible in the families of Mandar fishermen. Second, dominations of men in the family do not always place women in dual roles, but the roles of husband and wife are carried out alternately. The position of men can replace the role of women and the position of women can replace the role of men . Sibaliparri values related to family welfare are reflected in various fields, namely: 1. Education In the context of household life in Mandar, the first education proclaimed was akhlak and morality, especially in early childhood. Parents educate their children to have noble ethics. Ethics education in question is good speech and noble attitude and action . These two norms are very principled things in Mandar, because they are also a marker of one's humanity. As the saying goes, loa anna kedodi tu'tia mappannassa atauang . Because of the importance of this ethical education, it is also illustrated in a pair that reads "Palakalaqbi to tondodaiqmu, pakarayai sippatummu, asayanggi to tondonaumu" which means, respect your elders, cherish your peers, and love those below you . Another education is that children are taught to recite in people's homes or to certain people called annangguru . Worshiping according to Islamic teachings and getting along according to good manners are subjects that are taught directly while how to make a living, how to master a boat, catch fish and others are skills given to children who will grow up . --- Economy of Household The Mandar community is notoriously hard worker. This can be proven by Mandar men who dare to cross obstacles in the middle of the ocean. Likewise, farming communities go in the morning and return in the afternoon to make a living in the fields. The faithful women are waiting for their husbands to return home from the garden or sea. Wives who wait at home do various activities, such as weaving silk cloth , selling fish , and raising livestock and so on . This is in line with the opinion of SY who said "the Mandar tribe is different from others if the husband is gardening, the wife also participates in gardening. Husbands and wives are responsible for the household economy. This is in Mandar language is called sibaliparri". . According to D, "sibaliparri is equality between husband and wife who both play an important role in the family. If I go out to sea and get fish, my wife will go to the market to sell the fish. When my wife goes to sell, I do housework, help the wife to prepare lunch and take care of the children". . Sibaliparri culture can easily be discovered, every morning in Majene bay dozens of women waiting for Pajala come from the sea carrying fish. Every afternoon some women struggle shovels digging sand in the Mandar River. Every morning the main road in Tinambung village is crossed by women carrying dozens of jerry cans to the source of drinking water. This is an example that they are struggling to help their husbands . The participation of the wife to make a living does not make family relationships fractured even it makes the household stronger. AH comments "Within our family there are several ways of maintaining a household. For example, it is not easy to get emotional or angry, if there is a problem resolved properly, understand each other with the work and income of the partner. We also help each other at harvest time, my wife helps harvest chilies and vice versa, I also help my wife take care of other household matters". . When viewed from the various kinds of jobs in Mandar, it shows that Mandar women can have a good career outside the home to help their husbands earn a living. It even has the support of the husband. DA said "a wife has a job outside the home is very helpful in domestic life. When my husband is at home, he also helps with household chores". . Ali said that when the husband as the main breadwinner, it means that he took all responsibilities for his family. So it is natural for the wife to obey her husband and be able to take care of her household properly. Another case if the wife also works, especially because she wants to feel at ease the burden of the husband to support the household, achieve greater profits, of course, a husband must understand his wife's condition by sharing household chores. If the wife's work is due to the condition of the husband who is sick so that he cannot carry out his obligation to earn a living, of course this is a good thing for the wife because she wants to help and replace the obligation to earn a living therefore the house life must go on without divorce . --- Decision Making Household life is often faced with problems that require solutions or decisionmaking related to family members. The decision is taken by mutual agreement. One form of equal partnership between men and women is the involvement of women in formulating policies or decision making in the implementation of activities both in the household environment and in development . M conveyed, "Sibaliparri in the household is not only about economic problems, but various things, including communication, especially when deciding something or making decisions. My husband and I often discuss important matters, such as children's education, household needs and others". . --- Religious Life The Mandar people on the coast are entirely Muslim. Mosques and mushalla are places of worship such as five daily prayers, educational facilities and places to hold religious events. On Fridays all men go to the mosque to perform Friday prayers. In Ramadan men and women flock to mosques to perform taraweeh prayers. This is also done during Eid al-Fitr and Eid al-Adha, where they flock to the mosque to pray. Religious life motivates the Mandar community to revive cooperation, strengthen kinship, respect, respect and harmonization in religious and community life . --- Health In general, the houses of fishermen and farmers in Mandar are houses on stilts that have good air ventilation. The majority of the population has wells to be used for bathing, washing and others, except for people who are close to the sea or ponds that do not have wells because they depend on the state of the water and not all of them have toilets. So that the beachfront, pond edge and river areas are still polluted with odors that are not fresh because there are still few people who make the place as a place to defecate. During fajr, evening, and isya it can be seen people visits the well, especially women. They are with various needs such as washing or fetching water by carrying, while men bathe more outside and only occasionally they bathe with fresh water after bathing with sea water . --- Sibaliparri in a Review of Islamic Law The core teachings of every religion, especially Islam, advocate and uphold the principle of justice. The Qur'an is a principle and guideline on justice that includes various recommendations for upholding economic, cultural politic and gender justice . Though gender can be interchangeable each other, gender can change and differ from time to time in one region and another. Therefore, a person's identification using a gender perspective is not universal. A person with the male sex may be maternal and gentle so that it is also possible for him to do housework and other jobs that have been considered as women's work. On the contrary, someone with the female gender can be strong, big, and smart also can do jobs that have been considered masculine and considered as the territory of men . Islam gives a high place to women. This is evidenced by the surah in the Qur'an which is given a female name . Several other surahs discuss women from various angles and give a positive appreciation of women. For example, the Qur'an condemns the actions of pre-Islamic Arabs who looked down on women and even considered them a burden like in Q.S An-Nahl: 58-59. Broadly speaking, the Qur'an wants women not to be made complementary beings and to be second only to men. The Qur'an clearly gives instructions that all human beings are viewed equally and are not differentiated according to gender but who distinguish the degree of faithfulness and piety, as Allah says. Al-Hujurat: 13. This verse contains issues of pluralism in the form of cultural diversity such as gender, race, ethnicity, nation, etc. in order to create civilization on earth. So among all this diversity, the most noble in the sight of Allah is the pious one. According to Hamka, in his tafsir al-Azhar, it is explained that women and men who always bend down to Allah and His Messenger, disobey and do not deny an order. Women and men, who are honest, admit their mistakes and defend the truth, women and men who are patient when disaster strikes and realize that everything that Allah has outlined in his qada and qadar is absolute, women and men who are solemn, diligent, thuma'ninah, calm, humble and tawadhu', both of them who give alms and fast. They also take care of their private parts and always remember Allah. Therefore, for them Allah will forgive their mistakes. The common thread in Hamka's opinion lies in its meaning which is not gender biased, because there is no gender bias in Islam . Umar states that there are several variables that can be used as standards in analyzing the principles of gender equality in the Qur'an. These variables include: first, men and women are both servants . Second, men and women alike as caliphs on earth . Al-A'raf: 172). Fourth, Adam and Eve, were actively involved in the cosmic drama . Fifth, men and women have the potential to achieve achievements . Mandar people treat men and women equally in the family. According to them, this is a gift from Allah SWT. Another reason is that in children both boys and girls are a combination of father and mother . The values of sibaliparri are also in accordance with Islamic teachings that consider men and women equal. Women in married life are given equal rights according to the level of their obligations, even though the husband in that case has advantages but these advantages are not to control, enslave and abuse the wife instead with these advantages the husband is obliged to provide protection and livelihood to the wife as a form of cooperation in a household that is sakinah, mawaddah and warahmah in accordance with the word of Allah SWT Q.S. Al-Nisa: 34: The man is the protector of the woman , because Allah has favored some of them over others , and because they have provided for the benefit of their property. So godly women are those who obey and take care of themselves when are not around, because Allah has taken care of . The verse suffices to state that in principle the Qur'an views women as equal beings of God in terms of devotion to God and the life of the world. The role given to women is also balanced with their position and degree as human beings. There are even some female roles that cannot be taken by men. This is a respect for women, such as giving birth, breastfeeding and others. Some of the specific roles given to women mean that the Qur'an shows that men and women have their own duties and functions that cannot be considered worth more than the other. The particularity given to women cannot be regarded as something of more value and must be expressed in order to view men as inferior. On the other side, the advantages of men, for example in the form of physical strength, are not to show that women are below men. Each of these advantages is given by God as a role in life so as to create mutual help to achieve prosperity. If this is understood correctly and consistently, then some verses that outwardly distinguish men and women will not be understood as imbalances in life but interpreted as variations in roles and functions that make life more harmonious . Hadith about the equality of women and men is also found in various hadiths, one of which is about the virtue of seeking knowledge, namely: The Prophet Muhammad said: Whoever goes out of the house for the purpose of studying then such a thing includes sabilillah until he returns . The hadith states that seeking knowledge is not only directed at men but also addressed to women. This is clear, because it is commanded and encouraged to seek knowledge for every Muslim and is not limited to men or women . This is in line with the opinion of Kiai Masruhan Maghfuri who states that in his book al-Mar'ah al-Sholihah he explains the importance of education for women. Women also have the same rights as men in terms of studying, unlike in the past which did not allow or limit women's education, giving rise to the R.A Kartini movement . The difference between men and women is undeniable because each has its nature. The difference is at least biological. The Quran reminds: And be not jealous of what God has given to one part of you more than another. for men there is a part of what they work for, and for women there is a part of what they work for, and beg to Allah. The verses be ascertained that there is no difference in the level of intelligence and thinking ability between the sexes. The Qur'an praises ulul albab who does zikr and thinks about the events of heaven and earth. zikr and thinking can lead people to know the secrets of the universe. Ulul albab is not limited to men, but also women . Other hadiths that give value to women over men, it is narrated that Jahimah al-Sahmi came to the Prophet Muhammad and said: O Messenger, what do you think if I join the war and my coming is for deliberation?" then the Prophet Muhammad replied: "Do you still have a mother?" then Jahimah said "Yes, I still have a mother" then the Prophet Muhammad said "Take care of him because indeed paradise is on the soles of his feet . The hadith does not limit women but instead gives high respect. It also does not prohibit women from fighting like men but according to their nature and physical strength so that in doing something women adjust to the situation and conditions even though there is no prohibition to do more than that. The limitation that becomes a guideline is that the actions carried out do not endanger themselves and honor as Muslim women . The role of women in the public sector continues to increase today, as the human resources increase, women play strategic roles increasingly in various available sectors, therefore the quality of women will continue to be recognized. Women own the same rights as men before Allah, the only One is Allah. Allah Ar-Rahman Ar-Rahim, these two words represent gender. Ar-Rahman is identical with men, giving, and Ar-Rahim is identical with women who have a womb in which generations grow. Only God is single, all creatures on this earth will not be able to resemble the owner of life, humans and other creatures are only servants who inhabit the earth and are tasked with living life, being grateful for His blessings and serving Him . According to Yunus, involving women in the economy will have a very positive impact. In one of his studies, he also mentioned that consistently increasing financial access for women will have a positive impact that can open every link in the women's empowerment chain because: women will have control over assets and income; increasing the role of women in decision-making; and improving the status of women in the family and society. Increasing the role of women can be interpreted as access to resources so that women also contribute to society. Thus, economic empowerment that opens financial access for women has great potential to improve people's living standard . --- CONCLUSION Sibaliparri is collaboration between husband and wife in the household life of the Mandar community, which is implemented in various fields such as education, economics, decision-making, religious life and health. This has been a tradition of the Mandar people for a long time and is carried out by families of fishermen, farmers, civil servants, honorary workers and so on. Islam views that sibaliparri is equality between men and women in the household where in general Islam provides equal opportunities for men and women both in household affairs and work, world affairs and the hereafter except for matters that have been be the nature of both. These are the evidenced by the word of Allah in the Qur'an in several surah and hadiths.

This research examines sibaliparri in terms of fiqh and the culture of Mandar people. It applies qualitative descriptive research which is obtained based on the result of interview of some leaders and Mandar people from various professions and relevant sources. The result of this research states that sibaliparri is one concept of Mandar cultural values which is firmly intimate on society. This image means the concept of togetherness, mutual cooperation also equality in all fields including household life at a time. The implementation of sibaliparri values in household life of Mandar people can be in the picture of understanding, loving each other, mutual cooperation, and sincerity for example when a wife gives a birth then a husband takes over the household matters. Sibaliparri values related to family welfare are reflected in various fields, namely education, home economics, decision making, religious life, and health. Al-Qur'an is a principle and guide about justice which covers various recommendations to enforce economic justice, cultural politic and gender. In general, Al-Qur'an desires women not to be complementary creature and be the second position compared to men. Al-Qur'an provides guide clearly that all humans are equal and not different in terms of gender instead of the level of loyalty and piety. Other hadiths give women more respect than men and argue that women are domestic creatures but their position is fair and proportional, meaning that in certain circumstances men and women have different roles according to their needs and suitability.

Introduction The health benefits of footwear have been well recognized in the context of neglected tropical diseases. Apart from providing protection and comfort to the feet, footwear reduces vulnerability to a range of foot-related diseases. Common examples of diseases associated with barefoot walking include Buruli ulcer, cutaneous larva migrans, tungiasis, hookworm infection, soil transmitted helminth infection, strongyloidiasis, and leptospirosis [1]. These diseases primarily affect children between 5 and 15 years particularly in low and middle-income countries [2,3]. Footwear is also a major behavioral covariate associated with the development of podoconiosis [4,5]. Unlike other foot-related diseases, the proportion of school-age children affected by podoconiosis is small [6], since prolonged barefoot contact with irritant mineral particles in the soil [7] is necessary for development of disease. However, genetic susceptibility increases the chances of development of podoconiosis [5,8], and evidence indicates the importance of the interaction between high genetic risk in developing the condition and inadequate use of footwear. Yet rural residents in endemic areas hold misconceptions about the interaction of genetic susceptibility, soil exposure, and footwear use in causing podoconiosis [9,10] that operate as barriers to optimum use of protective footwear [11][12][13]. A study conducted in Wolaita zone of Southern Ethiopia reported consistent use of footwear among preschool children in podoconiosis-affected households to be only 31% [11]. In another study on school children consistent use of footwear was reported to be 54% though adherent soil observed on children's feet suggested that some footwear was less effective in preventing soil exposure [12]. Though these reports provide important evidence, biases may have led to under-ascertainment of inadequate footwear use. In one study [11] children's footwear use was reported by the caregivers and may have been affected by social desirability bias. In the second study [12] children were assessed during school hours resulting in overestimation of footwear use as children in rural areas tend to wear footwear to school [13,14]. We suggest that estimates of footwear use and the degree of protectiveness conferred might differ if children were reporting the behavior themselves and information was collected among children regardless of school attendance. Additionally, there is a dearth of evidence regarding the influence of socioeconomic factors on footwear use among school-age rural children highly susceptible to podoconiosis. Previous qualitative studies have reported the role of financial constraints in limiting parents' ability to provide adequate number of pairs of footwear for their children [13,14]. Social epidemiological studies have long observed a close connection between socioeconomic factors and health behaviors [15]. According to Giddens, socioeconomic factors create social circumstances that can constrain or enable preventive behaviors [16]. With socio-economic advantage comes resources and access to opportunity structures that increase the life chances and expand disease prevention capabilities [17,18]. According to Glymour and colleagues, individuals are forced to behave in unhealthy ways due to socio-economic constraints [19]. Studies into podoconiosis also have recognized the roles of socioeconomic circumstances of families in the practice of preventive behaviors. Studies among rural people in podoconiosis-endemic communities have observed a positive association of family socioeconomic status with adequacy of number of pairs of footwear owned and footwear use behavior [13,14]. Due to their inability to afford more than one pair of shoes, parents had to insist their children go barefoot on certain occasions. However, the influence of socioeconomic status of families and adequacy of footwear ownership has not been adequately studied in relation to adoption of podoconiosis preventive behaviors among school-aged rural children. The measurement of socioeconomic status was based mainly on self-reported monthly income and perceived socioeconomic wellbeing which may not indicate the actual situation of households [13,14,20,21]. Additionally, our knowledge of the role of socio-demographic characteristics such as gender, age, and education in footwear use behavior is also limited. Studies suggested that socio-demographic variables not only shape social context and day-to-day realities, but also help us understand the distribution of health behaviors across different segments of population [15] which might in turn facilitate prioritization of population segments for behavioral change programs [22,23]. Thus, we planned this study to evaluate the association between protective footwear use and socio-economic factors in order to identify possible traction points for interventions to encourage footwear use among rural school-aged children. We hypothesized that family socioeconomic status and adequacy of footwear ownership predict the likelihood of protective footwear use among school-aged rural children in Wolaita zone, southern Ethiopia. --- Materials and methods --- Ethics statement Ethical approval was obtained from the ethics committees of the Armauer Hansen Research Institute and the College of Health Sciences, Addis Ababa University . The Wolaita Zone Administrative Bureau gave written permission to work in the community. MFI allowed their outreach clinic site staff to help in the identification of study participants. Caregivers confirmed their permission for a child to participate in the study by signing or thumb-printing on the consent form. Children above age 12 expressed their assent verbally in the presence of their caregivers as a witness, to ensure the assent process was without any coercion. The use of verbal assent from children was approved by the ethics committees. --- Study setting and sampling technique Cross-sectional surveys were conducted with children from households in Wolaita Zone, southern Ethiopia in March 2016. The study setting of this research has been described in an earlier publication [24]. Households affected by podoconiosis were the target population of the study. A single survey sample size estimation formula was used to determine the required sample size, i.e. n ¼ 1:96 2 pð1À pÞðDEFFÞ d 2 [25], where n = total sample size required, p = population proportion , d = desired level of absolute precision , 1.96 = zscore, DEFF = design effect. The population proportion was determined based on 31% point prevalence of observed shoe-wearing among pre-school children in podoconiosis-affected families [11]. Using this proportion, a design effect of 1, and a Z-value 1.96, the total sample size determined for the study was 330 households. Recruitment was restricted to three rural communities selected from the sixteen active outreach clinic sites of the Mossy Foot International organization. The criteria for selecting these communities were a) longer MFI service years, and b) larger number of registered patients. A list of affected families was obtained from the MFI head office. The MFI distributed shoes to younger children in affected families until 2013/2014 in all kebeles in which outreach clinics were running. The outreach clinic staff identified affected families eligible for the study using the last shoe distribution list that included information about children's age and sex, the number of siblings in the family who received shoes, and kebele of residence. The list of households in the shoe distribution list served as a sampling frame. The total number of podoconiosis patients registered by MFI in the area at the time of the study is larger than this, as shoes were only distributed to households with school-age children. The sampling frame was composed of a total of 261 households in Damot Pulasa district, 405 households in Ofa district and 297 households in Bolo Sore district. Due to the variation in number of households by district, a probability proportionate to size sampling technique was used to select 90 households from Damot Pulasa district, 139 households from Ofa district and 101 households from Boloso Sore district. We kept twenty percent of sample households in the sampling frame of each district in reserve list so that data collectors could easily replace if an eligible respondent was absent. A list of sampled households coded with random numbers was given to each data collector. In every sampled household, a household head and a child were recruited. In households with more than one child in the age range, data collectors used a lottery method to select one child to complete the survey. The eligibility criteria for children were a) being 9 to 15 years of age, and b) being free from podoconiosis. Household heads provided socio-economic data for their family. --- Development of measures Composite indexes were used to measure footwear use, ownership of footwear and family socio-economic status variables. Indices are composite measures that summarize and rank several indicators to represent the general dimension of a given concept. The indicators used to form an index may not necessarily be related to each other and the inter-correlation of items within the index is not a prerequisite to combining them [26]. A multidisciplinary panel of experts with many years' experience of research on podoconiosis and other NTDs validated the content, relevance and clarity of the items in indices. --- Footwear use index We conceptualized footwear use as a function of both frequency of footwear use across situations and protectiveness of footwear used. Frequency was indicated by the use of footwear in a range of situations as recalled over the last seven days, and as observed by the data collector on the day of interview. The index constituted 13 indicators probing the use of footwear in a range of situations. The situations include looking after cattle, farming, fetching water from the river, collecting fuel wood, walking around the homestead, playing games or sports exercises and social occasions such as going to market, church or school. These indicators have been reported in previous qualitative and quantitative studies as important situations in which the use of footwear varied [11][12][13]. Protectiveness, on the other hand, was indicated by features of the footwear used [20,27]. Closed footwear in which the footwear covered the entire foot was considered protective while open footwear where areas of the feet are exposed was considered under-protective. For the purpose of computing total scores of the index, weights were given to the types of footwear included in a response scale format: 0 for None , 1 for open , and 2 for closed . --- Adequacy of footwear ownership index Adequacy of footwear ownership was defined as the number of pairs of footwear owned by the school-aged child. Previous research has identified five general types of footwear including: open plastic/foam, closed plastic/foam, open leather, closed leather, and closed canvas/sneaker were included in the index as possible types of footwear owned [28][29][30]. The number of pairs of footwear a school-aged child owned was used to form a response scale and given a weight based on the opportunities to avoid barefoot exposure with increase in the number of pairs of footwear available: none = 0, one pair = 1, and � two pairs = 2. --- Family socioeconomic status index The Family Socioeconomic Status index was developed to measure multidimensional aspects of household level socioeconomic inequality among families affected by podoconiosis. Three dimensions have been widely used in the measurement of socioeconomic status [31,32]. However, these dimensions have low variability in developing countries [33]. As a result, an assets-based approach has been suggested for measuring the socioeconomic circumstances in these contexts [33,34]. Assets-based approaches are extensions of the sustainable livelihood framework that focuses on specific household assets to determine socioeconomic position among families in the rural setting [34]. According to Kollmair and Gamper, ". . .people require a range of assets to achieve their self-defined goals as no single capital endowment is sufficient to yield the desired outcomes on its own" [35]. Thus, we conceptualized family socio-economic status as a function of ownership of important livelihood assets that include human assets , social assets , natural assets , financial assets and physical assets . Indicators of assets included in the socio-economic status index were drawn from SLF and existing livelihood studies in Wolaita Zone and elsewhere in Ethiopia [34,36,37,38]. A total of 51 asset indicators were included in the family socioeconomic status index, and all required a dichotomous response, 0 for "No" and 1 for "Yes". The wealth index scores were determined for family socio-economic status index through Principal Component Analysis . Excluding those asset indicators either owned by all or few , a total of 35 asset indicators were included in PCA. --- Data collection Experienced data collectors certified with a college diploma or degree in a social or health sciences field were recruited and trained. The trained data collectors pretested the instruments in six households in the study area to ensure understandability, clarity and relevance of the questions. Two data collectors were deployed per study site: one surveyed a parent household head while the other surveyed the child. The data collection was conducted using a pretested instrument in a location that provided privacy for the respondent. Data collection was supervised daily by three assistant supervisors and every three days by the first author. In each study site, the MFI outreach clinic staff collaborated with the kebele network leaders and other knowledgeable individuals in the village to link the sampled households with data collectors. --- Data analysis A trained data entry clerk entered the data into a SPSS spreadsheet as coded in the questionnaire. Statistical Package for Social Sciences version #20 , was used for the analysis. Descriptive analysis was conducted using frequency distributions to describe socioeconomic status of households, adequacy of footwear ownership and extent of protective use of footwear among respondents. The independent samples T-test was employed to determine if the mean scores of protective use of footwear varied by gender , age , or educational attainment . Pearson product-moment correlation analysis was conducted to determine the association between socio-economic factors such as family socioeconomic status and adequacy of footwear ownership . A linear regression analysis was conducted to test whether socioeconomic factors such as family socio-economic status or adequacy of footwear ownership had independent or interaction effect on the protective use of footwear . To determine the interaction effect, a new product term variable was created, family socioeconomic status variable multiplied by adequacy of footwear ownership. The effects of gender , age and educational attainment variables were controlled. All variables were entered into the linear regression model using a backward stepwise method. Collinearity between variables was checked through a correlation matrix, in which none of the independent variables were strongly correlated. An alpha value of 0.05 was considered to determine the statistical significance of associations. A list-wise deletion method was used to exclude cases with missing values during computation of index scores and test of associations. --- Results --- Demographic characteristics of respondent children As indicated in Table 1,46.4% of the respondents were girls. The mean age of the respondents was 12.3 years . The educational attainment of school-aged children was measured by the number of school grades attained. Only 24 children had never attended school. The median school grade for those respondents who attended school was 3 . --- Family socio-economic status of respondents As Fig 1 shows, wealth index scores of socioeconomic status of households ranged from -1.91 to 2.90, while zero represented an average wealth index score. Positive wealth index scores indicated better-off socioeconomic status households while negative wealth index scores indicated worse-off socioeconomic status households. For descriptive purpose, we considered standard normal distribution of wealth index scores to classify households into five wealth quantiles: -2 to -1 = lowest, -1 to 0 = lower, 0 to 1 = middle, 1, 1 to 2 higher and 2 to 3 = highest. Households within 1 standard deviation were categorized into each category. Accordingly, as indicated in Table 2, the lowest socioeconomic status households accounted for 19.1% while the highest socioeconomic status households accounted for only 3.3%. --- Adequacy of footwear ownership among respondents Adequacy of footwear ownership was measured by an index of types and number of pairs of footwear owned by children. To determine the adequacy of footwear ownership, weights were given to the number of pairs of each type of footwear children reported owning . As indicated in Table 4, the total adequacy of footwear ownership index scores ranged from 0 to 9 . For descriptive purpose, the mean score was used as a cutoff point, and the adequacy of footwear ownership was below average for 41.5% respondents. --- Pattern of footwear use among respondents across situations Patterns of footwear use varied across situations and activities . Going barefoot was relatively common when children performed domestic chores at home , were at home in their spare time , engaged in farming , or playing sports in school or outside school . Closed footwear was used in very specific situations like going to church , market or school . --- Extent of protective use of footwear among respondents All 13 items representing various situations of footwear use were considered to determine the total scores for the footwear use index. As shown in Table 6, the responses of the 220 cases who responded to all of the items in the index were summed to determine the total index scores. Respondents who responded "does not apply" for some items in the index were not considered during determination of total index scores. The total index scores were determined by summing the values in each situation , and ranged from 0 to 26. The average score for footwear use was 14.3 with a standard deviation of 6.56. --- Association of demographic factors with extent of protective use of footwear among respondents As shown in Table 7, the independent samples T-test was used to determine the association of protective use of footwear with gender, age and educational attainment of respondents. Girls --- Association of socioeconomic factors with protective use of footwear among respondents As indicated in Table 8, the Pearson correlation coefficient revealed a positive association between protective use of footwear with family socioeconomic status and adequacy of footwear ownership . The exploratory regression analysis revealed the effects of family socioeconomic status and adequacy of footwear ownership on protective use of footwear when demographic attributes of respondents such as age , sex and educational attainment were controlled in all steps of the regression analysis. Regression analysis stopped at the fourth step. The final model, in which family socioeconomic status, adequacy of footwear ownership and product term variables remained, explained 31% of variance in the protective use footwear among respondents. The main effect of adequacy of footwear ownership on protective use of footwear remained consistent while the main effect of family socioeconomic status was not consistent. Interestingly, the interaction between family socioeconomic status and adequacy of footwear ownership was statistically significant . Fig 2 shows the interaction between family socioeconomic status and adequacy of footwear ownership footwear in influencing the protective use of footwear among school-aged children. --- Discussion This study aimed to measure the extent of protective footwear use among school-age rural children in Wolaita zone using a composite index of context-driven indicators. Efforts were made to systematically measure concepts such as socioeconomic status and adequacy of footwear ownership and to investigate their association with the protective use of footwear. Based on the wealth index scores, the proportion of households falling into the lowest socioeconomic status categories was 19%, while only 3.3% of the households belonged to the highest socioeconomic status. This may not be surprising as podoconiosis-affected families are known to face a double burden, being prevented from economic and social activities and impacted by the costs of treatment [39]. Studies have also indicated the debilitating impacts of podoconiosis-related stigma on the socio-economic wellbeing of affected individuals and their families [40,41]. Almost all children participating in this study reported ownership of some form of footwear. This demonstrates a positive change in the lifestyle of rural people in Ethiopia, where a barefoot tradition has prevailed for a long period of time. Nevertheless, the types and numbers of pairs of footwear owned by rural children are very limited, with only two pairs owned on average. The most common types of footwear owned by children were open plastic shoes in contrast to adult members of the rural population in settings known for podoconiosis endemicity in Ethiopia. For example, a study reported ownership of open plastic footwear among only 18% of adults affected by podoconiosis and 29% of adults never affected by podoconiosis [20]. On the other hand, the ownership of closed footwear of any type was lower for children in this study compared to adults. In a previous study, around 60% of adults reported owning closed plastic, leather and canvas types of footwear [20]. This suggests that adults are more privileged than children in terms of access to more pairs of protective footwear. Our assessment of protective footwear use among school-aged rural children provided important evidence on the vulnerability of rural children in the study area to podoconiosis. A range of previous studies have described footwear use in podoconiosis-endemic communities [20,27,29,30], but most have relied on self-reported information or age at first use of footwear and footwear use at a single point in time , which make it difficult to assess whether footwear is used consistently and optimally across situations in daily life. A few studies attempted to measure consistent use of protective footwear and observed it to be inadequate [12,42]. This study also further enhances our understanding of patterns of shoe use across a range of situations, and will enable more flexible, targeted responses . In the present study, the proportion of children going barefoot in situations like domestic chores, farming and sports activity ranged from 25% to 40%. This is consistent with previous studies [13,14]. Barefoot exposure among children performing various activities was found to be higher than that among adults. In Alemu and colleagues' study [29], 22% of adults reported walking barefoot when farming and 11% reported walking barefoot at home. Similarly, 17% of adults reported going barefoot during farming, 16% during other work and 30% at home in Molla and colleagues study [28]. In another similar study, only 17% of adults reported walking barefoot during farming, while 13% indicated that they went barefoot at home [30]. As is the case for adults [13,14], children's use of footwear at social occasions was found to be high. Overall in this study, the extent of protective footwear use was low among school-age rural children in Wolaita zone. Nearly half of the children recruited from podoconiosisaffected families were found to use footwear in a way unlikely to afford them protection from the soil. This is congruent with Watanabe and colleagues' study [12], that reported inconsistent footwear use in 46% of children recruited in a rural school setting. However, the proportion of school-age children with inadequate footwear use in this study was lower than that of preschool children in a previous study [11]. This may partly be attributed to the age difference between the studies, making preschool children more disadvantaged than school-age children. The association between gender and protective footwear use is another important finding. The protective use of footwear among girls was found to be better than used footwear more protectively than boys. This may be baffling considering the deeply entrenched privilege of men that stems from cultural and institutional bias against women in societies, particularly in low and middle income settings [43][44][45]. However, studies have often shown that women have healthier lifestyles: they eat healthier foods, drink less alcohol, smoke less, and use seat belts more frequently compared to men who outperform women only in physical activity [15]. The gender and hygiene hypothesis highlights the tendency of girls to maintain hygiene better than boys and that girls are more often dressed in clothing that is not supposed to get dirty and receive more parental supervision and direction regarding cleanliness than do boys [46]. In the context of podoconiosis, studies have reported inconsistent results on differences in footwear use behavior between boys and girls. Watanabe and colleagues [12] reported that girls were more consistent in using shoes than boys. In contrast, parents reported higher levels of shoe wearing among preschool-age boys than girls in Ayode and colleagues' study [11]. These inconsistencies indicate the need for more efforts to the gender dynamics in protective use of footwear among school-aged rural children. The privileged status of girls in the protective of use of footwear may be related to cultural or economic factors which need further investigation. Protective footwear use tended to increase with children's age and educational attainmentwith age and progress to higher school grades, children are more likely to use more protective footwear regularly. This may be related to the parents' tendency to provide footwear to children at the age they enroll in school [13]. As age increases children also start generating income by themselves through petty trade and other means which allows them to own shoes. However, the poor use of footwear in early childhood is likely to limit the probability of allday-everyday use of footwear in adulthood as habits developed in childhood as predictive of habits in adulthood [47,48]. The inconsistency of footwear use among 50% of school-age children in this study and similar findings in previous studies [11,12] confirms the need of promotion of footwear use from early childhood. A positive association between family socio-economic status and protective use of footwear among school-age rural children suggests the need for interventions aimed to improve socioeconomic wellbeing of podoconiosis affected families. Family socio-economic status alone does not guarantee regular use of footwear-having adequate resources alone will not ensure optimal preventive actions against podoconiosis. Interventions aimed to address misconceptions and increase motivation to wear shoes are also needed. Health promotion research in behaviors such as physical activity showed that poorer households prioritize available resources for other purposes [49,50]. This may be due in part to poor parents using less health promoting parenting approaches with their children as a means of coping with the stressful impacts of socio-economic difficulties [51]. A statistically significant association was also observed between adequacy of footwear ownership and protective use of footwear. Children owning few alternative pairs of footwear had less protective use of footwear. This is consistent with previous qualitative studies that reported shortage of alternative pairs of footwear to be an important determinant of footwear use [13,14]. It is also consistent with previous studies on other behaviors, such as the association of availability of fruit and vegetables at home with intake of these food items among children [52][53] and the association between access to sports facilities and physical activity among children and adolescents [22]. In the present study, ownership of footwear independently predicted the probability of using footwear regularly and optimally. Its interaction with family socioeconomic status on the protective use of footwear was also significant. This suggests that adequacy of footwear ownership among children is determined partly by the economic capacity of households. Thus, creating circumstances that increase the capacity of lower socioeconomic status families could play an important role in protective use of footwear. --- Limitations and future research directions Though the findings presented in this study are of significance, the study is not without limitations. One of the limitations relates to measuring protective use of footwear. These days, researchers use sophisticated technologies to accurately measure routinized behaviors such as physical activity using pedometers, portable electronic or electromechanical devices that count every step a person takes in a day [54]. To date, there is no comparable way of measuring use of footwear. As a result, we relied on self-report over the last seven days, and observation on the day of interview. The self-report data is likely to be affected by recall bias. Daily diary records of observed use of footwear across situations within a certain range of days may be more accurate, but are also likely to be time intensive and costly. A previous study tried to check the veracity of self-reported use of footwear through observed foot condition and sock/shoe imprints on foot [12]. However, the relationship between observed foot condition and reported shoe use was not clear. Future research efforts may focus on developing reliable and valid measures of footwear use. This is vital to understanding trends of footwear use as preventive health behavior and for determining the proportion of the rural population vulnerable to podoconiosis. The low level of explained variance accounted for by the regression model consisting of family socioeconomic status, adequacy of footwear ownership and interaction term variables implies the importance of examining the role of other factors. In our previous qualitative study, misperception of risk for podoconiosis and perceived barriers to footwear use including uncomfortable footwear, shortage and poor adaptability of footwear for farm activities and sports were reported to negatively affect optimum use of footwear among school-age children [24]. Cultural, cognitive and interpersonal factors may interact with socioeconomic factors to influence protective footwear use in children. Future studies may therefore consider exploring the role these factors to further advance our understanding of the determinants of footwear use in the study area and elsewhere. --- Conclusion Increased adoption of protective footwear is needed to effectively prevent school-age children living in endemic areas from developing podoconiosis and other neglected tropical diseases. Approaches aimed to encourage ownership of multiple pairs of footwear should also consider PLOS NEGLECTED TROPICAL DISEASES increasing the socio-economic capacity of families in podoconiosis endemic communities. Livelihood strengthening interventions that provide opportunities for skills development, selfemployment, micro-credit and social protection services including educational support for children and access to free or subsidized health care may contribute to socio-economic empowerment of podoconiosis-affected families. --- All relevant data are within the manuscript and its Supporting Information files. --- McBride.

Podoconiosis is preventable if genetically susceptible people wear shoes starting from an early age and do so consistently. However, lack of routine use of footwear is one of the major risk factors for podoconiosis and several other foot-related Neglected Tropical Diseases (NTDs). This study is aimed at describing the extent of footwear use among school-age rural children susceptible to the disease and investigating associated socioeconomic factors.Cross sectional surveys were conducted in 330 randomly selected households in Wolaita zone, southern Ethiopia. A household head and a child aged between 9 and 15 years were recruited from each household. Household heads provided socioeconomic data while children were asked about their footwear ownership and footwear use.Nearly half (49.5%) of the children reported either walking barefoot or wearing under-protective footwear in a range of situations. Girls, older children, those in higher school grades, who belonged to families with higher socio-economic status, and those who owned a larger number of pairs of footwear reported more protective use of footwear. The linear regression model constituting the adequacy of footwear ownership and interaction term (i.e. family socioeconomic status by adequacy of footwear ownership) variables explained 30% of variance in the protective use of footwear (AR 2 = 0.307). The interaction effect of adequate ownership of footwear and family socioeconomic status consistently predicted the protective use of footwear among children (β = -0.175, p<0.01) though the main effect of adequacy of footwear ownership was stronger (β = 0.507, p<0.001).

Critical Crossroads provides older adults a space to discuss what concerns them at both national and local community levels, share their personal impact stories and experiences, and learn how these issues connect to social determinants of health. One important feature of this program has been attention to concerns of housing and its impact on older adults. This presentation will highlight two Critical Crossroads housing related segments . This presentation will share the This presentation will share the development of this community-led initiative, program goals, and lessons learned. More than five years after the City of Boston started its journey towards becoming an Age and Dementia Friendly community, the initiative and its collaborators have been working to ensure that the initiative and its many contributions are equally realized by all Bostonians. Drawing on the concept of aging equity--that all older adults, despite their life course histories, have equitable access to programs and services that help them age well. To achieve this means removing obstacles to accessing community features that support healthy aging, establishing social and civic engagement opportunities, ensuring safe environments, establishing access to healthcare, and disseminating knowledge of available supports and services. This presentation will describe the research and community engagement that led to the development of an aging equity conceptual framework and examples of how it is being operationalized in the City of Boston. For example, we will share the ways in which outreach and communication strategies have been altered to more equitable practices including efforts to build trust, engage in cultural translation of programs and services, and consider new channels of information sharing. --- SESSION 4155 Abstract citation ID: igad104.1512 --- EAST MEETS WEST: INTERVENTIONS, PRACTICE MODELS, AND POLICIES TO SUPPORT FAMILY CAREGIVERS IN DIVERSE CULTURES Chair: Fei Sun Co-Chair: Juanjuan Sun Discussant: Jiehua Lu Discussant: Tracie Harrison This East Meets West symposium consists of six studies that examined innovative interventions, practice models and policies designed to support family caregivers of older adults in the U.S., Taiwan, and mainland China. The first two papers both used case management interventions to assist family caregivers with a focus on caregiver depression. The paper from the U.S. found that more difficulties of performing caregiving tasks and less caregiver preparation contributed to higher levels of depression, and the paper from Taiwan found that caregivers who received the case management service reduced depression at four-month and six-month follow-up assessments. The third paper discussed a "time travel" paradigm developed to guide service design and delivery for persons with dementia at different stages. The fourth paper used

While the age-friendly community movement has seen tremendous progress in the past decade, with over 700 U.S. member communities in the Network of Age-Friendly States and Communities (NAFSC), many more U.S. communities have not yet joined the network. Joining NAFSC can spur activity to improve local conditions for older residents, as well as allow communities access to informational resources and contacts from peer communities that have undertaken similar initiatives. A better understanding of the barriers preventing communities from joining NAFSC, the hesitancy about joining, and the age-friendly work being done outside of NAFSC is critical to extending age-friendly work nationally. The present study explored factors that inhibit communities from joining NAFSC. We conducted 12 semi-structured virtual interviews with community leaders in Maine and Massachusetts whose communities are not NAFSC members but are actively working on aging-related issues. Participants were recruited through the researchers' professional networks. We intentionally cultivated diversity of community size during recruitment. Transcripts and interview notes were coded thematically. Resulting themes included a lack of knowledge/misconceptions about what joining NAFSC requires, a perception that there are few benefits to joining, political concerns, insufficient personnel capacity, other financial priorities (e.g., children's programming, COVID relief), and a desire to retain local control over aging-related initiatives. Recommendations include clearer communication of NAFSC membership requirements and benefits, additional technical assistance to communities, and loosening of reporting requirements for small communities.

INTRODUCTION Sexual and gender minorities is an umbrella term including lesbian, gay, bisexual, transgender, queer, intersex, gender nonconforming people and other populations whose sexual orientation or gender identity and reproductive development is considered outside cultural, societal or physiological norms. [1][2][3] --- WHAT THIS STUDY ADDS ⇒ In countries and regions where same-sex relationships are legalised, most of the family outcomes are similar between sexual minority and heterosexual families, and sexual minority families have even better outcomes in some domains. ⇒ Sexual minority families may experience some additional stressors related to their sexual minority status. Community context and climate have an impact on the health and well-being of sexual minority parents and their children. We summarised social risk factors of poor family outcomes and would like to offer suggestions for researchers, policy-makers and practitioners. --- HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY ⇒ Parents' sexual orientation is not an important determinant of children's development. We advocate among policy-makers, communities, schools, families and individuals for better awareness of family outcomes of sexual minorities. ⇒ More research is needed to learn more about how communities around the world can support positive development among all children of sexual minority parents and how legal and policy contexts affect their lives and their children. --- BMJ Global Health have an increased risk for health problems. [4][5][6] In recent years, the number of children in families with parents who are lesbian, gay, bisexual, transgender and queer has increased. [7][8][9] A report in 2018 showed that, in the USA, same-sex couples are seven times more likely than different-sex couples to be raising an adopted or foster child, and there are an estimated 114 000 same-sex couples raising children. 9 Despite recent improvements in public attitudes towards sexual minority families, sexual minority parenting is still a controversial topic around the world, and the outcomes of sexual minority families remain not fully understood. 10 11 Since the 1980s, many countries have started to expand marriage rights to sexual minority couples in the areas of relationship recognition, tax insurance and child adoption. 12 In 1989, Denmark was the first country in the world to introduce a law allowing same-sex partnership registration. 12 The legal recognition of same-sex relationships is a critical step forward in advancing equal marriage rights for sexual and gender minorities. 13 14 As of December 2021, around the globe over 40 countries and territories allow sexual minority couples to marry. Once national laws and public policies of equal marriage rights for sexual minority couples are settled, the law can ultimately establish necessary conditions for children to be conceived, born and raised; and thus for children to thrive in an optimal environment. 15 Given the social, cultural, political and legal divide on the topic of the sexual minority family, debate persists about whether parental sexual orientation affects family outcomes. Evidence from a previous qualitative review suggested that children raised by lesbian and gay parents do not experience adverse outcomes compared with other children. 16 A quantitative review indicated that children of gay parents had significantly better outcomes than did children of heterosexual parents on some psychological adjustment domains. 17 However, some studies have shown contradictory findings that children from sexual minority parent families may have worse developmental outcomes than children from heterosexual families in some domains, such as children's health, education or marijuana use. [18][19][20] The sexual minority stress theory suggests that sexual minorities often experience chronic psychosocial stress. 21 In recent years, there has been greater attention to sexual minority parents and their children. Numerous studies have compared family outcomes between sexual minority and heterosexual parent households. Based on this body of literature, we included a comparison group of heterosexual parent households in this review. Thus far, little is systematically known about the disparities in family outcomes between sexual minority and heterosexual families after the legal recognition of same-sex relationships. Further understanding of the disparities in multiple measures of outcomes may inform general debates and policy interventions in family structure and child health. This systematic review aims to compare the disparities between sexual minority and heterosexual parent families in the following major family outcomes: children, parent, household-level outcomes. We also discuss social risk factors of poor family outcomes and offer some suggestions for improving family outcomes. --- METHODS This systematic review and meta-analysis followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. 22 --- Search strategy We searched PubMed, the Web of Science, Embase, the Cochrane Library and APA PsycNet for eligible articles published in any language from 1 January 1989 to 1 April 2022. The detailed search strategies are available in online supplemental appendix S1. We also manually examined reference lists of reviews, original studies and related systematic reviews to identify additional publications that we may have missed in our electronic search. --- Eligibility criteria To meet the inclusion criteria, articles had to: be conducted in the country after the legal recognition of same-sex relationships; be primary studies using qualitative, quantitative or mixed methods; compare the differences between sexual minority and heterosexual parents, and/or their children; and data that have been used once in a manuscript to avoid replication. In addition, all articles were based on the time of recognition of the first type of law, regardless of the type of law. Exclusion criteria included: grey literature ; literature review or purely theoretical discussion paper; a policy statement/agenda; a comment or letter; or lack of data on parenting for sexual and gender minorities. In the USA, some states began to recognise same-sex relationships from 2000. Therefore, for studies conducted in the USA, we included studies conducted after 2000. --- Study selection and data extraction We first exported titles and abstracts identified through the database searches to EndNote and removed duplicates. Two investigators independently assessed the titles and abstracts of all identified articles. Then, we obtained and examined the full text of the potential articles and, if necessary, discussed the content with a third review author to decide whether or not to include articles thought to be contentious. After the study selection process, two reviewers independently extracted data from the included studies using a predesigned standardised Excel form with the following information: first author, publication year, location, sample size, age, study design, meta-analysis , outcome measures, who reported the data and main finding. --- BMJ Global Health --- Quality assessment We assessed the quality of each extracted article using the Joanna Briggs Institute Checklist for Analytical Cross-Sectional Studies, Cohort Studies or Qualitative Research Critical Appraisal Tool. 23 Two reviewers independently assessed risk of bias using percentage scores following Ancheta's report. 24 Low quality of a study was considered if the score percentage was 49% or lower, moderate if the score percentage was 50%-69% and high if the score was 70% or higher. Detailed information about the quality of included articles is listed in online supplemental appendix S2. --- Assessment of heterogeneity and publication bias To assess the heterogeneity of studies in meta-analysis, we applied principles from both Cochran's Q test and Higgins I 2 test. P-value of Cochran's Q test less than 0.05 considered problematically high heterogeneity. Moderate heterogeneity was considered if I 2 was 30%-50%, and high if I² exceeded 50%. Random effects model would be used for the data were high heterogeneity, otherwise, a fixed effects model would be selected. Sensitivity analysis was also conducted if there was problematic heterogeneity. Publication bias was assessed by inspecting funnel plots analysis. If the Egger's test has p>0.05, it means no evidence of publication bias; otherwise, there would be a publication bias. --- Outcome measures A thematic analysis of the literature was conducted to identify outcomes. Two researchers separately coded the outcome measures from each study. The two coding results were compared and discussed. After resolving the discrepancies, outcomes were categorised into the following three main domains with 11 themes: children's developmental outcomes , parents' psychological adjustment and household-level outcomes . A detailed definition and explanation of each outcome were listed in online supplemental appendix S3. --- Statistical analysis Most of the outcomes in this review were continuous, so we selected standardised mean difference and 95% CI as the effect size for reporting the results of meta-analysis. Given that the scoring standards of measurement tools used in different studies are inconsistent, for the scale scores with inconsistent evaluation criteria, we reversed scoring to make the scale in the same direction . If the outcomes were measured at a different time point, the terminal follow-up visits were chosen to compare the differences in outcomes between two family types. A fixed effects or random effects model was selected according to the deviance information criterion. We set the significance level at 0.05 for pooled estimation results and built forest plots for each outcome using R V.4.0.4, including three R packages: meta, metafor and dmetar. For the quantitative studies and qualitative studies that could not be included in meta-analysis, we used narrative synthesis to aggregate, integrate and interpret the results. We provided the data of outcome for the main findings in table 1. --- Patient and public involvement Patients or members of the public were not directly involved in this research study. --- RESULTS The search identified 1194 articles plus 35 articles through other sources, of which 1058 articles remained after duplicates were removed. Moreover, 913 articles were considered irrelevant and further excluded after title and abstract screening, which left 145 eligible articles for full-text screening. After further excluding 111 articles for various reasons, 34 articles remained for analysis in this review , of which, 18 were included for narrative synthesis and 16 for meta-analyses. --- Study characteristics Table 1 displays the characteristics of studies included in the current systematic review and meta-analysis. Data and outcome measures of each study included in metaanalyses are listed in online supplemental appendix S4. Most studies were conducted in the US, two were conducted in Australia and Canada, respectively; whereas the remaining studies were conducted in Europe. Among the 34 studies, seven were cohort studies, 22 were cross-sectional studies, and three were qualitative studies. Three qualitative studies all used thematic analysis for data analysis. One research article was on gay parent families only, and three research articles were on lesbian parent families only. Twenty-eight research articles were on both gay and lesbian parent families. One research article was on lesbian, gay and bisexual parent families; and one was on lesbian, gay, bisexual, transgender, and queer parents. Our analysis included four articles at moderate risk of bias and 30 articles at low risk of bias. No studies were considered at severe risk of bias. Risk of bias was mainly related to confounding factors, or non-objective measures of exposure factors . The included 34 studies were categorised into the following three areas including 11 main themes: children's developmental outcomes (17 for children's psychological adjustment, 18 20 25-39 five for children's physical health, 19 20 37 38 40 four for children's gender role behaviour, 26 35 41 42 three for children's gender identity/sexual orientation, 20 29 41 six for children's educational outcomes, 20 33 43-46 parents' psychological adjustment (six for parental mental health, 18 27 35 36 47 48 five for parenting stress, 32 35 40 48 49 household-level outcomes (six for parent-child relationship, 30 35 36 40 47 50 six for couple relationship satisfaction, 26 --- Cross-sectional Yes Children's psychological adjustment; family functioning* Same-sex parents reported significantly lower in externalising problems of their adopted children than heterosexual parents reported, but not in internalising problems. In 1.5-to 5-year-old group, no statistically significant differences were found in family functioning. In 6-to 18-yearold group, Same-sex parents reported significantly lower levels of family functioning. McConnachie No significant difference were found between same-sex and heterosexual families in terms of gender role behaviour. Gay fathers showed lower levels of both depression and parenting stress, but not in anxiety. Gay fathers showed lower levels of parenting stress. Gay fathers showed higher levels of parent-child relationship. et --- Bos and Sandfort 29 The Netherlands 131 children . In reporting on their experiences with schools, heterosexual parents were more likely to perceive mistreatment due to their adoptive status than sexual-minority parents. Data are mean, range, mean , or mean , unless otherwise stated. Children refer to parents' offspring of all ages throughout the article. In sample size column, LGBTQ refer to lesbian, gay, bisexual, transgender, and queer parents, respectively. In outcome measures column, *parent-reported data, †teacher-reported data and ‡child-reported data. In main finding column, the data of each study included in meta-analysis were listed in online supplemental appendix tables S4A-S4F. AME, estimates from logistic regression models are expressed as average marginal effects ; GFF, gay male parents both described as feminine; GMF, gay male parents, one described as masculine and one as feminine; GMM, gay male parents both described as masculine; NA, Not Applicable. --- Table 1 Continued BMJ Global Health family functioning, 25 26 28 49 three for social support, 32 52 53 and five outcomes that cannot be grouped into themes (preschool selection considerations, 54 parental school involvement, 55 parent-school relationships, 27 parental self-agency, 28 and child's substance use. 30 The outcome measures in table 1 were listed in the order of the above themes. --- Children's psychological adjustment We identified 17 studies in this search with regard to children's psychological adjustment, among them, five articles were included in narrative synthesis. Three studies reported that children of sexual minority parents were as likely as children of heterosexual parents to grow up healthy and well adjusted. 34 37 38 Two studies reported more emotional problems for children with sexual minority parents than for children with heterosexual parents 20 39 . Among the 17 studies, 12 were selected for metaanalysis. 18 25-33 35 36 The overall effect size for children's psychological adjustment was statistically significant . Sensitivity analysis showed the overall effect size was not influenced by removing single effect size . Egger's regression test showed there was a publication bias . This result indicates that children raised by sexual minority parents were found to adjust better on some psychological domains than children raised by the different-sex parents. Further, we stratified studies by age of children , pathway to parenthood , outcome measure type , country , geographical region . In the preschool-age group , the results indicated that sexual minority parents reported significantly fewer psychological problems of children than heterosexual parents . In the school-age group , no differences were found between children with sexual minority parents and children with heterosexual parents . This suggests the age of the children may be a factor affecting the pooled effect size. The effect size was significant for both the adopted subgroup and biological subgroup . In addition, subgroup analysis results showed that heterosexual parents reported significantly more internalising and externalising problems among their children than reported by sexual minority parents . When subgroup analysis was performed by country, sexual minority parents reported significantly fewer psychological problems than heterosexual parents --- BMJ Global Health in the Netherlands . The results of subgroup analysis by region showed that, in Europe, there is a statistically significant effect size ; in the Americas, the effect size was not statistically significant . Finally, we analysed the change of difference between children in sexual minority families and children in heterosexual families in children's psychological adjustment over time . As shown in figure 3, there was a decreasing trend in the difference between the two groups over time. --- Children's physical health Five studies on children's physical health were included in narrative synthesis. 19 20 37 38 40 Three articles reported that children in sexual minority parent and heterosexual households are similar on physical health outcomes. 37 38 40 Children in cohabiting households have poorer health outcomes than children in married households. 19 37 Regnerus's study showed that the children of lesbian parents report worse physical health, 20 but it is worth noting that the result should be taken with caution because its definition of 'child with same-sex parents' is controversial. 17 37 39 Children's gender role behaviour Four articles reported children's gender role behaviour, 26 35 41 42 all of which were included in narrative synthesis. Two articles show there were no significant differences among children in different family type in gender role behaviour. 26 35 In Goldberg's research, sons in lesbian parent families were less masculine than sons in gay and heterosexual parent families; but there were no BMJ Global Health significant differences across family type for girls' behaviour at each time point. 42 In addition, sons of GMM are similarly masculine as sons of heterosexual parents. The son of the GFF was perceived as less masculine than the sons of the other parent descriptions. 41 Children's gender identity/sexual orientation All three studies show that children's gender identity/ sexual orientation may vary by family type. 20 29 41 These studies found that compared with the children who lived in heterosexual parent families, the children who lived in sexual minority parent families had a lower expected likelihood of developing as heterosexual. 20 29 41 The detailed results were shown in table 1. --- Children's educational outcomes We conducted a narrative synthesis of six studies on children's educational outcomes. 20 33 43-46 Four studies indicated that children from same-sex couples appear to have the higher rate of grade retention, lower graduation rate or worse educational attainment than children from different-sex couples. 20 43 44 46 On the contrary, two studies reported that children in sexual minority parent families outperform children in heterosexual parent families on standardised test scores, high school graduation rates, college enrolment, and school/academic competence. 33 45 Parents' psychological adjustment Parental mental health and parenting stress were included in this topic. For parental mental health, bisexual individuals in general experience greater levels of psychological distress than lesbian or gay and heterosexual individuals. 18 When comparing gay or lesbian vs heterosexual parents, the result did not reveal appreciable differences in distress levels. 18 As for quantitative synthesis results , the results of six studies on parental mental health showed no significant differences between family types in terms of parental mental health . 18 27 35 36 47 48 Sensitivity analysis showed the overall effect size was not influenced by removing single effect size . Egger's regression test showed a publication bias . Five articles reported the differences in parenting stress. 32 35 40 48 49 All these studies were chosen for metaanalysis. The estimated overall effect size was not statistically significant , showing that the parenting stress was no different between sexual minority and heterosexual parents. Sensitivity analysis showed no single effect size influenced the overall result . Egger's regression test also showed no evidence of publication bias . --- Parent-child relationship Six studies reported the differences in parent-child relationships among different family types, all of them were selected for meta-analysis. 30 35 36 40 47 50 The overall effect size was statistically significant , indicating that sexual minority parent groups showed higher levels of parent-child relationship quality, such as higher levels of warmth, greater amounts of interaction and more supportive behaviour, when compared with the heterosexual parent groups. Egger's regression test showed no publication bias . Sensitivity analysis showed no single effect size influenced the overall result . --- Couple relationship satisfaction Six studies collected data on couple relationship satisfaction among different family types. 26 28 31 40 48 51 Among them, a qualitative study examined changes in couple intimate relationship. The finding showed few differences in intimate relationship by parent sexual orientation. 51 Another five studies were chosen for BMJ Global Health meta-analysis. 26 28 31 40 48 The estimated overall effect size was not statistically significant , indicating that sexual minority couples and heterosexual couples did not show difference on these measures of couple relationship satisfaction. Egger's regression test showed no publication bias . Sensitivity analysis showed no single effect size influenced the overall result . --- Family functioning All studies of this topic were chosen for metaanalysis. 25 26 28 49 From figure 7, the heterogeneity test showed wide heterogeneity across effect sizes . The random effects model was used. The overall effect size was not statistically significant , suggesting that family functioning was no different between sexual minority parent families and heterosexual families. Sensitivity analysis showed the overall effect size was influenced by removing single effect size . Leaveone-out analysis showed that no singular study when omitted diminished the significant heterogeneity present . Egger's regression test showed there was a publication bias , which also adds uncertainty to the estimates. Given that these differences are sensitive to sample exclusions, it is recommended that the result based on six effect sizes should be interpreted with caution. Thus, the certainty of evidence was graded low. --- Social support Three articles reported the differences in social support among gay, lesbian and heterosexual parent families. 32 52 53 All three studies on this topic were included in narrative synthesis . Overall, same-sex parents did not perceive a significant lack of social support. 32 53 Lesbian and gay participants faced additional concerns regarding the security of their placement due to the possibility of homophobic discrimination. 52 Other outcomes Five outcomes cannot be grouped into themes. Three studies report the outcomes on school-related aspects, 27 54 55 the detailed results are listed in table 1. Regarding the consumption of cigarettes, alcohol, and marijuana/hashish, no significant differences were found between children in lesbian parent families and children in heterosexual parent families. 30 Compared with different-sex parent families, same-sex parent families reported higher levels of parental self-agency. 28 --- DISCUSSION To our knowledge, this is the first systematic review to identify the disparities in family outcomes between BMJ Global Health sexual minority parent families and heterosexual parent families against the background of legal recognition of same-sex relationships. Contrary to many concerns, our review found most family outcomes were similar between these two family types, and sexual minority families have even better outcomes in some domains, such as child psychological adjustment and child-parent relationships. While some evidence was found that sexual minority parents were more likely than heterosexual parents to adopt hard-to-place children, 54 our meta-analysis found better psychological adjustment in children raised by sexual minorities, especially in preschool age children. This result is consistent with previous reviews 17 and may be due to better preparedness in the face of strong anti-gay stigma related to sexual minority parent families, and therefore may have displayed greater adjustment difficulties. Another potential explanation is potential higher socioeconomic status and more egalitarian parenting roles in sexual minority parent families. 17 Sexual minorities historically have faced more rigorous scrutiny than heterosexuals regarding their rights to become parents. 15 In fact, growing up with sexual minority parents may confer some advantages to children. They have been described as more tolerant of Figure 5 The forest plots for parent-child relationship. Figure 6 The forest plots for couple relationship satisfaction. --- BMJ Global Health diversity and more nurturing towards younger children than children of heterosexual parents. 15 Based the results of narrative synthesis, children who lived in sexual minority parent families had a lower expected likelihood of developing as heterosexual, compared with the children who lived in heterosexual parent families. 20 29 41 Moreover, the level of gender stereotype is moulded by the parent-related genderrole information. 41 For example, the son of the GFF was perceived as less masculine. 41 There may be less gender stereotyping in minority parent families, and this effect may be positive. Regardless of family type, if parents hold more liberal attitudes towards gender-related behaviour, their children hold more flexible attitudes towards gender. 29 Children of sexual minority parents receive different gender-related information and they will likely develop different ideas about gender identity or sexual orientation than their counterparts in heterosexual families. The impact of sexual minority parents' attitudes toward gender on their children might be uniquely positive. Exploration of gender identity and sexuality may actually enhance children's ability to succeed and thrive in a range of contexts. --- Implications for policy and practice Our findings indicated that children of sexual minority couples are not at a disadvantage when compared with children of heterosexual couples. We advocate among policy-makers, communities, schools, families, and individuals for better awareness of family outcomes of sexual minorities. Despite some shared characteristics and experiences, families headed by sexual minorities are diverse. The experiences may influence parenting practices and family dynamics. 56 To address the existing key problems, several actions are necessary to improve sexual minorities' family outcomes. Based on the findings from our systematic review as well as some specific recommendations that were originally detailed in the included studies, we summarised social risk factors of poor family outcomes and would like to offer suggestions for researchers, policy-makers, and practitioners that might lead to better family outcomes for sexual minority families . --- Factors related to children's psychological adjustment A growing body of research has demonstrated a link between family process variables and children's psychological adjustment, such as parenting stress, couple satisfaction, and parenting quality. 26 28 32 35 36 Much research has shown that parenting stress and parental mental health are linked to children's psychological adjustment. 17 18 20 26 32 36 39 48 49 51 Parents under greater stress are less likely to provide supportive home environments for their children, consequently children's development may be affected. 57 Children are more likely to thrive when their parents are in good mental health. 58 Therefore, it is essential to provide psychological guidance or intervention for parents and children. The family environment may influence children's adjustment. 18 30 35 59 60 Lower couple relationship satisfaction and parents' unstable union statuses were significantly associated with assessments of child behaviour problems. 26 28 31 37 And, parenting styles were also found to be significantly associated with children's adjustment. 26 49 60 Therefore, it is essential to promote positive parenting styles and increase communication and interaction among family members. Social climate and environment may be related to children's psychological adjustment. 27 61 Figure 3 suggested that there was a decreasing trend in the difference between children of sexual minority parents and children of heterosexual parents in children's psychological adjustment over time, which may be due to an increasingly inclusive social environment and greater public awareness of sexual minorities. Homophobic stigmatisation and perceived stigma were related to more psychological problems. 33 38 Subgroup analysis by country and region showed that, sexual minority parents reported significantly fewer psychological problems than heterosexual parents in Europe, especially in the Netherlands. Indeed, the Netherlands was the first country in the world to legalise same-sex marriage. 14 In a country with a rather tolerant climate toward homosexuality, life may be easier for both children and parents in a sexual minority family. --- Factors related to children's physical health Studies have shown that children in cohabiting households or single-parent families have poorer health BMJ Global Health outcomes than children in married households. 19 37 Legal marriage confers a host of protections and advantages to the couples who marry and to their children. 62 These findings play an important role in health policy, improving child health outcomes. --- Factors related to children's educational outcomes Research suggests that adequate parenting preparation and positive parenting are important for children's educational outcomes. [63][64][65] Discrimination and stigma related to parental sexual orientation are an important risk factor. 44 Therefore, sexual-minority parents were more likely to consider racial diversity of school than heterosexual parents. 54 Parental instability has been found to be detrimental for their children's educational outcomes. 44 62 Parents should make sufficient preparation for parenting, and fully participate in the children's education process. Schools should take measures to prevent stigma, discrimination and bullying related to sexual minorities in the school setting. --- Factors related to family relationship Many new parents experienced a decline in their relationship quality across the first year of parenthood. 51 Parents who reported greater use of confrontative coping, higher levels of depression, and higher levels of relationship maintenance behaviours in pre-adoption reported a greater decline in couple relationship quality. 66 At the same time, the exposure to sexual minority stressors might have a negative influence on partner relationship satisfaction. 48 On the contrary, some participants emphasised that the experience of parenting had enhanced their relationship and brought them closer. 51 Practitioners should provide supportive interventions for diverse couples during the transition to parenthood and reduce sexual minority stressors. --- Factors related to parents' psychological adjustment Greater social support was related to lower parenting stress. 20 57 Parents with older children, more children, and children who were adopted at older ages reported more parenting stress. 57 For parenting stress, there was a significant decline over time for heterosexual parents but not for gay and lesbian parents. 67 Based on the sexual minority stress model, sexual minority parents may be stigmatised in relation to their sexual orientation. 68 Participants with better self-identity and who were more --- BMJ Global Health open about their sexual orientation reported higher selfesteem and more positive feelings overall. 57 Therefore, social workers or related professionals should provide parenting skills guidance and psychological intervention. At the same time, it is essential to raise public awareness and understanding of sexual minority parent families to reduce discrimination. 48 Factors related to social support Given the Netherlands' reputation for liberal policies, Dutch children would be more likely than children in some other areas to tell peers about their mothers' sexual identities and less likely to say they had encountered prejudice and discrimination. 56 Social support and community climate variations have an impact on the health and well-being of sexual minority parents and their children. 69 Overall, legal marriage confers a host of protections and advantages to the couples who marry and to their children, 15 such legalisation reduces the stress and stigma of homosexuality. 43 62 Limitations Despite the significance of this review study, there were a few limitations. First, our overall pooled estimates may be overestimated. Since the studies were limited to regions where same-sex relationships were legalised, most of the studies we included originated in Western Europe and North America, where the social climate for sexual minority parents is generally favourable. The next step could be to summarise the studies conducted in the regions where same-sex relationships are illegal. Second, most of the samples included in this review were gay and lesbian households. Some also considered the unique experiences and concerns of bisexual parents. For example, bisexual parents appear to be in different-gender partnerships or single, and report higher psychological distress than parents of other sexual identities. 70 Research on transgender or other sexual minority parent families remains relatively limited. 71 72 Important future directions will be exploring the experiences of bisexual-and transgenderparents and their children. Thirdly, based on the availability of the existing data, we were not able to conduct more detailed and in-depth analysis for demographic characteristics. Future reviews need to pay more attention to the demographic characteristics when summarising their findings. Fourthly, we might not have fully captured the effects of changes in legislation implementation on the outcomes. The legal situation for sexual minority parents varies from one country to another around the world. 56 Researchers need to learn more about how legal and policy contexts affect the lives of sexual minority parents and their children. 73 In addition, our analysis included four articles with a moderate risk of bias. 20 40 41 53 We should evaluate these results with caution, especially when considering the controversial study by Regnerus. 20 --- CONCLUSION This review showed that most of the family outcomes are similar between sexual minority families and heterosexual families. Research on sexual minority parents and their children has broadened our understanding of contemporary family life, and has added to our understanding of parenting and child development. One contribution of this review is the recognition that parents' sexual orientation is not, in and of itself, an important determinant of children's development. Another contribution of this review is that there are significant risk factors often associated with the sexual minority experience and family functioning, such as stigma, poor social support and parenting styles. Policy-makers, practitioners and the public must work together to improve family outcomes, regardless of sexual orientation. In the years ahead, we need to learn more about how communities around the world can support positive development among all children of sexual minority parents and how legal and policy contexts affect their lives and their children. --- Contributors YZ, HH and MW contributed equally to this paper and are joint first authors. WP and CN contributed equally to this paper and are joint last authors. YZ, HH, MW, and CN conceived and designed the study. YZ, MW and HH conducted the systematic search, screened articles, and read the full texts for eligibility. YZ and MW extracted data from the original studies. YZ and HH evaluated the studies for risk of bias. JZ and YZ performed the analyses. YZ, HH and MW wrote the first draft of the manuscript. WP and CN contributed to the interpretation of the results and critically revised the manuscript as well as monitored the review process. All authors provided advice at different stages. All authors approved the final version of the manuscript. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. CN is the guarantor. Competing interests None declared. Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research. --- Patient consent for publication Not applicable. Provenance and peer review Not commissioned; externally peer reviewed. Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information. Supplemental material This content has been supplied by the author. It has not been vetted by BMJ Publishing Group Limited and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations , and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

Background The number of children in sexual minority parent families has increased. This systematic review aims to synthesise the evidence of disparities in family outcomes between sexual minority and heterosexual families and to identify specific social risk factors of poor family outcomes. Methods We systematically searched PubMed, the Web of Science, Embase, the Cochrane Library and APA PsycNet for original studies that compared family outcomes between sexual minority and heterosexual families. Two reviewers independently selected studies and assessed the risk of bias of included studies. Narrative synthesis and meta-analysis were conducted to synthesise evidence. Results Thirty-four articles were included. The narrative synthesis results revealed several significant findings for children's gender role behaviour and gender identity/ sexual orientation outcomes. Overall, 16 of 34 studies were included in the meta-analyses. The quantitative synthesis results suggested that sexual minority families may perform better in children's psychological adjustment and parent-child relationship than heterosexual families (standardised mean difference (SMD) -0.13, 95% CI -0.20 to -0.05; SMD 0.13, 95% CI 0.06 to 0.20), but not couple relationship satisfaction (SMD 0.26, 95% CI -0.13 to 0.64), parental mental health (SMD 0.00, 95% CI -0.16 to 0.16), parenting stress (SMD 0.01, 95% CI -0.20 to 0.22) or family functioning (SMD 0.18, 95% CI -0.11 to 0.46). Conclusion Most of the family outcomes are similar between sexual minority and heterosexual families, and sexual minority families have even better outcomes in some domains. Relevant social risk factors of poor family outcomes included stigma and discrimination, poor social support and marital status, etc. The next step is to integrate multiple aspects of support and multilevel interventions to reduce the adverse effects on family outcomes with a long-term goal of influencing policy and law making for better services to individuals, families, communities and schools.

Introduction Individuals from socioeconomically disadvantaged backgrounds, on average, demonstrate worse health behaviors, 1 health outcomes, 2 and die earlier 3 than their wealthier, more educated, and employed peers. One proposed mechanism to explain these health disparities is stress. 3 Greater stress contributes to several unhealthy behaviors for those with low socioeconomic status , 4 with low SES being indirectly related to unhealthy behaviors through perceived stress. 5 Thus, low SES contributes to high stress, and both low SES itself and high stress put individuals at higher risk for unhealthy behaviors. Identifying modifiable protective factors may inform stress management interventions for low SES individuals. Social support may be a protective factor to offset stress, possibly contributing to decreases in unhealthy behaviors among socioeconomically disadvantaged individuals. [6][7][8] One limitation of current research is that social support has not been studied more granularly to understand how different types may help to offset stress for socioeconomically disadvantaged individuals. 9 Types of social support include affectionate, emotional/ informational, tangible, and positive social interaction. 10 See definitions and example survey questions assessing the four social support types in Table 1. Our sample provided an opportunity to study different types of social support among a sample of mostly low SES and racial minority individuals, for whom stress may be particularly harmful to health. 11 To replicate prior research in a novel sample , we examined whether lower SES would be associated with higher stress. To extend prior research, we tested the novel hypothesis that social support would mitigate effects of SES on stress. We explored different types of social support to increase specificity of findings. --- Method --- --- Procedures A research assistant met with patients in a private room and obtained verbal consent for screening. Those who were eligible and interested provided written, informed consent. Participants completed an audio computer-assisted self-interview, allowing low-literacy individual to participate, in a private room. Participants viewed an intervention video as part of the RCT and were reimbursed $30. All procedures were approved by participating institutional review boards. --- Measures --- Demographic information- We obtained information on participant demographics; a race dummy variable was created: white, black, and other. --- Socioeconomic status -SES was a latent factor indicated by these categorical variables: annual family income, highest grade completed in school , and current employment status. --- 2.3.3 Perceived stress-Three items from the Perceived Stress Scale 7 assessed stress in the last month: "How often have you felt difficulties were piling up so high that you could not overcome them?"; "How often have you felt that you were unable to control the important things in your life?"; and "How often have you felt that things were going your way?". Participants rated each item 0 to 4 ; higher scores indicate higher stress levels . The PSS has been reliable and valid with urban populations; 13,14 internal consistency was adequate in this study . Items served as indicators of a latent stress construct. --- Social support-The 19-item Medical Outcomes Study-Social Support survey 10 assessed perceived support. Participants were asked, "How often is each of the following types of support available to you if you need it?" with responses from 1 to 5 . The scale included four types of support: emotional / informational , tangible , affectionate , and positive social interaction . We summed each type and types served as indicators for a latent social support factor. Following recommendations, each type score was transformed on a 0-100 scale 10 ; higher values indicated higher support. This measure is reliable in racial minority samples 15 and also in our sample . --- Data Management and Analysis Data were analyzed using structural equation modeling in Mplus. 16 We controlled for age, race, and sex in all models. 17 Model fit was assessed using the comparative fit index , the Tucker-Lewis index , and the root-mean-square error of approximation . Indicators of acceptable fit are CFI > .90, TLI > .90, and RMSEA < .06. 18,19 To test moderation, we created latent interaction terms using the Mplus function XWITH. Herein, we report standardized coefficients. Responses were missing for 0.39% to 3.54% of participants per variable. The variable with the most missing responses was income; all other variables were missing less than 0.40% of cases. We used multiple imputation to replace missing values, a widely-accepted method for dealing with missing data. 20 --- Results --- Descriptive Statistics Participants were 508 individuals . Participants reported feeling moderately stressed. Their reported levels of social support were similar to other samples. 10 See Table 2 for sample characteristics. --- Measurement Model We tested the fit of measurement models including three latent constructs and correlations among all constructs. To identify latent constructs, variance was fixed at 1. 21 With this method, the sample mean of each latent construct is 0 and each 1-unit change in a latent construct can be interpreted as a change of 1 standard deviation . We allowed correlations between residuals of the highly-correlated social support types affection and positive social interaction 22 and between stress items that were not reverse scored. The measurement model fit the data well, χ 2 = 34.54, CFI = 0.99, TLI = 0.99, RMSEA = 0.02. All factor loadings were positive and significant, ps < .001. --- Structural Model and Direct Associations We tested a structural model including a latent social support construct, which included all four social support types. Overall fit indices were unavailable because latent interaction terms were included in the model. 23 However, the structural model in Figure 1 fit well prior to the addition of interaction terms, χ 2 = 82.88, CFI = 0.97, TLI = 0.95, RMSEA = 0.03, and accounted for 32% of the variance in stress. Prior to the addition of interaction terms, individuals with lower SES, β = -0.27 , p < . 01, and lower overall social support, β = -0.47 , p < .001, reported higher stress. In separate models, higher stress was also associated with lower social support of each type: affectionate, β = -0.37 , p < .001, tangible, β = -0.40 , p < .001, positive social interaction, β = -0.33 , p < .001, and emotional/informational, β = -0.41 , p < . 001. Individuals with higher SES also reported higher overall social support, β = 0.12 , p < .05. SES was not directly related to affectionate support, β = 0.02 , p = .67, but was positively related to tangible support, β = 0.11 , p < .05, positive social interaction, β = 0.11 p < .05, and emotional/informational support, β = 0.15 p < .01. --- Social Support as a Hypothesized Protective Factor, Moderating Associations between SES and Stress After adding interaction terms, overall social support moderated the association between SES and stress, β = 0.19 , p < .05. Although there was a strong, negative SES-stress association for those one SD below the mean in social support, β = -0.55 , p < .001, this association disappeared for those one SD above the mean, β = -0.13 , p = .32. This pattern of results, whereby social support reduced stress particularly for those with low SES, can be seen in Figure 2a. We also investigated social support types separately as moderators of the association between SES and stress. These models showed that three types of social support offset the negative impact of SES on stress, including positive social interaction, β = 0.19 , p < . 01, affectionate support, β = 0.17 , p = .05, and tangible support, β = 0.16 , p < . 05. Emotional/informational social support was non-significant, β = 0.12 , p = .26. Next, we included all significant interactions in the same model, systematically pruning the model for parsimony. We found affectionate support to have the weakest effect on the SESstress association, β = -0.06 , p = .69, followed by tangible support, β = 0.06 , p = .47. Following the removal of these non-significant interaction terms, positive social interaction remained a significant moderator of the SES-stress association, β = 0.20 , p = .01, indicating that, for those with below average positive social interaction, lower SES was associated with higher stress. Although there was a strong, negative SES-stress association for those one SD below the mean in positive social interaction, β = -0.57 , p < .001, this association disappeared for those one SD above the mean, β = -0.12 , p = .32. Thus, as seen in Figure 2b, at lower levels of SES, those with higher levels of positive social interaction reported less stress than those with lower levels of positive social interaction. When considering all types simultaneously, positive social interaction showed evidence of playing the most important role in offsetting the impact of SES on stress. --- Discussion We utilized data from a sample largely comprised of racial minority, socioeconomically disadvantaged individuals at a public clinic to examine one protective factor to better understand associations between SES and stress. Lower SES was associated with higher stress, beyond age, sex, and race, consistent with prior literature. 24 People with higher social support reported lower stress, consistent with the stress-buffering, or protective, effects of social support. 7 Consistent with hypotheses and one previous study, overall social support mitigated the negative impact of low SES on stress. 25 A novel contribution of this study involved the investigation of a more nuanced typology of social support to increase the specificity of our findings. Emotional/informational support had the strongest direct associations with stress in our socioeconomically disadvantaged sample, meaning that higher levels of advice giving, problem solving, and emotional validation were directly related to lower stress. However, positive social interaction emerged as the most important type of social support in offsetting the impact of SES on stress, particularly for those who were very socioeconomically disadvantaged. Positive social interaction may be especially helpful in stress reduction for these individuals because it allows them to experience positive affect in a way that tangible support would not and in a way distinct from the general, nonspecific positive affect that affectionate support offers. It may also reduce stress for the very socioeconomically disadvantaged through social comparison with others, prompting cognitive reappraisal. 26 Our results suggest a process of resilience, in which positive social interaction may be a protective factor that offsets typically expected higher levels of stress among socioeconomically disadvantaged and/or racial minority individuals. 27 Resilience is a not a trait; rather, it is a dynamic process that can be represented by adaptation or posttraumatic growth among a population from whom there is evidence of higher likelihood of a negative trajectory due to adversity. 28 Adaptation or posttraumatic growth can be positive traits, developmental milestones, behaviors, or health outcomes. 29 Specifically, these results support the protective model of resilience, which posits that, despite adversity , a negative outcome can be mitigated by a protective factor . 30,31 Resilience research has begun to influence and improve health interventions for disadvantaged populations, with more calls for resilience research on individuals who are at high risk for health problems. 27,30,32 Because SES can be difficult to change, resilience research can help researchers learn from these individuals who may have protective factors to cope with adversity as well as-or better than-higher SES peers. Other research might simulate our methods by investigating hypothesized protective factors as moderators of traditionally negative health outcome pathways for populations with adversity. Because stress is linked to unhealthy behaviors and poor health outcomes, stress management is vital to disease prevention for socioeconomically disadvantaged individuals. Stress management interventions with socioeconomically disadvantaged individuals might seek to increase positive social interaction, specifically, to allay distress, improve health behaviors, 33 and delay premature morbidity and mortality. Continued investigation might explore whether positive social interaction can be generalized as a protective factor against stress for other populations. By identifying positive social interaction as particularly important for low-SES individuals, our analyses showcase the value of investigating types of social support. By doing so, we can better identify specific targets for intervention. Positive social interaction should be viewed as only one of many approaches to preventing unhealthy behaviors, morbidity, and early mortality among socioeconomically disadvantaged populations. 27,34,35 --- Strengths and Limitations Our sample included socioeconomically disadvantaged, primarily Black and African-American adults-an important sample in which to study stress due to higher stress levels that originate from socioeconomic hardship and racial discrimination. 17,36 However, participants in our study came from one STD clinic, possibly limiting generalizability. A further sample limitation is that we did not have specific information about ethnicity, national origin, or immigrant status for participants; thus, results might be different for those different subgroups. There may be something about the population in this sample that enhances responses to positive social interaction and other populations might respond better to other social support types. Our study benefitted from the use of an advanced statistical approach , which allowed us to account for measurement error and intercorrelations among variables. However, the data were cross-sectional, limiting our ability to assess causal relationships . A longitudinal study assessing relations among SES, stress, and types of social support would clarify temporal associations. Although we were able to investigate types of social support, improving on prior research, limitations of secondary data prevented us from considering other protective factors against stress . It would be helpful for future research to also specify the therapeutic agent of positive social interaction, possibly including relaxation, distraction, or humor. --- Conclusions Overall social support was protective against stress for low SES individuals, and one specific type-positive social interaction-played the strongest role in mitigating the negative effect of very low SES on stress. Whereas the lowest SES individuals without high support reported more stress than high SES peers, the lowest SES with high positive social interaction reported similar levels of stress as their lower-risk, higher SES peers. Facilitating positive social interaction appears to be an important and feasible stress reduction intervention target for low-SES and/or racial minority individuals. Results of structural equation model testlng associations between SES, social support and stress. *p < 0.05. ** < 0.000. Age, race, and sex were covariates. SES, stress, and social support are latent factors. For the Perceived Stress Scale , the second item had a low factor loading in this sample and was dropped. Soclal support moderates the association between socloeconomlc status and stress. Overall social support as a latent construct moderates the association between SES and stress, ß = 0.19 , p < 0.05. Positive social interaction as a moderator of the association between SES and stress, ß = 0.20 , p < 0.01. The figure depicts the association between SES and stress for those with below average SD below the mean) and above overage levels of social support and positive social interaction. as well as 95% confidence intervals, Age. sex, and race included as covariates. --- --- Social support type --- Definition Example item Positive Social Interaction Uplifting encounters with others, perhaps over shared interests

Background-Stress is associated with unhealthy behaviors and premature morbidity and mortality, especially among those of low socioeconomic status (SES). Clarifying the roles of stress-related risk and protective factors can guide interventions designed to reduce stress and improve health among socioeconomically disadvantaged populations.Replicate prior research showing that lower SES is associated with higher stress in a predominantly racial minority, socioeconomically disadvantaged sample, and (2) test the hypothesis that different types of social support (a protective factor) mitigate the deleterious effects of SES on self-reported perceived stress. Methods-Low-income patients (N = 508, 54% male, 68% Black, M age = 28) from a publiclyfunded clinic completed self-report measures as part of a larger trial. Structural equation modeling tested the hypothesized associations among SES, social support, and stress. Results-Individuals of lower SES, β = -0.27 (0.08), p < .01, and lower overall social support, β = -0.47 (0.05), p < .001, reported higher stress. Social support moderated associations between SES and stress, with participants with lower SES benefitting the most from social support. Positive social interaction was the strongest moderator, β = 0.20 (0.08), p = .01.

P lague is a severe zoonotic disease caused by Yersinia pestis. An average of 11 cases per year have occurred in the United States since 1976 ; most cases in recent decades have been found in New Mexico . The pathogen cycles between rodents and fl eas, and humans most frequently become infected through fl ea bites . Living near habitats that support the sylvatic cycle is a major risk factor associated with human disease in New Mexico . However, even in areas defi ned as high risk on the basis of environmental characteristics , plague is rare, and the area defi ned as highly suitable for plague represents a large geographic region . Poor socioeconomic status has been anecdotally associated with human plague cases, but this factor has rarely been investigated quantitatively in the United States, and such information has not been systematically collected for cases of Y. pestis infection. Identifying human socioeconomic or behavioral risk factors may enable a more refi ned defi nition of the highest risk populations for more targeted control efforts. To evaluate possible associations between socioeconomic factors and plague risk, we used US Census Bureau decennial data to compare census block groups in which human plague cases occurred and did not occur in New Mexico during 1976-2007. --- The Study We restricted our analyses to peridomestic cases that were reported in the geographic region previously determined to be at high risk on the basis of environmental factors . Thus, we included 123 of 162 cases reported in New Mexico during the study period. We also restricted our analyses to the CBGs that had population densities within the range of densities found in plaguepositive CBGs . This restriction avoided comparing rural to urban CBGs because plague tends to occur in rural to lightly suburbanized areas. The fi nal area considered encompassed ≈17% of New Mexico and included the entirety or portions of 483 CBGs . To relate plague occurrence to socioeconomic conditions of CBGs at times when cases occurred, we divided the study period into 3 time frames centered on the most recent census. Thus, 1976-1985 cases were associated with 1980 census data, 1986-1995 cases with 1990 census data, and 1996-2007 cases with 2000 census data. Variables that described economic status and housing conditions were extracted from each census, normalized to US Census 2000 CBG boundaries , and compared between plague-positive and plague-negative CBGs by using Wilcoxon rank sum tests . For each time frame, the risks of CBGs having at least 1 case of human plague on the basis of signifi cant variables were then evaluated by using 2 × 2 tables. CBGs were divided into high and low categories by using median values of each variable as division points. Plague risk was positively associated with CBGs that had an ecotone habitat identifi ed by Eisen et al. as especially suitable for human plague cases . Therefore, to ensure that we were measuring differences in socioeconomic conditions and not the presence or absence of the ecotone habitat in CBGs, we also calculated adjusted odds ratios for each variable and time frame by using Mantel-Haenszel tests. Our results suggested temporal changes in socioeconomic factors associated with location of human plague cases. In the 1980s, plague tended to occur in CBGs with poor housing conditions and high proportions of the population living near or below the poverty line, but this second association was confounded by presence of ecotone habitat . Beginning in the 1990s, plague cases began to be associated with CBGs with higher median incomes and home values, and by the 2000s, wealthier CBGs with higher proportions of newer homes were positively associated with plague cases . High proportions of homes using wood fuel were consistently associated with positive CBGs for each time frame , which supported suggestions from previous studies that availability of harborage for rodents in and around domestic environments may increase human plague risk . A general change in the distribution of plague cases during the study period was also observed. In the 1980s, plague cases were more widely distributed across New Mexico and were particularly common in the northwestern region of McKinley and Cibola Counties . However, by the 1990s, plague cases became less common there and more focused in the north-central region of the state . We implemented the Kulldorff spatial scan statistic by using SaTScan to identify clusters of CBGs with high incidence rates of plague cases per 1,000 persons for each of the time frames to quantify these changes. Signifi cant clusters were detected only in the Santa Fe-Albuquerque region for each time frame . Changes consistent with the overall analysis in which plague occurrence shifted from poorer to wealthier CBGs and occurred in more new homes were observed when this region was considered alone. Our analysis also suggested that migration of middle to upper-class families into suitable plague habitat throughout the high-risk areas of the state was associated with locations of plague cases. For example, in the 1990s, 28 of 29 plague-positive CBGs experienced population growth between the 1980 and 1990 censuses, in contrast to 337 of 430 nonplague CBGs that experienced growth. Likewise, 17 of 20 plague-positive CBGs in the 2000s occurred where there was growth between the 1990 and 2000 censuses versus growth in only 327 of 434 nonplague CBGs. Moreover, for the census 2000 period, population growth was more likely to have occurred in CBGs that had ecotone habitat than CBGs without ecotone habitat . Migration of persons into suitable plague habitat would potentially increase the likelihood of human exposure to infected rodents and their fl eas . --- Conclusions Overall, our results confi rmed the role of living in or near habitats that support maintenance of sylvatic plague as a risk factor for human Y. pestis infection, but also suggested migration of middle to upper-class families into such areas may be contributing to changes in the locations ‡Variables that continued to be significant after controlling for presence of ecotone habitat. §Defined by the US Census Bureau as lacking >1 of the following: hot and cold piped water, a flush toilet, and a bathtub or shower. Values are not directly comparable among censuses. In 1980, a housing unit was considered to have complete plumbing only if plumbing fixtures were for exclusive for the residents of that unit. In 1990, the requirement of exclusive use was dropped. of plague cases. The north-central region of New Mexico surrounding Santa Fe and Albuquerque was identifi ed as a persistent focus of human plague cases, and it appears to be the predominate region for current cases. It is unclear why cases have become rare in the northwestern region of New Mexico because socioeconomic conditions have not generally improved there. However, the high numbers of cases observed there in the 1980s were associated with favorable climatic conditions for plague . Although we detected changes in the socioeconomic indictors associated with the locations of plague-positive CBGs, what shifting individual behavioral factors may have accompanied these trends are unknown. In particular, we were unable to determine whether the socioeconomic status of individual plague case-patients has changed from poor to middle or upper-income classes. Future investigations are needed to characterize the characteristics and behaviors of persons to verify and fully understand the changing factors associated with plague cases in New Mexico.

Socioeconomic indicators associated with temporal changes in the distribution of human plague cases in New Mexico were investigated for 1976-2007. In the 1980s, cases were more likely in census block groups with poor housing conditions, but by the 2000s, cases were associated with affl uent areas concentrated in the Santa Fe-Albuquerque region.

Background Pregnant teenagers are often vulnerable, face unique challenges in seeking health care and their pregnancies are at increased risk of complications and poor outcomes [1,9]. Women aged 15-19 years have twice the risk of dying from pregnancy-related causes and a 50% higher risk of stillbirth compared to women aged 20-29 years [1,29]. There are several factors that increase the risk of poor outcomes for pregnant teenagers: low socio-economic status and social stigma [4,19]; lack of social support [11]; poor antenatal attendance [1,18]; smoking and substance abuse [14,18]; and biological factors including inadequate maternal weight gain [17]; and biological immaturity [24]. Pregnant teenagers experience distinct disadvantages and these have a substantial impact on their health and that of their baby [1,18]. Studies demonstrate that antenatal care improves pregnancy outcomes amongst all pregnant women, especially --- Open Access *Correspondence: [email protected] 1 Primary and Community Care, Ballarat Health Services, Ballarat, Victoria 3350, Australia Full list of author information is available at the end of the article adolescents [28,29], and evidence supports the importance of care early in pregnancy [29]. The Australian Government's "Clinical Practice Guidelines: Pregnancy Care" [7] recommend that the first antenatal visit occur within the first 10 weeks of pregnancy. Commencing regular antenatal care in the first trimester is associated with better maternal health in pregnancy, fewer interventions in late pregnancy and positive child health outcomes [1,2]. Pregnant teenagers often have inadequate antenatal care as they tend to register for care at a later gestation and attend fewer appointments than women aged 20-24, or receive no antenatal care [1]. Delays in seeking care for complications during pregnancy, increase the risk of maternal and foetal morbidity and mortality [22]. Research has shown that young women's perceptions and expectations of service providers underlie many of the barriers to accessing care [16]. Models of antenatal care need to recognise and be responsive to the disparate needs of pregnant teenagers [18,29]. Overall, births to teenage women have been declining, however they are over-represented in in rural communities and socially disadvantaged areas [11]. The latest Organization for Economic Co-operation and Development report, based on 2015 data, shows that while Australia's birth rate for 15-19 year old women was similar to the OECD average [21], pregnant teenage women were more likely to live in regional areas [6]. Birth rates for teenage women are not consistent across the Australian population and increase with geographical remoteness [1]. Pregnant teenagers living in rural and regional areas experience greater health inequities [1] compared with their urban counterparts and face unique challenges in accessing and engaging in antenatal care. Understanding young women's views and experiences of pregnancy and motherhood is important to ensure interventions to improve access and engagement with antenatal care meet young women's needs [8,29]. However, the literature on young women's experiences of maternity care is limited, particularly for those living in rural and regional areas. The aim of our study was to explore teenage women's experiences of engaging in pregnancy care in rural and regional Victoria, Australia. --- Method This qualitative study was conducted at one regional and two rural health services in western Victoria, Australia. This study involved semi-structured, face-to-face interviews guided by naturalistic inquiry [15], applying an inductive approach to analysis. --- --- Data collection Individual semi-structured interviews were employed and questions were pre-tested with three women and modified based on feedback prior to study commencement. Interviews were audiotaped and professionally transcribed, field notes were also taken. All the interviews were conducted by an experienced investigator who was not involved in clinical care. The interviewer is a female registered nurse and midwife with a PhD, who holds a co-joint university and health service appointment and whose research interests include women's experience of maternity care. The interviews were conducted at a mutually convenient locations which included the clinic and participants' homes. --- Data analysis Transcripts were analysed by two researchers independently using thematic analysis guided by Braun and Clarke's approach [5]. The investigator assisting with analysis is a female registered physiotherapist, who holds a co-joint university and health service appointment and whose research interests include health services research and research translation. An inductive approach was used with the coded categories derived directly from the transcript data [12]. Coding proceeded iteratively and related comments were grouped into themes. Approaching saturation of themes, interpretations of the data were discussed between investigators. Adaptations to themes, until stable themes were agreed, were made by consensus and involvement of a third coder was not required. Transcripts were not returned for member-checking. Trustworthiness of the findings was enhanced through the following means: each interview was transcribed verbatim allowing the reader to determine the appropriateness of the interpretation provided by the researcher; and the analytical procedure of interpretative descriptive coding of each transcript through regular consultation between investigators, ensured that the findings were justified by the data. --- Ethical considerations Women aged less than 18 years of age were deemed competent to consent if they meet the Gillick competency and the Fraser guidelines [20]. Prior to each interview, written consent was obtained. Ethics approval for the study was obtained from Ballarat Health Services and St John of God Human Research Ethics Committee. --- Results Sixteen women were purposively selected based on the selection criteria. All of the women approached agreed to participate and there were no drop outs. All participants were English speaking, Caucasian and aged between 16 and 19 years. Twelve participants lived in a regional centre and four participants in rural towns. Two participants were attending school. Four of the participants were having their second child, two of which had previous pregnancy related complications. Four participants had their partners participate in the interview, one included her mother. The interviews were on average 14.5 min, with a range of 9.4 min to 22.5 min. Four themes , emerged: perceived value of pregnancy care; interactions with the maternity service; provision of woman-centred care; and their support systems during their pregnancy. --- Valuing pregnancy care The participants all recognised the importance of antenatal care and identified concern for the wellbeing and health of their baby as a primary motivation for attending antenatal care. Many of the women emphasised the need to ensure that their baby's interests were served above their own, as highlighted by one woman's comment. --- I don't really say no to it because it's more so not for me it's for the baby's health. Yeah, I don't really have a right to say no . While all of the women were motivated to attend antenatal care, some of the women reported only recognising the value of antenatal care following complications in a previous pregnancy. One of the women talked about the lack of awareness and motivation to attend antenatal care during her first pregnancy in which her baby died. … But with losing my first and then the becoming pregnant so quickly after that one, I was like well I need to knuckle down and go more often. These women talked about a lack of understanding of the relevance of antenatal care to their age group and a perception that teenagers are not susceptible to pregnancyrelated complications. Participants commented that teenage women may be reluctant to attend antenatal clinics because they perceived care providers as being authoritarian and they disliked being told what to do. The women also suggested that teenage women may not engage with antenatal care due to fear or denial. Some of the women commented that at times they had feeling self-conscious and uncomfortable if they perceived people were staring at them or singling them out. Feelings of shame and stigma associated with pregnancy can delay teenagers seeking antenatal care and getting important screening and education early in pregnancy. overwhelming themselves and increasing their anxiety. Some of the women avoided childbirth education because they found it scary and would rather cope with events as they arise. These women suggested that providing chunks of information relevant to their stage may make it easier for women to digest and cope. --- … sometimes you feel like people I try not to -but I try to get a little bit of information, but not too much; not enough to like freak myself out, and not enough for me to be like oh -and like, yeah, it's just doing my head in and stuff. Several of the participants identified the influence of their family and friends on their decision to participate. One woman's partner described how family support could influence antenatal attendance. "Also like I'm speaking on the partner's behalf, sometimes a partner might decide that they're too tired from work and that sort of thing because there's been a couple of appointments where I haven't been able to make it to … I feel as though some partners might say you're fine, there's no need to go, the baby's kicking. Women reported finding their antenatal appointments interesting and they valued the ability to follow their baby's milestones. Several women commented that hearing their baby's heartbeat motivated them to attend as they found it both reassuring and enjoyable. Some of the women identified the need to monitor their own health during pregnancy. They also valued the antenatal support in managing their pregnancy and in preparing for parenthood. --- Interactions with maternity service The young women reported valuing the respectful, welcoming demeanour of maternity service staff and trusting them to have the best interests of both their baby and the women at heart. Just the friendly staff, they've always got a smile on their face. Yeah, it's always warming to come in here. They just -they've just got that friendly sort of vibe about them so I know that I can trust them. The young women were positive about the physical environment in the maternity services, appreciating the layout that catered for children and the calm environment. One of the women suggested a simple change to the antenatal clinic waiting room would make it easier for women to engage with each other. I would just love for … the mums to be more involved. I know not everyone does want to be involved but maybe the chairs, they all sit facing one way. If they were sitting facing a different way you might be more likely to start a conversation with the lady sitting over there. The women reported a variety of geographical, financial, social, and scheduling barriers and facilitators to accessing antenatal care. None of the women had driving licenses and relied on family, friends or public transport to get to appointments. She said that it costs nothing, and we were right to get it, and she bulk billed us. Then we got the bill for the company that she used. If I knew that it was going to charge us, even if it was going to charge us a little bit, I would have, that would have been fine. But $135, we just couldn't afford it at the time. " The women identified choices for appointment times and the option to manage appointments via text and fit in with their school schedule as facilitators to attending antenatal care. --- I usually get an appointment in the morning so then I'm out of here by the time, lunch time at school, so I can get back to school but I think they're pretty good. --- Woman-centred care Most of the women had a sense of individualized care and felt listened to and comfortable asking questions. The young women valued being given choices and being included in the decision-making around their care. I'm always let known of the things that they're going to do and the decisions they're going to make, and they're always like is there anything that you want to input? Yeah, I definitely feel very included in what goes on with the care here. Health professionals' ability to communicate in a nonjudgmental and non-threatening manner was important to the women. One young woman compared her experience with her current midwife, who was dedicated to working with young mums, to her previous antenatal care. Her comments highlighted that the delivery and content of information is key to engaging with young women during their pregnancy. --- I don't know it's just the vibe and she's [Young Mum's midwife] always got a smile and is always polite. She doesn't come across creepy or anything. About two and a half years ago when I had my first one I had this old lady that was my midwife for --- like two days. She brought out these -it was like a little cushion diagram of the vagina and how the baby comes out and she scared the shit out of me. It's just a bit more comfortable with [Young Mum's midwife] than the other one. The midwives' communication skills contributed to the young women's perceptions of an equal power relationship. The women appreciated not being pressured in to making decisions and the ability of staff to value their questions. Many women found the use of texting invaluable, allowing them to get timely responses and reassurance when they needed it. --- … They don't sit … and act like they've got more knowledge. I mean they clearly do, but they sit there and communicate with you and they speak in way that you're able to understand instead of just reading what they would have read from a textbook to you. All of the young women valued knowing the midwives and doctors and that the care was consistent. --- Support systems Many of the young women came from fractured families and had experienced social isolation that impacted on their confidence to attend childbirth education and maternal and child health centres as they felt uncomfortable in group situations. A desire for connections with other young mothers was common. --- … after I had my son and you go to see the maternal child health nurse and they try and get you to go to a mothers' group, I chose not to because I was scared about going there and being the youngest person there, and everyone being 30 and having a nice car and owning a house, and I was the odd one out. So, I didn't go. I wished that I would have had some more support system I guess … Some of the women and their partners commented on their diminished social life and reliance on each other. One of the partners talked about his isolation from his family due to cultural and generational differences. He highlighted the value talking to another young partners for support. --- It'd be good … for another young guy like me to be able to talk to them and say look how have you been able to cope? Have you found it stressful, have you adjusted yet? Just being able to talk like that. All the young women felt that meeting with other young mothers would be beneficial to help them engage with antenatal care. All participants had some form of support from family, friends, health professionals, support or support groups. Schools provided another form of assistance, providing information and enabling the young women to continue with their education. … the school has been amazing. I couldn't thank them enough for the support they've given me. They're pretty much willing to do anything they can to help me finish school. --- Discussion Participants identified challenges and motivations for attending antenatal care that related to valuing pregnancy care, interactions with the maternity service, womencentred care, and support systems. Similar to a United States study investigating the motivators and barriers to antenatal care in pregnant teenagers, our study also found 'concern for the health of their baby' a strong motivating factors for antenatal clinic attendance. The women in our study, also identified additional benefits of antenatal care, such as enhanced knowledge, reassurance, validation and social support. A study by Michels found young women were motivated to engage in antenatal care because they valued the support in managing their pregnancy. Some of the young women interviewed had not attended antenatal care for a previous pregnancy and had experienced adverse outcomes. They reported that their lack of engagement with antenatal care was due to several factors, including fear, denial, and a perception that antenatal care was not relevant for their age group. A French study exploring the relationship between anxiety and coping strategies during pregnancy found that anxiety in women during pregnancy was associated with inappropriate coping strategies, such as denial of reality and disengagement [10]. These findings may explain some women's ambivalence towards antenatal care and highlight the potential to engage teenage women in care during pregnancy by recognizing and allaying issues of fear and denial. Only a small number of teenage women in this study considered the value of antenatal care in terms of their own health. Pregnant teenagers face a number of health and social risks, such as anaemia, pre-eclampsia [31], stigma and violence by partners, parents and peers [32]. Little is known about the value teenage women place on antenatal care in terms of their own health. Further research is required in this area and there may be an opportunity to promote the value of antenatal care for maternal benefit. All of the young women in this study were from rural and regional areas and faced challenges accessing antenatal care. Many of the young women found the use of texting invaluable, allowing them to schedule or make changes to appointments and receive timely responses and reassurance. The flexibility of appointments was important as none of the young women had driving licenses and relied on family, friends or public transport. Pregnant teenagers are more likely to birth in a public facility and to live in less economically advantaged areas than older women [23]. Enabling pregnant teenagers to obtain care or information quickly and easily, for example through texting, may improve engagement and provide a mechanism for opportunistic education. The young women valued individualised care, being offered choices, and being included in the decisionmaking around their care. Women-centred care takes into account the women's context and social determinants of health, and partners with women in their care [3]. A study on women's perspective of antenatal care in Canada reported similar findings, with women preferring care providers who readily offered information, treated them as equals, and took the time to explain options thoroughly [26]. Feeling valued is a key to young women's connection and engagement in antenatal care during pregnancy and critical in building their trust in health professionals. The pregnant teenagers viewed one-to-one contact and follow-up by the same midwife as beneficial. The women that attended a dedicated young mum's clinic valued the individualised care and the health professionals' nonjudgmental and non-threatening communication. The young women were grateful for staff that took the time to get to know them and they were able to discern when the care was not genuine. Continuity of carer in the maternity care has been strongly recommended and encouraged in Australia and worldwide [30]. The task that exists in rural and regional environments is providing a women-centred model of care, balanced with providing an accessible, sustainable service. The young women and their partners spoke of diminishing social networks during pregnancy and limited support from family and friends. These findings are consistent with a Canadian study that found that teenage women had significantly lower social support than was optimal and lower than enjoyed by older women [13]. Social support, including emotional, social, and tangible help, has been identified as an important protective factor against stress for women in the maternal role [13]. The teenage women were positive about the support they received from their schools to continue with their education. The support of schools for pregnant teenagers is critical in enabling their continued school progress and long-term educational and career success [25]. Healthcare providers are encouraged to assess pregnant adolescents for feelings of social isolation and support their health and well-being during pregnancy, birth and in early parenthood. The limitations of the current study include acknowledgement that the experiences of the young women included were those of pregnant teenagers who attended antenatal care. However, some of these women had not engaged in antenatal care with previous pregnancies and were able to provide retrospective accounts of their experiences of antenatal care and the barriers they faced. None of the participants in this project were from remote or very remote areas and the geographical remoteness in Victoria is not comparable to those in other Australian states and territories, thus these findings may not be generalisable to teenage women in other rural and remote areas. Additionally, only English speaking, Caucasian women were interviewed and their experience is likely to be different to other population groups e.g., indigenous teenage mothers are substantially higher than non-indigenous teenage mothers [2]. Overall, the teenage women in this study were engaged with their antenatal care and positive about their maternity services. This is an important finding as it reflects a trust in the maternity services and healthcare professionals and support for self-efficacy in making decisions about pregnancy care. --- Conclusion Maternity services and health professionals that provide women-centred care, support through pregnancy and afterwards, are flexible and adaptable to the unique needs of teenage women, encourage antenatal attendance for both the baby and the mother's health, will all assist young women engage in antenatal care. These findings have informed the development of best practice guideline for teenage pregnancy care in a regional service. Maternity health professionals play a crucial role in providing pregnant adolescents with positive and encouraging perspectives of pregnancy and motherhood. --- --- Abbreviations OECD: Organization for Economic Co-operation and Development. --- --- Additional file 1. Authors' contributions NF and AWS developed the original idea for the study and funding application, along with the other authors. CN and AWS analysed the data and interpretation of the data was performed by AM, CR, NF, JL, CN and VV, and AWS. All authors read and approved the final manuscript. --- --- --- Competing interests The authors declare they have no conflict of interest. Wong Shee et al. BMC Pregnancy and Childbirth 21:693 • 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: Pregnant teenagers in rural and regional areas experience distinct disadvantages, that are not simply a function of their age, and these have a substantial impact on their health and that of their baby. Studies demonstrate that antenatal care improves pregnancy outcomes amongst pregnant women, especially adolescents. Understanding teenager's views and experiences of pregnancy and motherhood is important to ensure antenatal care meets young women's needs. This study explored teenage women's experiences and perceptions of barriers and facilitators to engaging in pregnancy care in rural and regional Victoria, Australia. Methods: Between February-October 2017, pregnant women aged ≤19 years were purposively recruited from one regional and two rural health services in Victoria. Semi-structured, face-to-face interviews guided by naturalistic inquiry were conducted and an inductive approach to analysis was applied.Four key themes emerged from the analysis of the transcripts of 16 interviews: Valuing pregnancy care, Interactions with Maternity Service, Woman-centred care, and Support systems. Teenage women primary motivation to attend care was to ensure their baby's wellbeing and lack of engagement occurred when the relevance of antenatal care was not understood. Appointment flexibility and an accessible location was important; most participants were reliant on others for transport. Continuity of carer and respectful, non-judgement communication by staff was highly valued. Many young women had fractured families with pregnancy diminishing their social world, yet having a baby gave them purpose in their lives.Maternity services and health professionals that provide flexible, adaptable women-centred care and support through pregnancy and early motherhood will assist young women's engagement in antenatal care.

Background Promoting oral health of adolescents through health promoting schools has been prioritized by the World Health Organization for the improvement of oral health globally [1]. Adolescents are in particular need for oral health promoting programs [2]. Poor oral hygiene in terms of increasing accumulation of plaque and calculus with increasing age have been reported among children and adolescents in both developed-and developing countries [2,3]. This situation might lead to periodontal problems later in adult life. In Tanzania, the Ministry of Health Policy guidelines have outlined periodontal problems to account for 80% of all oral diseases in the population [4]. Poor oral hygiene in the general Tanzanian population aged 15 years and above is very common with prevalence of gingivitis ranging from 80-90% [5,6]. According to Kerosuo et al [7], a substantial proportion of school students aged 12-18 years and, girls less seriously than boys, presents with sign of gingivitis. In contrast, Kikwilu [8] found a low prevalence of gingivitis and good oral hygiene status among school children in Morogoro. Appropriate use of inter-dental measures, fluorides, dental services and tooth brushing, restricted frequency sugar intake and avoidance of tobacco consumption contributes to the prevention and control of oral diseases [1]. A recently published national report considering 13-15 years old Tanzanian adolescents showed that about 90% reported daily tooth brushing, whereas the prevalence of adolescents confirming daily intake of sugar products remained at a moderate level [9,10]. Studies have yielded lifetime prevalence rates of tobacco use, ranging from 0.4% to 12% in female-and male adolescents, respectively [9]. Other studies from East Africa focusing adolescents and young adults have reported similar results with respect to oral health enhancing-and oral health detrimental behaviours [11,12]. Untreated oral diseases might lead to dental pain, dysfunction and problems with daily activities [11,13]. To date, oral health related quality of life, OHRQoL, pertaining, to the child-and adolescent populations of Sub-Saharan Africa have been given little attention in the literature. Few studies have assessed the socio-behavioural distribution of OHRQoL and its relationship with clinical indicators of oral hygiene status has yet to be investigated in younger age groups. Instruments are now available for measuring OHRQoL in school-aged children. The Child-OIDP was developed and tested among Thai schoolchildren aged 11-12 yr [14]. It has been found to be a reliable and valid instrument when applied for instance to children and adolescents in Tanzania, France and UK [11,13,15,16]. Socio-economic status has a profound effect on healthand health behaviours [17]. However, inequality in health and oral health has not been focused to the same extent in adolescents as in adults [18,19]. Evidently, the lower the material standard of living as measured by income, social class and social network-and support, the worse the level of oral health, whatever the measures used, being they clinical or self-reported oral health indicators [17]. The World Health Organization International Collaborative studies , have demonstrated a social gradient in adolescents' caries experience and periodontal status across high-and low income countries and various oral health care service systems [20]. Moreover, social disparities in adolescents' oral health behaviours have been demonstrated in developing countries and elsewhere, with oral health detrimental behaviours being most common in subjects of lower socio-economic status [20]. In Tanzania, previous studies have not given any clear-cut conclusion regarding the relationship between social status and indicators for oral health among children and adolescents. Owing to scarce resources within the Tanzanian health care sector, it is important to select preventive strategies requiring few resources. It is evident, that oral health interventions through school can improve oral health and oral health related behaviour among adolescents [21]. Youth is believed to be an important period for learning and maintaining health related activities that may carry over into adulthood [22]. Although the Tanzanian oral health policy gives priority to children and adolescents as target groups for health care services, the oral health status and associated life style patterns of this age group are not well documented. This study uses baseline data from a cluster randomized trial, integrating oral health into a health promoting school programme , to describe patterns of oral health status and oral health behaviours among secondary school students in Arusha, northern Tanzania. The aims were; 1) to assess the frequency of poor oral hygiene status and oral impacts on daily performances, OIDP, by socio-demographic-and behavioural indicators, 2) to examine whether socio-economic and behavioural correlates of oral hygiene status and OIDP differed by gender and 3) to examine whether sociodemographic disparity in oral health outcomes was explained by oral health behaviours. It was hypothesized that, socio-demographic factors influence oral health outcomes directly or indirectly through oral health related behaviours. --- Methods --- Sampling procedure A cross sectional study was performed in Arusha, northern Tanzania, focusing secondary school students. In this study area, fluoride concentration in drinking water has been estimated to amount to 3.6 mg fluoride/l drinking water and dental fluorosis is recognized to be endemic [23]. A total of 59 public secondary schools were listed of which 31 schools fulfilled the inclusion criteria of being public schools and having student enrolment of more than 200 students. A sample size of 2000 students was estimated to be satisfactory; assuming that the percentage of students expected to have oral impacts on daily performance was 30%, using an absolute precision of 0.02 and 95% confidence interval [24]. A one staged stratified cluster design was utilized with secondary school as the primary sampling unit. Secondary schools in the Arusha municipality, Arusha and Meru council were stratified into rural and urban schools, the latter being those within 10 km from Arusha town centre. A total of 11 urban schools and 20 rural schools constituted the sampling frame. In the first stage, 10 schools were selected by simple random sampling from rural and urban schools using an unequal sampling fraction. All available students in Form I and II in the selected urban and rural schools were invited to participate in the study. Totals of 1163 and 1249 students in urban and rural schools were subsequently included into the study. The total participation rate was 80.7%. This selection procedure provided a non-self weighted sample of secondary school students in the area. A total of 1077 out of 1331 participants enrolled in a random sub sample of 10 schools consented to undergo a full mouth clinical oral examination. The clinical oral examination was conducted in three consecutive days starting from the same day as the main questionnaire survey. Reasons for non-participation in the clinical examination were mainly due to loss of identification numbers for matching purposes, absence from school on the day of examination and dental fear. Parents and students gave written informed consent to participate both in the main questionnaire survey and the clinical examination. Permission to conduct the study was granted by the school authorities and ministries of Education and Health. Ethical clearance was obtained from Muhimbili University of Health and Allied Sciences and from the National Institute for Medical Research in Tanzania. Ethical approval and research clearance were obtained from the National Committees for research Ethics in Norway and from the Norwegian Social science Data Service. --- Questionnaire The questionnaire, including 165 questions, was initially constructed in English and translated into Kiswahili, the national language and subsequently back-translated into English by independent translators qualified in English and Kiswahili [Additional file 1]. Following a pilot test, some modifications in terms of clarification and simplification of wording were done. The questionnaires were completed by students in classroom setting under supervision by trained research assistants. Socio-demographic factors were assessed in terms of age, gender, place of residence, father's and mother's education, household socio-economic status and household wealth index. Household wealth index was assessed according to a standard approach in equity analysis [25]. Durable household assets indicative of family wealth were recorded as "available and in working condition" or "not available and/or not in working condition." These assets were analyzed using principal components analysis. The first component resulting from this analysis was used to categorize households into four approximate quartiles of wealth ranging from the 1 st poorest quartile to the least poor 4 th quartile. Oral health related behaviours were assessed in terms of tooth brushing, dental attendance within the past 2 years, smoking and intake of sugar sweetened soft drinks. Sociodemographic and behavioural characteristics and the number of subjects according to categories are summarized in Table 1. Oral health related quality of life was measured using a Kiswahili version [11,13] of the eight item Child OIDP inventory . Each item was scored 0-3 where never, once or twice a month, once or twice a week, every day/nearly every day. A Child-OIDP simple count score was constructed by summing the dichotomized frequency items of affected and not affected. Internal consistency reliability of 0.85 agrees with those obtained previously in Tanzania [11,13]. The inter item correlations ranged from 0.31 to 0.55 . --- Oral clinical examination Clinical oral examination was carried out by one trained and calibrated dentist assisted by dental assistant for recording the results. Cotton rolls were used to control saliva. Plaque and calculus were assessed under field conditions with adolescents sitting in a regular chair, using natural light, probes and mouth mirror. Oral hygiene was assessed using the Simplified Oral Hygiene Index recognized to be a useful index for evaluation of dental health education in public school systems [26]. Plaque was assessed on 6 index teeth in terms of no debris present, soft debris covering more than one third of the tooth surface, soft debris covering more than one third but not more than two thirds of the tooth surface and soft debris covering more than two thirds of the tooth surface. Calculus was assessed on 6 index teeth and recorded as no calculus present, supra-gingival calculus covering not more than one third of the tooth surface, supra-gingival calculus covering more than one third but not more than two thirds of the tooth surface, supra-gingival calculus covering more than two thirds of the tooth surface. For each individual the debris-and calculus scores of each index tooth were totalled and divided by the number of teeth assessed . The oral hygiene index was constructed by summarizing the debris and calculus scores . For analysis, OHIS scores were dichotomized into 0 = good oral hygiene and 1 = poor oral hygiene . --- Statistical analysis Statistical Package for Social Sciences version 15.0 was used for data analysis. Cluster effect was adjusted for using STATA 10.0. Bivariate analyses were conducted using cross-tabulations and chi-square statistics. Multiple variable analyses were conducted using stepwise standardized logistic regression with odds ratios and 95% Confidence intervals . The logistic regression analyses were guided by Petersen's [20] risk factor model for oral diseases, suggesting that socio-environmental factors influence behavioural-and attitudinal factors, which again impact on clinical-and subjective oral health outcomes. To examine whether oral health related behaviours accounted for socio-demographic disparities in oral health status, the approach suggested by Baron and Kenny was adopted [27]. Reduction in ORs for the sociodemographic variables from step I to step II after having included oral health behaviours into the model, was interpreted as evidence of mediation of effects, given that socio-demographic characteristics varied systematically with oral health outcomes and oral health behaviours and that the relationship between oral health outcomes and oral health behaviours were statistically significant. --- Results --- Sample profiles A --- Test retest reliability Duplicate clinical examination including 25 randomly selected students gave Kappa statistics of 0.783 for calculus score and 0.669 for OHIS score [28]. --- Socio-demographic distribution of oral health related behaviours As shown in Table 1, the majority in both samples brushed their teeth on a daily basis and had not visited a dentist during the past 2 years . Only about 5% reported that they had tried cigarettes and about 50% reported intake of sugar sweetened soft drinks on a weekly basis. Pupils with highly educated mothers, younger students, females, those who belonged to the least poor wealth category and high socio-economic status, SES, families presented with intake of sugar sweetened soft drinks more frequently than their counterparts in the opposite groups [Additional file 2]. Urban residents, those having parents with high education, belonging to the least poor wealth category and having high SES family status performed regular tooth brushing and dental attendance more frequently than their counterparts in the opposite groups. Finally, older students and males reported smoking more frequently than younger students and females. --- Oral hygiene status and OIDP by socio-behavioural characteristics Totals of 44.8% had fair to poor oral hygiene whereas 81.1%, 74% and 33% had at least one tooth with plaque, calculus and bleeding, respectively. The mean OHIS score was 1.1, SD 0.8 range corresponding to a clinical level of fairly good oral hygiene. Totals of 48.2% and 50.7% reported at least one oral impact on daily performances . The most frequently reported impacts were eating problems and problems tooth cleaning , whereas the least frequently reported impacts were problems speaking and problems school work . Totals of 45.4% versus 58.0% of students having good and poor oral hygiene reported any oral impact on daily performances. Table 2 depicts the overall differences in frequency of students having poor oral hygiene and any oral impact by sociodemographic and behavioural characteristics. As shown, the frequency of oral impacts were higher in older than younger age groups, higher in subjects having father and mother with low education, higher in subjects from low SES families and in those having parents that could not afford dental care. The frequency of having any oral impacts also increased significantly in relation to decreased level of tooth brushing, decreased intake of sugar sweetened soft drinks, increased dental visiting and increased smoking experience. The frequency of having poor oral hygiene increased significantly in relation to increased age, being a male, having father with lower level of education, being in the most poor category of the household category and having parents that could not afford dental care index and in relation to not performing regular tooth brushing . All socio-demographic and behavioural variables that were statistically significantly associated with OIDP and OHIS in unadjusted analyses were included into stepwise, logistic regression models. Table 3 depicts adjusted ORs and 95% CI for OIDP by socio-demographics and oral health behaviours. Age, mother's education, father's education and family SES were entered in the first step, providing a model fit of Nagelkerke's R 2 = 0.043, Model Chi-Square 45.87 df = 6 p < 0.001. Age, parents' affording dental care and family SES were statistically significant correlates of OIDP in the first step of the model. Entering behavioural variables in the second step, improved the fit of the model to Nagelkerke's R 2 = 0.064, Model chi square = 68.81, df = 10, p < 0.001. In the final model, affording dental care and age were the only socio-demographic variables that maintained statistical significance whereas family SES did not. Older students, parents who did not afford dental care and smokers were more likely to report impacts whereas non dental attendees and those who consumed sugar sweetened soft drinks were less likely to report oral impacts as compared with their counterparts in the opposite groups. Statistically significant two way interactions were identified for gender × parents' affording dental care and gender × dental attendance . Stratified logistic regression analyses revealed that parent affording dental care , dental attendance and smoking were significant correlates of OIDP in males, whereas family SES , parents affording dental care and intake of sugar sweetened soft drinks were significant correlates of OIDP in females. As depicted in Table 4, socio-demographics in terms of age, sex, family wealth index and parents' affording dental care were entered in the first step and provided a model fit in terms of Nagelkerke's R 2 of 0.058, Model chi square 38.73, df 6, p < 0.001. All socio-demographic variables remained statistically significantly associated with OHIS in the first step of the models. Entering tooth brushing into the second step improved the model fit to Nagelkerke's R 2 0.059, Model chi square 39.30, df 8, p < 0.001. In the final model all socio-demographics, except parents' affording dental care, maintained significant associations with the OHIS score. No statistically significant two way interaction was observed with OHIS. --- Discussion This study reported upon the socio-demographic-and behavioural frequency distribution of oral hygiene status and OIDP in a deprived population of adolescents attending secondary schools examined whether the socio-demographic and -behavioural distribution of oral health outcomes differed between males and females and assessed to what extent oral health related behaviours accounted for socio-economic disparity in oral health outcomes. The factors shown to be statistically significantly and independently associated with higher odds ratios of OIDP included; older age groups, low family SES and parents not affording dental care in addition to smoking experience, no dental visits and fewer intake of sugar sweetened soft drinks. The factors associated with higher odds ratios for poor oral hygiene were older age groups, males and belonging to the poorest category of the household index. Using a stratified approach by gender allowed estimation of a wider range of socio-behavioural disparities with respect to the oral health outcomes investigated. Thus, family SES and intake of sugar sweetened soft drinks were more important correlates of OIDP in females than in males, whereas smoking and dental attendance patterns were most pronounced in males. All socio-behavioural correlates of poor oral hygiene status seemed to be equally important in males and females. Consistent with many previous studies of child-and adolescents populations in sub Saharan Africa, this study revealed a moderate frequency of poor oral hygiene status, high rates of daily tooth brushing, low rates of smoking and moderate intake of sugar sweetened soft drinks [9][10][11][12][13]. These figures indicate that there is a room for improving oral self care, diet and access to and utilization of dental services. Moreover, about half of the students reported experience with any OIDP during the past 3 months. This rate is higher than those reported previously among similar age groups in Tanzania, but lower than the prevalence rate identified among secondary school students in Uganda and other non-industrialized countries [11,13,29,30]. Problems with eating and cleaning teeth were the most commonly reported impairments, a finding which is consistent with those of other populations using both the adult-and child version of the OIDP inventory [11,13,29,31]. In spite of its considerable floor effect indicating that half of the students investigated did not experience oral impacts, the OIDP inventory exhibited sufficient discriminatory properties suggesting that it is suitable for detecting group differences in cross-sectional studies. Observed OIDP differences across socio-demographicand behavioural factors were statistically significant both in unadjusted and adjusted analyses and across males and females. In general, these findings confirm the social gradient observed in oral health and oral health related behaviours of adolescent-and adult populations, globally [17,20,32]. Notably, students who had seen a dentist during the previous 2 years reported oral impacts more frequently than students who had not visited a dentist. Similar findings have been reported previously, and might be attributed to symptomatic dental attendance patterns rather than an unexpected response to dental treatment [33]. The social gradient in adolescents' sugar consumption was opposite that observed in industrialized countries being highest in the socially affluent groups of young people. This finding is consistent with evidence suggesting that commercialized sugar products have become highly preferred in low income countries, particularly by the higher socio-economic status groups [34]. Students who reported fewer intake of sugar sweetened soft drinks were more likely than their counterparts to report any impact on daily performances. This might be a reflection of their lower socio-economic status. It is also probably that reduced consumption follows oral impacts in terms of problems eating and cleaning, rather than sugar consumption having advantageous consequences for oral health. The present findings, suggesting a similar social gradient in oral health behaviours and OIDP and the fact that dental attendance, tooth brushing and intake of sugar sweetened soft drinks varied systematically with OIDP, suggests a contribution of oral health behaviours to social disparities in oral health among the students investigated [35][36][37][38]. According to the results depicted in Table 3 and4 Yes 0.9 ‡ Adjusted Odds ratios and 95% confidence interval for having poor oral hygiene according to socio-demographic factors § Adjusted Odds ratios and 95% confidence interval for having poor oral hygiene according to socio-demographic factors and tooth brushing hygiene status and OHRQoL among adolescents but do not seem to remove it completely. Attempts to explain and describe socio-economic differences in oral health status have mainly focused on adults in industrialized countries, with the commonly held view that poor oral health is explained by personal neglect not always being supported [35][36][37][38]. Consistent with the findings in this study, a multilevel analysis of adolescents from 33 industrialized countries revealed that behavioural factors accounted partly for the socio-economic differences in self reported health status [19]. These results appear to imply that preventive programs should focus unhealthy behaviours of adolescents in the poorest socio-economic status groups. The present results should be interpreted in the light of limitations that include a cross-sectional design, use of self-reported measures and the fact that the estimates presented are not weighted using sample weight. Due to its cross sectional design, the present study cannot demonstrate causality and longitudinal studies are needed to identify the direction of the relationships identified. Another weak aspect is the lack of a measure of dental fluorosis being endemic in the present study area and might assumingly impact children's OHRQoL. Structured, self-administered questionnaires as applied in this study have certain limitations with bias due to social desirability, acquiescence and lack of recall being frequently encountered, particularly in younger age groups [39]. In spite of a reportedly optimal tooth brushing frequency that might counteract the deleterious effects of dental plaque and sugary diets, about 80%, 70% and 30% of the study population presented with plaque, calculus and gingival bleeding. This finding do indicate that response inaccuracy due to recall bias and social desirability is a methodological problem that might have confronted the identification of relationships between oral behaviours and oral health outcomes in this study. However, most findings were in accordance with expectations. Moreover, the measures of oral hygiene -and sugar consumption utilized have been applied previously in East Africa [11][12][13]. The sugar frequency questionnaire applied has been found to be acceptable with respect to classifying adolescents into broad categories of high and low sugar consumption [12]. --- Conclusion Disparities in oral hygiene status and OIDP existed in relation to age, affording dental care, smoking and intake of sugar sweetened soft drinks. Gender differences should be considered in intervention studies, and modifiable behaviours have some relevance in reducing social disparity in oral health. --- Additional material Additional file 1: Youth health survey Questionnaire. A self administered questionnaire used for collection of the information regarding students' basic background information and sociodemographics, oral health related behaviors, Oral Impact on Daily performance index as measure of oral quality of life for the students' baseline information. It has questions on: Individual student and his/her family background, Dietary Behaviors, Oral Health, Tobacco Use and Health services utilization among other things. The mentioned questionnaire sections are relevant to the present study, though the questionnaire had 165 questions. Additional file 2: Table S5: Socio-demographic distribution of oral health related behaviours. Table showing percent of the students who reported to consume sugar sweetened soft drink weekly, daily tooth brushing, have tried or are smoking and having attended to a dentist in different socio-demographic groups . --- Author details 1 Department of Clinical Dentistry, Community Dentistry, University of Bergen, Bergen, Norway. 2 Centre for International Health, University of Bergen, Bergen, Norway. 3 Department of Preventive and Community Dentistry, School of Dentistry, Muhimbili University of Health and Allied Sciences, Dar Es Salaam, Tanzania. Authors' contributions HSM: Principle investigator, designed the study, collected data, performed statistical analyses and writing of the manuscript. ANÅ: Main supervisor, designed study, guided the statistical analyses. She has been actively involved in manuscript writing. JRM: Participated in design of study and provided valuable guidance in data collection. All authors read and approved the final manuscript. --- Competing interests The authors declare that they have no competing interests.

Background: Promoting oral health of adolescents is important for improvement of oral health globally. This study used baseline-data from LASH-project targeting secondary students to; 1) assess frequency of poor oral hygiene status and oral impacts on daily performances, OIDP, by socio-demographic and behavioural characteristics, 2) examine whether socio-economic and behavioural correlates of oral hygiene status and OIDP differed by gender and 3) examine whether socio-demographic disparity in oral health was explained by oral health-related behaviours. Methods: Cross-sectional study was conducted in 2009 using one-stage cluster sampling design. Total of 2412 students (mean age 15.2 yr) completed self-administered questionnaires, whereas 1077 (mean age 14.9 yr) underwent dental-examination. Bivariate analyses were conducted using cross-tabulations and chi-square statistics. Multiple variable analyses were conducted using stepwise standardized logistic regression (SLR) with odds ratios and 95% Confidence intervals (CI). Results: 44.8% presented with fair to poor OHIS and 48.2% reported any OIDP. Older students, those from low socio-economic status families, had parents who couldn't afford dental care and had low educational-level reported oral impacts, poor oral hygiene, irregular toothbrushing, less dental attendance and fewer intakes of sugar-sweetened drinks more frequently than their counterparts. Stepwise logistic regression revealed that reporting any OIDP was independently associated with; older age-groups, parents do not afford dental care, smoking experience, no dental visits and fewer intakes of sugar-sweetened soft drinks. Behavioural factors accounted partly for association between low family SES and OIDP. Low family SES, no dental attendance and smoking experience were most important in males. Low family SES and fewer intakes of sugar-sweetened soft drinks were the most important correlates in females. Socio-behavioural factors associated with higher odds ratios for poor OHIS were; older age, belonging to the poorest household category and having parents who did not afford dental care across both genders.Disparities in oral hygiene status and OIDP existed in relation to age, affording dental care, smoking and intake of sugar sweetened soft drinks. Gender differences should be considered in intervention studies, and modifiable behaviours have some relevance in reducing social disparity in oral health.

Introduction Rwanda is a country with a long history of gender inequality. Women have historically been excluded from decision-making processes, denied access to education and employment, and subjected to violence. In recent years, the government of Rwanda has made significant efforts to address these issues, and women's development projects have played a key role in these efforts. In Rwanda, 64% of women live below the national poverty line. 27% of women are literate. Women make up only 20% of the workforce, Women own only 13% of the land.the key challenges faced by women projects in improving sociowelfare of the beneficiaries; such as limited Access to Resources; women often face limited access to resources such as land, credit, technology, and markets. This lack of access hampers their ability to engage in income-generating activities and limits their economic empowerment. Limited access to productive resources restricts their potential to contribute significantly to household income and overall economic development. Women development projects can help to address these challenges by providing women with access to education, employment, and resources. These projects can also help to raise awareness of women's rights and to challenge the social and cultural norms that limit women's opportunities . Gender-Based Discrimination; deeply entrenched gender norms and discrimination pose significant challenges for women projects. Traditional gender roles and societal expectations often restrict women's mobility, decision-making power, and participation in economic activities. Gender-based discrimination and unequal power relations undermine the effectiveness of women projects and hinder their ability to promote socio-economic advancement. Lack of Education and Skills; many women face limited educational opportunities and lack the necessary skills to engage in income-generating activities beyond traditional agricultural practices. The absence of basic literacy and numeracy skills, as well as technical and vocational training, hinders their capacity to access better job opportunities, start businesses, and engage in entrepreneurial activities that can significantly improve their sociowelfare. Inadequate Infrastructure . Women's development projects have had a number of positive effects on the sociowelfare of beneficiaries in Rwanda. These include: Increased income and assets: Women's development projects have helped women to increase their income and assets, which has improved their financial security and ability to provide for their families. Improved education and health: Women's development projects have helped women to improve their access to education and health care, which has improved their quality of life and the well-being of their families. Reduced violence against women: Women's development projects have helped to reduce violence against women by empowering them to stand up for their rights and by providing them with access to support services. Increased participation in decision-making: Women's development projects have helped to increase women's participation in decision-making at the local and national levels. Women's development projects have had a significant impact on the sociowelfare of beneficiaries in Rwanda. These projects have helped to improve women's income, education, health, and participation in decision-making. As a result, women are now better able to provide for their families and contribute to the development of their communities. --- Effect of project financial support on the social welfare of the beneficiaries There are many effect of project financial support on the social welfare of the beneficiaries. This research has found that financial support can have a positive impact on a variety of social welfare outcomes, including: Financial support can help to reduce poverty by providing beneficiaries with the resources they need to meet their basic needs, such as food, shelter, and healthcare. Improved education: Financial support can help to improve education by providing beneficiaries with the resources they need to pay for school fees, uniforms, and other educational expenses. Improved health: Financial support can help to improve health by providing beneficiaries with the resources they need to pay for healthcare, medicines, and other health-related expenses . Financial assistance can assist in increasing access to essential services such as clean water, sanitation, and power. According to a research conducted by the International Labour Organization , social security measures can assist to alleviate poverty and enhance job results. Unemployment payments, disability benefits, and old-age pensions are examples of social safety schemes. The ILO found that social protection programs can help to reduce poverty by up to 20%, increase employment rates by up to 10%, and reduce inequality by up to 15% . The following are some research papers that have examined the effects of project financial support on social welfare: According to a World Bank research, women's empowerment programs may lead to considerable gains in women's health, education, and economic possibilities. According to a United Nations Development programme research, women's engagement in decision-making can lead to more fair resource allocation and improved governance. According to an International Labour Organization research, women's work can lead to higher household income and better child well-being . These studies provide strong evidence that women's development projects can have a positive impact on socio-welfare. However, it is important to note that the impact of these projects can vary depending on the specific context in which they are implemented. For example, projects that are implemented in countries with strong patriarchal cultures may be less effective than projects that are implemented in countries with more egalitarian cultures. Overall, the evidence suggests that women's development projects can be an effective way to improve socio-welfare. However, it is important to carefully consider the specific context in which these projects are implemented in order to maximize their impact . Here are some additional examples of women's development projects that have had a positive impact on socio-welfare: The Grameen Bank in Bangladesh provides microcredit loans to women, which has helped them to start businesses and improve their livelihoods. The Self-Employed Women's Association in India provides training and support to women who are selfemployed, which has helped them to increase their income and improve their quality of life. The Women's World Banking provides financial services to women entrepreneurs in developing countries, which has helped them to grow their businesses and create jobs. These are just a few examples of the many ways that women's development projects can improve socio-welfare. By investing in women, we can invest in the future of our societies . --- Effect of project women's advocacy on the social welfare of the beneficiaries Project women's advocacy can have a positive effect on the social welfare of the beneficiaries in a number of ways. Advocacy can help to: Improve access to resources: Advocacy can help to improve access to resources for women, such as education, healthcare, and employment opportunities. This can lead to improved social welfare by increasing women's earning potential, improving their health, and giving them more opportunities to participate in society. Reduce discrimination: Advocacy can help to reduce discrimination against women in areas such as employment, education, and healthcare. This can lead to improved social welfare by giving women more opportunities to succeed and by creating a more equitable society . Increase awareness of women's issues: Advocacy can help to increase awareness of women's issues, such as violence against women, gender inequality, and poverty. This can lead to improved social welfare by raising awareness of the challenges that women face and by mobilizing support for solutions. Empower women: Advocacy can empower women by giving them a voice and by helping them to realize their full potential. This can lead to improved social welfare by giving women more control over their lives and by helping them to contribute to society in meaningful ways. Overall, project women's advocacy can have a positive effect on the social welfare of the beneficiaries by improving access to resources, reducing discrimination, increasing awareness of women's issues, and empowering women. Here are some specific projects that have had a good influence on women's social welfare through advocacy: The Women's Legal Aid Center in India provides legal assistance to women who have been victims of violence, discrimination, or other forms of injustice. The center has helped to improve the lives of thousands of women by providing them with access to justice and by helping them to overcome the challenges they face. The Women's Empowerment Project in Kenya provides training and support to women entrepreneurs. The project has helped to create thousands of jobs for women and has improved the lives of many families and the Women's Rights Campaign in the United States works to promote gender equality and to protect the rights of women. The campaign has https://doi.org/10.53819/81018102t4247 helped to pass legislation that has improved the lives of women in many areas, such as healthcare, education, and employment . --- Effect of women's training and development provided on the social welfare of the beneficiaries Overall, women's training and development programs have a number of positive effects on the social welfare of the beneficiaries. These programs can help women to improve their economic status, health, and empowerment, which can lead to a number of benefits for families and communities. There are also the programs which have the positive impact on social welfare of women such as; the Self-Employment for Women Program in India has helped over 2 million women to start their own businesses. The program has resulted in increased income, improved health, and greater empowerment for women. The Women's Enterprise Development Fund in Kenya has provided loans and training to over 100,000 women entrepreneurs. The program has resulted in increased income, improved access to healthcare, and greater participation in decision-making for women. The Women's Microfinance Program in Bangladesh has provided loans to over 1 million women entrepreneurs. The program has resulted in increased income, improved access to healthcare, and greater empowerment for women. These are just a few examples of the many programs that are working to improve the social welfare of women through training and development. These programs are making a difference in the lives of women and their families, and they are helping to build stronger communities . There are a number of research gaps in the area of women's development projects and their impact on the socio-economic welfare of the beneficiaries. Most of them was the lack of longterm studies: Many studies on women's development projects are conducted over a short period of time, making it difficult to assess the long-term impact of these projects. The focus on economic outcomes: Many studies on women's development projects focus on economic outcomes, such as increased income or employment. However, these studies often neglect to measure the social and emotional outcomes of these projects, such as improved health, education, or social participation. The lack of attention to context: Women's development projects are implemented in a variety of contexts, each with its own unique set of challenges and opportunities. However, many studies on women's development projects do not take into account the context in which these projects are implemented. The lack of participation by women: Women are often the intended beneficiaries of women's development projects. However, they are often not involved in the design, implementation, or evaluation of these projects. These research gaps limit our understanding of the impact of women's development projects on the socio-economic welfare of the beneficiaries. To address these gaps, future research should focus on: Conducting long-term studies on women's development projects, measuring the social and emotional outcomes of women's development projects, taking into account the context in which women's development projects are implemented, involving women in the design, implementation, and evaluation of women's development projects. For this, we can gain a better understanding of how women's development projects can improve the socioeconomic welfare of the beneficiaries. The concept framework includes the independent and dependent variables. As the topic state the effect of women's development projects in improving sociowelfare of the beneficiaries. A case study of mother and child development centre in Gakenke District. The independent variable is financial supports, advocacy and training and development and the dependent variable is women wellbeing which covers improved income, improved education level, and improves life style, good health and self-awareness. The other intervening variables that can contribute to the effect of women's project development in improving sociowelfare of the beneficiaries. --- Materials and Methods The Data analysis involved rigorous processing and interpretation. Editing, coding, and tabulation were conducted to organize and examine the collected data. Statistical tools such as SPSS software were utilized for quantitative analysis, including descriptive statistics and linear regression modeling. Correlation coefficients were computed to assess the relationships between women's development project factors and indicators of social welfare. Ethical considerations were prioritized throughout the research process, emphasizing informed consent, confidentiality, and respect for diversity, non-discrimination, and sustainability. These considerations ensured the rights and dignity of participants were upheld while striving for impactful and ethical research outcomes. --- Findings and Discussion The section below describes the findings on specific objectives of the study. The following null hypotheses were proposed by the researcher: H0a: There is no significant effect of financial support provided by Mother and child development project on the social welfare of the beneficiaries in Gakenke district. H0b: There is no significant effect of women's advocacy by Mother and child development project on the social welfare of the beneficiaries in Gakenke district. H0c: There is no significant effect of women's training and development provided by Mother and child development project on the social welfare of the beneficiaries in Gakenke district. https://doi.org/10.53819/81018102t4247 between the service offered by MCDC and development of social welfare of the beneficiaries (Pearson correlation coefficient = 0.901. There is a strong positive correlation between MCDC service and financial support (Pearson correlation coefficient = 0.742. There is a moderate positive correlation between MCDC services and women advocacy (Pearson correlation coefficient = 0.562. The correlation analysis reveals significant positive relationships between all the studied variables (MCDC services and improvement of sociowelfare, women training, financial support, and women advocacy in Gakenke District. Our study was supported by a study of the World Bank which was found that women's empowerment projects can lead to significant improvements in health, education, and economic opportunities for women. A study by the United Nations Development Programme found that women's participation in decision-making can lead to more equitable distribution of resources and improved governance. A study by the International Labour Organization found that women's employment can lead to increased household income and improved child wellbeing . 2 indicate the summary statistics of the regression model used to assess the effect of women projects development and social welfare of the MCDC beneficiaries in Gakenke District. The strength and direction of the linear effect of the predictors and the outcome variable is represented by the correlation coefficient of 0.651. is 0.521, which means that approximately 52.1% of the variance in the performance of women's projects can be explained by the predictors included in the model. A study by the World Bank found that women's empowerment projects in Bangladesh led to an increase in women's income of 20%. Another study by the International Labour Organization found that women's participation in decision-making in Peru led to a decrease in child mortality rates of 10%. The positive effects of women's development projects are not limited to the individual level. They can also have a ripple effect on communities and societies as a whole. For example, a study by the United Nations found that women's empowerment projects in Rwanda led to a decrease in violence against women of 30%. The results of the analysis of variance for the regression model used to assess the effect of women's development project on the sociowelfare of the beneficiaries in Gakenke District. The significance value associated with the F-value is 0.000. In this case, the https://doi.org/10.53819/81018102t4247 significance value is less than the typical alpha level of 0.05, suggesting that there is a significant effect of the women's project and improvement of sociowelfare of the beneficiaries. A study by the World Bank found that women's empowerment projects can lead to significant improvements in health, education, and economic opportunities for women. A study by the United Nations Development Programme found that women's participation in decision-making can lead to more equitable distribution of resources and improved governance. A study by the International Labour Organization found that women's employment can lead to increased household income and improved child well-being . .000 Rejected 2 There is no significant effect of women's advocacy by Mother and child development project on the social welfare of the beneficiaries in Gakenke district. .000 Rejected 3 There is no significant effect of women's training and development provided by Mother and child development project on the social welfare of the beneficiaries in Gakenke district. .000 Rejected The study had three null hypotheses: H0a: There is no significant effect of financial support provided by Mother and child development project on the social welfare of the beneficiaries in Gakenke district was rejected. H0b: There is no significant effect of women's advocacy by Mother and child development project on the social welfare of the beneficiaries in Gakenke district was rejected. H0c: There is no significant effect of women's training and development provided by Mother and child development project on the social welfare of the beneficiaries in Gakenke district was rejected. --- Conclusion In conclusion, the general objective of this study is to analyse the effect of women's development projects in improving the socio welfare of the beneficiaries. The research showed also that the effect of financial support , the effect of advocacy , the effect of training and development . All these three factors have positive and significant effect on the improving the socio welfare of the beneficiaries in Gakenke District. The study found that women's development projects have a significant impact on the sociowelfare of the beneficiaries. The projects have helped to improve the beneficiaries' economic status, educational attainment, health status, and social participation. The economic impact of the projects was evident in the increase in the beneficiaries' income and assets. The projects also helped to improve the beneficiaries' access to credit and other financial services. The educational impact of the projects was evident in the increase in the beneficiaries' school enrollment and completion rates. The projects also helped to improve the beneficiaries' access to quality education. The health impact of the projects was evident in the decrease in the beneficiaries' incidence of diseases and the improvement in their health status. The projects also helped to improve the beneficiaries' access to quality healthcare. The social impact of the projects was evident in the increase in the beneficiaries' social participation and empowerment. The projects also helped to improve the beneficiaries' social status and well-being. The study recommends that the government and other stakeholders continue to support women's development projects. These projects have the potential to improve the lives of women and their families, and to contribute to the development of the country as a whole. --- Recommendations To enhance food security, project managers should focus on capacity building, agricultural support, and financial aid. Government support for sustainable women's development projects targeting marginalized groups is essential. Financial assistance and incentives for businesses can further encourage participation. Public awareness campaigns should emphasize the significance of women's development projects. Collaboration with stakeholders like the private --- The findings in Table 4 show the constant term is 0.361. It represents the expected value of the dependent variable when all predictors are zero. The unstandardized coefficient for financial support is 0.931. This indicates that a one-unit increase in financial support is associated with a 0.931-unit increase in project performance. . https://doi.org/10.53819/81018102t4247 sector and civil society will foster long-term impact and sustainability in implementing these initiatives.

The study aimed to analyze the effect of women's development projects on improving the socio-welfare of beneficiaries in Gakenke district. Specifically, it sought to examine the impact of financial support provided by the Mother and Child Development Project on beneficiaries' social welfare, to assess the effect of women's advocacy efforts by the Mother and Child Development Project on social welfare, to determine the influence of women's training and development initiatives provided by the Mother and Child Development Project on social welfare. The sample size, calculated using the Slovin formula, comprised 170 respondents, representing beneficiaries of the Mother and Child Development Project in Gakenke district. Data were collected through documentary analysis and questionnaires. Statistical analyses, including correlation coefficient and R-squared values, were employed to assess the relationships and variations in the outcome variables. The study results found a strong positive correlation (correlation coefficient = 0.901) between financial support provided by the Mother and Child Development Project and beneficiaries' social welfare. The R-squared value of 0.63 indicated that 63% of the variation in social welfare improvement could be attributed to financial support. Additionally, the advocacy efforts of the project showed a strong positive relationship (correlation coefficient = 0.742) with social welfare improvement. The model explained 39.8% of the variation in the improvement of social welfare. In conclusion, the women's development projects, particularly those providing services like healthcare, nutrition, education, and psychosocial support through centers like the Mother and Child Development Project, significantly enhance the socio-welfare of beneficiaries. The study highlights the importance of sustained government support and the need for project sustainability to ensure long-term impact. The study recommends continued government support for women's development projects, emphasizing sustainability and long-term impact. Additionally, it suggests further research to explore additional factors influencing social welfare improvement and to evaluate the long-term effectiveness of such projects.

Introduction There is no single treatment, or intervention program suggested for all children with ASD. Instead, there are several therapies and interventions, including developmental, educational and behavioural therapies, speech and language interventions and augmentations and medical treatment [1,2]. A number of these address core deficits of ASD and have proven scientific evidence for their effectiveness [3,4]. Yet access to such interventions and appropriate therapists can be very limited, particularly in low resource settings. Within low and middle income countries , such as Vietnam the complexity of seeking care for a child with ASD is further exacerbated by the lack of intervention services, difficulties in accessing appropriate specialists, poor quality care and the costs of care. In addition, culturally specific patterns of care seeking and the combination of multiple modalities of care, also termed syncretic care means that interventions for children may include a range of interventions not usually encountered in other countries. It can be difficult for both professionals and parents to make decisions relating to intervention due to the unknown aetiology, the complex manifestations of ASD, the availability and affordability for services and the beliefs and expectations of families of children with ASD toward ASD and interventions [5]. A range of studies have sought to document the types of therapies used by parents of children with ASD [6][7][8]. A 2007 internet-based survey of parents in high income countries [6] found that on average, parents had tried between seven and nine different therapies . Similarly, an internet survey distributed through autism organizations in the US and elsewhere of 552 parents in 2006 found parents using multiple interventions from none to 47 interventions; 52% of parents were currently using at least one medication to treat their child, 27% were implementing special diets, and 43% were using vitamin supplements [7]. A 2012 web-based, qualitative study [8] of 486 parents from high income countries found that issues related accessing desired treatments, managing the costs of money and effort, and dealing with a wide array of professionals were considered significant sources of stress for parents of children with ASD. Driven to help their children, studies show that parents of children with ASD undertake varied therapeutic regimes, including complementary and non-scientific-based therapies [9][10][11][12][13][14][15]. Across the world there is a proliferation of non-evidence-based treatments promoted to families, such as complementary and alternative medicine, modified diet [15], vitamin, food supplements, acupuncture, and hyperbaric oxygen therapy [12,16]. Parents might attempt to implement treatments that they learned about from therapists or the internet despite the lack of evidence for effectiveness [9]. Professionals are concerned about the use of non-scientific-based treatment because it not only leads to the delay of effective interventions but also might be harmful and costly [17]. However, parents of children with ASD consider various factors when they make decision for their child's intervention including: causal perceptions; stigma toward their families; their uncertainty about the future; their hopes [18][19][20][21]; the availability of services; costs; perceptions of the progress of interventions; and other people's recommendations [22]. Most qualitative studies on the lived experience of ASD have been conducted with families in high-income countries. There is a need to conduct studies to better understand the lived experience of ASD and care in low resources societies [23,24]. Here we present data from a long-term ethnographic engagement with families with children with ASD in Hanoi to explore their resort to various modalities of care given the limitations they encounter. --- Autism in Vietnam In Vietnam, ASD, or t, k2 was only recently recognised as a disorder in the late 1990s. A recent epidemiological study indicated that the prevalence of ASD among children in Vietnam from 18 to 30 months is 0.75% [25]. There remain very few studies of ASD in Vietnam [25][26][27][28][29][30][31]. Many studies tend to be psychological or clinical in nature, such as a study which examined the cognitive ability of children with ASD [29], a Ph.D. study on screening children by Modified Checklist for Autism in Toddlers -23, clinical features of children with ASD and the effectiveness of early intervention [26,30]. One cross-sectional self-administered survey with 254 parents of children with developmental disorders, including children with ASD, was conducted in late 2009 and early 2010, to explore the needs of these children and families [31]. Other recent studies focus on piloting intervention models for children under 6 years-old [32]. Most applied research remains in the "grey" literature and is disseminated in national workshops and conferences. There remain difficulties in accessing appropriate interventions for families in Vietnam. Ying, Browne and others [28] raise the needs of providing information for parents at diagnosis time. Affected families are solely responsible for seeking appropriate intervention services and paying for these services including nonevidence-based treatments [33][34][35]. Children with ASD in Vietnam also experience a shortage of assessment and intervention services, especially children living outside of big cities, and many of the intervention services available are questionable in terms of quality [35,36]. In addition, there is a lack of early identification, early intervention services, community-based rehabilitation and health care services for children with disabilities in Vietnam. Poor implementation, expansion, and lack of sustainability are the main reasons for the limitation of appropriate health services for people with disabilities. In addition, treatment costs, lack of appropriate means of transportation, bureaucracy and discrimination prevent children with disability access to services [37,38]. ASD and all forms of disability are strongly stigmatised in Vietnam [34]. Stereotypes of people with ASD as inauspicious, useless, stupid, a burden and dangerous affect social attitudes towards people with ASD and do not recognise their diversity and capacities [34,39]. In addition, traditional beliefs regarding rebirth and karma construct disability as a consequence of ancestral karmic demerit [37,40,41]. Stigma attached to hereditary causes for sickness and disability also makes families of children with ASD feel ashamed, guilty, inferior and worried [34]. In this article we report on the various treatments and therapies sought and used by families to care for their children with autism in Vietnam drawing upon qualitative data collected as part of a long-term ethnographic project on the experiences of children with autism and their parents in Vietnam. As anthropologists we were interested to describe the varied interventions used by families, in particular those specific to Vietnam. Three research questions are addressed: What are the variety of interventions and therapies sought by families, both formal and informal? What are the cultural specificities of these interventions and therapies? What are the burdens for families associated with these various interventions? The aim is to understand what therapies families in a LMIC country resort to in their attempts to seek care for their children and why they choose these therapies. --- Methods --- Ethnographic study The first stage of the study involved 11 months' ethnographic work. This involved in-depth interactions with various settings and organisations involved in caring for children with ASD in Hanoi. The study was participatory, co-designed with the support of the Hanoi Club of Parents of Children with ASD . The ethnographic study took place at a range of sites in Hanoi including hospital clinics, schools for children with ASD and in homes and employed a range of methods, including participant observation, in-depth interviews with parents, therapists, and doctors, an online survey, photovoice techniques with children and the collection of secondary data from media sources, not all of which is reported here [34]. These activities culminated in a community-led public exhibition of children's photographs from the photovoice work as a means of advocacy and public education on ASD in Hanoi [39] and ongoing research and advocacy. In addition to materials from the initial ethnographic study, this paper also draws upon the first-author's involvement with the ASD community between 2014 and 2021. The public health NGO with which she works is deeply involved with the ASD community and runs community workshops on ASD in Vietnam. In addition, we draw upon recent discussions of interventions in Vietnamese newspapers and social media. A database of materials from 2019 to 2021 was collected by the first author from Vietnamese group chat sites for parents of children with ASD and Vietnamese media reports. These were coded and thematically analyzed for materials discussing interventions and therapies. --- In-depth interviews In-depth interviews were conducted with 27 parents who were recruited for participation in the study by various means: through advertisement in "Hanoi Club" and encounters with parents at clinics and schools combined with a snowball technique. The interviews with parents were open ended and focused on their experience of having a child with ASD. These included their points of view towards ASD, their struggle in gaining a diagnosis, seeking services for their children, the stigma and discrimination that they and their children experienced. Among 27 parents, three couples were interviewed together. Six mothers and one father were interviewed two times and four other mothers were interviewed three and four times. The rest were interviewed only once. Parents interviewed one or multiple times depended on the rich of information in their stories, and their willingness and availability to participate in interviews. Approximately two thirds of the interviews with parents were conducted at their homes, the rest were held at cafes. Table 1 lists the characteristics of the parents who were interviewed as part of the study. The parents' ages ranged from 28 to 56 years-old. All of the parents had only one child with ASD. Among them, 15 parents had children aged between 2 and 10 years old, and 12 parents had children older than 10 years old. All families were Kinh, the ethnic majority in Vietnam [42]. One family was Christian, and all the others either were Buddhists or non-religious. As an urban-based study, the education level of parents was much higher than the overall population with most parents having graduated from university undergraduate education and above and three with only high school level education. --- Online survey An online survey of families with children with autism which was carried out over one month in www.surveymonkey.com was used as a means of gathering a broader sample of responses to triangulate, supplement and verify patterns observed through the qualitative techniques in Hanoi. Such a survey carries inherent sampling bias due to its non-random nature and self-selection of respondents and cannot be considered a representative sample. It is included here to triangulate the patterns found in the qualitative findings and not as a representative sample. The online survey consisted a total 35 questions, categorized in six parts: respondent's demographic information, information of respondent's child with ASD, child's schooling, child's intervention, respondent's experiences and attitudes toward their child's assessment, intervention and schooling, and information sources. Advertisement of the survey was circulated widely in websites of Hanoi Club, Facebook and e-mail lists, and leaflets of the survey were distributed at a number of clinics for children with ASD. This survey received a total of 203 responses; however, only 125 questionnaires were completed and included in analysis. The list of intervention methods used in the online survey was developed from those mentioned in in-depth interviews. Table 2 lists the characteristics of the respondents to the online survey. The majority of respondents were urban, women, married and with university education. Most families reported having one child with autism. The majority worked full time and reported a family income around USD 260 per month. This is much higher than the average household income in 2012 in Vietnam which was USD 1059.25 [43] or USD 88.27 per month. As could be expected with an internet-based survey, the sample is not representative of the majority of the Vietnamese population but is biased towards a middle-class urban sample with access to computers, nevertheless the findings reported confirm patterns of therapeutic care described in the interview data. --- Analysis We used grounded thematic analysis with triangulation of our qualitative data to enhance the rigour of the analysis and interpretation process [44]. First, the audio files were transcribed verbatim along with all non-conversational expressions by the first author and four research associates who had experience in transcribing research materials. The first author verified these transcripts to ensure the accuracy of information before coding. Transcribing was carried out right after first interviews and throughout fieldwork. Then three transcripts were translated into English and coded by the two authors for open coding. A codebook was developed and discussed by the two authors. The two authors read through three transcripts and fieldnotes, and conducted open coding. Texts were read line by line and assigned a label to describe what it represented. Through reading texts, and by constant comparison, similar phenomena were given the same code name. The codes included descriptive codes that identify and summarise the content of a segment of the text and pattern codes that identify themes, patterns, or constructs from the data. The two authors worked together to compare our codes, and revised the codebook. Then, three Vietnamese research associates in one research institute were hired to conduct coding. These researchers received a half day training on coding and the codebook, then conducted individually coding of the same three transcripts, then the first author and three Vietnamese research associates compared and discussed the coding, and made another revision of code book. Then later two other transcripts were coded by the team, and after the second round of checking code fidelity, the final code book was used. The three research associate coded for almost all in-depth interviews with parents and key informants. The first author conducted coding on field notes, observations, and group discussions. Besides analyzing data by themes, the two authors also analyzed data by case and tried to interpret how narratives are communicated in certain ways. The NVivo 10 V R software was used to facilitate analysis and management of textual data. Data from the online survey with parents was analysed by SPSS 16 for frequencies of responses. --- Ethics This study received ethical approval from the Research Ethical Committees of the University of Queensland and a local research organization in Hanoi and was undertaken with permission of all participating organizations. Participation was voluntary and with written informed consent. All names used in this paper are pseudonyms. --- Results We find that parents resort to a range of options in their care for their children with ASD, including dietary, herbal, religious and patent interventions: a strategy captured by the local phrase "C� o bê : nh th� ı v� ai t$ phư ơ ng" . This was a recurrent theme among parents in this study during our discussions about interventions for their children. This idiom means that if someone has a disease, all treatments/supports need to be sought. However, their quests for therapies also reflects the difficulties, inequities and cultural specificities in seeking treatments in the context of a low-income country, such as Vietnam where there are few well-trained professionals caring for children with ASD and limited availability of effective interventions. The case study of Nga below illustrates the complex syncretic care-seeking utilised by parents. Then we describe these various interventions grouped together as "formal," "informal," and "religious" interventions and use the survey results to provide a sense of the popularity of these interventions. --- A case study of Nga The story of Nga who had a 14-year-old son with autism exemplifies the complex therapeutic quests undertaken by parents at considerable financial cost and investment of time and energy. The lengthy excerpt from her interview is included here to give a sense of the ways in which mothers explained their efforts to seek care for their child. Given the extremely limited publicly available interventions for children with autism [32] the onus for therapies falls on family members, primarily the mother. I started to work together with my son immediately after I learned that he has this disease. At the beginning, I did not have any knowledge, so I searched and studied materials. When I found in materials instructions on play activities, interactive activities, I made materials, stuff to help my son have these activities. However, when one mother from the South, who went to the US for intervention for her son, provided training on ABA, I learned from her, and do it. I let my son study half a day in childcare, and had two sessions of intervention in afternoon and at night. After two years studying at primary school, I found that he could not follow the school program, so I decided to take him home, and set up this school for him and some other children with ASD. … In addition to therapy sessions, I also let him participate in a BIO program for two years. I did not see much effectiveness of the BIO program for him. I think my son is reluctant with medicines. His eating improved somewhat, but his sleep problem, behaviours, his ability in concentration have not improved much. I even let my son breath dense oxygen for 80 h. He had it twice. I also use PECS , which was introduced by a teacher from VSO . My son really likes this method because he likes things in schedule. However, this method lacks flexibility, so I also use RDI . I have participated in RDI for one year. I have not had much time for this method, since at that time I had several family issues. It is very expensive, so I stopped RDI after one year. We cannot afford it. When my son went through puberty, he had lots of tantrums, so I used medication, which is normally used for schizophrenia. I used this medicine for half a year, and whenever I stopped this medicine, my son became worse, so I think this medicine is for symptoms only and could not treat causes. So on the one hand I continued the prescribed medicine, but I also used traditional medication. I found that my son's health is better when he is given traditional [North Vietnamese] medicine so I reduced the medicine for schizophrenia to a half dose. The reason that I use traditional medicine for my son is that his hands and feet often get cold and he sweats a lot. In the biomedical approach they say it results from feeling disorders, but the traditional approach views it as results from poor kidney, the conflict between yin and yang in your body. When I use traditional medicine for my son, I found these symptoms reduced. I do not use acupuncture for him, because I am afraid of that. My son had acupressure when he was young because people say that acupressure helps to regulate meridian block, but it did not work well … Then last year I also took my son to Th� ai Nguyen. There was a rumour that Ms. Anh in Th� ai Nguyen has special capacity, she treats people by her energy. I do not know where she can get energy, but I heard that she could treat many people. I do not know if it is nhân diê : n , but I see many people with different conditions go to her house. My family and another family shared a car together to take our sons from here to there three times a week for four months but I don't know if it works. My mother also b� an kho� an my son , but I am Catholic, so after some years I asked my mom to 'bring' him home. This narrative excerpt from Nga is typical of other parents in our study in that she enumerates the multiple interventions and therapies with very little support from professionals or the government. As the mother she was the person who actively searched for information from different sources, and made most decisions on selecting, changing, stopping and combining interventions for her son to the best of her knowledge. Consistent with Vietnamese gender norms, women are expected to nurture family members and so the tasks of caring for her child fell primarily upon Nga and the effect of this narrative is to demonstrate her exemplary care for her child. Nga describes a range of behavioural interventions gleaned from other parents and a foreign volunteer teacher applied with varying degrees of success and appropriateness along with a combination of "therapies" including alternate therapies which will be explained in greater detail below, such as a dietary intervention called "BIO," dense oxygen, and acupressure. She also describes her use of allopathic medicine for behavioural management and traditional Vietnamese medicine to balance his bodily humours which she believes to be more effective. Finally, she also describes the use of spiritual interventions by a healer using nhân diê : n and the traditional practice of b� an kho� an or symbolically "giving" her child to the Buddhist temple for protection and care. Her family paid out of pocket for all intervention costs. Her story reflected the typical quests for therapies of the families in this study who draw both upon interventions suggested by specialists, overseas training and visiting therapists, but also upon local ethnomedical understandings of the human body and illness through which they seek to address the underlying "causes" as well for this misfortune. Like Nga, parents in our study all expressed the desire to find effective interventions for their 12.5 a Prescribed medicines are mentioned in in-depth interviews as medicines that health providers prescribe for children in order to manage a child's behaviours or 'treat' autism. These include both injection and pills. b Biomedical treatment is translated into Vietnamese as trk liê : u y sinh. However, parents of children with ASD in Hanoi call it as BIO. In tretuky.com, parents create one forum to discuss about this treatment and share materials, information . children, some even expressed a desire to "cure" ASD. Their stories revealed the challenges that families face due to the lack of coherent information and services for ASD in Vietnam and the lack of guidance from well-trained professionals. For all their ability to undertake various therapeutic options was limited by their ability to find resources, time and the money to do so. --- Treatments and interventions utilised by parents Given the difficulties in accessing interventions in Vietnam, like Nga many parents seek a varied range of therapies for their children. The following table presents reported practices of parents using various treatments and interventions for their children with ASD. A total of 112 parents in the online survey answered the question about the type of treatments and intervention programs that their child has participated in. Table 3 shows that speech and language interventions, vitamins, physical therapy, prescribed medicines, and "ABA" were the most common interventions that parents reported, with more than 50% of parents using each of these methods. Some other methods, such as sensory integration therapy, occupational therapy, social stories , and Relationship Development Intervention ranged from 30 to 40%. However, these methods also had high percentages of "do not know" answers; for example, 32% had not heard of RDI and 30% did not know about social stories. Some possible explanations for the high percentage of "do not know" responses for these methods are that parents might not have heard about these methods, or they knew about these methods, but they did not know in detail the interventions that their children receive, reflecting the low access to professionals trained in these interventions. The list of the treatments and intervention was developed after the initial in-depth interviews with parents but the listed interventions might not accurately reflect the interventions as practiced. This can be due to the translation of concepts across different settings in that the various medical/psychological terminologies used in Vietnam may not always be translated in terms of actual practices. For example, parents mentioned utilising "ABA intervention." However, ABA is not a singular intervention but there are a range of ABA-based interventions used in other countries [4]. At the time of the study, there was no professional in Vietnam who was trained and certified as an ABA therapist. Rather, as Nga mentioned, a mother from Southern Vietnam went to the US for her son's intervention and learned ABA techniques. Upon her return she provided informal "training" in ABA for other parents and teachers. Thus, parents and teachers applied this, and reported that their children received "ABA." Similarly, at the time of the survey, Occupational Therapy and Speech and Language Therapy were new for not only parents but also professionals. Parents mentioned "sensory processing therapy" if their children received some techniques supporting children to cope better with their sensory processing difficulties, for example, sitting on a therapy ball, wearing a heavy jacket, jumping on a trampoline, or having massages. They learned these methods by attending workshops carried out by interventional volunteers or reading materials, and applied these for their children, or interventionists reported using these techniques for their children. In another case, a group of parents joined together to pay for an international expert to come to Vietnam to provide training and coaching online in Relationship Development Intervention but this does not necessarily mean such interventions were ongoing or professionally supervised. --- Formal intervention services Access to evidence-based formal intervention services for children with ASD in Vietnam are very limited and of short duration and vary in quality, availability, and cost. Only a very few public hospitals provide free early intervention services for children with ASD in Hanoi and these are short-term in nature, with the purpose of providing some trial treatments and educating parents to continue interventions at home. Hanoi children normally receive a half-day intervention program for three weeks with �20 children per course. The maximum number of courses a child can attend is four . In addition, there are limited early intervention centres at public universities which are privately funded and self-managed. In the last ten years there has been an increase in the number of private early intervention centres offering a full-time program, or part-time program. Many of these centers have been established by retired professionals in the field of medicine, or education, or professionals who affiliate with universities or hospitals that provide services for children with ASD and they vary in their quality. Intervention fees ranged between $US 5-7.5 per hour. Intervention fees for full-time students ranged from $US 175 to $US 350 a month. Such fees are only affordable for middle-class families on good wages. In addition, there are several parent-organised groups with a limited number of children in each group, from 10 to 20 children each. These groups either provide full time intervention for their children or provide part-time intervention in the afternoon when their children came back from studying at mainstream schools. In addition, some parents of children with ASD undertake interventions for their children by themselves. Some hire professionals who have some experience to conduct intervention for their children at their home or the professional's home. These parents do not receive any welfare support from government and got little support from professionals. Data from the online survey showed that on average, for one child, families utilised 6.8 different means of treatments and interventions. In the survey, there were only three children who were reported not to have received any form of intervention. The highest number of interventions reported was 16. As will be described below, these come at considerable financial/time costs that few of the families interviewed could afford. --- Informal interventions Parents of children with ASD in Vietnam are vulnerable to the commercial promotion of a range of pseudo-scientific interventions that draw upon local etiologies combined with appeals to biomedical authority to promise "cures" to autism. For example, around ten per cent of parents, such as Nga reported using th{ ô xy cao � ap believed to improve brain activity which was available at some hospitals. "BIO" is a term that respondents used to refer to a "treatment" in which children underwent biochemical testing and were given medications, including vitamins and a modified diet to "rebalance" them back to normal. This BIO program draws upon the common belief in Vietnam and other parts of Asia of the importance of diet that specifically balances the various bodily humours, here combined with pseudo-western biomedical authority by using "scientific" testing and expensive food supplements. For example, in an online forum in 2019 a parent reported that in addition to some basic tests that parents can get in Hanoi, four other tests are required to send either to the US or Singapore for testing. These include Metametrix OAT test , costing USD 333, Usbiotek 96 general food panel IgG, at USD 139, DDI comprehensive stool analysis for USD 255 and a hair test at USD 55. The mother also gives the estimation that the cheapest cost for BIO is about USD 4560 annually, including USD 651 for a counselling fee, USD 802 test fee, and USD 2605 for medication. A Singapore website promoting the "bioenergetic treatment" for autism states: "The approach covers heavy metals toxicity, parasites, viruses, bacteria, yeast, structural, radiation, food allergies, emotions, belief systems, genetics, epigenetics … Besides being fast, the best thing of all is … any changes are permanent." Such programs exploit generalised fears of contaminated food and environments as partly responsible for autism. Groups of parents in our study had collaborated to fund experts from the US or Singapore to come to Hanoi to conduct testing for their children, and then used medication and diet programs for their children. A few parents took their children abroad for "BIO" programs. There was some confusion and overlap between the English term "bio-medical" treatments and such dietary interventions. Although only one-fifth of parents reported that their children participated in a "BIO" treatment, a higher percentage of parents employed a milk-free diet or gluten-free diet similar to "BIO" diets. --- Other culturally specific interventions Our survey found approximately one-fourth and one-fifth of children are given châm c$u and b � âm huyê : t , respectively . Acupuncture uses thin needles to stimulate acupoints and acupressure uses firm massage on the acupoints to help improve the regulation of kinh ma : ch . Acupuncture was commonly promoted in the media as a treatment method and the National Hospital of Acupuncture established a unit for autism treatment in 2012 [45] and acupuncture is applied for children with autism. Some parents believed that acupuncture and acupressure improved the movement of the tongue and month, as well as blood circulation to help the brain's working ability. Other parents reported that they were not sure how acupuncture and acupressure worked, but they were willing to try all options. Q: What made you decide to use acupuncture? A: Because many people say that it is good. And [my son could not speak well] because his tongue meridians have problems. The teacher who taught him speech said that his tongue is hard, so he might need to have acupuncture. And she said that the traditional healer cures some cases. --- Spiritual practices The popularity of spiritual practices for children with ASD in Vietnam reveals the complexity in lay explanations for the aetiology of ASD. Although parents interviewed in Hanoi acknowledged the aetiology of ASD from a biomedical perspective , they combined these with their beliefs in reincarnation and karma and the influence of deities, ancestors and other influences upon a person's fate. I know that autism has a biological aetiology. However, when my child got this condition, I think 'c� o th{, c� o thiêng, c� o kiêng, c� o l� anh' … I am not superstitious, but I still believe in another world out of our world. I think everybody has a protecting God. Techniques to direct nhân diê : n towards the child refers to a belief that a person with special capacity is able to absorb energy from universal and transfer to others . Around 10% of parents reported trying each method. Parents suggested that nhân diê : n also helps to regulate kinh ma : ch and is sometimes received free of charge by lay people who have a special capacity. A range of religious interventions are also popular among parents of children with autism. These derive from Vietnamese Buddhist beliefs and ancestral worship. About one-third of parents worship to ask for better health for their children, for good luck , or for a cure. In addition, as mentioned by Nga, around a third of parents practise b� an kho� an, a ritual in which parents spiritually offer their children to the pagoda. In this practice the child stays with their parents at home, but are said to "belong" to the pagoda so they will be protected by Buddha. This is a common practice among all parents in Northern Vietnam for their children, regardless of their health status, but is very common if a child has been diagnosed with a disorder in the hope that their child's condition will get better. As this mother explained: My son was b� an kho� an last August. He was diagnosed as autistic, but we still did b� an kho� an for my son because my grandfather said that he would be more easy to raise, be healthy, and his mind would be improved. If it improves my son's condition, it will be wonderful. [I] just keep my belief in it. About 10% of parents in the online survey used dui tên as another intervention for their children. Some of them changed their child's official name, which required a government procedure of changing the name in the birth certificate and other related official documents. Many other parents chose the option of not changing the official name, but changing their child's name when they worshiped. This could be achieved through a special ceremony, in which they would ask their ancestors to accept the new name of their child, and from then they would use the new name of their child in their family worship. The shaman said that my son's name, Ho� ang , pha : m to God, so the child is kh� o nuôi . So he suggested to change my son's name to HoQng Dư ơ ng, a kind of Buddha's name, in order to let my son be under the protection of gods, Buddha. He is also born in m� ung mô : t , so it is more kh� o nuôi. So, we had a special l ẽ to change the name of my son. I did it for peace of mind, with hope that it will help eliminate the hardship for my son Other parents do a name change through a special ceremony in which their child was "given" to other people as an "adopted" child, so he/she would have a "new name" and "new family," though in fact their child still lives with them. Parents explained that they have the belief that someone's name influences their life: "We Asian people think that someone's name links to someone's fate." For example, Th"y's son was born on the first day of lunar month and there is a proverb that "trai m� ung mô : t, g� ai dêm rQm" which states that a boy who is born in the first day of lunar month, and girl who is born in the full moon day, have strong characters and are hard to raise. Name changes occur after a diviner advises that their child's name inadvertently might have some unlucky meanings, or their child's name is pha : m to ancestors, or deities, and therefore their child suffers ASD as a punishment. Numerology might also be used to determine if the date of birth or time of birth is inauspicious. Therefore, these ceremonies were believed to help to change the s � ô phMn of the children. Some parents reported other geomancy practices based on the belief in the need to harmonize individuals' energies with the surrounding environment. Families reported moving house, rearranging family possessions , and choosing therapists who are hƒp tuui with their child. --- Costs As in the case study of Nga, families of children with ASD in Hanoi were responsible for all intervention costs. The health insurance law in Vietnam states that children under six are eligible for examination and treatment free of charge [40] however, children with ASD can only access the very limited free early intervention services in public hospitals. The government does not have any financial support or public health insurance for families of children with ASD for other educational services or private therapists. As a result, the economic burden for families is considerable. As noted above, interventions in private clinics, overseas testing and treatments, such as the "BIO" programs are expensive. The online survey with parents reported that the average monthly intervention expense for a child with ASD in the last 12 months was approximately USD 345 . This is in comparison with the average monthly family income of over 80% of the parents in the survey which ranged from USD 150/month-USD 1000/month. As noted earlier, the average household income in Vietnam in 2012 was USD 1059.25 [38] hence these intervention costs are only affordable by those on higher wages. Parents continue to report that they let their children drop out of interventions due to the costs, hired unqualified professionals, or could not afford an intervention that they believed would be more appropriate for their child. --- Parental decision-making The reasons behind parents' decisions to undertake multiple interventions at high cost is partly because of their fears associated with autism. Within a context in which information about ASD is largely filled with negative stereotypes, parents describe being desperate to seek interventions to make their children able to "fit into" Vietnamese society. As noted earlier, autism is strongly stigmatised and misunderstood. One mother said in tears: There are more people [now] who know about autism but the number of people who have correct understanding of autism is still very limited. The misunderstanding that an autistic person is a 'thQng tâm th � ân' is very painful, like being thrust with a knife. I cried a lot when I thought that my beautiful boy would go out without any clothes; eat up dirty food from the rubbish bin. I was scared if there was not any treatment, and my boy would live like a schizophrenic person [crying]. . Misunderstandings continue to equate autism with mental illness and in our study even some service providers reinforced such views and suggested that children without interventions would develop more severe autism and eventual schizophrenia. For example, one mother recalled her experience when she sought assessment and intervention: "You know, the sentence that all mothers would remember is 'Autism will become schizophrenia'." At that time, doctors said that, books, materials said that "children with autism will become schizophrenic." In particular, the sensory seeking and stereotypic behaviours, such as waving hands, rocking, moving, and talking constantly are often misinterpreted as being abnormal signs of madness which must be stopped. As a result most parents reported their children had experienced social discrimination, bullying, rejection and were not allowed to attend mainstream schooling. In interviews parents describe being socially ostracised and feeling ashamed and embarrassed by their children in a society where "fitting in" is crucial to social acceptance. This fear is combined with the realities in a LMIC country, such as Vietnam that there are few formal services or supports for children with ASD available as described above [35]. Children with ASD in poor families have difficulty accessing private interventions due to costs. Even if they are able to access early intervention through the government hospital, since the number of children wanting to access this service is very high, these children receive very limited services and children who were severely disabled were sometimes turned away to enable children who may make more "progress" to attend. When the doctor told me that my son was autistic, I asked him how to treat this disease. The doctor said this disease depends 90% on the mother. The doctor confirmed that a teacher [therapist] could work with the children only a couple of hours a day, so I would be the main person in doing intervention for my son, and it depended 90% on the mother's love. In the context of Hanoi, where t, k2 is still misunderstood as bê : nh , parents of children with ASD in this study tried their best to look for a "cure," and an intervention with a high "success" rate. Parents explained that they sought all possible treatments including those they might not believe because they wanted to try to the utmost to ensure their peace of mind. For example, Ly, 35 year-old mother of a ten-year old boy summed up the attitude of many parents: I believe mostly in educational intervention. I think it is effective. I do not believe in the effectiveness of other , but I have to use these … because it will give me the peace of mind . 'C� o bê : nh th� ı v� ai t$ phư ơ ng' . In my heart, I do not think this condition is curable, but after a long time of teaching my daughter, I follow whatever other people suggest. I do everything, in order not to regret it later. --- Social media and trends In the last 7 years, the increase in information available on social media as well as the increased attention of professionals and parents toward ASD, especially in big cities, has provided parents with more opportunities to encounter an even wider range for interventions since our original study, from evidenced based intervention, such as ABA, speech therapy, and parent training, to alternative and controversal treatments. Some alternative methods have trended and then faded after a short time, such as horse-riding therapy, as noted above, others continue to be promoted and some have raised ongoing and controversial debates. One example is an intensive physical skill training program in which, according to the center website, children with ASD are required to stay in the intervention center and learn circus skills, such as riding a unicycle, juggling, balancing for at least 6 h a day. In 2018 news coverage on this intensive physical training program raised debates among parents on social media on the rationale behind the intervention , the qualifications of the person who developed the program and the center's staff, and the degree of difficulty of the training and safety, especially after there was an accident in the center. Another newly popular intervention promoted on social media is stem cell therapy. The costly stem cell therapy for children with ASD has been introduced to Vietnamese families since 2014 through websites of companies offering treatment, media news, and closed face-book groups . In October 2020, newspaper and social media reported that, "Vietnam has become one of the pioneers in the world in research and application of stem cell therapy to treat autism spectrum disorder following new findings" referring to a research team at a hospital [46,47]. Debates relating to the stem cells therapy include claims and counterclaims about how the therapy works and its outcomes, whether it is supported by scientific research, the transparency of research and its commercialization, and the high costs for a medical treatment that is not officially approved. The debates on stem cell attracted the attention of both professionals and families in June and July 2021 in an open Vietnamese fan page entitled "Scientific integrity." In controversal debates relating to autism therapy and treatment, a number of people, especially professionals, debated about research evidence while many parents prioritized anecdotes of children who used the therapies and gained improvements. These parents argued that stem cell therapy/treatment might not work with others but did, or might potentially work for their child. A number expressed their decision as the last resort they could give to their children after lengthy efforts and the expression, "c� o bê : nh th� ı v� ai t$ phư ơ ng" [pray to all four directions] reappeared in their discussion on autism "treatments." --- Discussion In their therapeutic quests for care, parents share some similar experiences with their counterparts in other societies as they try to do the best they can for their children [8, 47,48]. In Vietnam parents encounter many challenges during their quests for information, intervention services, and in their decision-making. These include: the unknown nature of ASD etiology; the complexity of this condition; their uncertainty of how various interventions work; the commercial promotion of new interventions; confusing information promoting cures promulgated in social media and through their networks. These factors are also recognized in other studies [12,22]. Parents of children with ASD in Hanoi pursue a range of interventions, regardless of whether the methods are evidence-based or not because of the hope that something may work to help their child's condition. They continue to seek interventions from educational, language and behaviour therapists as well as traditional medicines, modified diets, spiritual practices and other supplementary and alternative methods. Parents in Vietnam implement various interventions that lack evidence of their effectiveness, such as dietary modifications, vitamins, acupuncture, and acupressure. Parents eagerly try new interventions when they are introduced, for example, most recently, music therapy, horse therapy, and circus movement therapy. Costly stem cell therapy is the latest intervention being promoted to families since it was introduced to Vietnam in 2014 [46,47]. Parents in Vietnam are targeted by various intervention agencies and private providers, including those from overseas . These usually entail high financial costs for families that can ill-afford them. The practice of using multiple therapies concurrently for children with ASD is common in many other countries, both in high income and LMICs [6- 10,16,45,49]. A review reported that parents utilize between 2 and 12 treatments for their child, and religiousbased practices are often administered alongside other treatments [50,51]. This might lead to time wasted on ineffective treatments that may have been better spent on therapies known to be effective [11]. The perception toward ASD and stigma and discrimination toward ASD and disability also affects the therapeutic choices of parents [50,52,53]. Many parents in this study perceived autism as a "disease" that might be cured rather than a lifelong condition [34]. With cultural values that emphasize family, parenthood, and children, parents think that they do not fulfil the cultural expectation of keeping their family reputation untarnished, nor of having a healthy child to continue the family lineage and take care of the parents in their old age. Being different is grounds for criticism. Parents of children with ASD feel inferior when their children are different to neurotypical children, they try to "pass" their children as the same as others. Therefore, parents of children with ASD in Vietnam are attracted by treatments and therapies, especially medical treatments, that claim to "cure" or produce dramatic improvements in a short period of time. In the context of Vietnam, where there are not yet nation-wide clinical guidelines for intervention services and no government agency oversight of ASD services, intervention centers provide various services, and make claims about their scope and effectiveness without any accredited oversight and quality assurance [36]. Although advocacy for evidence-based intervention is starting to help support parents in their decisions surrounding interventions, most parents continue to rely on their own perceptions about the possible effectiveness of the intervention , the availability of services and costs. There remain only a few intervention services with well-trained professionals, and this lack of support and guidance from professionals makes the therapeutic quests of parents more challenging. There are some limitations in this paper. We encountered difficulty recruiting parents from lower socio-economic backgrounds and parents whose children did not access any services so although the survey did capture some regional and rural opinions, the picture it presents reflects the situation among the urban middle class in Hanoi. Despite our initial fieldwork being undertaken years earlier, as the websites cited above and our recent observations in the ASD community suggest, little has changed in terms of the availability of evidence-based interventions, the limited availability of trained therapists and the overall pattern of syncretic therapy seeking remains the norm. The advent of social media to broadly promote even more "treatments" in Vietnam and across the region exacerbates the possibilities for exploitative, expensive and even harmful therapies of little value targeting parents of children with ASD. --- Conclusions In the context of limited publications and studies on ASD in Vietnam and in other LMICs, this paper makes a significant contribution to our understandings of the experiences of families seeking care for their children and potential exploitation when they face limited options within a poorly regulated sector. This study has a number of implications for ASD services in Vietnam and other LMICs. Firstly, efforts are required to provide better understandings of ASD for parents and the general population to reduce stigma and discrimination toward ASD and help parents interpret information regarding therapy options. Secondly, training programs to build capacity for therapists and allied health professionals need to be implemented on the latest evidence-based therapies but also appropriate skills and attitudes to work with parents as collaborators in children's therapies [53]. Professionals need to be able to provide information and guidance to support parents in their choice of treatments, to let them know what to expect from those treatments, which interventions have evidence as to their effectiveness and which interventions lack evidence or are harmful, and to help parents find practitioners and interventions that are appropriate to the child [49]. Thirdly, this paper also highlights the need for professionals to understand the complexity of factors influencing parent's decisions, including knowledge, social and emotional support, cultural and religious beliefs and finance, and openly and respectfully discuss with parents about goals and plans for intervention [12,23,54]. In the context of a low resource setting where welltrained professionals are limited, parent-mediated intervention is a potential solution [55][56][57][58]. This would support parents to learn skills to support their children to learn and develop skills through integrating intervention activities in daily routines [57,58]. Lastly, it is important to develop Vietnamese guidelines to support interventions for children with ASD. Currently, the Ministry of Health of Vietnam and some organizations, including National Hospital of Pediatrics and Center for Creative Initiatives in Health and Population are working with parent groups together towards this goal. This would help the Vietnamese government to regulate intervention services and related agencies to provide evidencebased services and improve the quality of existing services. --- Disclosure statement The authors have no financial or non-financial conflicts of interest.

The aim is to understand what therapies and interventions families in a low and middle income (LMIC) country, such as Vietnam resort to in their attempts to seek care for their children with ASD and why they choose these therapies. Methods: We undertook semi-structured qualitative interviews with 27 parents of children with autism and an online survey of 112 parents as part of a broader ethnographic study over one year augmented with recent interactional observations and a review of social media. Results: There is limited access to formal interventions for families with children with ASD in Vietnam. Rather, families resort to syncretic care using an average of 6.8 different interventions per child. These included: speech therapy; physical therapy; prescribed medicines; and ABA as well as geomancy, special dietary regimes, biochemical testing, stem cell therapies and religious and cultural practices. Despite having low incomes, the families surveyed spent an average USD 345 per month on interventions, many of which are not evidence-based. Desire to care and potentially "cure" their children within a context of stigma associated with ASD drives parents to seek all possible interventions for their children. Conclusions: There remains a large gap in access to appropriate evidence-based interventions or trained therapists for families. Further information for parents, culturally appropriate guidelines for effective interventions, more trained rehabilitation professionals and regulation is required.� Within low and middle income countries (LMIC), such as Vietnam there is a lack of intervention services, difficulties in accessing appropriate specialists, poor quality care and the costs of care. � Families seek a range of formal interventions and costly informal therapies as well as culturally specific practices to care for their child/ren and require information on effective therapies. � In LMIC training programs to build capacity for allied health professionals need to be implemented on the latest evidence-based therapies. � It is important to develop culturally appropriate Vietnamese guidelines to support interventions for children with ASD.

Introduction In explaining persistent health disparities between black and white women and men in the United States, increasing attention has been dedicated to factors beyond clinical characteristics in predicting health outcomes. These include a number of social determinants, such as socioeconomic position and structural discrimination, which have been shown to exert a strong influence on both physical and mental health [1]. Establishing causal mechanisms for the relationship of these social factors with racial and gender inequities in disease outcomes has proved challenging, however, due in large part to theoretical and methodological inconsistencies, in addition to conflicting evidence, within the current literature. As an example of these conflicting findings, some studies find that racial discrimination is associated with hypertension among black Americans [2,3], while others have found no association [4,5]. Discrimination has also been linked to other cardiovascular disease risk factors such as sedentary behavior and obesity in black women [6,7], but findings among white persons remain inconclusive largely because few studies have ever examined how the experience or practice of discrimination affects cardiovascular health in this group [8]. Research also suggests gender differences in depression as stemming from women's subordinate social status [9]. Yet, among black persons, this gender disparity significantly attenuates when adjusting for socioeconomic status, while persisting among whites [10]. These varying results suggest additional intersectional effects of psychosocial exposures beyond the individual experiences associated with race or gender alone, complicating efforts to untangle the causal role of social adversity in explaning health disparities. Group-specific strategies for managing psychosocial stressors may partially account for such disparate findings regarding the relationship between social inequity and health among black and white women and men. A number of interdependent demographic characteristics including race, gender, socioeconomic position, geographic location, and period of life likely contribute important variability to stress management strategies within these groups. While differences across race and gender in coping with stress have been well-documented [11], theoretical and empirical evidence for the factors driving variation in the management of social identity-based stressors among black and white women and men remains sparse and inconsistent. A comprehensive review of the current theories and empirical evidence for those theories may identify important gaps in the literature and in so doing identify areas for further research while also providing additional direction for interventions aimed at reducing racial and gender health disparities. As a method of narrowing the scope of such an endeavor to an informative proportion, the current review focuses only on the contribution of racial and gender identity to the methods individuals within these groups choose to cope with psychosocial stressors. --- Racial and gender variation in stress exposure and management Differential likelihood of resilience in the context of stress has been offered as one framework for interpreting variation in the relationship between social inequity and health across and within social groups [12]. These models point to differences in stress exposure and strategies for managing social stressors in explaining racial and gender disparities in health outcomes. Additionally, group differences may not only be attributable to variation in magnitude of stress exposure but also to the nature of the stressors individuals experience as a result of group membership or social identity. As historically and presently disadvantaged groups, both women and black persons are exposed to psychosocial contexts which are thought to lend themselves to passive or emotion-focused coping, in contrast to a preference for problem-focused strategies likely resulting from the relative efficaciousness characteristic of dominant-status groups [13][14][15]. Such contexts include legalized discrimination against women and black persons which promoted state-supported segregation, denial of civil rights, and physical violence against these groups that to some degree persists today [16,17]. A lack of legal and social platforms from which to speak out against these pervasive inequities without fear of violent retribution may have contributed to the development of alternative strategies for managing the stress associated with racial and gender discrimination such as transference as well as avoidant and ruminative processes [14,15,17,72]. Despite an extensive history of research on the topic, conclusive evidence for the role of these social experiences in yielding distinct coping behaviors remains elusive. A strong literature base suggests that women, tending toward self-blame and rumination, manage stress differently than men, who are more likely to confront or display aggression [14,15]. Among many other gendered health and social outcomes [19,20], these distinctive stress responses are reflected in gender discrepancies in self-violence under stress; evidence supports a stronger relationship between economic deprivation and suicide among men than women [21,22] as well an increased susceptibility to post-traumatic stress disorder following traumatic exposure among women [23][24][25]. Group-specific stress management strategies have also been shown to vary in effectively reducing the negative consequences of stress [27][28][29][30]. The coping methods women are more likely to employ are thought to contribute to their increased risk for traditional conceptualizations of depression [30] and post-traumatic stress disorder [31], whereas men's management behaviors seem to reduce their risk for psychological distress but increase risk of physical harm and cardiovascular disease [30,32]. Still, even given what is known about the distinct coping behaviors of women and men, the body of evidence for the factors driving such variation among black and white persons has yet to reach consensus. It is also well-documented that racial and ethnic minorities in the U.S. rely more on social support, racial and ethnic identity formation [33], and John Henryism [34] in navigating stress than Americans of European descent. These strategies for coping with stress have been linked to improved emotional health and social attainment but increased risk of poor behavioral and physical health [35,36], including hypertension among black men [36], metabolic disorder among black women [37], and cardiovascular disease within both groups [38]. What remains to be clarified are the factors causing these distinctive coping behaviors. Within-race gender differences in methods for coping with racial stressors have also been identified [39,40]. Black women have been shown to be more likely than black men to respond to gendered racism through increased intake of foods high in fat and sugar, stress management strategies that may partially explain higher rates of obesity within this group [41]. Likewise, studies have also noted within-gender racial differences in coping with gender discrimination with significant implications for mental health [42], lending credence to the necessity of an intersectional approach to understanding and addressing psychosocial stress as a contributor to racial and gender inequities in health outcomes. Further complicating efforts to clarify the role of stress in mediating the effects of social inequity on health, there is strong indication that individuals employ unique methods for managing different types of stressors [43]. Both women and men have been shown to respond differently to gender-identity threats than stressors unrelated to gender identity [44,45]. Black persons tend to manage race-based stress differently than generic life stressors, relying more on spirituality, racial identification, and behavioral reactivity in the former [16,17,28]. These discrepancies highlight the importance of not only considering stress management strategies but also stressor type in exploring variation in the impact of social factors on health across social groups. For this reason, we limit this review to theories for racial and gender differences in methods for coping specifically with stress stemming from threats to racial and gender identity. --- Social identity-related stressors Social identity-related stressors are a unique class of stressors with far-reaching health implications. Stress stemming from threats to group identity can be both acute and chronic, causing situational as well as general anxiety about the devaluation of a highly valued social self-concept [45,46,47]. Although many identity-based stressors likely impact on health outcomes, this analysis focuses on stressors associated with racial and gender identity. These identities are theorized as the two most salient and highly valued social identities [46,47], among many others. The more central an identity is to self-concept, the greater the effect of identity conflict on psychological well-being [47]. Of social-identity related stressors, those that challenge conceptualizations of one's race or gender, such as discrimination, stereotyping, rigid gender norms, or perceived norm violation, are therefore likely to exert the greatest influence on psychological and physical health. These stressors may act both indirectly through coping strategies that affect health behaviors, and directly through the physiological impact of the psychological distress they can cause among those employing ineffective, maladaptive cognitive coping strategies [48,49,50]. Further, the experience of threats to multiple social identities concomitantly has unique implications for stress management and health [44,51,52] but has only recently been considered within the stress and epidemiological literatures and remains understudied [53]. The ability to successfully investigate causal factors in stress response patterns and their contributions to racial and gender health disparities is limited by conceptualizing management strategies as a function of individual social identities. Drawing on intersectionality theory [54], Thomas, Witherspoon, and Speight [55] emphasize the unique influence of gendered racism on black women's adaptive resources, highlighting the interactive effect of both one's race and gender in the experience of stress. Without considering the specific psychological processes individuals engage at the nexus of racial and gender statuses, a comprehensive perspective on causes of social group variation in stress management is not achievable. An objective of this review is therefore to outline and assess the strength of the evidence for application of intersectionality theory to stress and coping frameworks of health disparities. --- Interdependency of cognitive, physiological, and behavioral stress responses Responses to stress traverse a wide range of cognitive and physiological processes that are thought to be heavily interdependent [27,43,56], and influence how individuals choose to manage stress [57]. For example, sympathetic nervous activity in response to experiences of racism has been shown to be associated with racial identity centrality among black persons [58][59][60]. Similarly, the effect of gender discrimination on women's neurological activity is tempered by feminist identity [61]. These observations indicate that physiological responses to identity stress are not solely neurobiological in nature but are also directly a function of cognitions related to self-concept that may vary with gender and race. Summarily, psychosocial and cultural factors are hypothesized to influence how individuals manage physiological and cognitive experiences of stress, such as through self-blame, rumination, emotional eating, prejudice, or aggression [9,11,13,15,41,44,45]. Together, these findings provide insight into the complexity of the stress response from appraisal to behavior. However, the evidence also indicates a level of correlation between the distinct stages of the stress process that justifies the inclusion of a wide range of cognitive, physiological, and behavioral factors in assessing differences in stress management across gender and race as a cause of health disparities. This review therefore includes studies that cover a range of exposures and outcomes within different stages of the stress process. --- Present study Theorizing that stress response and management strategies moderate the relationship of social inequities with health, effectively intervening on health disparities requires a clear understanding of the causes of social group differences in strategies for managing social identity-related stress. Although there have been reviews of gender differences in coping strategies , these reviews have either not evaluated theoretical frameworks or have failed to consider the interplay of race/ethnicity and gender in these effects. Additionally, despite a significant body of evidence on the topic, there has been no systematic review of theories for the unique methods black and white Americans employ to manage social identity threats. A selective review of literature on coping with racism [27] differs from the current review in two ways: the authors emphasize evidence for the effectiveness of certain coping strategies rather than reasons for group differences in stress management, and, secondly, do not explore the role of gender in shaping individual management preferences. To address this lacuna, we reviewed both theoretical and empirical investigations of factors influencing variation in methods for stress management of race and gender identity-related stress among black and white women and men. --- Methods --- Literature search Databases searched for potentially relevant studies include Ovid PsychINFO ) and PubMed . Databases were searched for English-language articles using keywords including 'racism', 'sexism', 'racial discrimination', 'gender discrimination', 'sex differences', 'race differences', 'race', and 'gender', paired with terms such as 'chronic stress', 'stress', 'coping strategies', 'coping', 'self-esteem', 'stigma', 'trauma', 'social identity', and 'identity threat'. See supplementary materials for a complete list of keyword searches. Titles or abstracts of these articles were manually searched to identify studies relevant for inclusion. Reference lists of full-length articles flagged for inclusion were manually searched to identify additional potentially relevant studies. --- Study inclusion and exclusion criteria All US-sampled, English-language studies of theories for gender and/or racial differences in strategies for coping with social identity-related stressors were considered for inclusion. Both theoretical and empirical studies were considered as long as theory was explicitly addressed in empirical studies. Based on an initial review of select social-psychological literature focusing on social identity threat [47,49,63], we observed that stressors of this type typically fall into five categories which we used to define exposure inclusion criteria: interpersonal or institutional racial discrimination, interpersonal or institutional gender discrimination, unspecified racial identity threat, unspecified gender identity threat, and stereotype threat. Studies in adolescents , those without black or white participants, dissertations not published in peer-reviewed journals, and book chapters were not considered for inclusion. There were no study design limitations for eligible publications. --- Data extraction Search and identification of studies eligible for inclusion, as well as data extraction using a data collection form, was performed by one review author . Extracted data included stressor type, outcome, subject race and gender, and conceptual framework . Full-text articles of publications flagged for inclusion based on title and abstract review were retrieved, and one review author screened full-texts, identified studies for inclusion, and recorded reasons for exclusion of ineligible studies. Fulltext articles flagged for inclusion as well as extracted data were then verified by a second review author to ensure reliability. Any disagreement in eligibility and data extraction was resolved through discussion, or, as necessary, consultation with a third review author . --- Data synthesis A descriptive synthesis of important study characteristics was undertaken, including characteristic on which comparison was based, race and gender of primary subject group, stressor type assessed, hypothesized coping moderators, outcomes under study, and study quality based on consideration of bias and limitations, validity of measures, appropriateness of study design for study objective, clarity of analysis presentation, and consistency of analysis with study objective. Due to significant heterogeneity in exposure, outcome, and methodology, we focused our narrative on the theoretical underpinning of race and gender variation in stress management rather than attempting a quantitative synthesis of exposures or outcomes. Attention is also given to concordance between subject race or gender and stressor type across studies. --- Results A PRISMA diagram summarizing identification of potentially relevant studies, as well as those included and excluded is presented in Figure 1 [Figure 1 near here]. 5,638 publications were identified through a search of two databases, of which 160 met inclusion criteria. Manual examination of reference lists yielded another seven articles identified for inclusion, resulting in 167 total studies. The majority were cross-sectional , but other study designs-40 theoretical, and 22 qualitative-were included . Due to the large number of included studies, an overview of study characteristics, including hypothesized coping moderators, is presented only in supplementary materials. Table 1 reports the number of studies assessing each type of social identity-related stressor by participant race/ethnicity and gender [Table 1 near here]. Seventy-nine studies addressed racial/ethnic differences in identity-related stress management without theoretical regard to gender; 45 of 49 empirical studies confirmed a priori hypotheses. Fifty-four focused on gender variation without distinguishing race/ ethnicity, with 27 of 31 empirical studies confirming theory. Fifty-four considered the interplay of race and gender; 26 of 37 empirical studies found evidence of interactive effects. Theories were either conceptualized or tested quantitatively in demographically diverse populations. Drawn from both high and low socioeconomic backgrounds, participant age ranged from 18 to 93 years [46,57,64]. Although eligibility criteria required studies to include Americans of African or European descent, Latinx, Arab, Native, and Asian persons were also among those sampled in the included studies. Consistent with other communitybased research designs, female participants tended to outnumber male participants in mixedgender empirical studies, ranging from 46% [61] to 72% [65] of the total sample. The inclusion of studies with qualitative design permitted small sample sizes; these ranged from six focus group participants [33,64] to 161,165 in the largest cross-sectional study [66]. Stress management strategies are posited to moderate a wide range of psychological and physical health outcomes. Anxiety [67], aggression [13,45], depression [52,[68][69][70][71], metabolic disorders [2,72,73], and substance abuse [74][75][76] are the most commonly studied outcomes, but the compiled literature also addresses the impact of stress management strategies on health-related behaviors such as smoking, care-seeking, and eating habits [41,[77][78][79][80][81]. Strategies for managing stress are also linked to broader social outcomes such as generativity [64]; political beliefs [66]; academic performance, educational attainment, and occupation [63,[82][83][84][85][86][87][88][89][90]; social activism [91]; parenting practices [92]; and prejudice [93][94][95][96][97][98][99], factors which are frequently positioned as downstream causes of health [100; 101]. For clarity, we organize the results into theories focusing solely on causes for racial/ethnic variation, those focusing only on gender variation, and those considering race and gender variation simultaneously. --- Theories for racial/ethnic variation in stress response and management Three distinct categories of theories emerged from within the 79 studies addressing only racial/ethnic differences in managing social identity-related stress without theoretical regard to gender, suggesting variation as primarily a function of social status, culture, or the unique nature of racial stressors. These categories were not established a priori but determined based on assessment of the reviewed literature. Despite failing to consider potential withinrace gender variation, 45 of the 49 empirical studies in this group confirmed a priori hypotheses. All seven qualitative studies yielded results concordant with these empirical findings, with the remaining studies being 24 theoretical papers. Social status-Within the compiled evidence, social status was proposed as a contributor to racial/ethnic differences in coping in 30 of the 45 empirical studies with positive findings. These findings were consistent with data gleaned from the six qualitative studies exploring social status as a moderator of racial/ethnic differences in coping. These empirical studies also tested and confirmed theories proposed in 21 of the 24 theoretical commentaries. This group of studies posits a prominent role for one's social position as a member of what is considered a racially dominant or subordinate group in shaping stress response and management. Within this paradigm, the methods black persons employ to manage identitybased stress are attributed directly to their uniquely disadvantaged social positions. Being previously and chronically targeted by racial discrimination [70,74,75,86,89,[103][104][105][106][107][108][109][110][111][112][113][114][115][116][117][118][119][120]; being subject to racial humiliation [117]; perception of oneself as having a stigmatized identity [121][122][123][124][125][126][127][128]; and recognition of one's membership in a negatively stereotyped group [16,43,65,129,130] are characterized as experiences specific to occupying a subordinate social status. According to the reviewed literature, these psychosocial risk factors increase physiological and behavioral reactivity [2,28,105,112,113,115,131,132], passivity [132], hypervigilance [106,113,134], and use of avoidant or numbing coping strategies [111,116], while reducing self-efficacy [72,83,107,[134][135][136][137][138], sense of belonging [65,90,116,117], and self-esteem [71,112,116]. The latter three self-evaluations have been shown to act on health through social attainment and health behaviors [72,83,116,118]. Furthermore, stress stemming from occupation of a marginalized social position is shown to consume cognitive resources [126,127,132] and in turn limit the strategies individuals feel are accessible or effective in managing stress [105,111,112]. On the other hand, the literature offers that as members of a dominant racial group, white persons are geared toward shame [135], aggression [96], outgroup derogation, and distancing [94,[96][97][98]136,137] in perceiving threats to their social identities. Preference for active and high self-efficacy coping strategies among white persons as the dominant racial group in the United States are proposed as stemming partly from a lack of legal or social repercussions for interpersonal or structural violence toward black Americans and other nonwhite ethnic groups under the historical contexts of systemic racism [16,138,139]. Cultural context-In 17 of the 45 studies empirically confirming theory, evidence suggested that the diversity in stress management strategies across racial/ethnic groups results more from the distinct cultural contexts in which these groups are situated. The centrality and content of racial/ethnic identity [33,58,59,74,79,82,106,[140][141][142][143][144][145][146][147][148], personal or familial beliefs about race [105,134,135,148,149], and dominant racial narratives [40,79,108,148,150] are theorized as some of the primary contributors to coping preferences and are framed as products of culturally-indoctrinated principles and practices. Each cultural paradigm is argued as shaping an individual's appraisal of racial stressors [40,151] and the culturally-permitted responses to that appraisal [13,40,102,108,151,152] through racial and ethnic identity formation [33,58,95], which in turn yields disparate coping styles [148,153]. According to the literature, the racial narratives permeating dominant white American culture emphasize unalterable traits and abilities characteristic of each race [136,154]; multiculturalism and racial integration as violation of traditional norms and authoritarian beliefs [93]; and cultural inferiority of racial minorities as the primary drivers of criminal, educational, occupational, and health inequities [16,109,136,137,155,156]. These culturally-informed beliefs manifest in competitive victimhood [157,158] as well as prejudiced attitudes and behaviors [144,159] in the contexts of identity-based stress stemming from threats to white racial identity. In addition to the at times fatal consequences for members of racial minorities that some of these stress responses among white persons can bear , these culturally-shaped methods for coping with identity-based stress are thought to impact on health behaviors such as problem drinking, self-harm, and domestic violence, as well as psychological well-being [160] within this group. In contrast, culture theorists contend that Africentric coping [105]-reliance on spirituality and social support, for example [33,40,146,161]-stems from devaluing and disengaging [89] dominant narratives to recreate positive black identities consistent with the group's cultural history [146,148]. The centrality of racial/ethnic identity is demonstrated to affect both adaptive [33,86,146,150] and maladaptive [33,75,109] stress management behaviors. Unique nature of racial stressors-The nature of racial stressors is thought to differ essentially from those of a non-racial nature and therefore requires unique management strategies that will be prominent within groups mostly likely to be exposed to racial stress [40,67,112,149,[163][164][165][166]. Indeed, neurobiological studies demonstrate differential neural responses to race-related stress compared with generic life stressors [2,59]. These models suggest stressor-specific appraisal, which subsequently yields stressor-specific management strategies. Some frameworks theorize the immediate psychosocial environment as one pathway over which social status, culture, and the unique nature of racial stress act to inform coping. Identity-triggering cues [163] are covert or overt reminders of one's stigmatized identity and are embedded to varying degrees in the social environment. Signifying a psychosocial threat, these triggers activate the stress response system and amass the variety of coping resources dictated by an individual's personality traits, social position, culture, and the type of stressor to which the individual is exposed [126][127][128][152][153][154]. For example, being in the numerical minority as one of few black persons in a majority white workplace [43,103,106,153] can trigger racial identity salience, generate racial identity-related stress, and require identityspecific coping, such as disidentification with previously valued social self-concepts [43,65]. For those likely to encounter environments highly saturated with such identity-triggering cues, these coping styles can subsequently influence occupational performance and satisfaction [127,128], trust in the medical profession [67], and goal setting [16], along with other behaviors and emotional states with implications for psychological and physical wellbeing [41,58]. --- Theories for gender variation in stress response and management Fifty-four studies focused on gender variation without distinguishing race/ethnicity. Among these, 27 of 31 empirical analyses confirmed a priori hypotheses. Like racial/ethnic theories, culture and the unique nature of gender stress are hypothesized to account for variation in management of social identity-related stress between women and men. However, where racism and racial discrimination are envisaged as products of the unequal social statuses of black and white persons, gender prejudice is generally conceptualized more as a function of cultural traditions delineating strict gender roles. Finally, there is a school of thought which hypothesizes that the distinct physiological constitutions of women and men may partially catalyze differences in coping but none of the included theories propose such physiological differences as the central drivers of gender variation in coping. Cultural context-Twenty-two of 31 empirical studies confirmed hypotheses that encultured gender norms are the most significant contributors to coping differences between women and men . Although black and white persons are observed as subscribing to contrasting cultural norms, culture theorists contend that hegemonic masculinity is centrally located within both of these cultural paradigms and drives gender differences in stress response and management irrespective of race/ethnicity [61,45,71,81,85,97,[174][175][176][177][178][179][180]. Dominant narratives place men as the head of the social and family structure holding decision-making power [169,[175][176][177], as the primary breadwinners [39,122,150], as more mathematically oriented [65,85,88,161,[167][168][169], as bearing a biologically-based inclination for physical aggression [45,[181][182][183], and as more capable of effectively managing stress [133,184,185]. As the salience and composition of racial/ethnic identity lends itself to specific management styles, so too does gender identity moderate the effect of cultural norms on responses to social identity stress. In contexts of a perceived threat to their gender, men adhering to this type of culturally-prescribed masculinity are more likely to demonstrate sexual aggression and prejudice toward women [45,170,181,187], general aggressive tendencies [13,159,163,182], reduced help-seeking behavior [79,81], cognitive rigidity [187], homonegativity [170,189], victim-blaming in rape and racially-motivated crimes [136,174,175,190], social dominance orientation [93,96,182], and suicide [171,173,188]. Similarly, the degree of women's subscription to a culturally-constructed gender identity affects stress management through increasing likelihood of cognitive flexibility [188], as well as risk of stereotype threat [65,88,179,191,192], rumination and other depressive symptoms [71,192,193], racial and gender prejudice [96,98,186], avoidant and emotionfocused strategies [124,185,190,194,195], and poor eating behaviors [73,196,197]. Some empirical studies focus on the role of "unsafe" identity environments which cue women's awareness of the stereotypes attached to their performance in certain social, academic, and professional domains [86,88,176,177,191,198], and subsequently affect sense of belonging, physiological reactivity [191], and self-evaluation [71,176,177]. Unique nature of gender stressors-Another school of thought characteristic of the present studies proposes that gender stress is appraised differently than other forms of stress and therefore requires unique stress management strategies. Like racial stressors, the perceived pervasiveness of gender inequity leads to distinct neurological and cognitive processes based in a need to manage chronic threats over which one has no control [61,126,186,[199][200][201]. The resulting strategies produce a proclivity for deference [187,188,199], internalized stigma [44,82,84,119,175] and emotion-focused coping [52,69,185,191], all of which are risk factors for the mood disorders such as PTSD and depression which are more prevalent among women [23,24,31,57]. --- Interaction effects of race and gender Beyond the individual contributions of race/ethnicity and gender to coping differences between black and white persons, the literature offers some support for an interactive effect of these two types of social identities in explaining variation in stress response. Although only 65% of the studies in this review exploring intersectionality support a statistical interaction, a moderate theoretical base bolsters these empirical findings. These frameworks assert that at the junction of socially-constructed race and gender, distinct cultural prescripts bear upon one another, demanding resources uniquely shaped by the stressors individuals face as a result of occupying multiple social positions [52,67,92,[202][203][204][205][206][207][208][209][210][211][212][213]. Gendered racism, as an example, is proposed as a contributor to the Superwoman Schema, a culturally-scripted role for black women as the source of community and family cohesiveness, simultaneously primary earner and household caretaker, expected to bear an extensive burden often at the cost of their own emotional and physical needs [203,209,213]. Adhering to these cultural norms predispose black women to a higher level of automated coping such as emotional eating [41,196,197], and avoidance [52,76,80,161], in addition to social support seeking [92,161], and faith and spirituality [161,202,210] when compared with black men. Black women's internalization of sociocultural expectations also influences perceived efficacy in career development; members of this group are more likely than black men or white women to enter service professions consistent with their limited historical opportunities in order to minimize exposure to racism and sexism [83,86,213]. Though often considered maladaptive "passive" strategies, evidence shows that disengaging and devaluing dominant racial and gender narratives also allow for the development of empowered selfconcepts such as the Superwoman Schema among black women that subsequently reduce the likelihood of long-term psychological harm under chronic identity threat [55,83,92,127,161,204,207,[213][214][215][216]. Black men, on the other hand, most likely of the groups under study to be victimized by racially-motivated physical violence [130] and to perceive racism as a threat to their culturally-prescribed gender identity [13,39,103,217], have adapted to gendered racism in ways distinct from those of black women according to the reviewed literature. Through anger repression [35,130,148], generativity [64], 'healthy' paranoia [131], negative coping [33,108,135], distancing [33], racial identity building [108,138], and intimate partner violence [13], members of this group demonstrate unique gendered race-specific responses to identity stress. With the exception of two studies [66,96], none of the included literature distinguished the strategies for coping with identity-based stress and associated health outcomes unique to white women or white men. --- Discussion This systematic review revealed a number of important characteristics of published literature on theories for the factors contributing to disparate stress management strategies employed by black and white women and men to manage social identity-related stress. First, these theories appear to fall into distinct categories that were not established a priori. Secondly, researchers predominantly use psychosocial models to interpret stress management differences. There is also some theoretical support for an interactive effect of race and gender but less empirical evidence. Finally, studies disproportionally focus on how women and black persons cope with being targeted by prejudice and discrimination as opposed to how stress response and management strategies of men or white persons are affected as perpetrators. Distinct theory categories emerged from the compiled literature. Among the included studies, racial/ethnic theories describe social status, culture, and the unique nature of racial or ethnic stressors as the primary drivers of stress management differences. Across theory categories, empiricial studies found that black persons are more likely to cope with racial discrimination or racism using both passive and hypervigilant strategies [106,111,113,116,132,134]; as well as racial identity development [33,86,150], while white persons under racial identity threat are shown to commonly employ prejudice and aggression [149,155]. The compiled literature also identifies distinctions between the coping behaviors of black women, who are more likely to engage in emotional eating and form close-knit social circles, and those of black men, who rely more frequently on racialization and hypervigilance when exposed to racial identity threat. As noted, few studies distinguish the coping behaviors of white women and men under identity threat. Likewise, gender theories hypothesize culture and the unique nature of gender stress as moderators of the distinct management styles used by women and men. Empirical studies found that women are more likely to cope with gender identity threats through ruminant, avoidant, and emotion-focused strategies [71,192,193,124,185,190,194,195]. In contrast, the literature highlights certain coping strategies among men exposed to gender identity threat including sexual aggression and prejudice toward women and queer persons [45,170,181,187,189], as well as general aggressive tendencies [13,159,163,182]. Because of the complex interaction of social environments with cognitive processes, these categories should not be considered rigid or mutually exclusive. Instead, they are offered as a way of organizing an extensive yet disjointed body of research around potential points of intervention in a manner consistent with the range of theoretical frameworks underpinning the literature included in this review. Theories suggesting social status inequities as the primary causes of coping differences among black and white women and men were the most frequently tested and supported. Although no formal assessment of study quality was conducted, studies based on primary data typically employed rigorous methodology consistent within the social psychological disciplines, using standard, appropriate analytic techniques and measures previously validated within the populations under study. However, while methodology was clearly outlined and justified in the majority of studies, limited sample sizes and the cross-sectional design of many of these studies hinder generalizability beyond the university-level students among whom studies were typically conducted. Still, results from studies using primary data were often consistent with those of studies analyzing large national datasets, suggesting broader application of findings regarding a compelling role of social status in moderating differences in strategies for coping with identity-based stressors. A complete listing of characteristics of the included studies can be found in supplementary table 1. Overwhelmingly, even among those studies which did not assess the intersectional effects of race and gender identity, empirical evidence supported social status theory which contends that contrasting experiences of occupying marginalized versus dominant social positions inform the contrasting stress responses among black and white persons in the context of identity-based stress. Such variation in strategies for coping with stress may partially explain patterns in disease outcomes across these groups [163]. The majority of papers outlining theoretical frameworks without the inclusion of empirical analyses proposed hypotheses which were tested and confirmed in the studies using empirical methods. Only three hypotheses generated from these theoretical frameworks regarding the causes of differences in coping between black and white persons were not directly tested using empirical methods: the 3D framework for strategies of managing threats to white racial identity [143]; the theory proposing sexual addiction as a response to race-based PTSD among African-American men [111], and the identity triggers theory of health inequity [163]. Although such theories are consistent with previous findings, additional research is necessary to generate conclusive evidence of their validity. As noted earlier, many studies included in the review failed to consider the interplay of race and gender on coping preferences in the context of identity-based stress. That these studies uncovered differences by race or gender individually indicates that while the effect of social status or culture on the ways an individual copes with stress associated with prejudice and discrimination may operate differently at the junctions of race and gender, there are some experiences of stress that impact on coping behavior in a consistent manner within race and gender groups. Still, the compiled evidence does build some theoretical support for an interactive effect of race/ethnicity and gender on stress response and management style [64,83,181,184,201,203,207,209]. Particularly among black women and men, race and gender identities as unique cultural scripts and adaptive processes are thought to feature prominently in their distinctive reactions to social identity stressors [64,131,141,142,203]. In contrast, although a moderate amount of evidence exists, empirical support for either an additive or multiplicative effect of interacting race and gender identity on coping preferences in any of the four gendered race groups lags. The empirical studies that do apply intersectionality to a stress and coping framework for health disparities largely focus only on black women, suggesting that the strategies for coping with identity-stress they employ results from cultural ideals of black womanhood that developed out of the unique stressors black women endure as a result of their race and gender. Whether these coping strategies can be attributed to the experience of being a black woman remains inconclusive because very little empirical research explores stress responses among white women following exposure to gendered racial identity stressors. Likewise, while noting some maladaptive behaviors among black men, few empirical studies highlight how such coping strategies employed by members of this group in contexts of gendered racism can also be adaptive and reduce the risk for poor psychological and physical health. Only two of the included studies applied the intersectionality framework of stress management to white men, and although both studies empirically confirmed theory, few conclusions can be drawn from such little data. Study design limitations could also partially account for inconsistencies within empirical analyses of the intersectionality framework. In some of the included studies , the operationalization of intersectional exposures may have been inconsistent with the manner in which these constructs were conceptualized. Because of the highly subjective nature of perceived discrimination, the measures frequently used to evaluate an interactive effect of race and gender discrimination may not fully capture the conceptual definitions outlined by intersectionality and multiple identity theory [51,52]. Such misclassification could potentially bias effect estimates an reduce the likelihood of uncovering and intersectional effect. Still, despite the disproportionate focus on black women and some methodological drawbacks, the current literature indicates that identity-related stress may be experienced and managed according to the synergistic effects of gender and race. Like previous reviews of gender [62] and racial/ethnic [27] influences on stress management, ours suggests that researchers primarily rely on psychosocial or sociocultural frameworks for explaining differences in stressor-specific management strategies among black and white persons. Comparatively few studies explore a neurobiological basis for differences, although these models are more frequently drawn upon for gender theories than theories for racial/ethnic differences-likely because notions of biologically-based sex differences are often extended to stress management theory [61,182,184,188]. The preference for psychosocial explanations could be due to a recognition and proactive shift away from the controversial history in which scientific investigation was used to promote racist and sexist ideology [49,138]. The disproportionate focus on psychosocial or sociocultural models could also stem from technological limitations which have until recently prevented the empirical testing of hypothesized differences in neurological activity. With the recent advancement in neuroimaging technology, exploring the role of neurobiology in shaping stress management techniques has become more feasible and may lead to a refocusing of stress theory. This may enable greater insight into group differences in stress management, as neurobiological methods allow for objective measures of physiological stress. A recent shift within the scientific community recognizing the legitimacy of social scientific theory [1] may also factor into the predominant use of psychosocial and sociocultural frameworks in explicating social group-based strategies for coping with social identity stressors. Irrespective of the reasons for the disproportionate use of these models, theories positing social status and culture as drivers of group differences in coping strategies are more frequently supported by empirical evidence than other explanations. Another characteristic of the reviewed literature is that the majority of included studies investigate the manner in which women respond to being the target of sexism or gender discrimination or how black persons manage being targeted by racism or racial discrimination. Very few studies explore how subscribing to racist or sexist ideologies, or the ways in which masculine identity threats or threats to white racial identity affect stress management strategies. A historical dearth of racial, ethnic, or gender diversity in social psychological research likely contributed to a previously imbalanced focus on understanding the psychosocial causes behind racism and sexism rather than the effects of prejudice on those victimized. In efforts to address this historical disparity, some argue that a purposeful effort was made to shift the perspective from perpetrators to targets of racial and gender discrimination [71,217]. While correctly considering the need for contextualizing the experiences of those who suffer social oppressions, this reorientation limits the capacity to examine the role that dominant social status and subscription to prejudiced ideology plays in health outcomes while simultaneously weaving a counterproductive narrative that social inequities only negatively impact those occupying subordinate positions within the social hierarchy. Such a conceptualization has potential to both increase the difficulty of achieving effective public health interventions on social inequity and reduce incentives to do so. There are some limitations to this review requiring acknowledgment. We excluded studies not published in English, not including US samples, dissertations not published in peerreviewed journals, and book chapters, so it is likely that relevant literature on the topic was omitted. Still, this decision was made to standardize the quality and scope of included studies in order to optimize comparability and utility of the compiled evidence, which was extensive despite the exclusions. Additionally, only one reviewer selected articles and extracted data from included studies. However, the introduction of bias into the selection process was minimized by using a data extraction form and a second review author to confirm. While we have chosen to focus only on the intersectional effects of race and gender on strategies for coping with stress, we recognize other important demographic characteristics that contribute variation to stress management preferences, including socioeconomic position, sexual identity, and geographical location. A complete analysis of these characteristics within a single study would be neither achievable nor informative. Our intention is to provide insight on the two characteristics we argue accounts for the largest proportion of this variation. Finally, because we limited our analysis to studies including only black and white participants, our findings may not be generalizable to other groups. An individual's unique cultural and social context is thought to play heavily into the stress management process; any effort to explain the root causes of this process within specific cultural groups therefore requires an analysis of those groups specifically. Our review also has notable strengths. This is the first review of its kind, an extensive endeavor attempting to amass and synthesize scattered evidence of the individual contributions of race and separately gender to the management of a unique class of chronic stressors. Furthermore, we build on previous reviews of gender differences in coping, and a review of racism-specific coping, by evaluating the effect conferred by experiences of identity at the junction of race and gender, and by focusing specifically on theory for why these experiences differ between black and white women and men. --- Conclusion In identifying major categories under which theories for racial/ethnic and gender differences in strategies for managing social identity-related stressors fall, we highlight areas of needed systematic theory and empirical research on the causes of variation in coping processes and the effects of such variance on health inequities among black and white Americans. The evidence appears strongest for theories proposing social status influences on racial/ethnic and gender identity formation as a moderator of methods for managing social identityrelated stress. Support for these theories could be strengthened through the use of prospective cohorts and nationally-representative samples, as well as study designs accounting for potential within-race and within-gender variation in the effects of such stressors. As this review highlights, a large proportion of research exploring the role that psychosocial stressors such as discrimination play in promoting health disparities focuses on racial or gender differences without considering the theoretical and methodological implications of grouping individuals among whom the effect of exposure may differ. In order to more fully understand the implications of multiple intersecting identities that may simultaneously operate to shape an individual's experience in the context of psychosocial stressors, additional empirical data on the interactive effects of race and gender on coping are needed, particularly among black men, white women, and white men. With greater consistency in methodology, future empirical studies may yield additional information pertinent to clarifying mechanisms for the health consequences of exposure to social inequity among black and white women and men in the U.S. --- Supplementary Material Refer to Web version on PubMed Central for supplementary material.

Sociodemographic group-specific strategies for stress management may contribute to racial and gender disparities in health outcomes in the United States. We aimed to systematically review theoretical and empirical investigations of factors influencing variation in response to and management of identity-related stress among black and white Americans. OvidPsychInfo and PubMed databases were searched to identify eligible studies. Criteria were participant age of ≥ 18 years, conducted in the US sampling black or white participants, and published in English in a peer-reviewed journal. The final sample included 167 articles. Theories suggesting social status inequities as the primary contributor to disparate strategies employed by black and white women and men to manage social identity-related stress were most frequently tested and supported. Studies disproportionally focused on how women and black persons cope as targets of prejudice and discrimination rather than on how management strategies of men or white persons are affected as perpetrators. Finally, there was theoretical support for an interactive effect of race and gender on stress management, but empirical evidence was lacking, particularly among black men, white women, and white men. The literature could be strengthened through the use of prospective cohorts and nationally-representative samples, as well as study designs accounting for potential within-race and within-gender variation in the effects of social-identity related stressors on coping. With greater consistency in methodology, future empirical studies may yield additional information regarding group differences in stress management pertinent to clarifying mechanisms for the health consequences of exposure to social inequity among black and white women and men.