Datasets:

mimiklee

/

masterthesis_clean_text_20k

like 0

The integrated care for older people encompasses a series of measures designed to identify and manage both the physical and mental capabilities of these individuals, while providing support to caregivers responsible for providing care. Care for the older adults, in most countries, is provided by informal caregivers , and women are the main caregivers . The act of caring for someone is a complex task, as it involves several changes and adaptations by both the caregiver and the person being cared for. It is common for caregivers to experience, over time, physical and mental health problems, withdrawal from family and social life, restrictions on leisure activities and, consequently, burden and worsening quality of life . In this context, considering the importance of the caregiver in the comprehensive care of the older adults, the complexity of the act of caring and its repercussions on the life of the caregiver-older dyad, we issued a call for the Research Topic "Caregivers of older people: reflections about living, health, work, and social conditions" with the aim of gathering up-todate evidence and encouraging further research to understand the living, health, and care conditions of caregivers of older people, in different cultural contexts, as well as advances in care and educational practices for this public. This Research Topic incorporates eight articles to inform research and practices about caregivers of older people, including Brief Research Report, Original Research, and Systematic Review. We also highlight the contributions of research from different geographic scopes such as Asia , Europe , and Americas . We are satisfied with the quality and scope of the contributions received, exceeding our expectations. Most articles explained about caregivers of older people with dementia. Many caregivers do not have the necessary knowledge to offer dignified care to the older adults, and they end up acting in an experimental and improvised way. Wang et al. identified an association between dementia literacy , assessment of care and psychological wellbeing, and suggested that health professionals incorporate information about dementia literacy in health education for caregivers. On the other hand, the lack of knowledge can encourage caregivers to seek other forms of learning for care, such as using the internet. Teles et al. study with informal caregivers of older people with dementia investigated the reasons why they used the internet, and the most frequent report was the use to search for generic information about dementia. On the other hand, the lowest frequency of reports was to share experiences with other caregivers online. For the caregiver to offer quality care, he must be well both physically and emotionally. In the study by Cho et al. investigated the determining conditions for depression in caregivers with dementia and found that the gender of the caregiver has an impact on this morbidity, while economic activities are associated with depression in the general population. Burden is another manifestation of stress resulting from the process of caring for an older person, covering multidimensional aspects that involve biopsychosocial issues. Marinho et al. found that caregivers with dysfunctional families and satisfaction with care had the highest burden scores. In this sense, strengthening family relationships and social support are important tools for improving the caregiver's quality of life. Family and social relationships based on reciprocity, cooperation, empathy, and compassion are capable of positively impacting the caregiving experience, also having a beneficial impact on the older person's life. Sato et al. explained that a person with training in Humanitude-care tends to have more empathy, that is, skills to respond emotionally and understand the emotions of people with dementia. The authors revealed that humane caregivers showed more empathetic behaviors, evidenced by facial expressions of stimuli and greater brain activity compared to controls. Other psychosocial interventions that can positively impact the caring process have been identified by Hoel et al.. Such interventions include encouraging older people with dementia and their caregivers to carry out shared activities and promoting structural changes in the environment in which people with dementia live. In addition, training caregivers on strategies to promote the physical, cognitive, and emotional health of people with dementia can contribute to the enrichment of care relationships. Still on the importance of training, the World Health Organization developed iSupport for Dementia, an online program that aims to provide skills training and support for family caregivers of people with dementia. Ottaviani et al. evaluated the usability and acceptability of iSupport-Brazil and found results that indicated that the system interface is friendly and the content relevant. Caregivers rated the program as very useful and would recommend it to other caregivers as the usability was considered excellent. Interventions related to the care process should also consider aspects related to mourning, since the death of an older person does not alleviate care stressors. Alves et al. observed that the transition to grief among caregivers can lead to a decline in mental health, suggesting the need for support during this phase. As the articles published in this Research Topic demonstrate, reflections on the reality of caregivers involve complex interdisciplinary issues that do not end with the results presented here. We hope that reading this topic will awaken the critical awareness of care providers and researchers so that advances in the area are constant. --- --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Editorial on the Research Topic Caregivers of older individuals: reflections about living, health, work and social conditions

Introduction War or armed conflict is one of the most severe human-made adversities. It is frequently accompanied by collateral damage and injuries to the body and mind, destruction of homes and property, significant economic and social costs, and additional long-term negative effects [e.g., ]. Studies on the impact of war on psychological resilience indicate the negative effects of distress, anxiety, and uncertainty on individual and social resilience [e.g., ]. Other studies indicate that in face of stressful conditions resilience is predicted not only by negative effects but also by positive effects . We submit that two major responses may simultaneously characterize the Ukrainian population, who face a war that threatens their independence and survivability as a nation . Accordingly, as long as hope to survive and successfully overcome adversity still exists in such stressful situations, feelings of resilience and identification with the individual's country will likely prevail, despite the perceived threat, distress symptoms, and destruction caused to individuals and communities . It should thus be expected that the Ukrainians would express a higher level of resilience compared with the Israelis that have been experiencing wars and armed conflicts for over seven decades but do not at present perceive a threat to their independence or survivability as a nation. The investigated Ukrainians are presently affected by the ongoing Russia-Ukraine war which has been prevalent for months and its resolution is not as yet foreseen. Accordingly, to better understand the level of resilience as well as coping factors in Ukraine, we compared results in Ukraine, with results from Israel, measured during a recent armed conflict with Gaza. Periods of war or armed conflicts elicit among civil societies and individuals varied coping mechanisms, which are aimed at assisting the population and the society to continue their functioning. In the scientific literature, one can find several protective and vulnerability factors of people and countries during, and after a crisis or adversity . One conventional way to characterize coping factors is to break them down into protective and vulnerability factors. Protective factors are those indices that the higher they are, the more successful coping they indicate, and vice versa. In the current study, we examine three protective factors: subjective wellbeing, defined as a positive perception of one's life . Earlier studies reported a positive correlation between wellbeing and coping . morale is defined as a general term for positive feelings about the prescribed activities of the group . Earlier studies have found that the level of morale was correlated significantly and negatively with a sense of danger and depression and positively with individual and national resiliencies . Hope is the combination of an aim to meet set objectives with the perceived capacity to invest the required energy that is needed to do so . Earlier studies reported a positive correlation between hope and good coping . Vulnerability factors are those variables the higher they are, the more they decrease coping and the less successful function they indicate, and vice versa. In the current study, we have measured three such factors: Distress symptoms [anxiety and depression; ]. A sense of danger regards the extent to which the individual perceives his or her immediate environment as endangering his/her life and/or the life of those closest to him/her . Perceived threats are cognitive appraisals of the personal significance of any event threatening his/her wellbeing . All three vulnerability factors were found in earlier studies as negatively associated with good coping [e.g., ]. Both protective and vulnerability factors have been found to impact the coping and functioning of populations faced with varied stressors. A positive association was found between wellbeing and optimistic sentiments . A positive correlation was also found between hope and wellbeing, as well as between hope and resilience . and Arampatzi et al. , have argued that hope and resilience are closely aligned constructs, as they both include a tendency toward maintaining an optimistic outlook in face of adversity. Solomon and Prager have shown that a sense of danger is negatively associated with the perception of control during adversity. Many studies have presented that resilience-the ability to recover and return to effective functioning, during and following different adversities, may be associated with the above-mentioned coping mechanisms . These associations have been found concerning the capacity of the individual [i.e., -individual resilience; ], the community [i.e., community resilience; ], and the society [i.e., societal resilience; ] to recover following adversities. Previous findings have shown that individual resilience is significantly and positively associated with hope and morale, during periods of war or terror events . However, an examination of the relevant literature indicates that only a rather small number of studies have empirically investigated societal resilience and associated it with antecedent variables [e.g., ]. These data suggest that SR levels may reflect environmental conditions and demographic attributes, as well as social and psychological factors. Furthermore, SR reflects political-psychological attitudes such as the strength of democracy and trust in leadership among the population of the investigated society . For example, Kimhi et al. demonstrated the validity of the societal resilience scale comparing Israel, the Philippines, and Brazil. Research has indicated that SR is positively associated with wellbeing, higher economic status, trust, and, social norms and negatively associated with psychological distress and exposure to adverse security experiences . Additionally, SR was found to be positively associated with both individual and community resilience [e.g., ]. Three main objectives of the current study were: to identify the level of individual, community, and societal resilience, as well as protective and vulnerability factors among the Ukrainian population. To compare the results among the Ukrainian population with results of a former sample of Jewish Israelis, measured during a recent armed conflict. To examine to what degree the contribution of each of the protective and vulnerability factors, as well as the demographic characteristics, predict the three types of resilience among the Ukrainian sample. Based on the findings of previous studies [e.g., ] we assume that the three protective factors and three vulnerability factors will significantly and positively associate with each other. Additionally, we expect that the three protective factors will significantly and positively correlate with the three types of resilience, while the three vulnerability factors will negatively and significantly correlate with the three types of resilience. Considering the essential differences between the war in Ukraine and the armed conflict between Israel and the Palestinians, we assumed that the Ukrainians would report a higher societal resilience compared with the Israeli sample. The question of the relative importance of the examined variables is presented as an open-ended research question, as we could not find previous studies that have examined this issue. Frontiers in Public Health 03 frontiersin.org --- Methods --- Sample and sampling The study was conducted among a sample of the Ukrainian population, living in all Ukrainian regions, except for Crimea and the areas that were at the time under the occupation of the Russian army . Data collection was performed by a Ukrainian internet panel company, sampling the varied sectors of the population . The characteristics of the respondents are presented in Table 1. The data collection was conducted on 22-28 July 2022, about 5 months after the invasion of Ukraine, which took place on 24 February 2022. The findings regarding the level of resilience and coping factors were compared to a sample of Israeli civilians , that was assessed in May 2021, during an active conflict between Israel and Gaza , that was characterized by thousands of rocket attacks on civilian communities . --- Tools The study was based on a structured questionnaire that was ethically approved by the Ethics Committee of Tel Aviv University . The scales used were validated tools that were shortened for this study. Shortening the scales was done based on the calculation of the reliability of each scale and the effect of excluding items on the Alpha Cronbach, using data that was previously collected with the longer versions. Only scales that proved to be highly reliable after shortening was used. The questionnaire included the following sections: Distress symptoms . Four items relating to anxiety and 4 items relating to depressive symptoms were included, ranked on a 5 point Likert scale, ranging from 1 = not at all to 5 = to a very large extent. The internal reliability, measured by Alpha Cronbach of the scale was very good . Wellbeing . Five items were included, ranked on a 6-point Likert scale, ranging from 1 = very bad to 6 = very good. The internal reliability, measured by Alpha Cronbach of the scale was good . Societal resilience . Ten items were included, ranging from 1 = strongly disagree to 6 = strongly agree. The internal reliability, measured by Alpha Cronbach of the scale, was excellent . Community resilience . Nine items were included, ranging from 1 = do not agree at all to 5 = agree to a very large extent. The internal reliability, measured by Alpha Cronbach, of the scale was excellent . Individual resilience . The two items suggested by these authors were used, ranging from 0 = do not agree at all to 5 = agree to a very large extent . The internal reliability, measured by Alpha Cronbach, of the scale was acceptable for two items scale . Hope . Three items were adapted in their context to a security threat , ranging from 1 = very little hope to 5 = very much hope. The internal reliability, measured by Alpha Cronbach, of the scale was very good . Morale. We have used one item: "What is your morale these days?" The answer to the question was given on a 5-point Likert scale, ranging from 1 = very bad to 5 = very good. Sense of danger . Four items were included . Perceived threats . Five items relating to 5 types of adversities were included-economic, social, security, political, and health risks. The responses were given on a 5-point Likert scale, ranging from 1 = not threatening at all to 5 = threatening to a very large extent. The internal reliability, measured by Alpha Cronbach, of the scale was found to be good . Demographics. Characteristics included 13 items: age, gender, socio-economic status, education, political attitudes, level of religiosity, level of exposure to the war, and more. --- Results We examined the correlations among all the research variables . As expected, all the protective factors were significantly and positively correlated with each other, and all the vulnerability factors were significantly and positively correlated with each other. In addition, the three types of resilience significantly and positively correlated with all three protecting factors, and significantly and negatively correlated with two vulnerability factors . The protective and vulnerability factors significantly and negatively correlated with each other. A sense of danger was not associated with any of the resilience indices or the level of hope and was only negatively associated with wellbeing and morale, and positively associated with distress symptoms. To better understand the signification of the three types of resilience, as well as protective and vulnerability factors in the Ukraine sample, we compared their results with the same variables of an equivalent Israeli sample, measured during Operation Wall Guard . We have used analysis of variance to compare all means of the relevant measurements of both samples. Results of these comparisons indicated the following: The Ukrainian respondents reported a significantly higher level of societal resilience , and community, and individual resilience , compared with the Israeli respondents. The Ukrainian respondents reported a significantly lower level of wellbeing and morale , compared with the Israeli sample. In contrast, the Ukrainian respondent reported a significantly higher level of hope , compared with the Israeli sample. The Ukrainian respondents reported a significantly higher level of vulnerability factors, compared with the Israeli sample: distress symptoms and sense of danger , and perceived threats . --- Prediction of resilience among the Ukraine sample Using Path Analysis , we have examined six coping factors , controlling for each other, as predictors of individual, community, and societal resilience. We have analyzed this prediction in two steps: We have used a saturated model . Results indicated the following: Hope and wellbeing predicted significantly the three types of resilience, morale significantly predicted IR and CR, perceived threat significantly predicted SR and distress symptoms predicted significantly IR. We eliminated all the non-significant paths and ran the path analysis again. Results indicated that a sense of danger did not significantly predict any of the three types of resilience and was eliminated from the analysis. The updated path analysis indicated the following results : Hope is the best predictor of SR, CR, and IR: the higher the hope, the higher resilience reported. Wellbeing significantly predicted SR, CR, and IR: the higher level of wellbeing, the higher resilience reported. Morale significantly predicted IR, and CR: the higher level of morale, the higher resilience reported. Distress symptoms significantly predicted IR: the higher distress, the lower IR reported. Perceived threat significantly predicted SR: the higher the perceived threat, the lower SR reported. The five predictors together explained 18% of IR, 19% of CR, and 36% of SR variability. Overall, according to this analysis, it is possible to assess that the protective factors were better predictors of resilience, compared with the vulnerability factors. Results indicated good Model Fit: CMIN = 0.16, NFI = 0.999, FMIN = 0.014, CFI = 0.996, RMSEA = 0.042. We conducted additional path analysis using demographic characteristics as predictors of the three types of resilience, controlling for each other. Initially, the following demographic variables were examined: religiosity, gender, age, current settlement size, family status, region of living , average family income, region of living before the war, and the country where the participants have been born. Next, any demographic variable that did not significantly predict at least one type of resilience was removed from the path analysis equation, resulting in two relevant demographic variables . Results indicated the following: Average family income significantly and positively predicted IR, CR, and SR: the higher the level of income, the higher level of resilience reported. Gender significantly predicted IR and SR: females reported a higher level of SR, compared with males and males reported a higher level of IR, compared with females. Each of the two demographic variables explained only 1-3% of the three types of resilience constructs. Overall, this result indicated that demographic characteristics add very little to the prediction of resilience. --- Discussion One of the interesting and somewhat unexpected results of the current study is the finding that all three types of resilience, societal, community, and individual resilience, of the Ukrainian population, were significantly higher than that of the Israeli population, which was also measured during a period of an armed conflict . There are several possible explanations for these results, stemming from the different actual, as well as perceived, characteristics of the two conflicts that the two nations were involved in The war in Ukraine is perceived as a war that endangers the sovereignty of Ukraine as an independent country , and as such may be considered as "a war of independence" or even "a struggle for survival" [e.g., ]. In contrast, the round of fighting in Israel did not endanger its existence and was not perceived by the Israelis as an essential part of the fight for independence or the survival of the nation . The war in Ukraine strengthens, among others, the national identity of Ukraine and is a source of pride and identification with the country. The round of fighting in Israel is not related to the Israelis' identity . The war in Ukraine resulted in millions of Ukrainian refugees who were forced to leave their country because of the war , while Israelis remain in their homeland. The war in Ukraine continued for almost 6 months without seeing an end, while the round of fighting in Israel lasted only several days. It may be assumed that the prolonged adversity and uncertainty concerning the time and status of its completion, impact the Ukrainians' perception of the struggle . This could also be attributed to the fact that the Israeli population has been coping with the geopolitical conflict for several decades now, which may lead to habituation and an increase in resiliency, compared with the acute threat in Ukraine . We conjecture that these characteristics of the war contribute to the relatively high national and communal resilience of the Ukrainians. Further research is needed to support this explanation. The results of the present study clearly show that the various demographic variables had a very small contribution to the prediction of resilience, compared to the psychological variables and especially the protective factors. Still, these results differ from the results of previous studies which presented that demographic variables, such as political positions, age, and gender) contribute to the prediction of resilience, even though it was similarly shown in those studies that the psychological variables contribute to a higher degree [e.g., ]. A possible explanation for these results is the high level of threat that was perceived by the Ukrainian respondents, according to which the Russian invasion of Ukraine territories endangers the independent existence of Ukraine . We suggest that this high perception of threat is shared by the entire sample, beyond demographic differences such as age, gender, economic status, and education. Considering this, psychological variables such as hope and morale are significant predictors of resilience while demographic characteristics contribute very limited to the prediction of resilience in such extreme war conditions. Further research is required to support the explanation proposed by us. In the professional literature, there are controversial views regarding the relative importance of predicting resilience variables by protective factors versus vulnerability factors indices. To a large extent, this issue corresponds to the discussion about negative and positive posttraumatic reactions and the association between them . Though some studies revealed that both types of coping mechanisms similarly impact resilience, recent studies have found that hope is a much stronger and more stable predictor of resilience and effective functioning compared with negative constructs, such as fear, in varied misfortunes, such as pandemics and armed conflicts . The current study supports these findings, presenting that the protective factors are better predictors of resilience in stressful adversities, compared with vulnerability factors . We conjecture that during situations of continuous stressors, such as wars or prolonged pandemics, the protective factors enhance the capacity of individuals, communities, and society to maintain optimism concerning their future, and as such, they also better predict their resilience. Although there are certainly diversities between the two conflicts , comparing the resilience of the two populations during these adversities is not only important but possible because of the following similarities: 1. Both the Israeli and the Ukrainian societies have had to manage protracted conflicts. Though the Israeli-Palestinian conflict has been going on for a longer period of time, Ukraine has also had to deal with an ongoing conflict with Russia, which started even before the 2014 annexation of Crimea. Thus, both populations have endured many years of erupting violence and instability. 2. Both societies are dealing with security impacts on their population, including direct targeting of civilian communities. The data collected in the study took place during a time of daily disruption of the routine of the civilians, due to shelling, displacement of people, and danger of being harmed by rockets aimed at their cities. 3. Both societies have shown a "sense of community" and solidarity that emerged in response to the immediate threat, evidenced by the communities organizing aid for the internally displaced populations. 4. Both societies have developed and/or used innovative mechanisms in an effort to protect their civil population, whether it's Iron Dome in Israel to intercept rockets or the newly procured protective equipment and systems that were supplied to Ukraine by varied Western countries. 5. Both societies have shown the utilization of similar coping mechanisms to deal with the conflict, such as hope and communal support. Despite the diversities of the conflicts, the study has highlighted both similarities and diversities among the populations, thus the findings contribute toward an understanding of mechanisms that impact on the resilience of populations in extreme situations. --- Limitations Several limitations of the current study should be noted as follows: The use of an internet sample does not guarantee a representative sample of the Ukraine population. The age of the respondents and the relatively high prevalence of respondents holding --- Conclusion The present study is of great importance as it examines the effects of an ongoing war on a broad sample of the civilian population in Ukraine, a topic that has not had many research opportunities. It appears that a war that threatens the independence and sovereignty of a country may, under certain conditions, enhance the societal resilience and hope of the population under risk, despite a lower sense of wellbeing and higher levels of distress, sense of danger, and perceived threats. The study also reveals the differences in levels of resilience between two types of wars -a sudden eruption of hostilities versus recurrent conflicts . It is recommended that further research be implemented to monitor the levels of resilience over time, throughout the crisis, to ascertain whether the high levels of societal resilience persist over time. --- Data availability statement The datasets presented in this article are not readily available because the raw data cannot be shared due to the restrictions made by the Ethics Committee. Analyzed anonymized data will be shared upon relevant request. Requests to access the datasets should be directed to BA, [email protected]. --- Ethics statement The studies involving human participants were reviewed and approved by the Tel Aviv University. The patients/participants provided their written informed consent to participate in this study. --- --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

War or armed conflict is one of the most severe human-made adversities. The current study examines the resilience, protective, and vulnerability factors of a sample of Ukrainian civilians, during the current Russian-Ukrainian war. The level of resilience and coping indicators were compared with the responses of an Israeli sample following an armed conflict in May 2021. The data were collected by an internet panel company. A representative sample of Ukrainian residents (N = 1,001) responded to an online questionnaire. A stratified sampling method was employed regarding geographic distribution, gender, and age. The data concerning the Israeli population (N = 647) were also collected by an internet panel company during a recent armed conflict with Gaza (May 2021). Three notable results emerged in this study: (a) The Ukrainian sample reported significantly higher levels of the following: Distress symptoms, sense of danger, and perceived threats, compared with the Israeli sample. However, despite these harsh feelings, the Ukrainian respondents reported substantially higher levels of hope and societal resilience compared, to their Israeli counterparts, and somewhat higher individual and community resilience. (b) The protective factors of the respondents in Ukraine (level of hope, wellbeing, and morale), predicted the three types of resilience (individual, community, and social) better than the vulnerability factors (sense of danger, distress symptoms, and level of threats). (c) The best predictors of the three types of resilience were hope and wellbeing. (d) The demographic characteristics of the Ukrainian respondents hardly added to the prediction of the three types of resilience. It appears that a war that threatens the independence and sovereignty of a country may, under certain conditions, enhance the societal resilience and hope of the population under risk, despite a lower sense of wellbeing and higher levels of distress, sense of danger, and perceived threats.

terized by low financial means, income, education, working conditions, family structure, availability of services, sanitation, disease exposure and lack of social support networks, can contribute to the development of frailty. 3 Frailty is defined as a dynamic state that affects an individual experiencing losses in one or more areas of human functioning, albeit physical, cognitive, social, problems with memory and attention, or reduced vision or hearing, and is caused by the influence of a range of variables that increase the risk of these outcomes, such as dependency, institutionalization and death. [4][5][6] These changes reflect aging-related alterations and involve intrinsic and extrinsic factors which are part of a dynamic and complex system. 7 Searle and Rockwood argued that frailty is a state of increased risk due to the accumulation of deficits and that this risk is related to the number of health deficits that an individual accumulates, and represents a strong risk factor for cognitive impairment. 8 It is understood that frailty and cognition are linked and have implications. Although many of the instruments for measuring frailty do not assess cognition, it is evident that cognitive impairment is a characteristic of frailty. 9 A study involving 304 elderly in a context of high social vulnerability in São Paulo, Brazil, showed that 27.3% of the elderly evaluated were frail had a low educational level and presented cognitive impairment . 10 Rodriguez-Mañas et al. 11 showed the trajectory of frailty that begins with cognitive decline may differ to the trajectory of frailty beginning with physical components. In contexts of social vulnerability, characterized by socioeconomic and demographic dimensions, frailty can be influenced by social exclusion, less access to information, social inequality and lack of social support. Similarly, cognition can be reduced as a result of behavioral issues, unhealthy living habits and lifestyles, educational level and low physical activity. 12,13 Based on international consensus, some studies have considered cognition in the definition of frailty as "cognitive frailty". 14 Cognitive frailty is defined as a clinical manifestation characterized by the simultaneous presence of heterogeneous physical frailty and cognitive impairment. 13 An international study found the presence of cognitive impairment in 40% of frail elderly. The authors also argued that cognition is one of the most rapidly deteriorating systems among the frail. 15 Studies in the area of social vulnerability gain particular relevance when the social context is considered a risk factor for the development of cognitive impairment and consequently leads to the outcome of frailty. The literature still has gaps with regard to studies investigating frailty using the Edmonton Frail Scale and cognition using the Montreal Cognitive Assessment. In this perspective, evaluating elderly and identifying risk factors for frailty can result in prevention and consequently lower costs for health services, since in this context low education and income are determinants of adverse outcomes, related to less access to stimuli, restriction of external relationships and development of inefficacy. However, it is known that not all people with cognitive impairment become frail. The causes of frailty are unclear, from risk factors for frailty to predisposing factors for cognitive impairment, the hypothesis holds there may be an association between both. The aim of this study was to analyze cognitive performance as a factor associated with frailty status in elderly living in contexts of social vulnerability. --- METHODS This is an exploratory, comparative and cross-sectional study, based on the quantitative method of research, conducted in elderly people registered at five Social Assistance Reference Centers of the city of São Carlos, SP, located in vulnerable regions. São Carlos city has 243,765 inhabitants and elderly correspond to 14.9% of the total population. The city has a monthly per capita income of US$ 232.35 and a Human Development Index of 0.805. To cater for the population of São Carlos, this large city has five CRAS. Each CRAS caters for a maximum of 5,000 families, distributed across the reference sectors. 16 The five CRAS have been denoted as I, II, III, IV and V. CRAS I, II and III are located in a region of high social vulnerability. CRAS IV covers regions with average vulnerability and CRAS V is located in a region with very low vulnerability. The social vulnerability of the region in which these elderly reside is classified as 2 on the São Paulo Social Vulnerability Index . The IPVS classifies census sectors of the State of São Paulo in Brazil according to levels of vulnerability based on socioeconomic and demographic dimensions. The socioeconomic dimension includes: percentage of illiterate head of households; percentage of head of household with complete elementary education; average years of education of head of household; nominal household income; percentage head of household earning an income of up to 3 minimum wages . The demographic dimension includes: percentage head of households with children >10 years; mean children per household; percentage with children aged 0 to 4 years. 17 First we conducted a survey of all physical records of registered users at the CRAS, totaling 1451 elderly registered. After access to the registration name, age and address, an active search was performed on all addresses. A total of 1204 users were excluded on the grounds that 679 were not found at the registration address or addresses had changed or the user lived in areas outside the catchment area of the CRAS, and 439 corresponded to losses due to death, withdrawal or refusal, because the elder was alone or lacked understanding to answer the questions. Another 86 corresponded to caregivers of elderly people who were unable to answer the questions of the survey and were not alone in their homes. Therefore, this study included a final total of 247 interviews with elderly. All interviews took place at the residence of the elderly and the visit to households was made between Monday and Friday during business hours. The interview lasted approximately 45 minutes and was carried out by three previously trained undergraduate students on the Gerontology Course of the Federal University of São Carlos to standardize the data collected. Data collection occurred from August 2012 to August 2016. The sample was composed of 247 elderly registered at CRAS who met the following inclusion criteria: 60 years of age or older, registered at one of the CRAS, understood the questions in the interview, agreed to participate and sign the Free and Informed Consent Form. Exclusion criteria were: hearing or visual deficits that would prevent full understanding of the study. A demographic questionnaire, a scale to determine frailty and a cognitive screening instrument were applied. The demographic questionnaire was previously devised by researchers and collected information on: gender , age , ethnicity , marital status , religion , current occupation , time of retirement, education and number of reported diseases . To identify frailty, the Edmonton Frailty Scale was used, developed by Rolfson et al. in 2006 and translated and validated in Brazil by Fabrício-Wehbe in 2009. The EFS evaluates nine domains: cognition, general health status, functional independence, social support, medication use, nutrition, mood, continence and functional performance, comprising 11 items. The maximum score is 17 points, representing the highest level of frailty. Individuals scoring from zero to four points are con-sidered "Non-Frail", five to six "Apparently Vulnerable", seven to eight points "Mild Frailty", nine to 10 "Moderate Frailty" and 11 points or more "Severe Frailty." 18,19 Cognitive evaluation was performed by applying The Montreal Cognitive Assessment developed by Nasreddine in 2005 and translated and validated in Brazil by Bertolucci in 2008. The test evaluates eight areas: visuo-spatial abilities, executive functions, verbalabstraction task, working memory, attention, concentration, serial subtraction task, digits forward and backward. The total score for the instrument is 30 points, and the cut-off 26 points. One point is added to the final score of individuals with ≤12 years of education. Participants that had a score below the cut-off of 26 points were considered as having cognitive impairment and above the cut-off of 26 no cognitive impairment. 20,21 The data was stored using Microsoft Office Excel software . Data analysis was performed on the Windows System, version 9.2 and treated with descriptive statistics. Due to the absence of normal distribution of the variables, nonparametric tests were applied. Cronbach's alpha coefficient was used to verify internal consistency, where values >0.70 indicate high consistency. In this study, values of 0.530 and 0.835 were obtained for the EFS and MoCA, respectively. Due to the absence of normal variable distribution, Fisher's Exact Test was used to compare categorical variables. Multivariate regression was used to verify the association of frailty with cognition. Univariate binary logistic regression was conducted, in which the presence of frailty according to the EFS was the dependent variable considering two groups, frail and non-frail. Independent variables analyzed had as categorical variables: gender, ethnicity, religion, marital status, education, reported illnesses and social vulnerability; and, as continuous variables: age, years of retirement, number of diseases, total score on MoCA and years of education. Of these variables analyzed in the univariate regression model. independent variables that had a p-value ≤0.2 were included in the multivariate model. The independent variables with p-value ≤0.05, adjusted for sex, age and education, were retained in the multivariate model. All ethical principles were observed, as per Resolution 466/12 of the Conselho Nacional de Saúde. This study used and expanded the research database entitled: "The frailty of the elderly and the Basic System of Social Assistance" with the approval of the Research Ethics Committee of the Federal University of São Carlos . This research was approved under permit: 1785874, on October 21, 2016, CAAE: 57857016.0.0000.5504. --- RESULTS The study sample comprised 247 elderly, registered at five CRAS in São Carlos. There was a predominance of individuals that were female , aged 60 to 69 years , white , married and of the catholic religion . Most participants were retired and had from one to four years of education . Mean participant age was 68.5 years and retirement time was 11.5 years . In relation to health, 53.8% of the elderly reported two diseases. Regarding the vulnerability of the region in which the participants lived, most resided in regions of high social vulnerability . It was found that 41.7% of elderly assessed did not exhibit frailty whereas 36.8% had some degree of frailty and 216 had cognitive impairment. The distribution of sociodemographic characteristics, vulnerability and frailty and cognition data of the interviewed elderly are given in Table 1. On the assessment of level of frailty, 216 participants scored below the cut-off of 26 points and 84 had some level of frailty , as shown in Table 2. Factors associated with frailty included number of diseases and cognition , as shown in the Table 3. --- DISCUSSION In the present study, there was a predominance of participants who were female, with a mean age of 68.5 years, white, married, a low educational level and retirees, similar to data for research involving elders from the community in the national context. [21][22][23][24][25] The multivariate regression of the variables in this study was statistically significant for the number of diseases and cognition, in accordance with other studies in vulnerable elderly populations. 8,10,26 The data obtained indicate a demographic prevalence of females, which corroborates the concept of feminization in old age. In fact, women have higher life expectancy, lower rates of mortality from external causes, less exposure to occupational hazards, and consume less tobacco and alcohol compared to men, and more frequently seek health and social services. 27 The low level of education found in this study may be a result of living conditions. Evidence indicates that level of education is a protective factor for the adverse effects to health in older persons. 2 In addition, elderly people with low education may have mental health problems, chronic conditions, as well as social exclusion, less access to information and unfavorable socioeconomic conditions. 12 The literature shows that education can be regarded as a protective factor against cognitive impairment in aging. A multicenter study conducted in the community with Brazilian elderly identified cognitive deficit in 24.8% of the study population and educational level of one to four years. 28 Cognitive impairment in the elderly with lower educational level may be related to less access to stimuli, restricted external relationships and the development of a feeling of ineffectiveness over the years, resulting in frailty. 29,30 Regarding current occupation, in this study there was predominance of elderly retirees, accounting for 137 of the 247 interviewed. Andrew presented socioeconomic status in the elderly as a broad concept that includes factors such as education, occupation, income, wealth and deprivation. 31 In most cases, income affects the health of those that have limited access to services. Another view is that education influences health through lifestyle and behaviors. 32 Regarding vulnerability of social context, 58.3% of respondents resided in regions with high vulnerability. Armstrong et al. conducted a study to determine the association of vulnerability with cognition in elderly Japanese and found that greater social vulnerability was associated with a greater chance of cognitive decline. 33 Of the 247 elderly interviewed, 36.8% had some level of frailty -mild, moderate or severe -similar to data found in the literature. A study of elderly in primary care from the interior of São Paulo interviewed 128 elderly and found that 21.4% were vulnerable and 30.1% showed some level of frailty, according to the EFS. 35 Another study conducted with 240 community elderly in the interior of São Paulo found that 39.1% were frail. 36 Over the past five years, evaluating frailty in elderly has been of interest to researchers with the intention of checking those most in need of medical attention and assistance, with the aim of developing strategies for prevention in the context in which they live. Accordingly, identification and assistance for eradicating, preventing and delaying frailty, when possible, should be incorporated into services in research, with assessments centering on initial identification of the syndrome, focusing particularly on disadvantaged sectors with a view to improving the quality of life in old age. The elderly respondents of this study presented possible cognitive impairment. Comparison of frailty with cognition revealed that 38.8% of frail elderly had cognitive impairment, which corroborates findings in the literature. A study in Brazilian elderly using other instruments to measure frailty and cognition found low cognitive performance for frail older adults aged 65 to 74 years and showed weakness. 37 Another study conducted in elderly which used the EFS to determine frailty and another instrument to check cognition obtained from the frailty, showed that 20% had cognitive deficit. 24 In this study, we found evidence that for every negative point for cognition there was a 0.93 greater chance of the person being frail. The literature shows that the presence of cognitive deficit causes difficulties in the elderly, in addition to changes in self-esteem and quality of life. 38 In addition, elderly tend to experience a decrease in cognitive ability with aging, where this may be driven by genetic or cultural factors, life habits and presence of comorbidities. 34 Given the heterogeneous nature of frailty and cognition -which is also linked to functional decline and capacity -constituting a component of frailty, research is needed to determine the factors that contribute to the frailty syndrome and special attention dedicated to those with cognitive impairment through evidence-based interventions in multiple domains. 13,39,40 No consensus on the definition of frailty exists in the literature and there are numerous tools for evaluating frailty and for cognitive screening. 14 While researchers, policy makers and health care providers generally agree that frailty may have a major impact on society, because it is at greater risk of adverse outcomes, frailty may be reversible with the redirection of actions on the part of primary care services. It is known that cogni-tive decline is a risk factor for frailty and can lead to falls, institutionalization, hospitalization and death. The identification of frail individuals can facilitate decisionmaking and management of adverse outcomes in both conditions. The combination of frailty and cognition increases the risk of adverse health outcomes. The results of this study suggest that cognitive impairment may be a clinical feature of frailty or there may be common factors that predispose people to both outcomes, such as sociodemographic issues. 41 The scientific literature suggests that frailty and cognition interact within a cycle of decline associated with aging, presenting immune dysfunction and neuroendocrine dysregulation. 42 The literature shows significant associations between high levels of Interleukin 6 and high levels of frailty. 43 At the same time, dysregulation of inflammatory pathways can affect the central nervous system and be involved in the pathophysiological mechanisms of neurodegenerative diseases, such as Alzheimer's disease. 44 According to Ruan et al. , biomarkers can be useful for early detection, screening, diagnosis, and clinical research of these pathologies, which seek to determine pathogenic stage and whether the body has an effective response to the treatment to which it is being subjected. 45 Researchers claim that there seems to be a biological association between cognitive impairment and frailty, and that both conditions may share the same pathophysiological mechanisms, although the underlying mechanisms remain unclear. 46 A number of mechanisms have been proposed to explain the link between the relationship of frailty and cognitive impairment, which involve inflammatory processes, neuroendocrine dysregulation, oxidative stress, hormonal dysfunction, low Vitamin D, malnutrition and cardiovascular risks. Chronic inflammation plays a fundamental role in the pathogenesis of frailty and elevated levels of inflammatory cytokines are also associated with cognitive impairment through involvement in the disruption of brain mechanisms, hormone dysregulation and oxidative stress. The hormone testosterone is believed to have the function of a protective effect on cognition through synaptic plasticity in the hippocampus and controlling protein beta amyloid accumulation, while the hormone is associated with reduced muscle strength with age. Insulin is another proposed mediator between frailty and cognition, considering insulin resistance with age. 47 Vitamin D, also has a correlation with frailty and cognition, with low levels of vitamin D indicating cognitive impairment, lower processing of the information and decreased physical functioning. 42 Nutrition can present a link between cognition and frailty due to biological and behavioral effects and, cardiovascular risk may be another factor between frailty and cognition. It is known that impaired muscle function entails, specifically in cardiovascular diseases, small vessels and low-grade inflammation, impairing blood flow, causing sarcopenia and an increased risk of developing vascular dementia. 48 Future studies should investigate frailty in relation to cognition in vulnerable settings, given their scarcity in the scientific literature, to inform public services for readjustment of actions and prevention. Consequently, the identification of people with frailty and cognitive impairment is essential for immediate interventions. In the context of social vulnerability, social risk factors may also affect health outcomes in the elderly. Canadian studies have shown that an overall measure of social vulnerability combining a variety of factors into a single measure can predict negative health outcomes including cognitive decline. Although social vulnerability may provide insights into adverse risks, it is still unclear how this impacts health and aging of the elderly. 49 Limitations of this study include the cross-sectional design employed which does not allow causality to be established between the explanatory and outcome variables to formulate hypotheses. The sample size may limit the generalizability of the results, however, a large number of refusals can be expected in research using an active search of participants. There was difficulty accessing registered users of the CRAS on account of social issues: violence, trafficking in narcotics and unhealthiness of the residence for the elderly. This study made it possible to provide information about the frailty status in social vulnerability in relation to cognition. There was no indication that the elderly with some level of frailty showed cognitive impairment. Frailty was negatively associated with cognition and was statistically significant. To tackle frailty and track the cognition of vulnerable elderly requires early detection on the part of the public services caring for this population as a means of alerting to the risks. These results do not reduce the importance of conducting research in a context of social vulnerability, since the extrinsic context implies risks to the individual. --- Author contributions. Isabela Thaís Machado de Jesus: conception and design or analysis and interpretation of data, writing of article or relevant critical review of intellectual content. Marisa Silvana Zazzetta: conception and design or analysis and interpretation of data, writing of article or relevant critical review of intellectual content, approval of final draft for publication. Fabiana de Souza Orlandi: conception and design or analysis and interpretation of data.

Elderly who live in the context of social vulnerability have lower education and socioeconomic status. Objective: To analyze cognitive performance as a factor associated with frailty status in elderly living in contexts of social vulnerability. Methods: An exploratory, comparative, cross-sectional study using a quantitative method was conducted with elderly people registered at Social Assistance Reference Centers. A semi-structured interview, the Edmonton Frail Scale and Montreal Cognitive Assessment were applied. The project was approved by the Research Ethics Committee. To analyze the data, a logistic regression was performed considering two groups (frail and non-frail). Results: 247 elderly individuals participated in the study, with a mean age of 68.52 (±SD =7.28) years and education of 1-4 years (n=133). All the elderly evaluated resided in vulnerable regions. Regarding frailty, 91 (36.8%) showed frailty at some level (mild, moderate or severe) and 216 (87.4%) had cognitive impairment. On the regression analysis, frailty was associated with number of diseases (OR:1.60; 95%CI: 1.28-1.99) and cognition (OR:0.93; 95%CI: 0.89-0.98). Conclusion: Identifying level of frailty and cognition in socially vulnerable elderly reinforces the need for early detection in both these conditions by the public services that provide care for this population with a focus on prevention.

• Loneliness can have a negative impact on the psychological and physical health of an older adult. • The perception of loneliness can be altered. • Social and psychological interventions can counter the harms caused by loneliness. • Identifying loneliness and social isolation should form an integral part of a comprehensive geriatric assessment. The impact of loneliness on psychological well-being and physical health is recognised and a topic of growing interest. Cultural factors and societal expectations influence both reported rates and patterns of loneliness across the world [1]. However, whilst patterns may differ, the effects are similar in that depression, poor mental health and lower quality of life are reported by those who feel lonely [2]. Both young and old can be lonely. The UK study, The Loneliness Experiment, highlighted the complex nature of loneliness in the adult population. Perhaps unexpectedly, the online survey of over 55,000 adults reported that those aged 16-24 were the most likely to report feeling lonely , compared to 27% of adults aged over 75 [3]. In the UK, the importance of loneliness is being raised by charitable campaigns such as the Campaign to End Loneliness [4]. Additionally, loneliness features within political strategy and has seen the appointment of a Minister for Loneliness. Loneliness can describe the perception a person has about a lack of closeness, affection and often social contact in their life, giving arise to negative feelings [2]. There remains heterogeneity relating to the definition of loneliness given the multifaceted nature of the descriptor. Social loneliness describes the lack of social integration and its negative impact on ones' feelings, whilst emotional loneliness refers to the lack of closeness to others that may then contribute to negative mood symptoms. Social isolation describes ones' lack of social integration. It is important to recognise that a person's perception of the quality of social interactions can result in loneliness [5]. Differentiating between different types of loneliness can help to explain why an older adult living in residential housing can have the self-reported perception of feeling lonely; even if living with others. Loneliness affects 6-13% of the older population with the presence of social isolation known to be higher affecting 11-24%; interestingly with little change in incidence over the past few decades [5][6][7]. The situation throughout the European Union is similar, with social isolation increasing with age [8]. Older adults who report feeling lonely are more likely to develop Alzheimer's disease and depression and with social isolation there is an association with poorer physical health, reduced cognition, mobility, and increased difficulties with activities of daily living [2,5]. Within a rural population of adults older than 50, social isolation was independently associated with poorer health status using physical and mental health scores outcomes; even when groups were matched for age, health conditions, type of housing and depression [6]. Crucially, the perception of loneliness can be altered. Providing a comprehensive geriatric assessment promotes support for the health and well-being of the older adult; identifying loneliness can form part of such an assessment [9]. Social interventions have been found to reduce feelings of loneliness and combat the negative sequalae [5]. Successful interventions have aimed to improve access to social opportunities, develop social skills, whilst enhancing social support and counteracting maladaptive social behaviours [10]. A meta-analysis by Dickens et al. [2] showed that group interventions were more likely to reduce loneliness compared to one-on-one interventions [2]. Interventions that included participatory involvement or social engagement were shown to be effective. Psychological therapies targeted at re-aligning maladaptive social cognition through either cognitive behavioural therapy or psychological reframing, were also shown to have a greater reduction in perceived loneliness compared to those targeting social interactions alone [10]. Drawing population-based recommendations is challenging, given the heterogeneity of the various interventions that were shown to make an improvement to loneliness [2]. The variability of the definition used for loneliness also limits the mainstream applicability of any intervention. Clinicians should strive to be more proactive in combatting loneliness, irrespective of our specialist field of practice. For instance, the NICE guidance for falls prevention cites the need for a social component within exercise programmes, and recognition of lonely adults within such a service may assist overall participant well-being [11]. Social isolation and loneliness in older adults can be improved by encouraging participation in social activity groups [12,13]. Joint ventures and voluntary sector initiatives such as Connecting Communities highlight efforts to encourage community engagement, with the intention of improving well-being within those communities. Befriending interventions aimed at providing social support, through the development of meaningful relationships, have also been associated with reduced rates of depression compared to usual care [14]. So, what now? Asking about loneliness and social isolation should be an integral part of a comprehensive geriatric assessment [9]. Raising awareness of the impact that loneliness can have on the psychological and physical well-being of older adults is important. Voluntary sector initiatives are offering promising solutions to tackle the issues caused by loneliness. Further studies are required, however, to assess the efficacy of social and psychological interventions to influence existing strategy and policy. Declaration of Conflicts of Interest: None. Declarations of Sources of Funding: None.

An enquiry into loneliness and social isolation should be an integral part of the comprehensive geriatric assessment. Loneliness can have negative effects on the psychological and physical health of an older adult. The presence of loneliness is associated with cognitive impairment, decreased mobility and increased difficulties with activities of daily living. Charitable campaigns, such as the Campaign to End Loneliness, are raising the awareness of this important issue. The perception of loneliness can be altered, with social and psychological interventions holding an important role in improving an individuals' perception of loneliness. Voluntary sector initiatives are providing promising solutions to combat loneliness but closer collaboration between voluntary organisations and community services is required. In order to influence the existing strategy and public policy, further studies are required to assess the effectiveness of interventions aimed at improving the harms that arise from loneliness.

Introduction Nepal is one of the South Asian countries with high levels of violence against women and girls . This contributed to the global burden of human rights violations and public health problems. Global research indicates that almost a third of women worldwide have experienced physical and/or sexual intimate partner violence in their lifetime [1]. A similar prevalence was found in Nepal, where 32.4% of women had ever experienced IPV [2]. This study was conducted among 4,210 pan-Nepali women of reproductive age found that 17.5%, 23.4% and 14.7% women reported emotional, physical and sexual abuse/violence by their male partners respectively [2]. Other studies found a 16% prevalence of physical IPV and a 26% prevalence of sexual IPV experiences amongst women [3]. 29% of women had forced first sex [4]. The 2011 Demographic Health Survey reported 47% of women had experience any form of violence against women in their lifetime suggesting IPV and domestic violence are highly prevalent in Nepal [5]. Sexual harassment is a pervasive practice in the work place [6,7]. Understanding the factors that influence women's risk of victimisation and men's perpetration of violence is important for the development of effective violence prevention interventions. Violence within intimate and domestic relationships is a common phenomenon globally and can be attributed to gender norms that promote male dominance over women and women's acquiescence to male power. Research has shown that VAWG results from a confluence of the individual, relationship, societal and political factors that are driven by pervasive patriarchal norms that perceive use of violence as an acceptable practice [8]. Nepal is a strong patriarchal society with social and gender based discrimination, and socio-cultural norms and practices that tolerate violence against women and legitimise use of violence against women and girls [9,10]. In this patriarchal culture, men have supremacy over women and women and daughters are viewed as inferior and subordinate to men, and son-preference is advanced to the detriment of daughters and daughters-in-law [11]. 44% of men agreed that a woman deserves to be beaten [3] while 23% of women and 21% of men believed that husbands beating wives is justified if wives do not cook well, refuse to have sex on demand or argue with them [12]. Being married is also a risk factor in Nepal as ever-married women were more likely to have experienced IPV compared with never-married women. The current spouse is the most common perpetrator of IPV [13], while other studies suggested the mother-in-law is a common instigator of IPV [14,15]. A culture of silence around women's experiences of violence persists in part due to perceptions that violence is normal or fear of retaliation by partners or in-laws or accusations by the community [11]. Hence IPV has been described as hidden in its nature, occurrence and impacts resulting in a significant underestimation of the real level of harm caused to those who are victimised [16]. This suggests the context where the violence takes place is important. Nepal also has a religion-based culture which espouses conservative social and gender norms. In Hinduism, marriage is obligatory and sacramental, more than just a simple bond between two individuals but a bond between families and a promise of continuity in patriarchal family lines with deep religious, social, and institutional significance [17]. Marriage practices dictate that young people be limited from choosing their own spouses. Once married, a woman is supposed to devote her life to her husband's service and taking care of his children [17]. Young married women are expected to live with their mothers-in-law in the early years of marriage in servitude towards and under the mother-in-law's supervision [14]. Nepali women are also not recognized as productive economic citizens and women's access to education and employment opportunities is limited. Consequently women in Nepal tend to be socio-economically marginalised and ultimately disempowered in part due to the patriarchal norms which place less value in the education of daughters compared to sons and limit daughters' destinies only to marriage [18]. The United Nations Development Program has reported a 23.8% poverty rate of Nepali people living below US$1.25/day [19]. In 2014, 83% of 27 million people lived in the rural areas, and agriculture provided 33% of the GDP and women earned 57% less income than men [19]. Women had limited access to productive assets such as land and property, credit and modern avenues of knowledge and information. Nepal is also one of the Asian countries with a highly mobile population. The Nepali economy is increasingly migration-dependent as large numbers of men migrate internally but mostly outside the border for work. Each day an estimated 1400 Nepalese leave the country for overseas jobs, contributing the a total of 527,000 people migrants working outside the country each year [19]. Most migrants are men, and they are likely to leave their wives back at home with limited means of subsistence. Upon their return home from labour outside the country migrant husbands may struggle to adjust to home life in which gendered expectations on them to provide unchanged, to wives and children with whom they have spent a limited time, and to homes which may have remained resource-poor despite having sent remittances. In some instances, women assume some leadership of the home and returnee migrant husbands may struggle with their role as husband. This dissonance may directly or indirectly be associated with husbands' perpetration of intimate but evidence of this associated is limited in Nepal. Our formative research highlighted the underlying factors associated with IPV were prevalent, particularly overburdening of young married women with domestic work, servitude towards and dominated by in-laws influenced by patriarchal gender norms [14]. Socioeconomic factors have been associated with women's exposure to VAWG. Survey results indicated higher socioeconomic status posed risk for some women [20]. Though 77% of married women age 15-49 were employed compared 98% of men, 61% of these women are not paid for their work compared to 12% of men [4]. Those who are employed for cash are more likely than other women to experience physical IPV [4,21] and access to better livelihoods may increase women's partners' resistance to corresponding changes in women's lives [22]. This demonstrates the need to develop programmes to address both gender violence related factors while strengthening women's livelihoods at the same [23]. Those who are employed for cash are more likely than other women to experience physical IPV [4,21,22]. [23] This paper is conceptualised within a context of migration where young married women reside in poor communities where husbands' migration for labour is a common source of income and wives are more likely to reside with extended affinal families while husbands migrate abroad for work. There is limited data on IPV among migrant communities in Nepal. However, a combination of factors including young married women's social positioning in the households, poor relations with the mother-in-law, male control over women, poor socioeconomic conditions and conservative gender attitudes may place women at increased risk of IPV victimisation. Attitudes and practices of male dominance over female partners, adversity in childhood and lack of jobs may increase men's likelihood of perpetrating violence towards their wives. We sought to determine the prevalence of intimate partner violence focusing on women's victimisation and men's perpetration, and examined the factors influencing IPV victimisation and perpetration among women and men enrolled in a research project in migrant communities of Baglung, Nepal. --- Methods --- Study design This paper presents a baseline cross-sectional quantitative study from the One Community One Family project , which seeks to develop a family-oriented behavioural intervention to reduce IPV, change gender norms and increase economic empowerment with a bias towards young married women as the most vulnerable to the structural factors influencing IPV risk within the family. These data were collected in January-2017. --- Setting This study was conducted in two migrant communities, Bhimapokhara and Resha, in the Baglung district of Nepal where a large proportion of men migrate overseas for labour. These neighbouring communities also share similar cultural contexts such as subsistence farming. Baglung is located in hilly landscapes of the western region of Nepal. It covers 1,784 km 2 with a population of 268,613 [24]. Young married women play a crucial role in tending to crops and livestock [14]. The research was conducted in 6 of 9 municipal wards in the two communities and these wards and are treated as clusters in this study. --- --- Questionnaire and interviews Trained interviewers administered to all participants a one-hour questionnaire stored on Tablets. Male and female questionnaires were adapted from previous studies in Tajikistan, and in South Africa [25], and were translated into Nepali and pre-tested for relevance in the Nepali context.All questionnaires had 213 items each, and covered social and demographic characteristics, gender equitable attitudes, household decision making, depression, childhood trauma, sexual and reproductive health, the status of relations with partners and perceptions about the mothers-in-law and intimate partner violence. Social and demographic characteristics. These covered age, ethnicity, levels of education completed, marital status and years married, frequency of hunger in the past 4 weeks, frequency of borrowing money or food because of not having enough money at home, perceived difficulty accessing a modest amount for medical emergencies . We also asked about activities to get money in the last 3 months, the amounts earned and saved. Questions on migration asked about ever migrating for labour, doing so in the past year and where. Further questions explored job seeking , feeling stressed about being unemployed [26], feeling ashamed due to being unemployed and life satisfaction . Relationship and gender attitude scales. We asked about husbands' controlling practices over their wives using a modified form of the Sexual Relationship Power Scale [27],and women's perceptions about mother-in-law and daughter-in-law relations , and perceptions about relations between husband and wife . Community and personal gender norms and attitudes [28], were measured on a 23-item scale with a 4-point Likert response from Strongly Agree to Strongly Disagree . Trauma and mental health. Adverse childhood experiences were measured on a modified version of the short form of the Childhood Trauma Questionnaire [29]. It covered emotional neglect, emotional abuse, physical neglect/hardship, physical abuse, but not sexual abuse . Mental health was measured using the Centre for Epidemiologic Studies Depression Scale scale to assess depressive symptomatology. Intimate partner violence. For the analysis we explored two primary outcomes, lifetime intimate partner violence and intimate partner violence in the past year. The violence questions were adapted for the Nepali context from the WHO multi country study [30] and the Men's Health study in South Africa [31]. Five items were used to measure lifetime perpetration or experience of physical violence and similar number of items were used to measure physical violence in the past year. Three items were used to measure lifetime or past year sexual violence perpetration or experience, and a total of 7 items were used to measure emotional violence. For each type item, the responses were coded as 0 = never, 1 = once, 2 = few times and 3 = many times. We then derived a dichotomous outcome for experience or perpetration depending on whether a participant had experienced/perpetrated any form of violence or not. This was done for both lifetime and past year measures. This was done for both lifetime and past year measures. We asked men about ever perpetrating physical and sexual violence on their wives and women about ever experiencing it. We further explored perpetration and experiences of emotional, physical and sexual intimate partner violence in the past year. --- Ethics The study received ethics approval from the South African Medical Research Council and the Nepal Heath Research Council. Each participant signed informed consent prior to completion of the questionnaire. The purpose of the study was explained, and participants allowed to ask questions and responses to those questions were provided. Participants were assigned a unique identification code which was stored on the questionnaire. Each interview was conducted in private to ensure interviews could not be overheard by others and confidentiality was assured. Participants were given information on available psychosocial services in the community. A packet of seasonal vegetable seeds was provided to each participant to compensate for their time. --- Data analysis The analysis was conducted using Stata 14. In all analysis procedures, we considered the multistage sampling design of the survey, with stratification by district and the enumeration areas being the lowest level cluster. Descriptive statistics were presented as mean with standard deviation or as frequencies with percentages . Bivariate relationships between IPV perpetration/victimisation and attitudinal, behavioural and demographic variables were examined using the Pearson's Chi-Square test for categorical variables and t-tests for continuous variables. All factors associated with IPV perpetration/victimisation in the bivariate analysis , were considered for the multivariate model, and adjusted for age of participant. The analysis considered variables that fitted with the conceptual framework for exposures to VAWG and these included the mother-in-law and daughter-in-law relationship, relationship conflict, childhood adversity and poverty. To account for clustering by district, standard errors of the estimates were estimated using the clustered robust method. Our criteria for significant risk factors in final multivariate model was the p-value of <0.05. --- Results 357 respondents were recruited, 157 were men and 200 women. Table 1 shows the social and demographic factors as well as gender norms and attitudes, health, behaviour and relationship factors. Research participants were aged 16-83 years, and men were older than women with a mean age of 46.3 years compared to 42.8 years. Young married women averaged 27.9 years of age while older women had an average age of 57.7 years, and young married men had a mean age of 31.5 years while older men had a mean of 61.4 years. All the women participating in the study were currently or previously married and all those previously married were widowers. Only 4 men had never married. The mean age at marriage was 17.1 years for women versus 20.8 years for men. 52% of women had currently lived with husbands' families while 43% lived only with their husbands and children. The results showed that women reported significantly higher food insecurity compared to men. The hunger score showed a higher mean for women at 3.34 compared to 3.09 for men. More men found it easy to borrow money for emergencies compared with women . 55% of both men and women reported having borrowed food or money in last 4 weeks. Many women had never engaged in activities to earn an income in the past 3 months; 22% of women had been involved in some activity to earn income compared to 57% of men. Two-thirds of men had ever migrated for work in their lifetime and the majority had migrated in the past year, but only one woman had ever done so. Almost all the migrant men reportedly sent remittances home . The results in Table 1 also show that overall men were significantly more likely to look for jobs or do things to create income compared to women although women stressed over finding work and earning income to support their families and felt ashamed to face their families because they are out of work compared to men. Women held more patriarchal individual gender norms and attitudes compared to men with a mean of 45.0 compared to 44.1 but this difference was not significant. On the participants' perceptions of community gender norms and attitudes, women reported significantly more patriarchal perceptions of community gender norms and attitudes compared to men . More women gave a poor or very poor assessment of their overall health compared to men. 25% of women reported having a disability compared to 8% of men. Among women reporting disability, almost half had difficulty in walking, climbing, washing, or concentration . Women also had a significantly higher mean on the depression scale with a mean of 16.9 versus 9.9 among men. Men reported having had significantly more childhood trauma compared to women . Women were less likely to report having good relations with their husbands compared to men. Women were significantly more likely to believe their mothers-in-law were cruel compared to men's perceptions of their mothers while men were significantly more likely believe their mothers were kind compared to women's perceptions of their mothers-in-law . There was no significant difference among men and women on reporting of husbands being controlling in relationships. Twenty two percent of women reported having ever been physically abused by their husbands while 18% of men had ever physical abused their wives. Significantly one in seven women had ever been sexually abused by a husband whereas only one man reported ever doing so to his wife. When these lifetime measures of IPV were combined, 29% of women reported ever experienced physical or sexual violence from by a husband and 19% of men had ever perpetrated physical or sexual violence against their wives. When asked whether they had spoken to anyone outside the family about the violence they were experiencing from their husbands, only 5% of women reported having done so . Past year measures indicated that emotional IPV victimisation and perpetration were more common compared to other forms of IPV. Women were significantly more likely to report experiences of emotional IPV by husbands in the past year compared to men reporting perpetration of emotional IPV against wives during the same period . Women were also twice more likely to experience physical IPV in the past year relative to 4.6% of men having abused their wives in the past year but this difference was not significant. There was significantly more past year sexual victimisation by husbands reported by women to reporting of sexual violence perpetration against wives by men: 5% versus 1%. When all forms of IPV in the past year were combined, women were significantly more likely to have experienced any form of IPV compared to men's perpetration: 23% of women had reported emotional, physical or sexual IPV in the past year compared to 14% of men . Table 2 shows results from regression analyses of associations with lifetime and past year IPV perpetration and victimisation comparing men with women, and women by in-law status. Men who had ever perpetrated physical or sexual IPV were significantly more likely to have experienced shame for being unemployed, and to have experienced adversity in childhood compared to men who had never perpetrated IPV. Among all women in the study, the likelihood of reporting lifetime experiences of physical or sexual IPV was significantly higher if women were older, were controlled by their husbands and had poorer relations with husbands but having perceptions that their mothers-in-law were kind was protective. Analyses of the associations by in-law status showed that borrowing money or food in the past 4 weeks significantly increased the likelihood of young married women with current daughter-in-law status reporting having ever been abused by husbands. Older women with current mother-inlaw status who experienced lifetime IPV were more likely to hold perceptions that their mothers-in-law were cruel and to report being controlled by husbands compared to older women who never experienced IPV. Table 3 shows regression analyses of associations with past year IPV perpetration. Being younger and work seeking were significantly protective, however, men who perpetrated IPV in the past year had significantly increased odds of reporting childhood trauma and depression compared to those who did not perpetrate violence in the past year. Among women, past year IPV victimisation was associated with increased difficulties to borrow money for emergencies and depression but holding patriarchal individual gender norms and attitudes was protective. Young women with daughter-in-law status had increased odds of experiencing violence by their husbands in the past year if they had unemployment stress while having patriarchal individual gender norms and attitudes and holding perceptions that mothers-in-law were kind were protective. Older women with mother-in-law status were more exposed to violence by their husbands in the past year if they reported a higher hunger score, perceived their mothers-in-law to be cruel and reported depression. --- Table 2. Multivariate associations of IPV perpetration by men and victimisation of women in lifetime and comparisons among women by in-law status. --- Male perpetration Women's victimization Young women's victimisation Older women's victimization --- Variables --- Discussion The baseline study results from the OCOF project showed that the prevalence of IPV perpetration and victimisation in two migrant communities of Baglung district in Nepal is driven by poor socioeconomic conditions of women, male controlling behaviour over wives, poor relations with husband and mother-in-law, men's exposure to trauma in childhood and men and women's experiences of depression at the time of the study. Almost a third of women had ever experienced physical and/or sexual violence by their husbands while almost one in five men had ever done so to their wives. About one in five women had experienced emotional, physical and/or sexual violence by their husbands in the past year compared to one in seven men who perpetrated these forms of violence against their wives during the same period. However, these figures indicate there was underreporting of IPV in this study. These data on lifetime physical and sexual IPV victimisation are lower compared to the 2011 Demographic Health Survey [32] and other population estimates on emotional IPV [2] or physical or sexual IPV victimisation [5,33]. Male perpetration of any form of IPV was also dissimilar to the high prevalent reporting observed in other men's studies in which some men of whom were migrant labourers [34]. Some of the gaps in the lower levels of reporting among women can be attributed to a cultural environment where violence against married women is tolerated [9,10,34], and silence about family and violence-related problems is encouraged [11]. Commensurate with this notion, only 4.5% of victimised women in this study had ever informed anyone outside their marital family about the violence experienced at home . This lack of disclosure of violence victimisation and perpetration was also observed in the formative qualitative research preceding this baseline study [14]. The early age of marriage among many women in Nepal is another significant contextual factor influencing whether women report on domestic and intimate partner violence. The mean age at which women were married in this study was 17 years which is much younger than the legal marriage age of 20 years in Nepal. This suggests that these women had experienced child marriage. Research shows that women married as children are at a higher risk of IPV [35,36]. IPV also occurred within a predominantly male migration context where young married women are heavily burdened with domestic work, and their lives are defined by living in servitude towards and are dominated by in-laws [14]. Regression analyses of factors associated with women's experiences of IPV show women's poor socioeconomic conditions increased their odds of being exposed to violence by their husbands in their lifetime and in the past year. Borrowing money or food in the past 4 weeks increased young married women's risk of IPV in their lifetime threefold, their risk for IPV in the past year was twofold from having difficulties accessing money for emergencies, and hunger also influenced older women's IPV risk in the past year. These results are consistent with other studies that have found that poorer women have increased exposure to IPV [2]. The socioeconomic conditions of men also came to light as men's shame over being unemployed increased their risk of IPV perpetration while being engaged in job seeking was protective. These demonstrate clear connections between IPV and socioeconomic factors associated with women and men's risk of IPV. There is also concurrence with formative research suggesting that women's lack of access to economic resources influence their IPV risk, and that constructions of masculinity are centred on men's ability to earn in this setting [14]. The study results also indicated that older women had significantly higher exposure to IPV, thus mirroring the 2011 Demographic Health Survey results [2]. These results support the need for IPV prevention interventions that focus on economic empowerment, particularly of women. The younger married women were also found to be more likely to experience any form of IPV if they reported having stressed over being unemployed. This measure referred to stress over personal state of unemployment so that it is safe to propose the unemployment stress may be a proxy for women's lower socioeconomic status. Other scholars have shown that the likelihood of experiencing violence is higher among rural women with low socioeconomic status [5]. However, there are contradicting claims that women who are employed have increased risk for IPV [2,33]. This suggests that while women may feel pressure due to unemployment, the nature of interpersonal relations with husband and the extended family may be the underlying factors driving the violence. These findings can also be related to the evidence indicating that men who were ashamed due to having no money or jobs were violent towards their wives. An in-depth understanding of women's socioeconomic aspirations is also required to provide a clear interpretation of these results to inform IPV prevention interventions that can help improve women's economic conditions while building harmony with husbands who are likely to be unemployed. Male controlling behaviour also emerged as having significant associations with women's lifetime exposure to IPV, and this was evident among the older women with mother-in-law status. Men's control over wives is linked to entrenched patriarchal social norms where women and girls occupy lowly social positions relative to men and boys in Nepali society. In the Nepali context, patriarchal social norms ascribe male household decision-making and economic control as a masculine preserve in families [7], and promote multiple restrictions on the mobility, education and economic participation of women [14]. These resonate Jewkes and colleagues who purported that "violence is a consequence of gender power inequities at both a societal and relationship level, and also serves to reproduce power inequities" [37,38]. Poor relations with husbands was also associated with women's exposure to lifetime experiences of IPV thus emphasising that marital discord is a key ingredient in the circumstances leading to violence against married women [1,11]. Other studies also suggest that IPV thrives in relationships with poor spousal communication [39]. Women holding patriarchal gender norms and attitudes was protective against their exposure to IPV in the past year. This reinforces the role of acquiescent femininity that supports and excuses dominant patriarchal norms that promote male dominance over women and tolerate gender inequalities and violence against women. Other studies show that there are social sanctions applied by husbands, in-laws and the community against women who do not conform to expected gender roles [14,15]. It is thus plausible that some young women would defend traditional inequitable gender ideologies [40] as older women do so to protect their interests [41]. Support for gender inequitable norms may also be a product of socialisation into marital relations, particularly as some women marry at a much younger age and are immediately placed under the authority of mothers-in-law whose major role is to perpetuate traditional gender norms for the family [14], and who exert expectations of respect towards elders [42]. For example, young bride's lives in South Asia are governed by subservience to the mother-in-law, but as they get older they are likely to adopt the same unequal power relations with their son's wives [41]. These results emphasise the connections between gender inequitable norms and the prevalence of VAWG and highlight the need to transform inequitable gender norms and ideologies to prevent VAWG [43]. The data also showed that women who held perceptions that the mother-in-law was kind were protected from experiencing any form of IPV. This may have been an indicator of harmonious relations with the mother-in-law, against the backdrop of many studies that have described the daughter-in-law/mother-in-law relationships as often contentious [15,35]. The image of the mother-in-law in some Asian studies is one that depicts dominance [44,45], cruelty [44,46,47], and the usual instigators of intimate partner violence [35,48] and even perpetrator of domestic violence towards daughters-in-law [11,46]. The role of the mother-in-law in IPV is likely evident as demonstrated in the associations between IPV and poorer relations with husbands among young married women with daughter-in-law status in this study. Older women in this study were also mothers-in-law in their own families, and their perceptions that the mothers-in-law was cruel increased their lifetime exposure to IPV. Our results concur with other studies in highlighting the dominant femininity among mothers-inlaw who exert control over young married women, and can be likened to the notion of complicit femininity whereby women are involved in perpetuating patriarchal gender norms [14,[49][50][51], which also make violence against women more permissible. Scholars suggest that this is an internalised patriarchal ideology to gain security in old age by building allegiance with the son while alienating the daughter-in-law [41]. These results indicate the need to develop interventions that address the role of the mother-in-law in creating harmony in family relations. The analysis also indicated that depression was associated with both men and women's exposure to IPV perpetration and victimisation respectively in the past year. This connection between emotional distress and IPV has been observed elsewhere, and particularly in relation to women's report of victimisation by male intimate partners [25,48,[52][53][54][55]. The absence of specific associations with young married women in the regression analyses may imply temporality, thus suggesting that depressive symptoms may be a consequence of long-term exposure [11]. IPV prevention efforts developed for the Nepali context need to address the psychosocial impact on all married women. The men's results also indicate that experiences of childhood trauma were associated with men's perpetration of IPV. Other research suggests that having experienced or witnessed violence in childhood is associated with adulthood perpetration of violence [56,57]. Others have found pathways between co-occurrence and a cycle of abuse and childhood trauma leading to increased risk of perpetration of violence during adulthood and attribute some of this to harsh parenting and the normalisation of violence [58]. This finding suggests the need to address social and gender norms that promote the acceptance of violence at the family and community level and ensure that adequate support is provided to abused women and children, and positive parenting skills are provided at family and community levels. --- Limitations The study had several limitations. The sample was drawn from a small geographical area in a country that is heavily reliant on migrant labour. This sample may not be fully representative of the spectrum of migrant communities in the country. Due to funding limitations, participants from a few families were enrolled, and as expected in a male migrant labour context, there were fewer men in households. This underpowered the study, resulting in large confidence intervals for some variables and implies that prevalence estimates cannot be generalized across all married women and men in migrant communities in Nepal. Current migration of husbands was not directly measured among women as we understood most families had a male migrant as a member of their family and anticipated very few women would have gone abroad for migrant labour. Some aspects of VAWG were not measured, including domestic violence by mother-in-law and father-in-law. The study design of working with the young married woman's family, her husband and in-laws introduced limitations that likely contributed to underreporting of IPV victimisation and perpetration, and potentially other variables. This may be the case despite measures to ensure all participants were interviewed separately, in private and not on the same day as the other members of the family. However, the data is sufficient to provide a good understanding of a limited area of study on the factors influencing women's exposure to and men's perpetration of IPV, and the role of in-laws in women's increased risk for IPV in migrant communities in Nepal. Volunteerism may also have introduced biases in the relationship between variables in ways that are difficult to determine. To address some of the limitations of the study, questions were piloted. In all analyses we controlled for age and clustering. Interpretation of data was triangulated by the VSO team engaging in data analysis, reflecting on the Nepali context particularly regarding the economic conditions and patriarchal gender norms and practices in rural migrant communities. --- Conclusion The study results revealed that poor socioeconomic conditions of women, male controlling behaviour over wives, poor relations with husband and mother-in-law, men's exposure to trauma in childhood and men and women's experiences of depression played a critical role in increasing women's exposure to IPV and men's perpetration of IPV. This raises the need to critically challenge harmful social and gender norms by using approaches that are sensitive to the vulnerability of young married women and unequal power relations with husbands and mother-in-law at the family level. These programmes should also include social and mental health support services to address recent, and long-term consequences of violence exposure for women and men, and young married women's maltreatment by mother-in-law. Young married women stressing about unemployment is suggestive of the need to acknowledge their livelihood aspirations in a setting which often undermines their agency. A holistic IPV prevention approach in migrant communities which combines changing social and gender norms, addressing psychosocial needs and improving socioeconomic conditions of women and men while accounting for the limited resources is needed in Nepal. Gender transformative, violence reduction and livelihoods strengthening programmes stand a chance in building harmonious family and couple relations and reducing women's exposure to violence while improving their economic conditions if implemented together. Such an intervention would need to be relevant to the cultural context, the nature of families and socioeconomic conditions of women in families in Nepal. --- All relevant data are within the paper and its Supporting Information files. --- Supporting information S1 ---

This paper aims to describe the prevalent forms of intimate partner violence (IPV), and the factors associated with IPV among women and men living in the two migrant communities of Baglung district, Nepal. 357 adult women and men were enrolled following a family model, interviewing young married women with daughter-in-law status in the home, their husbands, and mothers-in-law and fathers-in-laws using an electronic questionnaire. Random effects regression modelling compared men and women, as well as young married women with daughter-in-law status and older women with mothers-in-law with status. 28.6% of women had ever experienced physical and/or sexual violence by an intimate partner compared to 18.2% of men ever perpetrated these forms of violence against their wives. Being older, male controlling behaviour and poor relations with husband increased women's IPV in their lifetime while perceptions that the mother-in-law is kind were protective. Being ashamed of being unemployed and childhood trauma were associated with men perpetrating IPV in their lifetime. Borrowing money or food increased young married women's lifetime IPV risk while mother-in-law cruelty and male control increased older married women's lifetime IPV exposure. Factors associated with IPV in the past year among men were being younger, job seeking, experiences of childhood trauma and depression exposure among men while difficulty accessing money for emergencies, holding inequitable gender attitudes, and depression was associated with women's increased IPV exposure. Unemployment stress, holding inequitable gender attitudes and mother-in-law kindness were associated with young women's increased IPV risk and hunger, mother-in-law cruelty and depression with older women's IPV risk. There is a need to critically challenge harmful social and gender norms by using approaches that are sensitive to young married women's position and unequal gender relations in the family. IPV prevention interventions need to employ a holistic approach that combines changing social and gender norms and improving socioeconomic conditions of women living in migrant communities.

INTRODUCTION Rural areas are considered as the center of production in developing countries, including Iran, and play a key role in ensuring the independence of each country, especially in the field of food security . Rurals have many economic potentials and entrepreneurial opportunities that, if properly planned, can create a dynamic and diverse economy in these areas by flourishing and exploiting them . The high growth rate of hidden and overt unemployment in rural society compared to urban society on the one hand and the impossibility of massive investment for the development of large industries on the other hand, has forced the government to develop entrepreneurial businesses in rural communities . Rural entrepreneurial businesses are one of the most important elements of rural economy that through exploitation of entrepreneurial opportunities in rural areas cause job creation and reduce unemployment, increase income and increase productivity and ultimately achieve sustainable rural development . In defining rural entrepreneurial businesses, three criteria can be considered: first, that they are located in a rural area and second that they offer and sell rural services and products , and third that Third, these businesses are considered entrepreneurial businesses when they are based on the exploitation of entrepreneurial opportunities in the rural environment . Throughout history, natural and man-made disasters and crises on various scales have had adverse effects on businesses . In this regard, one of the crises that has recently threatened the survival of businesses and has had an unprecedented impact on them is the COVID-19 pandemic . The disease, caused by Severe Acute Respiratory Syndrome Coronavirus-2 , was discovered in late 2019 in Wuhan, China and on March 21, 2020 by The World Health Organization was introduced to the world as a pandemic . Although COVID-19 directly threatened people's health ; But the implementation of anti-government policies to control this pandemic had economic consequences that caused drastic changes in the economic environment at the micro and macro levels of society ; The COVID-19 pandemic has disrupted the operations of many businesses, including rural entrepreneurial businesses, due to its small size and the vulnerability of this type of business . Various studies show that rural businesses have lower resilience than other types of businesses in the face of COVID-19 . Since COVID-19 has had a devastating effect on rural entrepreneurial businesses, it is essential that the resilience of these businesses be developed to control and manage the negative effects and consequences of this crisis. Also, because rural areas are typically geographically isolated and have weaker human, institutional, and financial capital than urban areas; therefore, resilience is doubly important in rural businesses . Resilience is the tendency of a system to maintain organizational structure and productivity, following the disruption of that system [ : 8]. In other words, resilience creates capabilities for businesses that can survive despite adverse conditions and be on the path of return or even development . In this regard, the effects of the COVID-19 crisis are very noticeable for rural entrepreneurial businesses in Kermanshah province . First, because Kermanshah province has been suffering from unemployment for many years, and second, rural businesses have been largely neglected; While paying attention to this type of business and their prosperity can have a significant impact on solving the problem of unemployment in Kermanshah province. In fact, it can be said that in the context of the COVID-19 crisis, most of the policies have focused on large-scale companies and the industrial sector in urban areas while what is important is the future of microeconomic activities, especially in rural areas ; Because rural businesses are the most vulnerable sector in times of crisis, which in case of closure not only threatens the livelihood of villagers and rural development, but also causes migration from rural to urban areas and the development of marginalization, and also disrupts urban development . Even in non-crisis situations, rural businesses are threatened because of their small scale . The current crisis will also destroy the capital that these businesses have raised over the years. Therefore, considering the importance of rural entrepreneurial businesses on the one hand and the critical situation of the outbreak of the COVID-19 in Kermanshah province on the other hand, the purpose of this study is developing a paradigm model for resilience of rural entrepreneurial businesses in dealing with the COVID-19 crisis in Kermanshah province. Therefore, considering the above-mentioned cases, the main research questions are: What are the causal factors influencing the resilience development of rural entrepreneurial businesses during the COVID-19 crisis? What are the contextual conditions affecting the resilience development of rural entrepreneurial businesses during the COVID-19 crisis? What are the interventing conditions affecting the resilience development of rural entrepreneurial businesses during the COVID-19 crisis? What are the action strategies taken to develop the resilience of rural entrepreneurial businesses during the COVID-19 crisis? What are the consequences of the action strategies adopted to develop the resilience of rural entrepreneurial businesses during the COVID-19 crisis? What is the paradigm model for resilience of rural entrepreneurial businesses in dealing with the COVID-19 crisis? Based on the researches in the field of this study, few and relatively related researches have been done as follows. Beninger and Francis stated in a study that in order to increase the resilience of businesses during the COVID-19 crisis, the integration of nine financial, physical, social, natural, human, cultural, public, political and, most importantly, health capitals is necessary. Beninger and Francis states that in order to increase business resilience, all of these capitals should be used in an integrated manner in planning. Aldianto et al. stated in a study that adaptation factors such as communication technologies as well as knowledge and information factors to deal with the COVID-19 crisis are effective in business resilience. Aldianto et al. emphasize that in order to increase the resilience of businesses, they must constantly monitor the environment. The level of creativity and innovation in businesses should also be enhanced in order to be more sensitive to environmental changes and to provide creative and innovative responses quickly. In addition to increasing resilience, gain a competitive advantage over taking advantage of emerging environmental opportunities. Le et al. stated in a study that social networks and social capital and business management play a decisive role in increasing the resilience of businesses. Le et al. also stated that physical, natural, financial, human and social resources are effective in increasing the resilience of businesses. Saad et al. stated in a study that human factors, social factors, economic factors, cultural factors, infrastructure factors and institutional support are effective in increasing resilience. Portuguez Castro and Gómez Zermeño stated in their research that communication with relevant institutions, human and social capital, and proper management and policy-making can improve the resilience of entrepreneurial businesses in times of crisis. Portuguez Castro and Gómez Zermeño stated that business managers in critical situations in relation to institutional centers need to connect with universities, other research centers and entrepreneurial ecosystems and use their creative strategies to respond to environmental change. Portuguez Castro and Gómez Zermeño stated that business managers in critical situations in the field of human and social capital should train their staff and also strengthen their social networks. Portuguez Castro and Gómez Zermeño stated that business managers in critical situations in the field of proper management and policy-making should have a vision for the future and business development by identifying and exploiting opportunities. Pappas and Brown in a study stated that to increase resilience during the COVID-19 crisis, entrepreneurial decisions should be made for businesses based on the current situation and existing capabilities and capacities. Pappas and Brown stated that business owners should be aware of environmental changes and adopt strategies commensurate with the resources of businesses to increase their resilience. Ngin et al. stated in a study that short-term responses should be provided first instead of longterm systematic resilient measures, and gradually the ability of businesses to deal with these disasters should be enhanced by strengthening crisis-related infrastructure. Hanson et al. in a study stated that entrepreneurial culture is one of the factors affecting the resilience of businesses. Hanson et al. stated that entrepreneurial culture increases resilient responses by exploiting entrepreneurial opportunities and promoting creativity and innovation. Hiramatsu and Marshall in their research state that businesses that have used catastrophic loans have a higher degree of resilience than other businesses that have not used these loans and also more quickly to their initial precrisis equilibrium state. They are back and more exposed to opportunities to improve and enhance their business. Based on the reviewed studies, it can be said that so far few empirical studies have been conducted on the resilience of rural entrepreneurial businesses during the crisis. Also, in the studies, the resilience of businesses in the face of crises such as climate change and environmental crises has been considered more, and the resilience of rural entrepreneurial businesses in the face of health crises has been neglected. Therefore, this study seeks to develop a paradigm model for resilience of rural entrepreneurial businesses in dealing with the COVID-19 crisis with a qualitative approach. --- METHODOLOGY Study Site The present study is limited to Kermanshah province in terms of location. The capital of Kermanshah province is the city of Kermanshah. This province has an area of 24,549 square kilometers. Kermanshah province is one of the provinces located in the west of Iran . Kermanshah province with an area of 24,640 square kilometers is ranked 17th among 31 provinces of Iran in terms of size and occupies 1). The results of many researches indicate that Kermanshah province has many potentials and entrepreneurial opportunities in rural areas and following the exploitation of these rural entrepreneurial opportunities, many entrepreneurial businesses have been established in rural areas of Kermanshah province . Various evidences show that the outbreak of COVID-19 pandemic has disrupted many rural entrepreneurial businesses in Kermanshah province . Therefore, it is necessary to provide a paradigm model to continue the activity and increase the resilience of rural entrepreneurial businesses in Kermanshah province during the COVID-19 crisis. Rural entrepreneurial businesses have different types that in this study, rural entrepreneurial businesses are businesses that have been established through exploitation of entrepreneurial opportunities in agricultural field in rural areas of Kermanshah province. --- Study Design The present study seeks to provide a developing a paradigm model for resilience of rural entrepreneurial businesses in dealing with the COVID-19 crisis using the grounded theory method. GT was developed by sociologists Barney Glaser and Anselm Strauss in the mid-1960s and published in their 1967 seminal book, Discovery of Grounded Theory . GT is a method of extracting concepts from the heart of data and then combining them to create a theory . According to GT, there is no pre-determined hypothesis, but it can be achieved in the process of analysis . When there is no clear hypothesis, or in a region where no field research has been done so far, or little research has been done, the method of grounded theory will provide good results by creating a new theory . Therefore, since based on the studies, no research has been done on the research issue, especially in the study site, and also, because our goal is to arrive at a theory derived from field data extracted from the field under study, the grounded theory method gives us the best answer. Therefore, this method is most suitable for achieving the objectives of this study. --- Data Collection Participants in this study included all experts and key informants in the field of research, such as experienced managers of rural entrepreneurial businesses in Kermanshah province who were selected through purposeful sampling and theoretical sampling. Criteria for selecting samples in this study included the following; Managers with at least 15 years of experience in rural entrepreneurial businesses, as well as managers with at least a university degree in fields related to business management, managers with a history of other business crises . To identify the samples, purposeful sampling method was used first. In this sampling method, because the samples may not be easily identifiable at first, the researcher first identifies the key informants. In the following, the researcher reached another informed person by interviewing the informed sample and receiving the necessary data . In other words, after receiving information from the first key person, he was asked to introduce the person or other people who are experts in the field of research. Thus, using the initial participants, the subsequent participants were identified. In theoretical sampling based on the concept of "comparison", data are collected based on emerging concepts . In this sampling, data collection is mostly done according to the categories and concepts extracted from previous data and is completed with theoretical saturation . Theoretical saturation occurs when no new data is discovered and no new categories are created in the open coding. In other words, theoretical saturation is a point in research where data collection seems repetitive and unproductive . Therefore, data collection, and consequently sample's size, continued until when new data/information no longer brought additional insights to the research questions. Therefore, theoretical saturation was obtained through interviews with 26 people. The tools used to collect the data included semistructured interviews, field notes, and document analysis. It should be noted that each interview lasted an average of 45 to 60 min. With the permission of the participants, their voices were recorded using a tape recorder. Data collection lasted from October 1, 2021 to November 1, 2021. Because the corona virus had spread in Kermanshah province at the time of conducting research, most of the interviews were conducted in face-to-face, in accordance with health protocols and social distance, and some interviews were conducted by telephone. The process of working in grounded theory consists of several stages. The first is to identify the research plan. The purpose of this stage is to identify the questions and constraints of the research . The main focus of the research question is "What is this phenomenon?" . In this study, the general question of the research was what measures have been taken by rural entrepreneurial businesses in Kermanshah province to make their businesses resilient against COVID-19? This study also sought to develop a paradigm model for the resilience of rural entrepreneurial businesses during the COVID-19 crisis. Therefore, the following questions were asked to the participants: From the participants' point of view, what factors cause the development of resilience of rural entrepreneurial businesses in the face of the COVID-19 crisis? What factors affect the resilience of rural entrepreneurial businesses? What actions have been taken to develop the resilience of rural entrepreneurial businesses against COVID-19? What are the consequences of these actions? --- Data Analysis Simultaneously with data collection, the data analysis process began. In this research, we followed Straussian grounded theory and used a coding processor from Strauss and Corbin that includes three stages: open, axial, and selective coding. --- Open Coding Open coding is the first data analysis process that focuses on conceptual analysis and classification of phenomena through extensive data analysis . In this type of coding, events are also conceptually labeled and categorized through constant comparison; In this way, concepts that have a common semantic load are placed in one category and are labeled according to the semantic load of that category . --- Axial Coding The open codes identified in the previous step are compared and clustered by axial coding, and finally they are categorized in Subcategories . According to Liu et al. the main purpose of axial coding is to discover and establish connections between concepts and subcategories and between sub-categories and categories. In other words, axial coding means creating communication and organizing emerging communication between subcategories and achieving a comprehensive theory. Therefore, it is necessary to have a suitable design, which according to Strauss and Corbin , this design is the same as the paradigm model in axial coding. Through the paradigm model, casual conditions, phenomena, contextual conditions, interventing conditions, actions / strategies, and consequences are identified and subcategories are related to categories . As can be seen in Figure 2, the paradigm model defines six categories: causal conditions, phenomena, contextual conditions, interventing conditions, actions and consequences . --- Selective Coding While according to Strauss and Corbin , axial coding investigates the relationships between concepts and categories that emerge in the open coding phase, selective coding can be described as the way in which categories are linked to the main category . In selective coding, the main category is identified and linked to other primary categories, as well as the integration and refinement of the theory using constant comparison and storyline . In this research, the main category was selected and related to other categories logically and systematically through storyline writing. --- Credibility Credibility is achieved through long-term communication and interaction with experts and data, which can be achieved through triangulation . For many researchers, triangulation is considered the use of data collection techniques to investigate a similar phenomenon. In other words, triangulation has been interpreted as a means of cross-validating measures and validating the findings. It represents the types of data, researchers, theories, and methods . In this study, data triangulation was used among different types of triangulation. Typically, this process involves verifying evidence from a variety of sources to illuminate a theme or perspective . Data triangulation refers to the combination of different data sources that are examined at different times and places, and by different people . In this study, data were collected by different people , at different times and in different places . In other words, in this study, credibility was validated using triangulation of data sources, including participant verification, researcher debriefing and capitulations, and note-based audit sequences . For further confirmation, two groups, including faculty members and rural entrepreneurial business managers were employed to confirm the findings. --- RESULTS AND DISCUSSION Demographic Characteristics of the Participants 73.07% of the participants were male and the rest were female. All participants had a university degree in the field related to business management so that 65.38% had a bachelor's degree, 26.92% had a master's degree and 7.7% had a PhD degree. The minimum age of participants was 34 years and the maximum age was 57 years and the average age was 46.19 years. These people also had an average experience of 25.30 years, the minimum experience was 15 years and the maximum experience was 35 years. --- Open Coding In this research, in open coding, the data obtained from the interviews were examined line by line and the concepts were extracted. Based on the findings, 112 codes were initially identified, which in some cases were duplicates, so refinement was done and duplicate concepts were removed or expressed in the form of a concept. After the final refinement, there are 57 concepts left that were classified into different subcategories based on the semantic load. Table 1 shows the results of open coding. --- Axial Coding In the present study, in axial coding, causal conditions included economic management, health factors, human resources management, and adaptation factors. The phenomenon included low resilience of rural entrepreneurial businesses in the face of the COVID-19 crisis. Contextual conditions including social factors; cultural factors and psychological factors. Interventing conditions included business management and legal supports. Finally, action strategies included Planned resilient actions and Unplanned resilient actions, the consequences of which included adapting to crisis conditions and increasing resilience in the long run, and Lack of adaptation to crisis conditions and lack of continuity of business survival in the long run . --- Casual Conditions According to the perspectives of rural entrepreneurs in Kermanshah province, four factors directly cause the resilience of rural entrepreneurial businesses; these factors include economic management, health factors, human resources management, and adaptation factors. --- Economic Management From the participants' point of view, economic management causes the resilience of rural entrepreneurial businesses during the COVID-19 crisis. Participants stated that although COVID-19 directly affects the health of human resources, it has economic consequences for rural entrepreneurial businesses due to the implementation of adaptive and preventive strategies to prevent the spread of COVID-19. Therefore, the participants believed that under these conditions, which face economic problems, the best factor that increases the resilience of rural entrepreneurial business is economic management. Therefore, rural entrepreneurs should seek to increase liquidity through various means including receiving disaster loans , income diversity, previous financial resources, liquidity management, control and reduce costs, manage and increase sales to improve the resilience of their business. This part of the results is parallel to findings Beninger and Francis in separate studies stated that having financial factors will increase business resilience. Hiramatsu and Marshall state in their research that businesses that have used catastrophic loans have a higher degree of resilience than other businesses that have not used these loans. In explaining this part of the findings, it should be stated that one of the main consequences of various crises for businesses is economic consequences. In the meantime, those businesses have more resilience that have the ability to better manage the economy in times of crisis. In other words, in times of crisis, businesses must seek to reduce costs and increase their liquidity and revenue, and manage their financial resources to better overcome the crisis. Rural entrepreneurial businesses are usually not in a good financial position due to their small size and their financial resilience is very low, so what develops the resilience of rural entrepreneurial businesses is economic management. --- Health Factors From the participants' point of view, another factor that increases the resilience of rural entrepreneurial businesses is to prevent the spread of the COVID-19 virus, so to increase the resilience of rural entrepreneurial businesses, it is necessary to follow health principles and protocols. In this regard, participants believed that rural entrepreneurial businesses should be equipped to deal with the COVID-19 virus. Participants stated that addressing the following health factors could cause them to deal with the COVID-19 virus in rural entrepreneurial businesses; equipping the business environment with various sanitary devices , providing disposable health tools to personnel in order to comply with protocols , equipping businesses with early diagnostic tools , adherence to health protocols; daily staff checkup. This part of the results is parallel to findings Beninger and Francis and Aldianto et al. . Beninger and Francis states that health factors in the COVID-19 crisis provide the basis 2) Increasing trust, participation and cooperation in observing preventive measures among personnel and customers; 3) Increase cooperation throughout the supply chain in the business. Cb. cultural factors 1) Strengthening the entrepreneurial culture in business with the aim of providing products or services that are creative and adapt to new conditions and gain a competitive advantage; 2) Elimination of incorrect and opposing cultures by controlling and preventing the spread of coronavirus . Cc. psychological factors 1) Increase staff motivation in relation to business continuity; 2) Increase staff resilience in relation to business continuity; 3) Strengthen the motivation of personnel with coronavirus. Eb. Unplanned resilient actions 1) Sales of some business equipment and machinery; 5 2) Sale of part of the company's shares; 5 3) Temporary deactivation of the business; 6 4) Reducing the quantity of production; 4 5) Decreased production quality. 5 --- Consequences Fa. Adapting to crisis conditions and increasing resilience in the long run 1) Business continuity; 8 2) Recovery of business position; 8 3) Improvement of business position than before of crisis; 9 4) Business growth and development; ) More prepared and developed to face future crises. 6 Fb. Lack of adaptation to crisis conditions and lack of continuity of business survival in the long run 1) More vulnerability in the long run; 7 2) Bankruptcy and inactivity in the long run. 6 References refer to the number of times a concept is coded and emphasized by participants . Findings of the study. for increasing business resilience, and Aldianto et al. in a study emphasized the factors of knowledge and information to deal with the Corona crisis. The COVID-19 crisis is of a health nature in itself and directly targets the health of business human capital. Since the biggest asset of any business is the human capital of that business, so to increase resilience, businesses must pay attention to the health of personnel and take measures to strengthen and protect the health of personnel. --- Human Resources Management Participants stated that the nature of the COVID-19 crisis is such that it directly targets the human capital health of rural entrepreneurial businesses. Therefore, to increase the resilience of rural entrepreneurial businesses, factors that protect human capital should be given priority. Participants stated that personnel information on how to deal with COVID-19 should be updated first, and then human capital skills should be improved through training. Personnel should also perform their duties remotely as much as possible, and staff attendance should be shifted in time. This part of the results is parallel to findings Beninger and Francis ; Le et al. and Saad et al. . As mentioned, human resources are the largest and most valuable asset of any business that any business must protect to achieve increased resilience. Because the COVID-19 crisis directly targets human resource health, businesses must adopt strategies that minimize the risk to their human resources. In other words, human resources in the face of the COVID-19 health crisis must be managed to minimize damage to these valuable human resources and increase business resilience. --- Adaptation Factors From the participants' point of view, crises cause environmental changes, and under these conditions, the organization or business is resilient, which can adapt to the new normal conditions. From the participants' point of view, crises cause environmental changes, and under these conditions, the organization or business is resilient, which can adapt to the new normal conditions. Participants stated that these responses should be systematic and strategic, in other words, short-term responses should be in line with the vision and development of the business in the medium and long term. Participants also stated that they should avoid responses that create consistency in the short term but provide business destruction in the long term. Participants stated that in order to increase the resilience of rural entrepreneurial businesses, their business model should be redesigned to adapt to the existing conditions. In other words, the factors that adapt to the COVID-19 crisis must be added to their business model. They stated that the factors of adaptation in the COVID-19 crisis are the elimination of face-to-face interactions and the use of IT infrastructure. This part of the results is parallel to findings Aldianto et al. . Explaining this part of the findings, it should be noted that the crisis is upsetting the balance of the environment and environmental changes in businesses. Therefore, in order to increase resilience, businesses must adapt to the new normal conditions, and only in this way can they overcome the crisis. What makes adaptation to new conditions is the use of crisis-adapted tools. In the COVID-19 crisis, this tool includes information technology. In other words, the way to deal with COVID-19 is to reduce face-to-face interactions and increase virtual communication. Therefore, rural entrepreneurial businesses in order to achieve maximum adaptation to the new normal conditions and increase the resilience of their business must redesign their business model and use information technology tools in their new business model. --- Phenomenon The phenomenon in this study is the main issue of the research. The main issue in this study is the low resilience of rural entrepreneurial businesses in the face of the COVID-19 crisis. In other words, since the COVID-19 crisis had severely disrupted and risked rural entrepreneurial businesses, it is necessary to provide a resilience paradigm model for them. Therefore, the phenomenon studied in this study includes low resilience of rural entrepreneurial businesses in the face of the COVID-19 crisis. --- Intervening Conditions Intervening conditions refer to aspects that affect or modify the effects or development of a phenomenon . In this study, the intervention conditions include business management and Legal supports. In other words, the interventionist conditions in this study are examined at both macro and micro levels and refers to the policy-making at the macro and micro levels of society. --- Business Management In this study, the intervening conditions at the micro level refer to the decisions, policies and governance at the level of rural entrepreneurial businesses. Participants stated that they adopted decisions and policies such as Crisis management and proper accountability, Condition-based planning for the business, and Develop and present appropriate strategies for business continuity to increase resilience at the business management level. This part of the results is parallel to findings Le et al. and Pappas and Brown . Le et al. stated in a study that business management plays an important role in increasing the resilience of businesses in times of crisis. Pappas and Brown stated in a study that in order to increase resilience in the context of the COVID-19 crisis, entrepreneurial decisions should be made for businesses based on the current situation and existing capabilities and capacities. In explaining this part of the findings, it should be stated that the difference in the success or failure of businesses in any situation is due to the decisions and strategies that are adopted and operated by those businesses. Therefore, proper and situation-based management in times of crisis leads to increased resilience. Therefore, businesses should always monitor their environment and be sensitive to even the smallest changes and provide them with an appropriate strategy to increase their resilience and overcome crises. --- Legal Supports In this study, intervening conditions at the macro level refer to the government's decisions and policies to increase the resilience of rural entrepreneurial businesses. Participants stated that the government has adopted appropriate policies to continue the operation of rural entrepreneurial businesses at the village level, as follows; Proper management and policy making; Providing infrastructure adapted to crisis situations ; Support policies for low-interest lending; Increase partnership and cooperation between enterprises, government and other private organizations; Develop and provide crisis preparedness and management instructions; Government support in providing health services to businesses; Monitoring the proper implementation of health protocols. "Proper management and policy making" means that the government has adopted appropriate policies in response to environmental changes to increase the resilience of rural entrepreneurial businesses, and policies have been based on environmental monitoring. Also, due to the fact that most rural areas in Kermanshah province have weak antennas, the government strengthened the antenna infrastructure in these areas. The government also provided disastrous loans to compensate companies and increase the liquidity of rural entrepreneurial businesses in order to offset some of the losses. To increase the resilience of rural entrepreneurial businesses, the government also provided contexts for increased collaboration and partnership between companies, government, and other private organizations. The government also developed guidelines for how to manage crises and adhere to health protocols, and monitored how to handle them properly. This part of the results is parallel to findings Beninger and Francis , Saad et al. and Portuguez Castro and Gómez Zermeño . Beninger and Francis states that macrolevel supportive policies are effective in increasing business resilience. Saad et al. stated that the support of relevant institutions during the crisis is effective in increasing the resilience of businesses. Portuguez Castro and Gómez Zermeño stated in their research that the level of communication with relevant institutions can improve the resilience of entrepreneurial businesses in times of crisis. Explaining this part of the findings, it should be said that the government and relevant institutions with appropriate policy-making play a key role in increasing the resilience of rural entrepreneurial businesses. The government seeks to intervene to increase the resilience of rural entrepreneurial businesses by providing financial support, such as disaster lending or the development of crisis-friendly infrastructure, such as the development of IT infrastructure in less developed villages. The relevant institutions and the government, by increasing the relationship with businesses, should be aware of their latest needs to increase resilience and try to meet their needs through the development of appropriate policies. --- Contextual Conditions Contextual conditions refer to where a phenomenon occurs and the conditions that allow the development of a strategy . In other words, contextual conditions refer to those conditions that provide the context for the occurrence of the phenomenon. In this study, contextual conditions include social factors, cultural factors and psychological factors. --- Social Factors Participants stated that contextual social participation has increased the resilience of rural entrepreneurial businesses. Participants stated that by joining indigenous and nonindigenous social networks and sharing their experiences of dealing with the crisis, they have provided the context for increasing the resilience of rural entrepreneurial businesses. Participants stated that increased participation and cooperation in adhering to health protocols has led to virus control and thus increased business resilience. Increased cooperation throughout the supply chain in rural entrepreneurial businesses has also reduced costs and increased revenue, and this cooperation across the supply chain has provided increased resilience. This part of the results is parallel to findings Beninger and Francis ; Saad et al. and Le et al. . Beninger and Francis ; Saad et al. and Le et al. in separate studies stated that social factors are effective in increasing the resilience of businesses. Explaining this part of the findings, it should be said that the COVID-19 crisis is a crisis that has affected all communities, so all communities and businesses must cooperate and participate in dealing with this crisis. Given the limited experience in dealing with health crises and the unknownness of the COVID-19 virus, all business managers should share their experiences of coping with the crisis through membership in local and non-native social networks. Increasing cooperation across the supply chain can also reduce the costs of rural entrepreneurial businesses, which increases resilience. The most important end of the COVID-19 crisis is when there is maximum cooperation and participation at the community level in compliance with health protocols. In other words, what has led to the expansion of COVID-19 is the lack of cooperation and participation of communities. Therefore, in order to increase the resilience of businesses, social factors must be strengthened. --- Cultural Factors In this study, cultural factors include entrepreneurial culture in business and elimination of incorrect and opposing cultures by controlling and preventing the spread of coronavirus. The emergence of crises causes a change in the balance and status of the business environment. On the other hand, environmental changes are the source of the emergence of entrepreneurial opportunities. Participants stated that if rural entrepreneurial businesses have a strong entrepreneurial culture, they can offer creative and relevant products or services for the environment by identifying emerging opportunities and exploiting them in a timely manner. In this way, not only can they improve their resilience, but they can also gain a competitive advantage and turn the crisis into an opportunity for their business to grow and develop. This part of the results is parallel to findings Hanson et al. . Hanson et al. in their research stated that entrepreneurial culture in businesses in critical situations is an important factor in business resilience. In explaining this part of the findings, it should be stated that crises are the source of entrepreneurial opportunities due to changes in the environment. A business that adapts faster to environmental change and more quickly identifies and exploits emerging environmental opportunities has a better competitive advantage and more resilience. Regarding the elimination of incorrect culture in the region, the participants stated that the culture of the rural community is contrary to preventive measures and health protocols. Rural community culture needs to be reformed and revised based on health protocols to control the COVID-19 crisis to provide a context for increasing the resilience of rural entrepreneurial businesses. This part of the results is parallel to findings Beninger and Francis and Saad et al. . Beninger and Francis and Saad et al. in separate studies stated that cultural factors are effective in increasing business productivity. Explaining this part of the findings, it should be said that the reason for the continuation of the COVID-19 crisis may be due to the incorrect cultures of individuals in communities. If this crisis is to be tackled, the health culture of the community must first be reformed and the cultures that endanger the health of the community must be eliminated. In this regard, proper health behaviors must be created in society. --- Psychological Factors In this study, psychological factors including increase staff motivation in relation to business continuity, increase staff resilience in relation to business continuity, strengthen the motivation of personnel with coronavirus. Staff motivation should be stimulated in various ways. For example, some participants pointed out that providing incentive leave can increase people's motivation and thus increase business resilience. Some participants said that the minds of personnel should be more resilient and prepared to deal with the COVID-19 crisis. In other words, personnel must be mentally prepared in advance to deal with this crisis in order to provide a more appropriate response when faced with it. Personnel infected with COVID-19 virus should be motivated. Participants stated that the most important capital of rural entrepreneurial businesses is human capital, which should be motivated and mentally supported under any circumstances. --- Action Strategies Action strategies are programs that can help adapt to a phenomenon, in our context , the resilience of rural entrepreneurial businesses in the face of the COVID-19 crisis. In other words, action strategies are the actions that the study community takes in response to the emerging phenomenon. In this study, action strategies developed by rural entrepreneurial businesses to achieve resilience to the COVID-19 crisis include planned resilient actions and unplanned resilient actions. --- Planned Resilient Actions Planned resilient actions refer to those short-term resilient actions that are taken during the COVID-19 crisis but are aimed at developing and growing the business in a long-term perspective. In this research planned resilient actions include development and modification of marketing strategies based on crisis conditions, human resource training, develop and provide health instructions, monitoring the proper implementation of health protocols, reform of financial management based on crisis conditions, development of crisis-adapted infrastructure and exploiting emerging environmental opportunities. This part of the results is parallel to findings Ngin et al. . Ngin et al. stated in a study that short-term responses should be provided first instead of long-term systematic resilient measures, and gradually the ability of businesses to deal with these disasters should be enhanced by strengthening crisis-related infrastructure. In other words, temporary responses should be in line with long-term systematic responses, and any plan to increase business resilience should be parallel to the growth and development of the business in a long-term perspective. --- Unplanned Resilient Actions Unplanned resilient actions refer to those measures that, although in the short run increase the resilience of rural entrepreneurial business, but in the long run lead to business bankruptcy. In this study, unplanned resilient actions include sales of some business equipment and machinery, sale of part of the company shares, temporary deactivation of the business, reducing the quantity of production and decreased production quality. In this regard, the participants stated that resilient measures should be taken in a long-term perspective that will pave the way for business growth and development. In this regard, the participants stated that resilient measures should be taken in a long-term perspective that will pave the way for business growth and development. For example, redesigning the business model and increasing the factors that adapt to the current crisis, such as taking advantage of information technology opportunities, will increase both resilience during COVID-19 and, in the long run, the growth and development of the business. --- Consequences The consequences of implementing resilient behaviors, in our situation, although they increase resilience in the short run, in the long run fall into two categories: adapting to crisis conditions and increasing resilience in the long run, and Lack of adaptation to crisis conditions and lack of continuity of business survival in the long run. What is important is that adaptive measures should be taken in a way that, while being adaptable in the short run, also provides the context for the growth and development of rural entrepreneurial business in the long run. Figure 3 shows the paradigm model of the resilience of rural entrepreneurial businesses in the face of the COVID-19 crisis. --- Selective Coding The purpose of selective coding is to identify the main phenomenon and relate it logically to the different subcategories through the paradigm model. To do this, the researcher uses a storyline to describe and justify the relationships between the categories and presents a visual model of the main research topic . There are different criteria for judging which category should be considered the main category. provides a list of criteria that can be used to determine whether a category is eligible to be selected as the main category: 1. This category should be the main category. That is, it can be related to many other categories and their characteristics, but is more suitable for the main category than other candidates. This criterion of centrality is a necessary condition for placing a category at the heart of the analysis: it indicates that this category describes a major part of the changes in the pattern of behavior. 2. The main category must be observed repeatedly in the data. With high repetition, this category is considered as a stable pattern and is consequently related to other categories by the analyst. 3. The main category is easily related to other categories. These communications are not mandatory; rather, they come into being quickly and abundantly. Because the main category is related to many other categories and is repeated frequently, it becomes more saturated in more time than the other categories. 4. The main category in a substantive study has clear implications for a more general theory. 5. Because the details of a main category are generated analytically, the theory moves forward appreciably. As mentioned earlier, the research phenomena included two subcategories . According to Strauss criteria, the most important phenomenon in this research involved the Da1 subcategory. This subcategory is referenced 26 times. As shown in Figure 3, the main phenomenon is caused by four subcategories including economic management, health factors, human resources management, and adaptation factors. These four subcategories include a total of 18 concepts. Economic management was referenced a total of 40 times by the interviewees, which included six concepts . These six concepts include receiving disaster loans , income diversity, previous financial resources, liquidity management, control and reduce costs, manage and increase sales. Among these concepts, the most important concept was "Liquidity management" with nine references . In other words, in the economic management sub-category, the "Liquidity management" factor has a greater impact on increasing the resilience of rural entrepreneurial businesses during the crisis. Health factors were referenced a total of 37 times by the interviewees, which included five concepts . These five concepts include equipping the business environment with various sanitary devices , providing disposable health tools to personnel in order to comply with protocols , equipping businesses with early diagnostic tools , adherence to health protocols, and daily staff checkup. Among these concepts, the most important concept was "Adherence to health protocols" with 10 references . In other words, in the health factors sub-category, the "Adherence to health protocols" factor has a greater impact on increasing the resilience of rural entrepreneurial businesses during the crisis. Human resources management was referenced a total of 35 times by the interviewees, which included four concepts . Among these concepts, the most important concept was "Improving the skills of personnel in observing health protocols" with 10 references . In other words, in the human resources management subcategory, the "Adherence to health protocols" factor has a greater impact on increasing the resilience of rural entrepreneurial businesses during the crisis. Adaptation factors were referenced a total of 26 times by the interviewees, which included three concepts . Among these concepts, the most important concept was "Use of crisis adaptive technologies in business model" with 11 references . In other words, in the adaptation factors sub-category, the "Use of crisis adaptive technologies in business model" factor has a greater impact on increasing the resilience of rural entrepreneurial businesses during the crisis. In other words, the factors that directly increase the resilience of rural entrepreneurial businesses include four factors: economic management, health factors, human resource management and adaptation factors. Therefore, rural entrepreneurial business managers seeking resilience should consider these four factors in their planning during a crisis. In general, these four subcategories directly affected the occurrence of the phenomenon and indirectly affected the action / interaction strategies . According to the participants, in addition to causal conditions, the contextual and intervening conditions also affect the phenomenon . Contextual conditions include three subcategories: social factors, cultural factors and psychological factors. These three subcategories include a total of eight concepts. Social factors were referenced a total of 15 times by the interviewees, which included three concepts . Among these concepts, the most important concept was "Increasing trust, participation and cooperation in observing preventive measures among personnel and customers" with six references . In other words, in the social factors sub-category, the "Increasing trust, participation and cooperation in observing preventive measures among personnel and customers" factor has a greater impact on increasing the resilience of rural entrepreneurial businesses during the crisis. cultural factors were referenced a total of 14 times by the interviewees, which included two concepts . Among these concepts, the most important concept was "Strengthening the entrepreneurial culture in business with the aim of providing products or services that are creative and adapt to new conditions and gain a competitive advantage" with eight references . In other words, in the cultural factors sub-category, the "Strengthening the entrepreneurial culture in business with the aim of providing products or services that are creative and adapt to new conditions and gain a competitive advantage" factor has a greater impact on increasing the resilience of rural entrepreneurial businesses during the crisis. Psychological factors were referenced a total of 21 times by the interviewees, which included three concepts . Among these concepts, the most important concept was "Increase staff resilience in relation to business continuity" with eight references . In other words, in the psychological factors sub-category, the "Increase staff resilience in relation to business continuity" factor has a greater impact on increasing the resilience of rural entrepreneurial businesses during the crisis. In general, contextual conditions provided the context for the phenomenon to occur in the study population. Social factors, cultural factors and psychological factors were subcategories that formed contextual conditions. According to the participants, these three sub-categories directly affected the occurrence of the phenomenon and indirectly affected the action / interaction strategies . Intervening conditions include two subcategories: Business management and Legal supports. These two subcategories include a total of 10 concepts. Business management was referenced a total of 24 times by the interviewees, which included three concepts . These three concepts include crisis management and proper accountability, conditionbased planning for the business, develop and present appropriate strategies for business continuity. Among these concepts, the most important concept was "develop and present appropriate strategies for business continuity" with nine references . In other words, in the Business management subcategory, the "develop and present appropriate strategies for business continuity" factor has a greater impact on increasing the resilience of rural entrepreneurial businesses during the crisis. Legal supports were referenced a total of 59 times by the interviewees, which included seven concepts . Among these concepts, the most important concept was "Proper management and policy making" with 12 references . In other words, in the Legal supports subcategory, the "Proper management and policy making" factor has a greater impact on increasing the resilience of rural entrepreneurial businesses during the crisis. As mentioned earlier, the two subcategories of Business management and Legal support were intervening conditions that also facilitated the occurrence of the phenomenon. In general, according to the participants, these two sub-categories directly affected the occurrence of the phenomenon and indirectly affected the action / interaction strategies . When the phenomenon occurred, the study population took action to cope with the phenomenon. In this study, according to the participants, the measures taken were classified into two subcategories, planned resilient actions and unplanned resilient actions. These two subcategories include a total of 12 concepts. Planned resilient actions were referenced a total of 54 times by the interviewees, which included seven concepts . Among these concepts, the most important concept was "Development and modification of marketing strategies based on crisis conditions" with 10 references . Unplanned resilient actions were referenced a total of 25 times by the interviewees, which included five concepts . Among these concepts, the most important concept was "Temporary deactivation of the business" with six references . According to the participants, these two submeasures had two sub-categories in consequences, which are discussed below. Finally, according to the participants, implementing action/interaction strategies can have both positive and negative consequences . The consequences of planned resilient actions , while adapting to crisis conditions, provide business growth and development in the long run. The sub-category adapting to crisis conditions and increasing resilience in the long run had five concepts that were referenced 38 times . In the meantime, the concept of "Improvement of business position than before crisis" with nine references had the most references, in other words, this was the most important positive consequence. Negative consequences included unplanned actions that in the short term may have led to adaptation to the crisis, but in the long term would have led to the bankruptcy and destruction of the business. This subcategory had two concepts that had 13 references in total . Meanwhile, the concept of "More vulnerability in the long run" with seven references had the most references, in other words, this was the most important negative consequence. In general, according to the participants, some action strategies such as planned resilient actions can help the resilience of rural entrepreneurial businesses both in the short term and in the long term. If resilient actions are planned, it will lead to business growth and development in both the long and short term. Otherwise, the actions may be resilient in the short term, but in the long run, they will cause business bankruptcy will be. Based on this discussion, the final conceptual model of the research is presented in Figure 3. --- CONCLUSIONS AND RECOMMENDATIONS The purpose of this study is to develop a paradigm model for resilience of rural entrepreneurial businesses in dealing with the COVID-19 crisis with application of grounded theory. The outbreak of COVID-19 led to disruption to businesses, especially rural entrepreneurial businesses. Therefore, rural entrepreneurial businesses need to adapt to change in order to create the desired changes to build a better future in order to survive. Therefore, it is necessary to make systematic plans to increase resilience and use planned resilience strategies. Resilience creates capabilities for businesses that can adapt to adverse conditions and continue to survive and return to development. Resilience helps the long-term survival of rural entrepreneurial businesses. As a result, these businesses can continue to operate by using the dimensions of resilience strategies in the context of the COVID-19 crisis, increasing their resistance to the Corona crisis and overcoming the crisis more developed than before. What should especially be addressed to rural entrepreneurial business managers is that adaptive measures should be taken in the long run in the direction of business development and growth, and any tolerant retaliatory action should be avoided. Grounded theory is a quite powerful tool based on which the factors affecting the phenomenon can be investigated. Therefore, based on this, appropriate recommendations can be provided to solve the problem. Although the infrastructure is currently weak in most villages, the next step is to strengthen the infrastructure, especially in the field of information and communication technology in rural areas. The next step is to upgrade the IT skills of managers and business personnel. Strengthening these infrastructures and upgrade the IT skills of managers and business personnel in rural areas gives rural entrepreneurial businesses the opportunity to redesign their business model based on information technology. The most important consequence is the adaptation of rural entrepreneurial businesses to the COVID-19 crisis and also, the development of information technology infrastructure has led to the development of marketing for the sale of products worldwide. Market development helps both economic management and reducing customer interactions . In other words, by strengthening the infrastructure and developing skills, the context for the use of information technology in rural entrepreneurial businesses is provided, and this means the realization of all four subcategories of causal conditions. Social factors, cultural factors and psychological factors should also be strengthened through cyberspace in order to provide a suitable platform for dealing with the COVID-19 crisis. Grounded theory is a quite powerful tool also because it examines the actions taken as well as their positive and negative consequences one by one. Therefore, with proper planning, negative actions and consequences can be eliminated or reviewed, and positive actions and consequences can be strengthened and expanded. Investigation of the measures taken and their consequences showed that rural entrepreneurial business managers should have a long-term vision for the continuation of their business. In this regard, strategies should be adopted that, while increasing adaptation in the short term, also lead to the growth and development of the business in the long term. Based on the findings, the following suggestions are made; • It is recommended that the Continuous data collection, analysis and presentation of information and market trends consumed in the current situation and the coming years with the aim of strengthening futurology and identifying and exploiting future opportunities to gain a competitive advantage; • Recommends that the level of creative thinking of managers be strengthened with the aim of increasing the ability to adapt to critical situations; • Recommends that managers' strategic planning skills be strengthened, especially in the field of vision drawing and mission determination; • It is recommended that the government provide loans and disaster subsidies, as well as business managers to manage cash flow and reduce unnecessary costs; • It is recommended that the relevant organizations try to increase and update the skills and knowledge of business personnel in how to deal with and adapt to health by holding training classes ; • It is recommended that business owners provide a safe environment for staff and provide free sanitary equipment to staff in order to protect human capital; • It is recommended that the IT infrastructure in the villages be strengthened so that businesses can use it to redesign their business model; • It is recommended that the field of increasing virtual communication between business owners and relevant organizations in the region and the province be maintained and strengthened to share crisis adaptation experiences; • It is recommended that resilient measures be taken systematically and in a long-term perspective in order to increase resilience during the crisis and lead to long-term business growth and development; It is also recommended that the findings of this study be made available to rural business managers through training programs .For future research, it is proposed to provide a model of adaptation behavior of rural entrepreneurial businesses in the face of the COVID-19 crisis. The most important limitation of the present study can be expressed as the lack of cooperation of some of the study population due to fear of COVID-19. --- DATA AVAILABILITY STATEMENT The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation. --- --- 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. Publisher's Note: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Pandemic the COVID-19 is a global threat to rural entrepreneurial businesses with an uncertain ending. Therefore, it is necessary to provide a paradigm model to reduce the negative effects of this crisis, increase the resilience of rural entrepreneurial businesses or even turn this threat into an opportunity for the development of rural entrepreneurial businesses in the long run. This study, using a qualitative approach, investigated the resilience of rural entrepreneurial businesses in dealing with the COVID-19 crisis in Kermanshah province using a paradigm model. Using purposeful and theoretical sampling, 26 cases were selected. The tools used for data collection were open questionnaires (unstructured), individual depth interviews, and taking notes. The results provide a relatively comprehensive model that consists of six basic parts: causal conditions (included economic management, health factors, human resources management, and adaptation factors), the phenomenon (included low resilience of rural entrepreneurial businesses in the face of the COVID-19 crisis), contextual conditions (including social factors; cultural factors and psychological factors), interventing conditions (included business management and legal supports), action strategies (included Planned resilient actions and Unplanned resilient actions), finally, the consequences (included adapting to crisis conditions and increasing resilience in the long run, and also lack of adaptation to crisis conditions and lack of continuity of business survival in the long run). In general, rural entrepreneurial businesses in the face of crisis must, through planned resilience measures, both increase their business resilience in the short term, as well as develop the business and gain a competitive advantage in the long run. Finally, based on the findings and in order to developing resilience in rural entrepreneurial businesses during the COVID-19 crisis, some recommendations were presented.

INTRODUCTION Unemployment in Morocco is a special phenomenon. It disproportionately affects the most important part of the workforce -the youngest, the most qualified, and the most expensive to train and replace. According to the High Commission for Planning , the unemployment rate in Morocco reached 11.4% in 2022. Furthermore, while the overall unemployment rate is high, the decomposition of unemployment by the age group paints a grimmer picture. In fact, the unemployment rate reached 18.4% for the individuals aged 25 to 34, and 31.7% for those between 15 and 24 years of age. Other discrepancies can be observed between the unemployment of males and females , rural unemployment and urban unemployment , and unemployment between graduates and nongraduates . These differences could result from multiple factors such as the sex or age-based discrimination, a mismatch between graduates' skills and employers' needs, or discrepancies between job opportunities in rural/urban areas. These observed trends could reflect the impact of individual characteristics on unemployment. Because of the ecological fallacy, however, any inference about the causal relationship between these characteristics and the probability of being unemployed should use an appropriate research design. While youth entrepreneurship can be a solution to youth unemployment, an inadequate business environment, financial constraints, and excessive taxation yet remain barriers to self-employment by the young in developing countries . Designing policies to reduce youth unemployment is necessary to limit its adverse effects on developing countries' human resource allocation . Doing so requires a deeper understanding of the individual characteristics related to youth unemployment . Much of the previous analysis of youth employment in Morocco used aggregate data. While this may yield valuable insights, it neglects much of the individual characteristics of the young and unemployed. Thus, this paper aims to examine the individual characteristics of young workers and their impact on the probability of being employed. While the analysis carried out in this paper is exploratory, the objective is to shed light on the vulnerabilities of young Moroccan workers to guide future research in more specific knowledge gaps. Light is particularly shed on the significance of Moroccan young workers' geographic, sociodemographic and socioeconomic, and educational characteristics and how they influence the probability of being employed. A binary logistic model is used in the paper to analyze the micro-level data sourced from the Labor Force Survey of 2019. The rest of the paper is divided into four sections. The first section discusses the theoretical and empirical literature. The second section describes the data and the empirical methodology. In the third section, the research results are presented, whereas in the final section, conclusions are drawn together with the implications of the research results. --- LITERATURE REVIEW The determinants of unemployment are a highly discussed issue in the literature. However, youth unemployment is a special dimension of the issue that requires a special lens of analysis. The reviewed studies on the psychological impact of youth unemployment by A. Furnham point out the fact that unemployment causes stress, selfesteem deterioration, and change in young people's expectations for their access to the labor market. Also, the determinants of youth unemployment are multidimensional and include demographic factors, changes in the economic environment, including the labor market, as well as the factors related to education, work experience, and training . In this section, some theoretical and empirical literature on the determinants of youth unemployment is discussed from the microeconomic perspective of rational economic agents in accordance with the scope of the empirical analysis made. --- Youth unemployment: A theoretical overview A prominent explanation of youth unemployment hinges on the rational choices of workers. Under perfect market conditions, many labor market models consider unemployment as a voluntary decision made by rational individuals refusing to work by determining the optimal combination between work and leisure . In an extension of the seminal critique of perfect rationality in G. J. Stigler , the application of search theory to the labor market indicates the existence of the informational asymmetries that increase the cost of job search and, consequently, reservation wages . Reservation wages are directly affected by a worker's level of education and qualification, i.e. the more skilled the worker, the higher his/her reservation wage. In this context, youth unemployment can be explained by economic agents' rational voluntary choices. In other words, the decision to participate in the labor market is a result of the trade-off between continuing job seeking and the available job opportunities in the market. Individuals can either accept or refuse the market's real equilibrium wage based on the opportunity cost of each option. Consequently, higher reservation wages make young, educated individuals more inclined to decide to stay unemployed. Following the same analytical framework, J. R. Harris and M. P. Todaro divide the labor market into two sectors: the formal sector, offering high wages with very limited job opportunities, and the informal sector, offering unlimited job opportunities with lower wages. Within this framework, the unemployed choose to voluntarily stay unemployed, seeking the opportunity to improve their economic situation rather than taking available low-paying jobs in the informal sector. According to B. Boudarbat , the same logic could be applied to the duality between the public and the private sectors. Accordingly, because of higher reservation wages or discrepancies between jobs in the formal/informal and public/private sectors, young people may voluntarily prefer unemployment to inadequate employment. While the first group of theoretical explanations focus on young workers' internal decision-making process, another set of theoretical works put a greater emphasis on the external factors explaining youth unemployment. According to these studies, the existence of spatial and skill disparities may play an important role in wage setting and unemployment. For instance, D. Houston argues that the presence of skills and spatial mismatches often explains imbalances in the distribution of jobs between regions, which would subsequently be the origin of unemployment. J. R. Harris and M. P. Todaro explain the high urban unemployment rate in developing countries by a large wage gap between jobs in urban versus rural areas, which encourages the migration towards urban areas or international markets. Faced with this situation, young individuals can either make a voluntary decision to remain unemployed, accept overeducation in the local market, or move towards regions with better opportunities for skilled labor. However, various constraints associated with the third option, such as the high monetary costs of job search and moving out and the inflexibility of the situation of young married women, force young skilled workers either to remain unemployed or to accept overeducation and the underutilization of their skills in local markets . According to these explanations, youth unemployment can be explained by the disproportionate effect of mobility costs on workers at the start of their careers. The relevance of human capital theory to the labor market analysis has attracted researchers' attention in recent decades . Hence, a lack of investment in human capital remains one of the most discussed determinants of youth employment. According to the proponents of human capital theory , discrepancies between education and employers' needs are the important determinants of youth unemployment. For instance, J. Mincer examined the effects of education on the income derived from employment. According to Mincer, education is considered as an investment in an inventory of "skills" or a formation of "human capital". The acquisition of a stock of knowledge and skills through formal education allows the improvement of workers' productivity that is likely to be put to use in employment. Therefore, pursuing formal education makes workers more productive and more efficient in the labor market. G. S. Becker argues that a lack of investment in one component or in more components of human capital may reduce youth employability and lead to unemployment. Becker distinguishes between the three components of human capital: general theoretical knowledge industry/company-specific training and the state of health required to mobilize both. However, these components, especially the first two, are not substitutable and failures in the acquisition and maintenance of one component or more components are the origin of unemployment. In the same vein, L. Mauro and G. Carmeci argue that young graduates' lack of professional experience is the main determinant of youth unemployment. Young graduates must acquire firm and industry-specific knowledge through on-the-job activities so that educated human capital can become productive, which reduces the productivity of the untrained. Thus, hiring the practices that place more emphasis on professional experience contributes to the unemployment of educated youth. A vicious cycle is thus created in the segments of employment where having on-the-job training requires employment for young workers looking for their first job . Therefore, according to human capital theory, youth unemployment arises because of the underinvestment of young workers in one component or in more components of human capital. In conclusion, it is unlikely that youth unemployment is the result of one single factor. Several theoretical explanations can simultaneously be correct. Ultimately, unemployment is a dynamic, complex, and multidimensional economic phenomenon. An empirical examination of the characteristics of youth unemployment is then necessary to draw relevant conclusions. --- A review of the empirical literature A significant body of empirical literature has examined the determinant of youth unemployment from a microeconomic perspective. These studies have confirmed the role played by age, the sex, geography, and education in determining labor market outcomes. The review the empirical literature presented herein starts by examining some examples of international studies before focusing the attention on the Moroccan case. H. M. Tasci and A. Tansel analyzed the determinants of the transition of Turkish workers between different states of the labor market. The first phase of the study consists of the calculation of the probabilities of transition between the labor market states. The second phase consists of the estimation of multinomial logistic models in order to investigate the determinants of the transition of men and women between different states of the labor market. The results show that women in urban areas are more likely to be unemployed. Furthermore, single individuals are more likely to be unemployed. Finally, the probability of losing the job decreases for older and more educated individuals. G. B. N. Njikam, R. Marc and L. Tchoffo also analyze the characteristics of youth unemployment in Cameroon using two econometric models. The first analyzes the gains of the labor market participation for young people. The second is based on the multinomial logistic model of labor market participation that distinguishes between young people and adults. The authors conclude that having a higher degree does not boost one's chances of finding a job. Young graduates have high reservation wages. Therefore, they try to make their degree worthwhile by seeking secured jobs. The results also confirm the fact that young women are faced with discrimination in terms of the salary and the responsibilities entrusted to them. Later, I. Njifen use the decomposition techniques of Blinder and Oaxaca to analyze the characteristics of youth unemployment in Cameroon and the gap in this unemployment according to the gender and a diploma. The findings reveal the presence of gender discrimination in hiring, as well as the explanatory role of education and the area of residence in the worsening of youth unemployment. and training system, and its relevance to the labor market requirements. They suggested that the prevalence of youth unemployment was linked to a multitude of factors, namely, demographic factors, the imbalance between labor supply and demand, the effects of economic policies, and the orientations of the development model adopted in Morocco after independence. Furthermore, J. Schonholzer explored the factors that affect access to employment among young vocational training graduates in Morocco. Using a simple logistic model, the author concluded that the gender, certain traits of the father, some types of diplomas, specific sectors of the economic activity, and graduation from public institutions significantly improve the probability of accessing a job. Finally, M. Bougroum et al used a multinomial logistic model to analyze the role of certain key characteristics in the determination of young graduates' access paths to the labor market. The authors emphasize the fact that there is no theoretical framework that holistically encapsulates the phenomenon of graduate unemployment which public decision-makers could base their policies on. More recently, J. Ait Soudane et al analyzed the role of soft skills and both human and social capital in explaining the difficulties encountered by young graduates in gaining access to employment in Morocco. Using a probit model, the authors showed that the study level and field play a determining role in explaining young graduates' employment. The results also show that relational skills are the selection filters most used by employers. In addition, F. Berahou and A. Abdouni shed light on the career paths of 1621 university graduates of the class 2009 over the first three years after graduation using the optimal matching classification algorithm to determine the different career paths of the individuals and revealed the existence of six distinct career paths. The authors then estimated a multinomial logit model to analyze the impact of the different factors influencing the probability of belonging to a typical career path. The results confirm the existence of the gender discrimination and the influence of the family characteristics such as the level of parental education. Finally, they show that the impact of the diploma type on access to employment. In particular, the results show that holders of bachelor's degrees are the segment of the sample which is the most vulnerable to unemployment. Also, Y. Idhadj and K. Louizi explored the time needed to escape unemployment and the factors likely to lengthen it, based on the data collected from 468 graduates sourced from a retrospective study of the young people who had benefited from the integration contracts between 2015 and 2019. The results of the estimates from the Kaplan-Meier survival model show that the higher the education level, the greater the risk of lengthening the duration of unemployment. Finally, they show that a significant part of the variance in the duration of the graduates' unemployment is essentially due to their job search methods. --- DATA AND METHODOLOGY To do empirical research, the literature review was used to formulate the following hypotheses about the determinants of youth unemployment in Morocco: H1: Women are more likely to be unemployed than men. H2: In older individuals, there is a lower probability of being unemployed. H3: Living in an urban area increases the probability of being unemployed. H4: Being married decreases the probability of being unemployed. H5: A higher level of education increases the probability of being unemployed. H6: A higher level of parental education reduces the probability of being unemployed. H7: Individuals living with a greater number of employed workers in their household are less likely to be unemployed. To test these hypotheses, a binary logistic regression model is used to predict the probability of being unemployed for a young person. --- Econometric methodology A binary logistic regression model is a predictive model that can be used to predict the probability of a certain binary outcome . For an overview of the logit model, see D. W. Hosmer and S. Lemeshow . The general equation of a logit model can be expressed as follows: 1 0 1 1 1 log ... 1 k k p Y X X p β β β   = = + + +   -   where p 1 is the probability of the occurrence of the event Y outcome given a set of explanatory variables X 1 to X k and their estimated coefficients β i . The estimation of the coefficients of the explanatory variables is based on their ability to predict the event so that the predictions of the outcome Y are as close as possible to the observed values. The probability p 1 of the occurrence of an event varies according to the values of the explanatory variables according to the following logistic function: 0 1 1 0 1 1 1 k k k k X X X X e P Y X e β β β ε β β β ε + + + + + + + + = = + The logistic model predicts a probability ranging between 0 and 1 for each individual. If this probability is close to 1, the occurrence of the event to be predicted is more probable, and if this probability is close to 0, the occurrence of the event is unlikely. Logistic regression aims to find a specification that improves the predictivity of the model compared to the initial basic model . How well the logit model fits in is determined by the four main statistics: the -2log likelihood statistic that illustrates the difference between the base model and the estimated model , the pseudo-R-squared statistics , representing the estimate of the variance explained by the model, and the Pseudo-R2 used as the estimate of the explained variability of the model. 2 McFadden 2 2 base model base LL LL R LL - -- = - The fitted model is then interpreted using odds ratios. An odds ratio is the odds of the occurrence of the outcome event Y = 1 after one unit change in the predictor divided by the original odds that the event happens. To obtain the odds ratio in the case of a categorical variable, the reference category must be defined, and ORs will then be defined in opposition to this reference situation. The choice of a reference modality is important for interpretation as it cannot be dissociated from the qualitative analysis of the results. If the variable X has n modalities, odds ratios will be calculated as follows: mi mr Odds Odds ratio ni Odds - = with m i being the modality i of the variable and m r being its reference modality. --- Data This study is based on a representative sample sourced from the National Employment Survey of 2019. NES is an annual survey conducted by the HCP and aims to provide information about the situation and evolution of the labor force in Morocco. Access to the survey's database is very restricted and limited to a controlled environment due to data confidentiality and other privacy concerns. The dataset made available to the authors 1 in its raw state contains 15 variables and more than 142,000 individuals. However, to obtain relevant data for the research question, the dataset was further processed using two filters. First, in order to limit the data to young people, only the individuals between 15 and 29 years of age were selected. Second, the individuals not seeking employment were excluded as we were mainly interested in the determinants of youth unemployment, not in their access to the labor market. The final dataset consists of 25,589 individuals, which represents 18% of the initial dataset. --- Model specification The outcome variable is the labor market states of young people, which is the binary variable that takes 0 if the individual is unemployed, and 1 if the individual is employed. The choice of the explanatory variables is based on intuition and the review of the empirical literature. All the variables and their modalities are summarized in Table 1. Note: It should be noted that the Moroccan higher education system is in line with the French LMD higher education system. There are some slight differences between the French system and the international system. For instance, it has been possible to obtain a bachelor's degree in Morocco in only three years since the 2003 education reform. for young female unemployment could be employers' prejudice against women for irrational reasons. It could also be systemic, historical, or cultural . In addition, the young people who live in urban areas are less likely to be unemployed compared to those living in rural areas . Finally, the marital status is also one of the factors that influence the possibility of being unemployed. The fact that a young person is married reduces his/ her chances of being unemployed as newlyweds may find themselves forced to work to support themselves and fulfill their familial obligations . Faced with this situation, they are ready to voluntarily accept the jobs that do not correspond to their qualifications. The last variable in this category is the age group the individual belongs in given the fact that older individuals are perceived by employers to have more professional experience. In general, employers prefer recruiting experienced professionals to fresh graduates. The second category of explanatory variables contains the variables representing the characteristics of the individual's education. The highest diploma obtained by the individual classified by the educational institution type are used as a proxy for this variable. The literature on the impact of higher education on employment is ambiguous. On the one hand, higher education increases workers' skill level and allows them to integrate in a bigger part of the labor market. On the other hand, the higher the worker's education, the lower the job opportunities in the market that meet their reservation wage requirements. In addition, educated workers find themselves to be overqualified in local markets dominated by the jobs that require unskilled labor. The third category represents a set of socioeconomic factors. These variables allow for the analysis of the individual's familial environment and the impact of the level of education and the financial stability of the household on the chance of being unemployed. The first variable in this group considers parents' education. Educated parents can comparatively offer better financial support for quality education and can also offer their offspring training on job search and networking opportunities. The second variable is a proxy for the financial stability of households. --- RESULTS In this section, the initial model estimation, the specification and validation tests, as well as the final model estimates are presented. --- The initial model estimation Choosing the right logit model given a multitude of the explanatory variables is based on the contribution of each variable to the accuracy of the model's predictions. The modeling process starts with the estimation of the multiple iterations of the initial "step 0" model that only accounts for the constant. The -2LL statistic is computed for each iteration and the iteration that minimizes the -2LL statistic is retained. The consequent steps are specified using the forward selection method based on the significance of the score statistic. The results of this analysis show that all the explanatory variables have a significant score statistic 2 . The cross-classification analysis of the initial model allows evaluation of the predictive accuracy of the "step 0" model. The analysis shows that the sample contains 19,590 employed and 5,999 unemployed individuals. By classifying all the individuals into those employed , the "step 0" model correctly classifies 76.6% of the individuals. This value will be used later as the baseline to assess the quality of the model. --- The final model selection and validation As is discussed before, three statistics are used to evaluate the model fit . The best model is the one with the highest value of Cox et Shell's and Nagelkerke R-squared and the lowest -2LL statistics. The value obviously rises for each step, and it can be concluded that the final model is the best fit. Examining the cross-classification tables of each estimated step allows choosing the best step. As is shown before, the "step 0" model correctly classifies 76.6% of the sampled young people. The results 3 of the cross-classification analysis show that the steps 2 to 6 steadily increase the model's accuracy so as to reach 86.5%, which is the highest accuracy. However, the step 7 model is slightly less accurate than the step 6 one , but the benefit of the added independent variable outweighs the loss of 0.1% of the model accuracy. Finally, to ensure that the model is adjusted well to the data and that it effectively predicts the group which it belongs in, the list of the observations with the standardized residual value greater than 2 is analyzed, simultaneously paying attention to those located within the three standard deviations. A total of 495 of the total of 25,589 young people are found to have the residual values of more than three standard deviations, which represents 2% of the sample. --- Results interpretation Table 3 summarizes the estimation results of the final model. It presents the coefficients associated with each variable, their standard errors, the odds ratios, and the confidence intervals for each odds ratio. The obtained results confirm all the research hypotheses set at the beginning of the paper. The analysis of the indicators of the individuals' demographic and sociodemographic characteristics reveals some interesting findings. First, being a woman increases the probability of unemployment. The probability of unemployment for a woman is 1.7 times greater than that of a man. Second, unemployment in Morocco is an urban phenomenon, that is to say individuals living in rural areas are 37.3% less likely to be unemployed. Third, young single people are more likely to be unemployed. As the results show, being married reduces the probability of being unemployed by 80%. In addition, being widowed or divorced reduces the probability of being unemployed by 71%. Finally, the chance of being unemployed decreases with the individual's year of age. For instance, young people aged 15 to 18 are 3.4 times more likely to be unemployed than those of 25 to 29 years of age. These results are supportive of discrimination theory and show the vulnerability of young single females to unemployment. The greater chance that the married will find employment can be attributed to the effects of familial responsibilities on the reduction of reservation wages. The results pertaining to the individuals' education and training account for the fact that young graduates are more likely to be unemployed than young people without diplomas. Remarkably, the impact of having a diploma on the probability of being unemployed varies according to the type of the diploma obtained. Compared to the reference category, young people with a high-school degree or a lower-degree diploma stand a 2.2 times as great a chance of being unemployed. However, the chances of individuals holding other types of diplomas are far greater. Notably, the individuals with a two-year undergraduate degree or a bachelor's degree are the most vulnerable segment of educated youth to employment . Furthermore, the holders of a master's or engineering degree are better off compared to the holders of a bachelor's degree, but they are still worse off than the young people with a high-school degree. Obtaining a master's or engineering degree significantly increases the probability of being unemployed compared to the reference category . In addition, vocational training is still ineffective in reducing unemployment as professional diploma holders are still 4.7 times more likely to be unemployed compared to the reference category, but they are still better off than the holders of the degrees requiring the same number of the years of study . Finally, the results reveal that the additional years of education necessary to obtain a PhD degree do Finally, the results show the influence the socioeconomic factors exert on unemployment. For instance, the risk of becoming unemployed decreases with an increase in the level of the education of the head of the household . Furthermore, the number of active workers in the individual's household influences his/her probability of being unemployed. The results show that the number of active workers in the household considerably reduces the probability of being unemployed as the probability of being unemployed compared to the reference category ranges from 33.3 times for the young people living in households with only one person employed to 2.1 times for those living in households with three people employed. --- CONCLUSION The characteristics of youth unemployment in Morocco are explored using the micro-level data sourced from the Labor Force Survey of 2019. Based on the literature review, a total of seven hypotheses were set about the determinant of youth unemployment in Morocco. To verify these hypotheses, a logit model was estimated to determine the impact of education and various individual and environmental characteristics on youth unemployment. The results obtained confirm all the research hypotheses set herein, in particular the sex, age, the area of residence, the marital status, the diploma of the head of the household, and the number of active workers per household, all being the determinants of youth unemployment in Morocco. Among these factors, the sex and age have the most significant influence on the probability of being unemployed. These results can be considered as the evidence of sex-and agebased discrimination and they can be interpreted using the paper by G. S. Becker who argued that certain groups were less represented in the labor market because of the recruiters' unwillingness to interact with them as a result of one's personal taste or prejudice, as D. J. Aigner and G. G. Cain argue. Age-based discrimination could also be interpreted using human capital theory, which implies that younger workers could be less recruited because they had less time to acquire the necessary professional experience. The results support the recent studies by F. Berahou and A. Abdouni and Y. Idhadj and K. Louizi , but contradict the earlier research done by B. Boudarbat , who found that being a woman did not affect unemployment, suggesting that the female unemployment rate was due to the fact that female workers prioritized their family obligations of labor market participation. This shift could be the result of the changing attitude of women towards employment during the last two decades. The worker's family background also affects his/ her access to the labor market given the fact that better educated parents can offer better professional orientation to their offspring. The number of employed workers in the household could also be correlated with its financial stability and capacity to offset costs associated with job search and mobility, as argued by I. Njifen . These results are in line with the M. Bougroum et al earlier findings. It should be noted that family support, financial or otherwise, is often a factor neglected in the reviewed literature and deserves further analysis in future studies. In addition, the results show that young graduates are more likely to be unemployed than young people without diplomas . These results are in line with the B. Boudarbat findings that the level of schooling increases the probability of unemployment, which could be explained by a mismatch between the number of the skilled workers that graduate from higher education institutions and the number of the vacancies that require skilled workers. However, in a fashion similar to J. Ait Soudane et al and F. Berahou and A. Abdouni findings, the influence of higher education on the probability of being unemployed is shown to vary according to the type of the diploma obtained. These illustrate the key differences in returns on higher education investment in terms of unemployment. This finding can be explained using human capital theory. The quantitative mismatch between the supply and demand of skilled workers may play the key role in explaining unemployment amongst youth graduates. Furthermore, J. Ait Soudane et al suggest that additional characteristics such as social capital and soft skills are needed to allow graduates to find employment. Overall, the results obtained in this paper show that youth unemployment can be explained by a multitude of factors. The theories explored in the literature review all play a role in explaining youth unemployment. These results are in line with M. Bougroum et al conclusion that there is no unique theoretical explanation for youth unemployment in Morocco. The results obtained in this study are not without limitations, either. The scope of the results is mainly limited by the nature of the micro-level data used in this study. For instance, being a cross-sectional dataset, NES does not allow for an analysis of the evolution of non-immutable characteristics over time. In addition, while the logit model provides a great insight into the impact of the worker's characteristics on his/her access to the labor market, on the one hand, it does not answer the question "why", on the other. In other words, the results show young workers' unemployment-relevant characteristics without informing about the reason for such importance. The analysis made in this paper can be a valuable step point for future research. For instance, it would be interesting to explore the reasons lying behind the observed impact of the types of diplomas on the probability of being unemployed so as to investigate why graduates from some programs are more successful in finding jobs than others. A mixedmethods approach can be valuable in investigating such issues by also gaining an insight into recruiters' perspectives. --- ENDNOTES 1 The sample used in this study was obtained as a part of an internship carried out by the first author within the Statistics Department of the HCP. Drugo, socioekonomski faktori poput porodičnog miljea mladih i broja zaposlenih lica u domaćinstvu igraju odlučujuću ulogu u objašnjenju razloga za nezaposlenost među mladima u Maroku. Treće, i na kraju, rezultati dobijeni u ovoj studiji pokazuju da postoji veća verovatnoća da će mladi svršeni studenti biti nezaposleni nego što je to slučaj sa osobama koje nemaju nikakvu diplomu. Međutim, uticaj koji vrsta diplome koju neka osoba poseduje ima na verovatnoću da će ta ista osoba biti nezaposlena varira u zavisnosti od toga o kojoj vrsti diplome je reč. Dobijeni rezultati bacaju svetlo na bitne karakteristike nezaposlenosti među mladima u Maroku i trebalo bi da posluže kao smernica za buduća istraživanja specifičnijih praznina u znanju. --- Marwa El Ključne reči: tržište rada, nezaposlenost mladih, nezaposlenost svršenih studenata, kvalifikovani rad, logistički model JEL Classification: J21, J24, J64, J71

This paper explores youth unemployment in Morocco using the Labor Force Survey of the 2019 data to estimate a logit model. The paper provides the evidence for the three categories of possible determinants of youth unemployment in Morocco. The first set of determinants are the geographic and sociodemographic characteristics such the sex, age, the marital status and the area of residence. Secondly, the socioeconomic factors such as the young people's family background and the number of workers per household play a decisive role in explaining youth unemployment in Morocco. Thirdly and finally, the results obtained in this study show that (regardless of their diplomas) young graduates are more likely to be unemployed than persons without a diploma. However, the influence a diploma type has on the probability of being unemployed varies according to the diploma type. The results obtained shed a light on the important characteristics of youth unemployment in Morocco and should serve as a guide for future research in more specific knowledge gaps.

Introduction Public awareness of mental health increases, and the male perspective is vital to explore [1]. Exploring the male perspective on mental health helps identify the effective mental health intervention, issues and barriers, and their coping mechanisms. Bilsker et al. [2] noted that men's mental health is "hidden in plain sight" because they were less likely to express their feelings and emotions for unclear reasons. Baker [3] added that men are reluctant to accept their mental health issues and have their way of expressing their feelings. Conducting this study is of great help in implementing an approach to mental health policy and practice to promote positive mental health and avoid psychological problems. Mental health is the complete welfare of individuals to cope with stressful situations to function effectively and contribute productively to their community and themselves [4]. Mental health or behavior is affected by people's attitudes, beliefs, and practices [5]. Furthermore, cultural practices influence the perceptions and attitudes of individuals [6]. However, people often associate mental health with mental illnesses, which creates mental health stigma that hinders individuals from freely discussing their mental health, especially among men, due to negative notions, discrimination, and typecasts [7]. This mental health stigma results in individuals being silent about their mental health due to fear of being labeled as people with mental illness or treated differently in society [8], especially for men [6]. This notion shows that people use façade to portray emotions and reactions that are not the same as their real feeling on the inside. According to Carl Jung [9], every person has a persona which is the façade that every person shows to the world. This façade of the person is their way to conceal their true feelings and emotions. Thus, men use mental health façade to protect themselves from prejudice and judgment [8]. Also, mental health façade is used to prevent emotional exhaustion, especially in an environment or situation where a person feels pressured [10]. Furthermore, psychological expression is uncommon for men [11], and this is associated with the adherence of men to their masculine role, which prevents them from seeking mental health and expressing their feelings [2]. Men tend to control and strive to suppress their feelings and emotions, negatively affecting their mental health [12]. Wong et al. [11] revealed that masculine norms reduce the mental health-seeking behavior of men that negatively affects their mental health. Breland et al. [13] further showed that men are doubtful to share their emotions and feelings even if they show manifestations of mental problems. The social contract of males is one of the reasons why identifying their mental health status is difficult [2]. This idea accounts for the high prevalence of male mental health issues, with nearly 8,000,000 committing suicides, wherein males have a higher prevalence than females [14]. Saudi Arabia remains highly patriarchal in nature. Despite the many advances and social changes that have been witnessed in Saudi Arabia in recent years, traces of hegemonic masculinity ideology still exist in society [15]. Hegemonic masculinity "refers to a societal pattern in which stereotypically male traits are idealized as the masculine cultural ideal, explaining how and why men maintain dominant social roles over women and other groups considered to be feminine" [16]. In Saudi society, males' dominance is demonstrated by having the responsibility to be their family's guardian and ensuring that their family's honor is free from scandals. They assume the huge responsibility of ensuring the safety and security of their family starting from a young age and throughout their life [15]. Because of this status, society places high expectations on male Saudis to create and maintain a positive image in every decision and action that they are involved in [17]. Moreover, the country's social rules and religion do not permit the mixing of genders. This sex segregation extends to all areas of society, including in nursing education [18]. Nursing education in the country is one of the few remaining in the world that is segregated by sex. Nursing students belonging to the opposite sex do not have the opportunity to learn and socialize with each other. Those who oppose sex segregation in education argue that this system has negative impacts on the psychosocial development of the students, which could also affect their mental health [19]. Also, previous studies have shown gender differences in nursing students' mental health and well-being in Saudi Arabia [20][21][22]. These factors may have implications on the mental health of Saudi male nursing students. However, information about the incidence of mental illness is limited in Saudi Arabia [23], and previous studies have limited samples . Al-sughar and Ferwana [24] reported that out of 354 participants, 41% of male adolescents experience mental illness. With the reported cases of mental health problems for men, no study has been conducted to understand the perception of male Saudi nursing students about their mental health. A low magnitude of community awareness is also observed on the mental health issues of Saudi males [1]. Moreover, the mental health of adolescents has not been given much attention in Arab countries, such as Saudi Arabia [25]. Thus, identifying the male perspective on mental health is important to understand the perceived concepts, meanings, and experiences of male Saudi nursing students regarding mental health. --- Aim of the study This Husserl phenomenological qualitative study aimed to explore the experiences of male Saudi nursing students of mental health. --- Methods --- Study design The researcher undertook Husserl's qualitative phenomenological research to explore the experiences of male Saudi nursing students of mental health. Bracketing, reflexivity, analyzing, interpreting, and intuiting Husserl's descriptive phenomenology component was observed throughout the study [26]. --- Researcher characteristics Five of the researchers are instructors of the University in Saudi Arabia, and one is a level six nursing student. As an instructor, we teach nursing students in the classroom and supervise them in the clinical setting. They have observed that nursing students have different perspectives, behaviors, and attitudes which influence their mental health. This observation prompted them to conduct this study. Four of the researchers are male Saudi nationals, and two are Filipino. To prevent bias, the two Filipino researchers conducted interviews with the students. The nursing student researcher was responsible for recruiting and getting the written consent of those students who were interviewed. --- Sample strategy and sampling The referral sampling technique was used to select the participants. First, the researchers posted posters regarding the study on the posting areas on the campus. The posters contain the information about the study and invitation for participation. An electronic poster containing the same information described above was forwarded to potential participants to maximize the recruitment. The contact information of the primary investigator was also included in the poster for any questions about the study and voluntary enrollment of participants. As written in the posters, students who decided to participate are asked to contact the primary investigator. Second, the researchers asked those who first participated for any referrals to increase the enrollment in the study. The researchers approached the referred potential participants, and similar information about the study was provided. They were then invited to participate in the study. The 11 male Saudi nursing students participated in the study. The saturation point of the study was achieved on the fifth participant, but the researchers added another participant to ensure that the saturation point was achieved. All the sir nursing students participated in the study voluntarily and signed informed consent to signify their understanding of the study and their voluntary participation. The participants were selected on the basis of these criteria; The participant should be a male Saudi national student nurse, and The participant must be willing to participate and commit himself to a series of interview sessions. The exclusion criteria are female nursing students, non-Saudi national nursing students, and those unwilling to contribute to the research. The researchers used the codes "Nursing Student 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, and 11" to protect the identity of the participants. Nursing Student 1, 7, 10 is a 20-yearold level 3 student. Nursing Student 2, 3, 4, and 5 are 20-year-old level 6 nursing students. Nursing Student 6 is a 23-year-old level 6 student. Nursing Student 8 is a 22-year-old level 4 student. Nursing Students 9 and 11 are 24-year-old level 6 students. --- Data collection An unstructured interview questionnaire was used to conduct the data with a general question of "What are your perceptions about mental health?" Succeeding queries were based on the responses of the participants. The interview lasted from 40 to 60 min, with a followup session to validate the identified themes. Due to physical distancing and restrictions, the interviews were conducted through Zoom. The interview time and date were based on the preferences or availability of the participants. Before the commencement of the interview, consent to participate and consent for recording the interviews were taken. The recorded interviews were coded, transcribed, and analyzed. --- Data analysis The seven steps of the descriptive Colaizzi process were followed to investigate and examine the obtained data. These seven processes are as follows: gather the participants' perspectives by understanding and reading the data several times, comprehensively understand the meanings of the participant experiences and identify relevant statements associated with the study, formulate meaning associated with the study from the extracted important sentences. The researchers reflexively "bracketed" their presumptions to confirm that the meanings are relevant and support participants' experiences conceptualize or cluster identified themes supported by participants' experiences, develop and classify the outline of the concepts and themes in Step 4, formulate the fundamental structure of the experiences of the participants or the phenomenon examined by abridging themes and ideas, and verify or validate the elemental structures of all the participants to make sure that their experiences are well captured. The researchers reanalyzed and modified the previous steps to support the feedback of the participants [26]. --- Rigor/trustworthiness The credibility, dependability, confirmability, transferability, and reflexivity criteria were observed to ensure the rigor or trustworthiness of the study. The researcher's strategies to guarantee credibility are persistent observation, triangulation, prolonged engagement, and self-evaluation. To achieve a thick and rich description or set of information for confirmability, the researcher described the data on the basis of the context of the participants on their behaviors and experiences, not simply describing their behaviors and experiences. This approach makes the data meaningful for a reader or outsider. The researcher also described the research process starting from the conceptualization up to the reporting of the findings. The recorded data from the Zoom interviews were extracted and kept in a file on the researcher's computer with a password. The records of the study were kept during the research process. Two experts evaluated the data collected to confirm the accuracy of the analysis, themes, and coding. Coding systems were utilized in the analysis process to enhance dependability. To ensure the reflexivity, the researcher's conceptual lens, and the overt and covert assumptions, biases and values were acknowledged. --- Ethical considerations This study was approved by the Shaqra University Research Ethics Committee . The study was conducted after securing written informed consent from all of the participants. The researchers assured all participants that all data and information were strictly confidential, and neither codes nor words were used in the study that can associate the results with the participants. Also, all methods were carried out in accordance with relevant guidelines and regulations. --- Results The individual wears a different mask in various events, groups, or society [9]. Thus, this study talks about the mental health façade of male Saudi nursing students. Every person wears a mask as they deal with every individual depending on the situation. The finding shows that every participant wears a mask as they deal with events, situations, or individuals in their environment. This mask of the participant is described as their mental health façade to show or hide their values, identity, and feelings. Mental health façade describes the factors or reasons behind the expression of emotions of male Saudi nursing student participants who described two main themes of their mental health façade: the unadulterated and orchestrated smiles of their psychological well-being. --- Unadulterated smile Unadulterated smile is the first theme that describes the façade of male Saudi nursing students. An unadulterated smile describes or shows the authentic emotions or behaviors in their unprejudiced environment. These participants identified that the expression of emotion is achieved because of optimism in the family and mutual guarantee. The participants mentioned that they easily express their feelings and emotions because their family is optimistic. Optimism in the family helps in the development of their positive mental health. In addition, the optimistic attitude of the family about mental health helps them overcome stressful situations and promote comfort. "My family understands me and is willing to listen when I have a problem. When I share my problem with them, it helps me get along with myself, my sense of happiness, and my ability to face the demands of life and have safety and security." Nursing Student 1. In maintaining mental health, male nursing students mentioned the importance of mutual guarantee. Mutual guarantee is the reciprocating emphatic and sympathetic attitudes of persons that help them overcome stressful situations. In dealing with stressful situations, the participants recognize the importance of mutual understanding of feelings and emotions with a person they trust and with whom they share a quality relationship. Trust is built in mutual guarantee, which is the basic foundation for showing real feelings and emotions. In this manner, they can help and support each other to deal with stressful situations. "Yes, relating to others is important to help me handle my stress and make healthy choices. Understanding others develops mutuality wherein problem sharing becomes good and beneficial." Nursing Student 4. "I restore my self-confidence first, and then communicate with those I trust, and then act on the advice." Nursing Student 10. On the other hand, as the participants show their real emotions, they also hide as protection from the environment. This face is described as an orchestrated smile. --- Orchestrated smile The second theme that described the mental health faced of the male Saudi nursing students is the orchestrated smile. Orchestrated smile is the façade of participants when they are suppressing or faking their emotions. This theme shows that the behaviors and emotions of the participants are not in sync with their real feelings. The participants fake or suppress their emotions or feelings to protect their identity and sense of belongingness. The participants orchestrate their smiles to manage their unwanted feelings, thoughts, and emotions. Such emotions help them preserve their ego and avoid prejudices from other individuals and society. "Sometimes, I am not interested in sharing my problem because solutions do not come from other people, and I am afraid that they will only judge me." Nursing Student 5. Avoidance of diverting burden is one of the reasons why the participants avoid sharing unwanted thoughts, feelings, and emotions. They believe that everyone has their problem, and sharing concerns or unloading unwanted emotions can only cause a burden to another person. Furthermore, the participants perceived that being mum about their unwanted feelings, thoughts, and emotions helped avoid prejudice and judgment. Moreover, they orchestrate their smile to prevent diverting burden to others, maintain their social function, and protect themselves and their reputation. "Sometimes, I do not like to disclose my worries because I feel that another person will carry my problem. My problem is my problem, and they have their problem." Nursing Student 2. Also, the participant hides their feeling and emotions due to their social responsibility. In Saudi Arabia, "men hold the most authority and responsibility to ensure the safety and security of their family" [28]. As the participants mentioned, they should not show their weakness because of the expectations of society. Showing their weaknesses makes them feel ashamed and useless since they should be the source of family strength. Thus, the social responsibility of male Saudi nursing student participants is one of the reasons why they need to suppress their emotions. "I am ashamed of sharing my problem with my family because I do not want to be seen as a weak person." Nursing Student 1. "Men are known to be tough, and we should act as the head of the family and protect our family. As young as we are, we are taught to drive because we should be the ones to drive our mother and sister if our father has worked." Nursing Student 4. It was also noted that male Saudi nurses need to protect their family reputations. In Saudi Arabia, "the preservation of honor and community opinion is often at the forefront of Saudi's minds" [28]. This notion can be associated with the study's findings that male Saudi nursing students should not show weakness by being emotionally unstable or drained. The participant mentioned that they should not manifest that they have emotional issues and concerns since they will be ostracized or judged in the community. Being considered by other people due to mental health issues is unacceptable and a shame to their families. Thus, they suppress their emotions as a way for them to protect their reputation. "I do not share my problem because I am afraid to be judged, and I am worried my masculinity and status will decrease. I am also afraid of what society says, which is a huge problem. If the society thinks I am crazy or delusional, then they will judge me and try to avoid me." Nursing Student 7. Furthermore, the participants mentioned that they do not show their real emotions to preserve their image in society, identity, and dignity. This façade of the participants accords with the cultural expectation from Saudi males that they are tough and in control of themselves. "I do not share my problem because another person will use it against me." Nursing Student 2. "My problem is my problem. I do not have to complain about it, and we do not care about other people's problems. So, I do not share my problem for my protection." Nursing Student 9. --- Discussion The mental health façade of male Saudi nursing student participants is a reflection of their emotions, feelings, and thoughts. Jung [27] posited that the persons' attitude or behavior depends on them and their wish to project. As noted, the mental health of the nursing student could be associated with gender norms, culture, individual perspective, and social collectivities. While most participants didn't talk about hegemonic masculinity, male Saudi nursing students exhibited hegemonic masculinity ideals concerning their mental health. In the context of patriarchy, the participant mentioned that Arabic cultural values, such as men as the head of the family, influenced their mental health. The male guardianship system may have an impact on this perception. The male guardianship system in Saudi Arabia is the authority of a male guardian to make a range of critical decisions for females [29]. Thus, being tough is vital because they are the source of strength for their family and ensure their family's safety and security [28]. In addition, privacy is a significant concern in Saudi Arabia [30]. Showing or verbalizing emotions among males are signs of weakness in Saudi society. Therefore, the participants must fake their emotions to protect their reputation and self-control. Although this notion is unlikable, suppressing emotions does not evoke others' unwanted thoughts, feelings, and evaluations [31]. Furthermore, the gender norms in society may serve as challenges to the mental health of the participants. Due to the expected roles of Saudi males in society and their families, they choose to suppress their emotions and exhibit strength despite their internal struggles, which become a barrier for help-seeking behaviors and negatively affect their mental health. Gough and Novikova [32] reported on this phenomenon where the concept of masculinity, as a social construct, often constrains men of their tendency and capacity for emotional communication, help-seeking for mental health, and mental health service engagement. The same study reported that men inclined to traditional masculinity norms are unwilling to disclose their problems to others and ask for help regarding their mental health [32]. Although changing this perception about mental health may be highly challenging due to its deep roots in the society's cultural, societal, and religious norms and beliefs, the recent societal changes and development that have been implemented in the country are promising. They are seen to be beneficial in advancing and advocating the mental health of Saudi people, especially among younger men. McCrae et al. [33] discussed this observation in a previous review of how the media portray mental health problems in Saudi Arabia. They emphasized the progressive intention of the country to depict mental health problems positively and accurately in society. The context of hegemonic masculinity could be the possible reason for the participants altering their emotions when dealing with others through suppression or faking of feelings. They suppress their feelings to prevent diverting their burden to others. They believe that sharing their feelings with another person can help them unload their responsibility, but at the same time, it causes a burden to that person. The participants mentioned that unloading a burden on another person is an inappropriate act. Griffiths et al. [34] conducted a qualitative study examining individuals' perceptions of the advantages and disadvantages of help-seeking from significant others. They reported that help-seeking is viewed to have a negative effect on significant others and have an adverse impact on their existing relationships. The participants stressed that they are concerned that seeking help for depression may cause "stress, anxiety, concern, hurt, confusion, and frustration" to their significant others. Similar to the present study's findings, the participants also expressed their concern that they "burden" their family or friends when they share their problems with them. Griffiths et al. [34] cited another concern: sharing problems with significant others may result in problematic relationships and is described as "placing burden and strain" on such relationships. Nonetheless, the help-seeking and sharing of emotional problems should be encouraged as they are essential methods to cope with mental health problems among young adults [35]. Furthermore, the participants also acknowledged the role of family relationships, which may influence their masculinity. Connell and Messerschmidt [36] mentioned that the pattern of hegemonic masculinity is rooted in families. Saudi male nursing students express the importance of the optimism of their family on mental health that builds their positive attitude toward expressing their behaviors, thoughts, and feelings. Coservano et al. [37] argued that optimism influences positive mental health because people adopt positive behaviors, cognitive responses, problem-solving skills, and understand negative thoughts, feelings, and emotions. Optimism also facilitates the expression of feelings, emotions, and ideas that promote positive mental health. In this positive sense, optimism can also help in the mutual understanding of people. As mentioned by the participants, mutual guarantee influences their ability to express their emotions. Mutual guarantee is the act of understanding people's feelings, emotions, and thoughts based on their connectedness and closeness [38]. The present study's findings reveal that emotions are based on the interaction and developed relationship of a person with another person that makes them understand each other, and their relationship becomes beneficial. This kind of relationship encompasses the promotion of mental health. Weich et al. [39] stated that functional support is significant in mental health promotion. Moreover, this finding is supportive of "social baseline theory," which argues "load sharing" as a characteristic of close relationships [40]. That is, emotional burdens are shared across relationship partners. This theory further indicates that human beings have the natural tendency to adapt to be close to other human beings and that people's functionality decreases when they are apart from their trusted individuals [40]. In applying this theory to the present findings, the participants tend to share their burdens with the people they have quality relationships with; according to the theory, having bad relationships or being distant from significant others results in poor mental health outcomes [40]. This factor was illustrated in the findings of a previous study conducted by Lougheed et al. [41], who suggested that the capacity of individuals to conquer challenging situations is better when they are closer with persons they trust. --- Limitations of the study The limitations of the study include the focused group of participants. The participants are limited to male nursing students, and other male Saudi non-nursing students might have different stories and social constructs, which may indicate that data saturation is improperly achieved. Also, our study was limited to students who can speak English and are interested in sharing their mental health experiences, leading to possible selection bias toward those who can't speak English properly. Thus, this study recommends conducting the study in more heterogeneous populations to explore the experiences of mental health. --- Conclusions The findings document that the mental health façade of male Saudi nursing students is associated with the expectation of family optimism, mutual guarantee, the expectation of society, and self-protection. Participants' expression of emotions, feelings, and thoughts is based on another person's behavior, family, and society orientation or awareness on mental health. Moreover, culture and practice influence the mental health façade of the participants. The findings suggest the need to implement advocacy and community awareness on mental health. The development of community programs, such as seminars in communities about mental health, should be conducted because awareness takes an important role in maintaining the mental health of every individual. Institutions such as schools and universities also conduct malefriendly mental health programs, focusing on promoting mental health for students. The study's findings may be used to develop these mental health programs for targeting the gender-specific mental health needs of nursing students to ensure that they can enjoy an optimum level of mental health. Moreover, universities should create opportunities to involve male nursing students in discussions about gender norms and how they impact their mental health and well-being to improve their awareness and potentially change their viewpoints. Advocating that seeking help regardless of students' gender is okay may also assist in improving the emotional communication of male students, thereby improving their help-seeking behaviors. In addition, nursing faculty members should be educated and trained on the gender-specific way of expressing or presenting their mental health problems to recognize and extend help for male students who are reluctant to express their mental health problems because of their fears. Finally, the findings can help the government enhance facilities, policies, and practices, all of which can aid in promoting and awareness of mental health to every citizen. --- --- --- --- --- --- Competing interests The authors declare that they have no competing interest. ---

Background: Every person has a persona (or mask) which is the façade that every person shows to the world. Thus, males use façade to reveal or conceal their true feelings and emotions. Also, the male uses mental health façade to protect themselves from prejudice and judgment. Thus, the study aimed to explore the experiences of male Saudi nursing students of mental health. Method: Husserl's descriptive phenomenology was used as a guiding lens to explore. Eleven participants were involved in the study by using the referral sampling technique. An unstructured interview was performed to gather information from the participants. The seven steps of the descriptive Colaizzi process were followed to investigate and examine the obtained data. The credibility, dependability, confirmability, transferability, and reflexivity criteria were observed to ensure the rigor of the study. Results: The findings have two major themes. The first theme is the unadulterated smile that describes optimism in the family and mutual guarantee. The second theme is the orchestrated smile, which describes avoiding diverting burdens, social responsibility, protection of self, and reputation. Conclusions: The findings document that the mental health façade of male Saudi nursing students is associated with the expectation of family optimism, mutual guarantee, the expectation of society, and self-protection.

Introduction Despite global efforts to fight HIV stigma and increase access to care and treatment, HIV stigma remains a major obstacle to ending the AIDS epidemic by 2030 [1]. HIV stigma limits access to healthcare, economic, and social resources that are needed to live a healthy life with HIV [1][2][3]. Stigma refers to a social process that can lead to the exclusion of individuals or groups based on real or perceived characteristics [4]. Globally, HIV stigma remains a significant barrier to HIV testing [5][6][7], linkage to care and treatment, and adherence to antiretroviral therapy [1,[8][9][10]. Experiences of HIV stigma are also linked to non-disclosure of HIV status [11,12], condomless sex [13], and unsuppressed viral load [14][15][16], which can result in transmission of HIV to sexual partners [17]. Stigma occurs at multiple levels, from internalized stigma to stigma experienced in interpersonal relationships, at the couple level, and through institutions and social structures. HIV stigma has been grouped into four main domains in which people internalize real or perceived stigma onto themselves , experience overt acts of discrimination , anticipate or fear enacted stigma , and perceive how others view and treat people living with HIV [1]. Research suggests that when a partner first tests positive, there is more intra-dyadic stigma and concerns about rejection, discrimination, abandonment, and violence [18][19][20][21], but this may decline over time, with the primary source of HIV stigma coming from outside the couple relationship [5,[22][23][24][25]. According to couple interdependence theory [26], both partners' beliefs, experiences, and behaviors impact the other partner's beliefs, experiences, and behaviors regardless of which partner lives with HIV. This may be particularly relevant in settings such as Malawi where married individuals are viewed as a single marital body with shared characteristics [27,28]. In South Africa, a clinical trial of an HIV-stigma intervention with pregnant women living with HIV and their partners found that women's reports of HIV stigma in the control arm were correlated with male partners' stigma scores among men living with HIV, suggesting that stigma can act interdependently in couples and is not an isolated issue for only one partner [29]. Therefore, interventions are needed that go beyond the individual level to focus on interpersonal and other levels where stigma occurs and can negatively impact health. HIV-related social support from primary partners may reduce or buffer the harms of anticipated stigma. Studies have highlighted the positive role of partner support on health-enhancing behaviors, such as HIV testing, HIV status disclosure, and ART adherence [27,[30][31][32][33]. However, little research has been conducted on how anticipated stigma impacts couple relationships, and how relationship dynamics in turn affect stigma. Previous research has focused on the negative effects of HIV stigma on non-disclosure to partners [34][35][36][37] rather than examining how stigma impacts couples who have already disclosed and should be engaged in HIV care and treatment. Few, if any studies, in sub-Saharan Africa have examined whether relationship dynamics can buffer the negative impacts of stigma on ART adherence. While supportive relationships may help offset negative HIV stigma effects, it is also possible that HIV stigma could worsen relationship dynamics and damage the couple relationship. Qualitative research found that HIV stigma could damage couple communication regarding HIV and negatively impact sexuality and sexual satisfaction [38,39]. Stigma from a partner could also increase self-stigmatization and lead to the experience of more HIV stigma [18]. Couple characteristics such as relationship duration and couple HIV serostatus could moderate the association between experiences of HIV stigma and relationship functioning and partner support [40]: if both partners are living with HIV and report experiencing stigma, they may offer greater mutual support and be united by negative experiences as compared to couples in which only one partner is living with HIV. Based on this research [18,[38][39][40], we hypothesize that the strength and direction of the association between stigma and relationship dynamics may vary by couple serostatus. Few studies have considered the role of relationship dynamics and social support in studies of HIV stigma in couples. A review paper found that only one quantitative study that examined HIV stigma with couple-level outcomes [41]. Among Chinese sero-discordant couples, individuals with a more couple-centric versus individualcentric orientation reported fewer depressive symptoms, but the protective effect of being in a couple diminished when HIV stigma levels were high [42]. We are not aware of studies that have tested for associations between HIV stigma and relationship dynamics in couples in which one or both partners are living with HIV. To fill this research gap, we investigated the association between HIV stigma, relationships dynamics, and ART adherence among heterosexual sero-concordant and discordant couples in Malawi. Specifically, we tested for associations between anticipated stigma and relationship dynamics, including social support and couple communication, and whether these associations differed by couple serostatus. Next, we tested for associations between anticipated stigma and ART adherence and whether these associations differed by the same relationship dynamics . This allowed us to test the hypothesis that supportive couple relationships may offset the negative impacts of anticipated stigma on engagement in HIV care. If shown to be associated, this study would provide critical evidence to support interventions that strengthen partner support for couples affected by HIV and build sources of resiliency within couples to fight stigma, improve treatment outcomes, and end AIDS by 2030 [1]. --- Methods --- Study context This study took place in the Zomba district of Southern Malawi, which has an HIV prevalence of approximately 15% [43]. With a well-established ART program, Malawi has over 850,000 individuals on ART [44]. Since the start of a universal test-and-treat approach in 2016 which offers free HIV care and treatment, almost 90% of people living with HIV in Malawi have started ART [45]. Most adults in Malawi are married or in cohabitating unions [43]. --- Study procedures Data are from the Umodzi M'Banja study, a mixed-methods dyadic investigation of PLHIV and their primary partners in Zomba, Malawi [46][47][48]. We conducted a cross-sectional survey with 211 couples from August to November 2017. Couples were eligible to participate if they were: age 18 + ; in non-polygamous married or cohabitating unions for at least six months; and had at least one partner on ART for two months or more, who had disclosed their HIV status to their primary partner. Participants were recruited at two high-volume HIV clinics, a private clinic at a rural community hospital and an urban clinic at a large district hospital acting as a regional referral center. Research staff announced the study in waiting rooms during daily health talks and interested index patients could approach the staff for more information. If the index patient was eligible, they were given an information card to share with their primary partner who could contact study staff for screening. Partner eligibility was assessed over the phone and confirmed in-person at an interview appointment with the couple. Partners were consented separately in private locations at the HIV clinics and were both provided with a small incentive for their time. Gendermatched research assistants administered surveys using tablet devices that housed a secure, web-based data collection platform. Surveys were translated into the local language, back-translated into English by an independent person, and then administered in Chichewa. Partners were interviewed separately, but simultaneously, in private spaces at the HIV clinics, and were asked questions on relationship dynamics, partner support, and if they were living with HIV, and about anticipated stigma and ART adherence. --- Measures We examined two dependent variables and several independent variables of interest. In the first set of models, anticipated HIV stigma was treated as a dependent variable and we examined associations with various relationship dynamics , with partner support , and with couple communication patterns . In a second set of models, self-reported ART adherence was the dependent variable and the independent variables of interest included anticipated HIV stigma with two potential moderators, general partner social support , and sexual satisfaction . All study measures are summarized in Table 1. --- Anticipated HIV stigma Anticipated HIV stigma was measured with the anticipated HIV stigma scale [49]. This scale captures future expectations of stereotyping, discrimination, and/or prejudice from family members and providers because of one's HIV status. Only participants who were living with HIV were asked these questions. Therefore, if both members of the couple were living with HIV, they both reported on their own anticipation of stigma. However, if the couple was sero-discordant, then only the PLHIV reported on anticipated stigma. This scale has been previously validated in sub-Saharan Africa with PLHIV [50][51][52]. Response options ranged from 1 to 5 . A mean of stigma items was calculated with higher scores across a range from 1 to 5 indicating higher anticipated stigma. In all analyses, the scale was used as a continuous variable. --- Relationship dynamics We assessed relationship dynamics by measuring sexual satisfaction, relationship intimacy, trust, equality, unity/ "we-ness", and commitment . Row means or row totals were created for each scale based on the original scoring procedures . Couple-level variables were created such that each represented the couple-level mean score from both partners. Sexual satisfaction was measured using the General Couple Sexual Satisfaction Scale [53], which was validated in Malawi. Relationship intimacy was measured using a subscale from the Triangular Scale of Love [54]. We used the shortened version of this scale validated in Malawi [55]. Trust was measured with the Dyadic Trust Scale [56] which has been validated in various sub-Saharan African countries [57][58][59]. Relationship equality was measured with the intimacy subscale of the Relationship Values Scale [60] which was previously validated in another Malawian study [53]. Unity or "we-ness" was measured with a single item using the inclusion-of-other-in-self diagram [61]. The diagram asks respondents to pick from a set of over-lapping circles that best describes their relationship with their partner. Response options included seven sets of circles that ranged from 1 to 7 with higher scores indicating greater relationship unity. This scale was previously validated in Malawi [53]. Relationship commitment was measured with a subscale from the Triangular Scale of Love [54], which was previously validated in Malawi [55]. --- Partner support Partner support was measured in two ways . We assessed general partner support with three subscales from the Social Provisions Scale representing guidance, attachment, and reliable assistance [62]. These items were selected because they capture aspects of emotional, instrumental, and informational support that were salient in previous studies in Malawi and South Africa [27,33]. We also developed a measure of HIV treatment-specific partner support that was adapted from the SPS scale [63] and validated in Malawi [53]. Both partner support variables were treated as continuous variables in all models. --- Couple communication patterns Couple communication patterns were measured with an adapted version of the Communications Pattern Questionnaire [64]. This scale has been previously validated in Malawi [55]. Variables for withdrawal, demanding, and avoidant communication styles were all treated as continuous variables in models. --- Self-reported adherence to ART To account for low educational attainment, adherence was assessed using the "bean method" for low literacy populations [46] based on the 30-day Visual Analog Scale [65]. The interviewer gave the participant two bowls, one with beans and one empty, and explained that the beans represent the ART that they take each month. Participants were instructed to select the number of beans corresponding to the pills they did not take in the last month and put them in the second bowl. A binary variable was created based on treatment regimen and the number of beans selected. We considered taking 90% or more of pills to be adherent and less than 90% to be non-adherent [65]. The 90% cutoff was chosen because while ≥ 95% adherence is considered perfect or near perfect adherence, prior research has shown that with newer ART regimens, HIV viral suppression for persons with 90-94% adherence did not differ from those with ≥ 95% adherence [66,67]. The 90% adherence cutoff is also a validated cutoff used in other studies in SSA [68] --- Covariates Based on the previous literature on couples and HIV [46,69], multivariable models controlled for age , gender, years of education , couple HIV status , relationship duration , and household wealth score , which is a proxy for socio-economic status [70]. --- Data analysis One-way frequency tables and measures of central tendency were generated to characterize the sample. Linear mixed models [71] tested for associations between relationship dynamics and anticipated stigma and whether this association varied by couple serostatus, after controlling for socio-demographics and relationship characteristics , in accordance with literature on HIV risk behaviors and relationship dynamics [72]. Models also adjusted for clustering at the couple-level by including a random intercept for the couple to control for non-independence of responses from individuals within the same couple who both reported on the outcome of anticipated stigma. In addition, models included the cluster-robust standard error option [73][74][75] to protect inferences against normality and homoskedasticity assumption violations. In addition, using generalized estimating equation models clustering at the couple-level with the robust standard error option [73][74][75], a binary distribution, and a logit link function to yield odds ratios [76], we tested for associations between anticipated stigma and ART adherence after controlling for socio-demographics and relationship duration. Using ad hoc analyses, we also examined whether this association was moderated by relationship dynamics and partner support by including interaction terms in the models. To evaluate whether associations differed by couple sero-status and gender, we included respective interaction terms in the models. Initial models were specified to contain main effects. Models were then extended by adding relevant interaction terms one by one to test the moderation hypotheses described previously. If interactions were significant, results from the models with interaction terms included are reported. We considered an alpha of p < 0.05 to be statistically significant. Overall, missing data were negligible . All analyses were performed using Stata 16 . --- Ethical approval The study was approved by the National Health Science Research Committee in Malawi and the Human Research Protection Program at the University of California, San Francisco . Informed consent was obtained for all individual participants included in the study. All procedures followed were in accordance with the Helsinki Declaration of 1975, as revised in 2000. --- Results --- Sample characteristics Of 422 participants, the mean age was 40.5 years and the majority had a primary education or less . All couples were married/cohabitating and had been together on average for 12.5 years. Two-thirds of couples were sero-concordant positive . Of participants who were living with HIV , the majority were on ART and 95.6% reported 90-100% ART adherence in the past 30 days. The mean anticipated stigma score was 1.6 . We tested whether anticipated stigma scores were higher for sero-discordant versus sero-concordant couples. We found higher levels for sero-discordant couples, but the difference was not statistically significant . In addition, we tested to see if stigma scores within couples were correlated for sero-concordant couples. However, we only found a small correlation between partners' stigma scores . --- Associations between relationship factors and anticipated stigma In multivariable models, sexual satisfaction was significantly associated with anticipated stigma such that HIVpositive individuals in a relationship with higher sexual satisfaction reported lower levels of anticipated stigma . Associations did not vary by couple serostatus or gender. Other relationship dynamics such as intimacy, trust, equality, "we-ness"/unity, and commitment did not show significant associations with stigma. In the multivariable models on partner support, both general partner support and HIV treatment-specific partner support were associated with less anticipated stigma. In the multivariable models on communication, negative communication styles such as withdrawal , demanding , and avoidant communication were associated with higher stigma . Associations did not vary by couple serostatus or by gender. --- Associations between anticipated stigma and ART adherence In multivariable models on ART adherence, the odds of having high adherence were 45% lower for each one-unit increase in anticipated stigma . A one-unit increase corresponds to a participant saying stigma is "likely" vs. "highly likely". Given the significant associations described above, we also tested whether there were any interactions between partner social support and anticipated stigma and between sexual satisfaction and anticipated stigma and associations with ART adherence. The models showed significant positive interactions between partner social support and anticipated stigma and sexual satisfaction and anticipated stigma such that the association between higher stigma and non-adherence was moderated in couples with higher levels of partner social support and sexual satisfaction . Associations did not vary by couple serostatus or gender. To aid in understanding these interaction terms, we developed two contour plots [77,78] that examine 1) the predicted probability of optimal ART adherence at different levels of anticipated stigma and social support , and 2) the predicted probability of optimal ART adherence at different levels of anticipated stigma and sexual satisfaction . In Fig. 1, adherence is lowest when anticipated stigma is high and social support is low whereas adherence is highest when social support is high or anticipated stigma is low as represented by the blue region . In Fig. 2, we see that adherence is lowest when anticipated stigma is moderate to high and sexual satisfaction is low to moderate whereas adherence is highest when sexual satisfaction is high or anticipated stigma is low as represented by the dark blue region . Fig. 1 The predicted probability of optimal ART adherence at different levels of anticipated HIV stigma and social support Fig. 2 The predicted probability of optimal ART adherence at different levels of anticipated stigma and sexual satisfaction --- Discussion Among couples in Malawi, we examined associations between relationship dynamics and anticipated HIV stigma, as well as the association of anticipated stigma with ART adherence. We found that higher sexual satisfaction and partner social support were associated with less anticipated stigma, and that negative communication styles were associated with higher anticipated stigma. In addition, significant interaction effects showed that the association between higher stigma and suboptimal adherence was moderated in couples with higher partner support and sexual satisfaction. This is one of the first studies to examine the role that relationship dynamics and social support may play in mitigating anticipated stigma in couples and whether relationship dynamics can buffer the negative impacts of stigma on ART adherence. Insights from this study can help researchers develop couple-based interventions to improve important aspects of relationships and build couple resiliency that may lessen the negative impact of anticipated stigma on HIV treatment outcomes. In our study, individuals with higher levels of sexual satisfaction reported lower levels of anticipated stigma, whereas other relationship quality constructs such as intimacy, trust, unity, and equality did not show this association. Previous research has highlighted the importance of sexual satisfaction in relationship quality [79] and relationship satisfaction [80,81] and its impact on sexual and reproductive health [55,82,83]. It may be that couples who have a fulfilling sex life anticipate less stigma from outside their relationships. Some PLHIV have reported that HIV limits or reduces sexual intimacy [84][85][86]. Thus, couples who report high sexual satisfaction despite living with HIV may have particularly healthy and resilient relationships, which also provide a buffer against stigma. Couple-based interventions that promote a healthy sex life, and normalize sex and HIV, may help protect couples from the experience of stigma. In addition, our findings highlight the importance of partner support and communication for anticipated stigma. Couples with more supportive relationships experienced lower anticipated stigma. Also, the association between higher stigma and lower adherence was moderated in couples with higher social support and sexual satisfaction. It may be that people who are in strong, healthy relationships may feel more secure and comfortable with HIV as well as anticipate less stigmatization and discrimination. Finally, negative communication styles were associated with higher anticipated stigma. Partner support and positive couple communication have been linked to positive HIV-related health behaviors such as uptake of couple HIV counselling and testing [87,88], HIV status disclosure [30], encouraging partner ART use [89], and adherence to ART more broadly [33,46,89]. Thus, couples' interventions focused on helping couples develop skills such as healthy couple communication and providing partner support may be optimal for reducing stigma and helping overcome barriers to ART adherence that arise from stigma and discrimination outside the relationship [18,25,90]. We also found that being in a sero-discordant relationship did not weaken the potential protective effect of relationship factors on anticipated stigma, meaning that the association does not depend on couple serostatus. This could suggest that HIV is becoming more normalized with widespread access to ART and "undetectable equals untransmittable" messaging, and that sero-discordant couples who have disclosed are as resistant to stigma as those who are sero-concordant. Recent studies have found that partners are providing an elevated role in offering HIV-related support [89] and there are also signs of growing resistance to stigma from outside the couple, which may be levelling the playing field for discordant and concordant couples [3]. A study strength was that we could report on perspectives of both partners and analyze the dyad as a unit, thus adding to previous research that has examined anticipated stigma at the individual level. By incorporating both partners' perspectives of relationship dynamics, we can overcome potential biases that might be present if just one partner was reporting on their relationship. A possible limitation is that study couples may have more positive relationship dynamics and less anticipated stigma than the general population, given that both partners decided to enroll in a couples' study. Thus, these findings may not be fully generalizable to other populations that may have higher levels of stigma and poorer relationship dynamics. Other characteristics of study participants may also reduce the generalizability of our findings. For example, the mean age in our sample was 40 years, couples had been together for many years , and almost 96% reported optimal adherence. Our results may best represent older, established couples who are better engaged in care, as opposed to younger couples who may face greater challenges with adherence and stigma. We also do not know the HIV status of couples at the time of marriage, and so we cannot speculate as to whether people were trying to sero-sort or choose partners based on their HIV status. Future studies that follow couples at the start of the partnership could help to disentangle the effects of stigma over the course of the relationship. In addition, all measures, including adherence measures, were self-reported and may be affected by social desirability bias. Finally, as this was a cross sectional study, we cannot establish causality. Longitudinal research would be needed to explore how relationship dynamics and anticipated stigma impact adherence to ART over time among couples living with HIV. Qualitative studies that explore the nature of stigma in dyads would also add nuance to this topic. --- Conclusions This research suggests that couple relationships could be leveraged as an important source of resilience and support. Interventions that build resiliency in couples and strengthen couple relationships, with a focus on constructive forms of communication, building emotional and practical support within couples, and a healthy sexual life, could reduce the negative impact of extra-dyadic HIV stigma on the health of couples living with HIV in sub-Saharan Africa. Such interventions could have a positive impact on HIV care outcomes, such as ART adherence, which can help to attain population-level goals for reducing new HIV infections. In over 40 years of the HIV epidemic, not enough progress has been made on eliminating HIV stigma by focusing on individuals in isolation of their social environment. By working with both partners together to fight HIV stigma, we can target the experience of stigma within the dyad while also addressing societal and structural stigma by building couple resiliency. --- --- Abbreviations --- ART Antiretroviral therapy CSSS-Gen General Couple Sexual Satisfaction Scale GEE Generalized estimating equation HIV Human immunodeficiency virus PLHIV People living with HIV Authors' contributions AC, SG, and AR conceptualized the study. AC and JM designed the study and collected the data. AC and SG analyzed the data and drafted the manuscript. All authors read and edited the manuscript and then approved the final paper. --- --- --- Competing interests The authors declare no competing interests. • fast, convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year --- • 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: ---

Introduction HIV stigma can impact couple relationships through stress or bring partners closer through shared experiences. Conversely, couple relationships may protect against the harms of stigma, including anticipated stigma on negative health outcomes. Yet few studies have assessed the potential link between HIV stigma, relationship dynamics, and antiretroviral therapy (ART) adherence. Using dyadic data from a cross-sectional study of Malawian couples living with HIV, we tested associations between anticipated stigma and: 1) relationship dynamics (e.g., trust, sexual satisfaction, communication) and partner support; and 2) self-reported ART adherence. Methods Heterosexual couples (211 couples, 422 individuals) with at least one partner on ART were recruited from clinics in Zomba, Malawi. Partners completed separate surveys on anticipated stigma, relationship dynamics, and ART adherence. Linear mixed models evaluated associations between anticipated stigma and relationship dynamics, and whether associations varied by gender. Generalized estimating equation models tested for associations between anticipated stigma and high ART adherence (90-100% vs. < 90%) at the individual level, and whether they were moderated by relationship dynamics at the couple level.Couples' relationship length averaged 12.5 years, 66.8% were HIV sero-concordant, and 95.6% reported high ART adherence. In multivariable models, sexual satisfaction (β = -0.22, 95%CI = -0.41;-0.03, p = 0.020) and partner social support (β = -0.02, 95%CI = -0.04;-0.01, p < 0.01) were negatively associated with anticipated stigma. Significant interaction effects showed that adherence is moderated in couples with higher partner support and sexual satisfaction such that adherence is lowest when anticipated stigma is high and social support is low, and that adherence is lowest when anticipated stigma is high and sexual satisfaction is low. Conclusions Increased anticipated stigma is most associated with lower ART non-adherence at lower levels of social support and sexual satisfaction. Conversely, supportive and fulfilling relationships may buffer the negative association between stigma and ART adherence. Couples' interventions that focus on improving communication and support systems within couples could reduce the negative impacts of anticipated stigma on couples living with HIV.

Health care workers are one group of frontline workers who worked round the clock during the COVID-19 pandemic. They have devoted the whole of their time to saving and protecting many lives while sacrificing their own. Among them, nurses have been showing their bravery with their nursing care and saving many lives while at the same time suffering from stress and anxiety. While there is abundant literature on the psychological impact of the COVID-19 pandemic on first-line nurses, there is little exploration of their experiences of psychological impact and the support mechanism they relied on. This paper focuses on the psychological experiences during the pandemic for nurses responding in the front line in the Male' area, Maldives. This paper is a part of a study conducted on Maldivian health care workers' experiences during the COVID-19 pandemic. Nurses faced huge psychological pressure as a result of working with a high risk of infection from patients and working in temporary setups with limited resources and manpower. Most of the time nurses worked more than the designated hours, leaving them tired and exhausted. Working with full Personal Protective Equipment for long hours, especially wearing an N95 mask throughout the day made it worse for the nurses as they had difficulties taking breaks for food and other basic needs . This made nurses anxious, worrisome and stressed and often helpless . Nurses feared having to perform their routine tasks with double gloves and a face shield which often gets fogged, reduced visibility and were experiencing difficulties in performing procedures accurately and raised concerns about patient safety . During the initial phase of the outbreak, in the Maldives, nurses like other frontline workers, were in shock not knowing a way forward with the spread of the disease and putting themselves at risk of getting the deadly infection of coronavirus. Health professions often opted to stay away from their families with the fear of the family members getting infected with the virus thus causing lots of stress and anxiety, and this concern for their family getting infected is universal . In addition, nurses worried about their elderly parents and young children at home as a result many nurses stayed away from home for weeks and months. Elderly people with underlying medical conditions are more prone to infections and likely to get the disease as well as children, who are at risk . Unfortunately, many health care workers around the globe who were working on the frontline have sacrificed their lives fighting for this terrible outbreak of COVID-19, which also escalates undue fear, pressure, and apprehension among nurses in the Maldives. In addition, regular media, and news briefings regarding the increased numbers and case projections also added fear and uncertainty . Moreover, mental health professionals have been advising the public regarding mental health solutions such as having social interaction with family and friends via online and other social networking platforms and limiting access to COVID-19 related news on television. Furthermore, to stay focused on indoor activities which give them satisfaction. The mental health problems, stress, and anxiety-related problems also increased three-fold in the country during this pandemic . The psychological impact has been the most affected area of humankind during the COVID-19 pandemic throughout the globe . Nurses have worked in almost every area of the hospital during this pandemic. Especially COVID-19 related intensive care units, outpatient departments, and in the Maldives temporary medical facilities where they had limited resources and manpower. Nurses have explained that changing the facilities daily and adapting to a new routine was a difficult task . --- Literature review Previous studies have shown an increased rate of psychological issues among frontline nurses. A cross-sectional study from China found that among 306 nurses Psychological experiences of nurses during COVID-19 9.4% showed depression, 8.1% anxiety, and 42.7% showed somatic symptoms . Similarly, another cross-sectional study from China, on health care workers during COVID-19 had found that 46.04% reported anxiety, 44.3% had depressive symptoms, 28.75% had insomnia, and the prevalence of overall psychological problems was 56.59%. Among these findings, 62.02% nurses reported having psychological problems . Other studies also have found a high prevalence of insomnia and sleep disorders among nurses working in COVID-19 related facilities during the pandemic . Moreover, a descriptive study which explored the psychological symptoms faced by the frontline healthcare workers showed that the midwives and nurses had high psychological effects due to the COVID-19 outbreak . In this study nurses and midwives were scored 52.75 ± 9.80 for State Anxiety, 44.87 ± 7.92 for Trait Anxiety Inventory and 35.16 ± 9.42 for Intolerance of Uncertainty Scale. The study also determined that 54.5% of nurses and midwives have been making their lives worse since the outbreak started, 62.4% had difficulties in dealing with the uncertain situation in the outbreak, 42.6% wanted psychological support and 11.8% had alienated from their profession. . In addition, previous qualitative studies had identified important themes such as death anxiety, nurses' inability to help patients, and fear of infecting the family that highlight a range of psychological issues among nurses. Furthermore, increased workload, physical exhaustion, shortage of adequate personal equipment, and nosocomial transmission are noted as factors that may have dramatic effects on physical and mental well-being . Another systematic review identified that one in five health care professionals reported symptoms of anxiety and depression during the COVID-19 pandemic . These finds show the magnitude of the psychological issues around nurses and other health care workers during the pandemic. Therefore it is essential to explore the coping and resilience experiences of the nurses to help and maintain the wellbeing of the nurses, as nurses form the largest health workforce all over the world working on the frontline during this pandemic. --- Method A descriptive qualitative research design was used in this study. The qualitative paradigm argues that there are multiple versions of reality even with the same person . The purposive sampling method was used to generate data for this study because it pursues to narrate the experience of the study participants in a specified area of interest . Furthermore, purposive sampling in qualitative research enhances the transferability of results . Hence, the sample was handpicked from those who are regarded to be representative of the nursing population participating in the front line of the COVID-19 response. Five nurses working in the COVID-19 related in-patient facility that participated in semi-structured, in-depth, technology-enabled interviews. The sample size was adequate for the research as the number of participants is not important because the addition of each new individual diminishes the in-depth picture in qualitative inquiry . The participants were contacted through both mobile phones and online platforms Viber and Facebook messenger. These methods were used because the country was in complete lockdown, and hence, face-to-face meetings were impossible. Semi-structured open-ended questions were used, for example: "tell me about your experiences working with COVID-19 patients and its impact on your mental health? Can you share with me the coping and support you got?" Verbal consent was obtained after a thorough explanation of the survey to the participants. To maintain anonymity and confidentiality, participants' names are not used. Ethical approval was obtained from the Maldives National University Research Ethics Committee. The interviews were recorded with the participant's consent and transcribed for the analysis. Transcripts were read and reread to get a clearer understanding of the participants' experiences. Thematic analysis was done and broad themes were identified from the data. --- Results The results are summarized under the three major themes: overwhelming experience, valuing family support, and nurses being treated differently. --- Overwhelming experience Nurses discussed the overwhelming experience of caring for patients and dealing with dead bodies as "nerve-racking" and a hurtful experience. One of the nurses stated that "working in the COVID ICU was overwhelming, stressful and traumatic"… . Dealing with dead bodies, putting bodies in body bags, informing the family members about the deceased, and informing them that they cannot perform the rituals as usual in a cultural and religiously acceptable manner were noted as particularly traumatic. This was a huge dilemma for the family members because the usual death rituals were prohibited due to the chances of others getting infected. As a ritualist experience in Muslim countries, the dead body is washed and bathed and the last respect is given by seeing the face of the dead. Another nurse expressed her feelings saying "I have contacted a COVID-19 positive patient for the first time that was also without proper donning and doffing PPE, even though it was nerve-racking, it was a good experience"…. Another participant explained how she was trying to comprehend the whole situation of death concerning her family members. She said, "I was sobbing in PPE and imagining how am I going to deal with this situation if it were her family member", Another participant added that "Increased number of cases getting infected and the number of contact tracing, I was very scared that my family and loved ones may leave in front of me…" Another participant explained how she was trying to comprehend the whole situation of death concerning her family members. She said, "I was sobbing in PPE and imagining how am I going to deal with this situation if it were her family member", Another participant added that, "Increased number of cases getting infected and the number of contact tracing, I was very scared that my family and loved ones may leave in front of me…" --- Valuing family support Family support is considered an important element of social support . All the nurses communicated about the tremendous support provided by their family members during the pandemic. They also raised concerns regarding leaving their children for long hours with grandparents who themselves need support. Similarly, a qualitative study on the psychological experience of caregivers of COVID-19 patients identified the role of family members and raised feelings of gratitude towards family members . Nurses also discussed their professional responsibility making them stronger. One of the participants said, "with all this chaos and misery I found peace through my work, the help of my coworkers and family members". Support from family and friends added courage and motivation to go on with daily life during these difficult times. Others said, "... my family was my rock during that time…." --- Nurses were treated differently One of the first things that the general public is concerned about during infectious disease pandemics could be fear and anxiety toward health professionals as carriers of the virus. During the COVID-19 pandemic, the public was confused and scared of nurses thinking that they could be infectious and were a threat to their safety. As a result, they were rejected in the community and people were afraid to be in close proximity to nurses, they even avoided contact. This type of similar incident has occurred in other parts of the world. In this regard, the experience of stigma and labeling was reported and perceived as a threat to the safety of others and as disease carriers . Nurses said, "people are scared to stay under one roof with us, to talk to us… we have seen it on their faces, all this…" --- Discussion This study explored the psychological experiences of nurses working in the COVID-19 facilities. Nurses in the Maldives worked in temporary facilities specifically built to care for the COVID-19 related patients where emergency care, as well as routine care, were provided round the clock. These nurses have shown their enthusiasm for caring for patients and some nurses found peace and satisfaction in the work itself. Others got support from their family members, loved ones, colleagues, co-workers, and senior nurses. Most of the nurses expressed their concern regarding the care as overwhelming and emotionally exhausting. Previous studies have identified that most of the nurses were overworked during the pandemic and were working overtime as a daily change of working areas was difficult . Moreover, extreme incidences such as suicides of nurses occurred, as was observed in Italy . Psychological incidences among nurses have been reported in several studies . A study from Wuhan, China, identified decreased appetite, fatigue, frequent crying, nervousness, insomnia, and suicidal thoughts as the most common problems among nurses . Furthermore, Salari et al., observed that the prevalence of stress and anxiety, and depression among frontline nurses was high. Similarly, the current study also noted nurses sobbing and crying at times due to the emotional burden experienced while taking care of patients and relating the situation to their family members. Thus, family support is an important factor for nurses in combating stress and anxiety during this pandemic. Most of the participants talked about the support and assistance provided by their family members in helping out as well as giving reassurances which helped the nurses to relax and make them more aware of stressful situations needing their service. Moreover, perceived family support is found to be a positive aspect of tackling depression . Nevertheless, another qualitative study found that nurses used different coping styles, such as increasing food intake, doing regular exercises, breathing, and relaxing, meditation, emotional expression, and venting . This pandemic of COVID-19 has taught many lessons in life dealing with stressful situations and adjusting to new ways of human interactions. For instance, this study has provided an insight into how nurses have been treated differently by the general public. Public hostility has risen towards nurses working in the hospital in general, with the assumption that they would be infectious and may be carrying the disease. Previous studies have also reported social rejection of nurses; studies from Indonesia and Israel found a higher level of social rejection and high level of loneliness and depression among nurses who worked compared to nurses who did not work in the COVID-19 related facilities . Keeping up with the strict preventive protocols in taking care of COVID-19 patients and complying with the rules and regulations from the authorities have added a lot of pressure on nurses and other health care workers. Moreover, dealing with mass death, handling body bags and disclosing the negative news to family members of patients had produced long-term psychological effects on nurses. This study revealed the overwhelming experience as one of the main themes under which nurses describe mental exhaustion, fatigue and grief which is consistent with nurses' experiences of anxiety and distress due to the death of COVID-19 patients in other settings . According to Galehdar et al. , nurses described the death of patients, especially young ones, as an agonizing experience for them and seeing a patient with respiratory distress and Psychological experiences of nurses during COVID-19 being unable to help them had a huge impact on the nurse's mental health. Not being able to perform the burial of the deceased according to the cultural practices was also found to contribute to the emotional distress faced by the nurses as they had to disclose the bad news to the loved ones of the deceased. Supporting nurses psychologically and attempting to provide alternative modes of support would minimize the risk of mental distress among nurses. It is crucial to maintain a healthy psycho-social and physical health of nurses. Increasing social interactions and engaging in a wide variety of activities is a well-accepted recommendation for patients suffering from anxiety and depression . Given the significant impact of the COVID-19 pandemic on nurses, facilitating such interactions at workplaces is likely to have a positive impact on the recovery of nurses as well as other health care workers. Moreover, on-the-job education and training regarding psychosocial issues should be provided to all healthcare personnel. Furthermore, it is imperative to assess and monitor their health and wellbeing regularly at the early stages of pandemics for the welfare of nurses and other healthcare workers. --- Limitations The study is limited by the time constraints of nurses and the short-term nature of the exploration limited to the early stages of the COVID-19 pandemic. This could have possibly affected the depth of the information obtained for a comprehensive qualitative analysis of psychological experiences. In addition, the findings represent views of those who worked in COVID-19 facilities but who belonged to one hospital, so, the findingsmay not be represent all nurses. However, it provides an important and useful insight into the psychological experiences of nurses who were directly involved in the care of COVID-19 patients during the pandemic in the Maldives. --- Conclusion The Maldivian nurses working at the COVID-19 facilities had faced psychological adversities during the pandemic. These findings can help in identifying interventions for supporting the health care workforce. Appropriate assessments to monitor mental wellbeing and reduce psychological problems among nurses need to be established, which can support nurses' work during contagious disease outbreaks. In addition, evidence-based psychological interventions should be implemented.

The Maldivian nurses had to face and deal with unique challenges during the coronavirus outbreak. As a result, they often faced extreme psychological pressure as a result of working constantly with a high risk of infection from patients and working in temporary setups with limited resources and manpower who were not well equipped to deal with a pandemic for the first time. This study aimed to explore the psychological experiences of nurses during the COVID-19 pandemic in the Maldives. A descriptive qualitative research design was used for this study. Five female nurses working in the COVID-19 related in-patient facilities participated in semi-structured, virtual (telephone or online) interviews. The data were analyzed using thematic analysis. Three themes emerged from the data analysis: Overwhelming experience, nurses being treated differently, and valuing family support. The participants described the experience of being emotionally overwhelmed. Many experienced feelings of uncertainty and grief, mainly when they had to handle the death of COVID-19 patients under their care. Most significantly when they had to handle the dead bodies in a body bag as it was very painful for the families not being able to perform their last respect and rituals as per cultural practices. The second main theme was nurses' grievance owing to the differential treatment they were subjected to by the public. When nurses had to go back to their resident islands, the island community was scared of contracting the disease from the nurses and as a result the public rejected interacting with the nurses. This further isolated the nurses subjecting them to loneliness. Finally, family is the most important and valuable support to overcome their psychological burden. Family members including husbands and mothers were very supportive of taking care of the nurses' children while they worked long hours. The Maldivian nurses in COVID-19 facilities faced psychological adversities during the COVID-19 pandemic. The findings from this study can help in identifying issues and experiences of nurses, in order to implement appropriate interventions to monitor and support nurses during contagious disease outbreaks.

Introduction Health is a social need of every society. It helps individuals to improve their socio-economic status in the society. It is due to the fact that for the mutual coexistence and growth of society, socio-economic status of its members is of utmost necessity . In order to measure socio-economic status numerous techniques have been adopted, but most of them are quantification of household income, parental education, and their occupational status . Many studies have demonstrated links between a child's family background and health. In research relevant to child health, socioeconomic and demographic characteristics such as parental education, family income, race, and ethnicity always come out as the major determinants. Poor socioeconomic status has constantly been found to be a predictor of poor child health, according to widespread observation . Children, being the constructors of a future nation, should have good health. Since children enjoy a pivotal position in the nation's present and its future, so everyone who is related to them is highly committed to ensure comfort zone for them that they are healthier, wiser, more active and possess maximum potential as they have required for their life . Children are more at risk than adults and the poor economic status of the household adversely affects child health through poor hygienic conditions, malnutrition, lack of health services and lack of awareness. Particularly in developed countries, 21st century has been an indication of reduced infant and child mortality as it has steadily decreased it to the minimal levels. It is found that occupational categories vary from country to country. Longest held occupation of person, in majority of the studies have used as common family occupation but in socio economic studies, family occupation is significant for determining childhood socioeconomic conditions . Malik & Bakir through their study conducted in India exhibited a sturdy relationship between father's occupation and health of the child. According to Kolesnikov & Angeles collective family income is more important to woman who is not engaged in income generating activities. However, there are some studies which show medium to high impact of household income on child health. Gruebner et al. in Kenya studied characteristics of the mother and children e.g. small number of child death, older-age mothers, decent education status, water and sanitation facilities, good housing conditions, girl child, and marital status were associated with low child mortality. Nonetheless, the infant mortality rate in Pakistan was not encouraging, at 64 per 1000 live births in 2014-2015), far behind the targets set by the Millennium Development Goals , which were later renamed the 2030 Agenda for Sustainable Development in 2015. . The United Nations Organization has established a number of health objectives for all nations to follow in order to guarantee their citizens' access to medical care. One of the biggest ways to analyze the health of the children is through infant mortality and the proxy-measures of socio-economic elevation . Cultural barriers contribute significantly to maternal and infant mortality because people in rural areas frequently opt not to use available healthcare facilities. Instead of travelling to the hospital or other medical institutions, people turn to alternative medicine and local healers . The National Health Vision has implemented the following objectives just to recover the health and well-being of the Pakistani society: Supply a unified vision to boost health whereas making certain provincial autonomy and variety, reciprocate with provincial and federal strives in strengthening the progress, having learned through practical and heading towards the goals of good health, enhance compliance with international instruments and treaties of child health, increase collection of information, surveillance, coordination, and conducting research for improving health systems and lay a foundation basis for implementing Sustainable Development Goals . Pakistani government has started a number of projects to provide various healthcare facilities at hospitals. There are basic health units in practically every community in rural areas, and these BHUs offer services for mother and child health care. The government also provides infants with medicines and immunizations to protect them from disease and to reduce the infant mortality rate . The study at hand is important because it will identify the key factors affecting children's health and examine whether they are operating effectively in a place like Pakistan. The findings of the study also highlighted the region's need for better maternity and childcare facilities. --- Scope of Research The findings have implications for policymakers in education and social work. A child's financial status and parental concerns are important indicators of his or her health. The research has significance for the literacy and training sectors as well, as it demands parents to be taught and given pre-planned training in order to care for their children's health and nutrition. --- Rationale of Research The current study makes a contribution to the fields of education and social work. The researcher conducted research with malnourished children who performed poorly at school. The parent-teacher meeting minutes and academic performance produced a research gap that must be filled in order to investigate the parents' socioeconomic status and its relationship to academic achievement. --- Research Question The socioeconomic determinants that have an impact on children's health in the district of Sargodha were the primary research issue in this study. --- Objective of Research The major objective of the research was to identify the socio-economic variables that affect children's health in the Sargodha district. --- Literature Review The Socioeconomic factors concerning parental education cover an intricate field of literature. In order to determine how parental education impacts educational attainment of children, researchers have laid their attention on various specific variables. Through the interplay of these variables the researchers have revealed that literacy is a social practice . The common variables include individual, school, culture and home. The objectives of such studies have usually been to conduct in-depth mastery reviews of relevant literature which the academicians over the last 15 have documented regarding the effects of culture and society, individual, peers and school on the educational performance of the students . The purpose of these researches had been to extend researchers' proficiency to enhance a deeper knowledge the academicians got through their studies and experiences. Healthy and energetic members of the society depend upon healthy mothers. Although girls, who are future mothers, are biologically better off and can better cope with unfavorable circumstances than boys yet they become vulnerable in differential healthcare practices in spite of the fact that a large fraction of these children are taken to a healthcare provider instantly. It shows inadequacy of the healthcare facilities in the society which are resorted to seek ailments of the children. The quick measures adopted are not effective in achieving for them adequate medical treatments for their children. It is due to the improper policies that even those children die whose ailments are clinically preventable. The high referral and low cure ratios give stress to improve the local healthcare facilities with regard to staff and facilities. Need assessment is needed as far as rationale management of sickness and quality of care is concerned. According to Sreeramareddy et.al in Nepal displayed child mortality pattern was higher in ignorant mothers than those of the educated ones during a period of . A study conducted on newborns of Nepal exhibited that risk of infant mortality raises with avoidance of breastfeeding to the newborns. About 7.7% deaths of neonatal can be fended off if breastfeeding in newborns is stated within a period of one an hour after birth . It reveals that the mother and child both area high risk of infection. Almost half of the births, in Raj Shahi district, are performed in such places and phenomenon behind this reason is traditional beliefs, socio-cultural values, and the lack of awareness . Luo and Waite showed through his research the children having poor health show poor performance in school. Data displays that low SES lay its impact on education, future health and income. Currie and Lin compared the child health of low socio-economic status children with those of high socio-economic status. Data Illustrates that children from lower socioeconomic backgrounds are more inclined to have a low birth weight than those from higher socioeconomic backgrounds. The data of U.S., Canada and Britain show that the gap of child health between low and high socioeconomic status starts from birth and continues through adulthood and beyond. It is because of universal health insurance coverage in these three countries. Evidences from the U.S., Canada and Britain recommend that poor children are likely to suffer from chronic diseases than rich ones. A study conducted by Brainerd & Menon health and religion in early years of childhood in South Asia showed the part of religion in child health. The research was conducted in Nepal, India, and Bangladesh to determine the impact of religion on child health. Women autonomy, dietary restrictions and son preferences affects child health because of religious behavior. Result showed that the ratio of Muslim infants' survival is higher than those born to Hindu families. Stroh Schein said that persistent poverty lays worse impacts on child health than current poverty. Findings of numerous studies suggest that persistent poverty lays its worse impacts on children's physical and mental health than the current poverty. According to the report of UN, Department of Economic and Social Affairs, Population Division, 2011, among all the Asian countries, China and India have higher female child mortality rates. A research conducted in India shows that more female child mortality in the country is due to the cultural factors. Gender discrimination which is a part of cultural values can be overcome through socio-economic development . According to Jones et al., mother's education lays its positive effect on child health. In the U.S., between women's education was raised to observe its impacts on children's health. It was observed that those mothers who were well educated care more the infants' health than those who were uneducated or poorly educated ones. --- Research Methodology The present study was designed to identify the socio-economic factors responsible for child health in Sargodha district. The universe of this study consisted of Sargodha district. Multi-staged sampling technique was applied and data was collected from 200 respondents from Sargodha district. Questionnaire as a data collection tool was applied which was comprised on 14 items. --- Analyses and Interpretations Data was analyzed using descriptive and inferential statistics. Frequencies and percentages were computed. Independent sample t-tests and One-Way ANOVA tests were used to evaluate hypotheses. The gender of the respondents is reflected in the data in the following table. 60% of the responses were male, with the remaining 40% being female. The table also included data about the respondents' familial situations. The majority of responders , had a blended family, 27% had a nuclear family, and 10% had an extended family. According to the findings, 43% of respondents agreed that parental education has an impact on children's upbringing. 19% of respondents strongly agreed, while 17% disagreed. 14% respondents were undecided. 7% of respondents strongly disagreed with this. Because the majority of respondents agreed or strongly agreed with the statement that parental education influences children's nurture, they seek opportunities to provide better education to children who, in their eyes, are the future parents of the next generation. According to the data shown above, 40% of respondents have a primary/matric education. Intermediate/Bachelor education was held by 26% of respondents. Masters/MPhil/PhD education was held by 21% of respondents. 13% of those polled were illiterate. According to the data, the bulk of respondents' monthly income ranged between $10,000 and $20,000. The monthly income of 29% of respondents ranged from $21,000 to $30,000. The monthly income of 17% of respondents ranged from $31,000 to $40,000. Just 14% of respondents had a monthly salary of more than 40,000. Because the majority of respondents had a monthly income of $10,000-20,000, the data indicate that the majority of respondents have a modest monthly income. According to the findings, 35% of respondents strongly agreed that parents' healthy lifestyles really have an impact on their kids. 17% of respondents remained indifferent, while 32% of respondents expressed agreement. 10% of those surveyed disagreed. Just 6% of respondents firmly disagreed with this. Although more than two thirds of respondents agreed and strongly agreed with the statement that parents' healthy lifestyle influences their children, parents should set a positive example for their kids by living a healthy lifestyle themselves. The data revealed that 45% respondents were agreed that parent's having low income try to provide healthy environment to their children. 29% of respondents strongly agreed. 13% of respondents were indecisive. 9% of respondents disagreed. This was strongly disagreed by 4% of respondents. A little less than three-quarters of respondents agreed or strongly agreed with the statement that low-income parents strive to provide a healthy environment for their children. It means that parents despite financial constraints parents leave no stone unturned to provide healthy environment to their children. The research revealed that 45% of respondents thought that parents' ignorance is the primary cause of children's health issues. 23% responders were strongly agreed. 14% of respondents expressed no response. 13% of survey participants disagreed. 5% respondents were strongly disagreed to this. The majority of respondents-more than two thirds-agreed and strongly agreed with the statement that parents' ignorance of the issue is a key contributor to children's health complications. As has been revealed in the Table 21 that illiterate parents remain less conscious about their children's health, the phenomenon of awareness is associated with education. The more you are educated the more you will be aware of the health-related information. The data revealed that 33% respondents were agreed that mal-nutrition affects children's health. 30% respondents were strongly agreed whereas 20% respondents were remained neutral. 12% respondents were disagreed. 5% respondents were strongly disagreed. Since an overwhelming number of respondents were agreed and strongly agreed to the statement that mal-nutrition affects children's health. Therefore, parents should pay proper attention to diet and nutrition of their children. According to the figures, 26% of those surveyed strongly disagreed with the statement that they are pleased with the different governmental campaigns. In response, 24% expressed neutrality. 22% of survey participants disagreed. 20% of those surveyed agreed. 8% of those surveyed strongly agreed. When asked if they agreed or strongly agreed with the government's various campaigns, nearly half of the respondents said they did not. The respondents' opinions were formed for two reasons: first, the initiatives lacked appropriate funding, and second, there was poor governance. According to the findings, 44% of respondents believed that the function of the doctor in treating children is crucial. 21% of those surveyed strongly agreed. The neutral response rate was 19%. 10% of those surveyed disagreed. Just 6% of respondents firmly disagreed. The assertion that a doctor's involvement is really crucial for treating children was agreed upon and strongly agreed upon by slightly fewer than two thirds of the respondents. Their assertion is supported by the evidence that self-medication and treating a child without contacting a doctor can result in child fatalities. The data revealed that 32% respondents were agreed that private health sector plays vital role in providing health facilities. 23% of respondents were strongly disagreed. 16% of respondents were disagreed. 15% of respondents were indifferent. 14% of respondents strongly agreed. More than half of the respondents agreed or strongly agreed with the statement that the private health sector has a significant role in providing health care. It is because of the fact that respondents were disagreed and strongly disagreed to the statement that they are satisfied about different public sector health campaigns. The data revealed that 36% respondents were strongly agreed that contaminated water creates many diseases among children. 32% respondents shown agreement. 15% respondents stayed neutral. 9% respondents reported disagreement. 8% respondents reported strong disagreement. Since an overwhelming number of respondents were agreed and strongly agreed to the statement that contaminated water creates many diseases among children, so the parents should bear in mind to avoid the use of contaminated water. According to the findings, 38% of respondents agreed that environmental pollution has an impact on children's health. 28% of respondents strongly agreed. Neutrality was expressed by 19% of respondents. 9% of respondents disagreed. 6% of respondents strongly disagreed. Two-thirds of respondents agreed or strongly agreed with the statement that environmental pollution has an impact on child health. The environment is extremely contaminated in urban areas. As a result, the government should prioritize this issue. --- Inferential Analysis Hypothesis 01: There is a significant difference of child health regarding age of the children. The F-ratio 12.35 is statistically significant which indicates that child health differs with respect to age of the children. Therefore, the hypothesis that there is a significant difference of health among various age groups of children has been accepted. As the highest means score i.e. 109 is of age group 15-18 years, therefore, the health of children in this age group is better. Hypothesis 02: There is a significant difference of child health regarding birth place of the children The t-ratio -7.786 is statistically significant which indicates that children belonging to urban area possess better health than those who hail from rural areas. Therefore, the hypothesis is accepted. Hypothesis 03: There is a significant difference of child health regarding sex of the children. The t-value 5.340 is statistically significant which indicates that male children possess better health than female children. Therefore, the hypothesis that there is a significant difference of children's health regarding their sex is accepted. Hypothesis 04: There is a significant difference of child health regarding their fathers' education. The F-ratio 4.32 is not statistically significant which indicates that child health does not differ with respect to their fathers' education. Therefore, the hypothesis that there is a significant difference of children's health regarding various levels of their fathers' education has been rejected. Hypothesis 05: There is a significant difference of child health regarding their mothers' education. The F-ratio 10.26 is statistically significant which indicates that health of the children differs with respect to their mothers' education. Therefore, the hypothesis has been accepted. As the highest means score i.e. 110.5 is of children whose mothers have secondary education, therefore, the child health of this level is better. Hypothesis 06: There is a significant difference of children's health regarding their father's occupation. The F-ratio 0.856 is not statistically significant which indicates that child health did not differ with respect to their fathers' occupation. Therefore, the hypothesis that there is a significant difference of children's health regarding their fathers' occupation has been rejected. Hypothesis 07: There is a significant difference of child health regarding household income of the children. The F-ratio 4.42 is statistically significant which indicates that child health differs with respect to children's household income. Therefore, the hypothesis that there is a significant difference of children's health regarding various levels of their household income has been accepted. As the highest means score i.e. 161.68 is of the children with more than 40000 rupees as their monthly household income, therefore, the health of these children was better. --- Discussion Child malnutrition is rapidly growing into one of the most important societal issues in developing countries such as Pakistan. Insufficient dietary intake, inadequate care, infectious diseases, and unequal food distribution at the home level are the main factors that increase children's vulnerability to malnutrition. The study concludes that factors such as economic position, malnutrition, environment, and lack of awareness have an impact on children's health. Child health greatly differs with respect to the birth place of the children. Children from urban areas have greater health than those from rural areas, and there are notable differences between the sexes of the youngsters. Male children have better health than female children have. There are no noticeable disparities in the health of the children depending on the fathers' engagement in their education. The health of children is significantly impacted by what mothers educate their children. Children with a secondary education are healthier than children without one. Child health does not alter considerably depending on the work of the father. The occupation of the father had no effect on the health of the child. Child health varies greatly according to the children's household income. Children with household incomes greater than Rs.40,000 had better health. As Rutter explained that the children of such families who have low socioeconomic status are prone to have bad health. This is not necessarily because of poorer genetic endowment but can crop up from variety of backdrop elements that call up various genes. Duflo, suggested that income itself has relatively low impact on child health. Income, however, matters a lot in context of developing country since economy of a country impacts child health. Therefore, children with low socioeconomic status are more prone to poor health due to the prevailing situation surrounding birth and growth rather than the worse genetic endowment. In a nutshell, the study found that children's health is influenced by socioeconomic variables. Children's health is impacted by the household's poor socioeconomic situation. Socioeconomic standing is typically determined by combining factors such as work, income, and education. It is generally understood to refer to social status or rank of an individual or organization. When viewed through the lens of social class, the attention is on privilege, power, and control. Additionally, unequal access to and distribution of resources are shown when socio-economic status is examined as a gradient or continuous variable. These findings are consistent with recent study that high child mortality in Pakistan is a result of the country's poor socioeconomic development and ineffective government efforts to improving children's health . Like many developing nations, Pakistan continues to make great efforts to lower the rates of maternal and under-five child mortality. Malnutrition is significantly associated with family size. These findings are congruent with research on lack of health services, multiple pregnancies, children with mental and physical disabilities, inadequate nutrition, and environmental contamination are to blame for this issue . Due to differences in the availability of health services, insufficient access to education, and low economic resources, children from rural areas are thought to be more susceptible to malnutrition in undeveloped countries. Recent studies have also revealed that mothers' educational levels have a significant influence on their children's health, nutrition, and access to medical care. Insufficient nutrition impacts growth and underweight, while adequate nutrition improves health and disease resistance. --- Conclusion and Recommendations The study's findings indicate that in Punjab province's Sargodha district, children under the age of five are more frequently at risk of malnutrition, which is the primary cause of health problems. This study found that a number of variables, including gender, age, region, level of maternal education, family income, family size, adequate food access, and vaccination coverage, have a significant impact on childhood malnutrition. Male children's nutrient requirements should be appropriately focused on lowering malnutrition vulnerability because they are more prone to malnourished than female children are. It is crucial to increase awareness of trainings and education programs, especially in rural areas, about the nutritional value of food, diseases brought on by nutritional deficiencies, the significance of personal hygiene, the significance of maternal education, the use of treated water, and sanitation facilities in order to combat malnutrition. Government, nongovernmental organizations , and the community must collaborate to develop and implement nutrition-related policies, policy measures, and awareness campaigns in order to promote child health. Health extension organizations should employ print, social, and electronic media as vital resources for advancing nutrition education about child malnutrition and related preventative measures. To improve a child's nutritional status, proper action must be done to encourage children's vaccination programs for competing immunization, as well as ideal diet for children to boost illness resistance and physical strength. The study recommended that nongovernmental organizations take the initiative and raise funds to promote school-based child health programs. Furthermore, the government should educate school administrators and religious institutions on the importance of immunization for all children. The analysis also proposed that, in order to enhance children's health, mother be economically empowered by gaining appropriate skills and trainings through government efforts, and that school-meal facilities be provided to children from low-income families. Government should take serious initiatives to reduce poverty through its social policies.

In the modern era, malnutrition in children is the primary cause of sickness and mortality worldwide, but especially in underdeveloped nations. Children who are malnourished experience significant delays in their physical development and academic success. The main objective was to investigate the socio-economic determinants influencing the health of children in the Sargodha District. Population of the present study was parents, having at least one child. Multi stage sampling method was used and study was quantitative in nature. Since maximum of the population comprised of literate parents, therefore, questionnaire was used as tool of data collection. Major findings revealed that: majority of the respondents agreed that families with higher socio-economic status (SES) can better nurture their children than those with lower SES and parents with lower SES cannot give their children proper health facilities. Majority also agreed that poor sanitation in slums; polluted environment, less education, lack of parental awareness, mental and physical stress, marital friction, larger family size, poverty & scarcity of economic resources are contributing factors towards child health problems. Moreover, the study suggests supply of adequate amount of funds to school and health department and good governance to combat these issues.

Background Moral discourses shape public attitude about what is acceptable and unacceptable, and spur actors to specific actions. Morality in sex and sexuality is a cultural and religious construct grounded in and often regulated by policy, legal instruments and ramifications [1]. The practice of same sex relations is both illegal and a social taboo in sub-Saharan Africa [2]. Sexual minorities have also received little attention, both in the realms of research and intervention. Previous research has established that Lesbians, Gays, Bisexuals and Transgender community encounter multifaceted challenges that affect their health seeking behaviour and use of health care services. In the context of HIV/AIDS, addressing the unique health needs of at risk groups is reckoned as an effective strategy of tackling HIV/AIDS [3][4][5]. Studies conducted of late depict that LGBT in general and men who have sex with men in particular experience high rates of HIV infection globally [4][5][6]. LGB in Ethiopia live under multifaceted social and legal strictures that mediate various aspects of their lives. The Penal Code, which underwent revision in 2005 after almost five decades, upholds criminalization of same sex relations. This in turn further reinforces the practice of religious institutions that vehemently oppose homosexuality. While local religious and other advocates against homosexuality are vocal and enjoy a great deal of support and public platforms, advocates for the rights of homosexuality are hardly visible except in cyber space, using pseudonyms, which appear to be the only safe space. These structural determinants inform attitude and behaviour of individuals, fostering stigma and discrimination and hate crimes against homosexuals both by citizens and members of the law enforcement in Addis Ababa, unpublished) [7]. Same sex relation represents one of the least researched topics in Ethiopia wherein legal and social strictures against such relations pervade all aspects of life; and denial, stigmatization, and criminalization are the norm in Addis Ababa, unpublished) [8]. The lack of data about men who have sex with men and absence of interventions targeting this group have for long been glaring omissions in the national health reports [8][9][10][11]. Recent studies, however, underlined the existence of this group and the dangers of lack of recognition of the group in the HIV prevention and treatment endeavour in Addis Ababa, unpublished) [11,12]. The few studies on MSM in Ethiopia also emphasise the impact of structural factors that influence their access and use of health services. These studies also highlighted the dearth of data about politics of sexual identities of LGB, and state and extent of access to health services in Addis Ababa, unpublished) [7,8] in a context shrouded by 'Homophobic public discourse and religious prohibition [and] … political silence' in Addis Ababa, unpublished). This paper examines the intersecting factors that determine health care seeking behaviour and utilization of health care services among LGB in Ethiopia including the diversity in experiences of these determinants and differences in the coping mechanisms to navigate these challenges within the LGB group. We draw on Intersectionality approach [13][14][15][16] to frame the research, and unpack differences in the lived experiences within and across categories of LGB. Intersectionality approach stresses how the existence of multiple factors mutually construct one another and further illuminates how individuals are positioned in unequal power relations [13][14][15][16]. According to Hankivsky et al. 'social locations are inseparable and shaped by interacting and mutually constituting social processes and structures, which, in turn, are shaped by power and influenced by both time and place' [13], p., 2. We argue that interrogating the lived experiences of LGB is pivotal to understand factors influencing health-seeking behaviour and utilization of health services. --- Methods --- Research design and sampling A concurrent mixed method design was used with the purpose to advance understanding about health care seeking behaviour and utilization of health care services among LGB in Ethiopia. Secrecy and criminalization, coupled with widespread stigma make identifying and recruiting LGB participants in Ethiopia an onerous task in Addis Ababa, unpublished) . As a result, purposive sampling was found appropriate to identify participants [17,18]. The first author came to know another Ethiopian researcher who recently conducted a study on MSM and this person put the researchers in touch with contacts, both personal and virtual as entry to identify and recruit potential participants who are in same-sex relations. This was followed by the use of snowball sampling wherein initial contacts were asked to recommend other potential participants for the study. Though it was mixed method research, quantitative findings are by no means representative, due to the procedure used to recruit participants and size of the population. --- Data collection The development of the research tools was informed by review of literature and the purpose of the research. The questionnaire was pilot tested and revised. In the quantitative wing of the research, 100 LGB took part in a survey using interviewer or self-administered structured questionnaire. Among others, the main issues covered by the questionnaire include: lived experiences of LGB with specific focus on social networks, health needs, health care seeking behaviour, barriers, and coping mechanisms. Five gay Ethiopian men were recruited as research assistants . They all had first degree and above in social sciences, and the first author provided them with short training on research methods and data collection in general and the data collection instrument in particular. In the qualitative arm of the research, individual and group interviews were used to generate data about the lived experiences of LGB in relation to their social networks, health needs, barriers to health care services, and ways in which they navigate these challenges. The indepth interviews with 10 MSM and an FGD with eight MSM were carried out by the first author of the article. It was not possible to find willing Lesbian study participants for the in-depth interview or FGD. This is perhaps due to the fear of exposure and grave implications in their lives. The in-depth interviews and focus group discussions were audio-recorded with the permission of participants. The data collection was undertaken in November and December 2017. --- Data analysis The quantitative data was captured and analysed using SPSS. Seven of the 100 questionnaires had major gaps and thus they were removed. The qualitative data was analysed thematically with themes generated from research questions and data. The qualitative audio recorded in-depth interviews and focus group discussion were transcribed and translated into English by the research assistants, which were then cross checked by the authors for accuracy and completeness. ATLAS, a qualitative data analysis software, was used for data analysis. The transcripts were open coded by the first author. Through an iterative process, categories were developed from the codes. The categories were further developed into broader and more analytical categories/themes that respond to the research objective [19]. The data was triangulated combining the information from different methods and sources [18]. --- Results --- Profile of participants Those informants who participated in in-depth interviews and FGD were between the ages of 23 and 32 years, and they represented a diversity of 'sexual identity' , ethnic groups, beliefs and socio-economic background. Some of them were graduates from the university and involved in a variety of professional activities. There were also school drop-outs and school leavers without any gainful employment. The quantitative survey covered ninety-three LGB with a median age of 26 . The vast proportions of the participants were originally from Addis Ababa and reside in the city . With respect to their sexual identity 64.5% identified themselves as gay, 18.3% bisexuals, and the remaining 17.2% were lesbians. Close to half of the participants were Orthodox Christians, followed by Protestants , Muslims and Catholics . A significant proportion of the participants did not specify their religious membership. For predominantly religious society, this perhaps has to do with the dissonance that the LGB feel between the normative prescriptions of their religion and their sexuality. Indepth interview informants alluded to experiencing cognitive or emotional dissonance towards religion because of their 'unacceptable' sexuality. 'Right now, I don't practice any religion. I am agnostic. But I grew up in a protestant Christian family. ' The vast majority of the participants were single , with the remaining being married , cohabiting or widowed . --- Coming out and reactions The survey data shows variations in the extent to which LGB disclose their sexuality to individuals in their various social groups . As depicted in the above table, friends were the most reported followed by family members , or work colleagues . Seven in ten LGB claimed to be open about their sexual orientation on online spaces like social media, where they still maintain anonymity by using pseudonyms. Disclosure, wilful or not, was often met with stigma, discrimination, rejection, isolation, verbal and physical abuse. The responses obtained from the interviews and FGD describe the serious repercussions of coming out, wherein LGB experience negative reactions including being disowned by their families, facing violence, or shame. "In Ethiopia, everyone perceives this thing [same sex sexual relation] as something outrageous. … People's perception forces us to hide and live in frustration. … But since we can do nothing about it, we are just living it, if we call this living", FGD informant 2. "… the idea of mingling with other people feels like death to us. It's only amongst ourselves that we socialize. Whenever we socialize with other people, there is stigma, discrimination and stern faces. The fear of this has forced us to be segregated in great numbers in one place; hidden. … The attempt to socialize with the society by itself feels like a great struggle." FGD informant 5. As one FGD participant noted, the media reinforces stigma and discrimination against LGB community. "All written documents [on media outlets] are negative about the 'Zega' 1 [LGB] community. Nothing positive is being written and community has negative attitude about the 'Zega' community." FGD informant 1. The quantitative and qualitative data show that many LGB were adamant that they would not consider coming out in the current social context, and they live under acute anxiety and fear of being exposed or bringing shame and humiliation to themselves or their families. "I haven't told anyone and I am not willing to do so. … if you tell one person that person would tell another and before you know it everyone will know about it. … I worry about my family. I don't want people to point fingers at my parents and say his or her son is that way or this way." 30 years old interviewee. "If my family knows, … I think they would throw me out of the house … I would lose them forever; and my family means everything to me." 23 years old interviewee --- Risky sexual practices and risk perception The LGB in the survey rated their risk of HIV infection to be predominantly high. Six in ten respondents rated their level of risk to be 5 and above . The vast majority of the respondents also perceive LGB community to be more vulnerable to HIV/AIDS infection than the general community. 2 Close to three-quarters of the LGB reported to having had unprotected anal sex. The reluctance to use protection and the underlying reasons are further highlighted in the qualitative responses, as narrated by the two research participants below. 'I have had unprotected sexual relationship with two of my friends who died of AIDS. It's like a loop and many people have somehow been sexually connected.' 23 years old interviewee. 'Because I have had lots of unprotected sex previously, I don't see the use to start [using condom] now and I might already be [HIV] positive.' 32 years old interviewee. Fourteen percent of the LGB reported to be in committed monogamous relationship. The results for the various groups were 15.0% gays, 6 discrimination, it is significant that 14% of LGB were in a committed same sex monogamous relation. According to participants of the qualitative research, while the practice of having multiple sex partners was common among LGB, maintaining a committed relationship was perceived to be very hard. The responses imply that some LGB have accepted the inevitability of contracting HIV/AIDS due to their exposure to multiple partners and risky sexual practices. A 25 years old interviewee noted: "I do not think I will be shocked if I am told that I'm HIV positive. I know what I had done and my practices. Whenever I go for testing I go with the notion that the virus is in me," Some participants implied that what contributed to unsafe sexual practice among LGB is the lack of safe social space for same sex sexual relation, and the pressure to make the most of chance encounters. 'I have multiple sex partners. I don't know why but when people meet and are attracted to each other, there is no problem or worry to have sex. The act doesn't bother us that much. Actually, what worries us much more than having sex is where to do it.' 25 years old interviewee. --- Accessing and using condoms and lubricants About three-in-ten respondents reported to use condom consistently. The rest indicated using occasionally and not at all . The qualitative data illuminate the reasons for inconsistent condom use, which include fear and shame associated with buying condoms, sense of urgency and lack of preparedness, being under the influence of alcohol, preference to have sex without condom with the intent to improve satisfaction, or selective non-use of condom with supposedly 'safe or trusted' partners. The following quotes reflect the range of reported reasons for unprotected sex: 'Sometimes my mates are not willing to use condom; they just don't like it. ' The qualitative interviews reveal further information in relation to what type of lubricant participants use. Many claim that due to the difficulty of accessing water based lubricants, they resort to using easily accessible oil based lubricants, which may damage the condom. According to some respondents, even in instances when water based lubricants were available in selected pharmacies, marketed for the general population, LGB still shun buying them for fear of giving away their sexual identity, and possible negative reactions. A few LGB stated getting the lubricants from LGB peers that travel abroad. 'Even when they were selling lubricants in pharmacies, many [LGB] preferred to ask people to bring us some from abroad. They were not comfortable to buy from pharmacies because the looks and reactions you get from the pharmacists was scary.' 30 years old interviewee. The above quote shows the negative reactions of pharmacists deters LGB from accessing lubricants. Thus, accessing lubricants was found to be safer and possible mainly through networks of peers who travel abroad, or who informally work with certain embassies in the city around. The response below directly relates to this point: 'I personally get lubricants from friends. I have friends who get lubricants from embassies. They work on health related matters regarding men.' 25 years old interviewee. The FGD participants similarly noted the difficulty of buying lubricants from pharmacy, and suggested the relative ease of accessing these products in events organized secretly by LGB. --- STIs/HIV testing Three in ten respondents reported contracting Sexually Transmitted Infections in the past. The figures vary across the different groups: 33.9% of gays, 23.5% of bisexuals, and 25% of lesbians. Testing for HIV was reported to be quite common, cited by 82.8% of the respondents though responses to such questions are likely to be socially desirable. Fear of positive diagnosis was cited by LGB that reported not doing the tests. The qualitative study found two contrasting findings with respect to testing practice for STI and HIV. Some LGB reported that with growing recognition of their risky sexual practices, they are anxious and get tested regularly, while others reported being too anxious to get tested. 'I have been infected with STDs two three times previously. I was very scared, especially the first time. I thought I was also infected with HIV. … I do get tested for HIV every three months. ' In the focus group discussion, participants noted the importance of peer support in dealing with sexual health problems, wherein they exchanged advice about STI treatment or coping with mental health issues, information about access to treatment, condoms or lubricants. 'If I experience some anal infection, I will ask my friends for any advice. Some of them often recommend [using] hot water mixed with salt etc. … Mostly we use traditional medicines.' FGD informant 2. 'We only ask tips from each other: 'what do you do for this and that?' , 'what do you use to get rid of this and that?' …No one wants to go to a health facility' FGD informant 1. --- Mental health, substance abuse and risk behaviours LGB's mental health need in the context of risky sexual practices has emerged as one of the more significant themes in this study, particularly in the qualitative data, wherein mental health was perceived as a major health needs among LGB. Quantitative data show that some LGB experienced depression and stress . The other reported mental health problems include anxiety and panic attacks , self-harm , eating disorder , and suicidal ideation . The qualitative data highlight lack of care to address the mental health problems, and negative implications. Data also illuminate that the mental health problems LGB experience are related to external stigma and discrimination, real or anticipated, and internalized stigma, as noted by the following participants. 'Even if I always think and enjoy my sexuality, sometimes I feel like I'm wrong and abnormal and it stresses me.' 20 years old survey respondent. 'Sometimes I have suicidal thoughts due to chronic stress.' 26 years old survey respondent. 'Even when someone stares at us we automatically suspect that he/she might know us. … The stress is so heavy to the extent that some of our friends have lost their mind forever and ended up on the street.' FGD informant 7. 'The major reason why HIV is more rampant in our [LGB] society than others, in my opinion, is carelessness. And this carelessness comes from the value the society gives to us. … we face stigma and discrimination over and over again and experience stress, frustration and mental illness.' FGD informant 5. The above qualitative responses suggest the link between risky sexual practice and mental health. Depression was reportedly caused by social stigma and not being allowed to live openly. LGB reported to deal with mental health issues such as depression, by indulging in alcohol, Khat, or cigarette use. The survey data show wide use of alcohol, Khat and Cigarettes among LGB . As the above table shows, alcohol was the most used by the group , followed by Khat and cigarettes . A small group of LGB also reported using non-prescription drugs . There were differences in drug use practice among participants, with chewing Khat and drinking alcohol less common among women than men. The survey data does not indicate whether participants misuse or excessively use these items, which are all legal in Ethiopia. The qualitative data, however, suggest the link between excessive use of alcohol and unprotected sex among LGB. Statements such as 'We were both drunk and had sex without condom' or 'Most of the time I have sex after I get drunk, and I forget protection' were not exceptional among informants. --- Health care seeking behaviour, health service utilization and barriers Only 35.5% of the respondents reported that they are always motivated to seek care when they are not feeling well. Differences exist among the different groups, bisexuals , followed by gays and lesbians . A significant proportion of the respondents stated that they are only motivated sometimes, and reported not being consistent in their health care seeking behaviour due to fear of homophobic reaction , confidentiality concerns , or fear of being stigmatized . The table above depicts that fear of stigma and discrimination was the most reported barrier, cited by 82.8% of the survey participants. Being ashamed or embarrassed to seek service was equally the most reported constraint, mentioned by 82.8% of the LGB survey participants. This was corroborated in the qualitative data. --- 'I didn't go to the doctor because what am I going to say? There is no one who would treat you if you said this [anal infection] happened when you were having sex. So you stay home tolerating the pain.' 23 years old interviewee. For the majority of the LGB in the survey fear of being discovered/outed was a hurdle to access health care when they are sick or when they seek medical advice or treatment. The responses in the qualitative data shed light about the ambivalence LGB face towards being present in public spaces, or being open about their sexuality to health professionals. '[The] fear of stigma and homophobic reactions … is paralyzing. … Our society doesn't hold back from throwing homophobic slurs purely based on the way you walk, talk or dress. Imagine how terrifying it would be to face a health professional when you have an [anal] infection that would automatically expose your sexual orientation.' 30 years old interviewee. Lack of convenience at the health facilities was mentioned by close to half the LGB survey participants as a constraint to access health care when they are sick or seek medical advice or treatment. Responses from the in-depth interviewees also reiterated the same: In the event of sexual health problem, LGB stated that they seek support mainly from friends , followed by public health facilities , private health facilities , public pharmacies , private pharmacies , or holy water/traditional healer . Only one in ten of the LGB consider the services to be convenient or LGB friendly, while it is the opposite for the rest. Those with the positive review claimed that they are content as long as they are able to get the services. ' … The qualitative interviews shed further insight about LGB's preference as to where they access health services, which include convenience and ease of concealing sexual identity. Their notion of convenience seems to be linked with the risk of being outed or being obliged to disclose their sexual practice. 'I think public health facilities are better. They see and treat a lot of people every day and they do not pay that much attention to their patients. That will give you the chance to be unnoticed. But private health facilities pay too much attention and they are more concerned about their image and the centre's reputation.' 25 years old interviewee. 'Public health care providers don't have time to ask for details. So that's very convenient.' 28 years old survey respondent. Getting money needed for treatment was another challenge to access health services according to about onefifth of the participants . Financial challenges among the LGB were also linked with unemployment and mental health problems. In the qualitative interviews, participants mentioned sense of comradeship among LGB during times of crisis. 'We have had to raise money so that some people could get medical treatment. There are many people [LGB] who are addicted [khat, alcohol, cigarette] and don't work. Others are incapable of working because of mental health issues.' 30 years old interviewee. Distance to health facility was reported as a barrier to access health by relatively smaller proportion of the survey participants 17.2% . In the qualitative data some LGB reported choosing to seek health care outside their community to avoid being recognized or exposed. This has transport cost implications, which may vary depending on distance to target health facility and whether they access service in private or public health facilities. The above analysis shows that health seeking behaviour intersects with the LGB's geographic location, financial capacity and a number of other attributes. The qualitative data further suggest that social networking, which seems to emerge from or enabled by financial or educational capacity, provides leverage to some LGB to access treatment, in the form of having information or being referred by LGB peers to a friendly health care professionals. Of all the barriers mentioned by LGB, the negative attitude of health care professionals was emphasized as a significant hindrance to access health care services. Some of the responses from the interviews and FGD shed light on how LGB experience health facilities as discriminatory spaces. 'I know people who had STDs from behind [anal] and when they go to health facilities they were surrounded by all the nurses and doctors and they were humiliated.' 30 years old interviewee. A closer look on relation the LGB participants had with health care professionals show that only 14.0% of the LGB claim to be open about their sexuality with health care providers . The remaining vast majority 86% emphasized that they conceal their sexuality. The later group cited multiple reasons including fear of homophobic reaction , fear of being stigmatized , confidentiality concerns , and past negative experiences . The qualitative data also show that LGB dread getting questions about their sexuality from health care providers, and reported that when confronted with such questions they often deny or leave the facility altogether without getting service. The following excerpts illuminate these encounters. 'I once told the doctor that I am gay then he started advising me to stop [same sex relation] then I said [to him] I can't. Finally, he told me it is useless to treat me.' 20 years old survey respondent. 'Once I went to see a doctor and as I was explaining my symptoms, he suspected that I was gay and he told me that they don't provide service.' 24 years old survey respondent. 'There is a … doctor who knows that I am gay and very friendly and when I went to the health centre where he works, the nurse told me he was not there when he was there.' 23 years old survey respondent. The qualitative results show that due to the heteronormative context the aforementioned access barriers seem to be more pronounced among LGB that have receptive anal intercourse, and experience anal fissures or STI of the anus and rectum. The barriers were reported to be less pronounced for men that have insertive anal intercourse and experience STI around their penis. The barriers are manageable for the later group that practice insertive intercourse, as they can explain away their situation by suggesting that they get the infection through heterosexual relation, from female sex workers or girlfriends: 'I went to a health centre and saw a doctor. … He then told me it is STI and I need to bring my girlfriend. Then I told him … she is a sex worker and I don't know her. … The doctors don't have any means to know from whom you got the infection. You just tell them it's with a woman.' 25 years old interviewee. In contrast, for those who had anal infections due to receptive intercourse, seeking treatment from health professionals is a daunting challenge. They evade questions about sexual practice or make up false reasons, or even leave health facility without treatment in the event that they feel health care providers are suspicious. The excerpts below demonstrate such experiences of participants. 'Anyone could get STDs. But this one [anal infection] is internal that is supposedly caused by this [receptive anal intercourse] alone. … To avoid getting help from them [medical professionals], many die hiding in their homes.' FGD informant 4. 'I once went to private hospital … the doctor did some tests. Then he said that I had intestinal infection, and he asked me whether I lifted heavy objects or did strenuous activities, I said that I didn't …. Then he continued asking me ' … .or are you … .' At that time, I got up and left the room without any medicine fearing the words he was about to say.' FGD respondent 6. ' … We usually face various infections on the intestine … Since there is no adequate medical care, and since there is no way to go openly into a medical institute to get help, the conditions will gradually complicate and lead to death. So people just sit around and wait …. ' FGD respondent 8. One 25 years old male interviewee reported being raped, 'I told him [the doctor] that I went to a party and I got drunk and this happened [rape]. Another informant presented the following made up story: 'I had a tearing while having sex and had to see a doctor. When the doctor asked me what happened, I told him that I had an accident -"a chair broke and the metal leg hit me on that spot [anus]." … He believed me and didn't ask me any further questions. I got treated and left.' 23 years old interviewee. Another significant theme emerging from the qualitative data is that while concealing the causes of one's illness from health care professionals helps LGB avoid stigma, shame and discrimination; it, however, led to misdiagnosis of their condition by health professionals, and possible complication. 'I could not tell them the real reason so they told me I have another disease. They said it was typhoid or typhus but I knew what happened to me. But I took the medicine they prescribed for me. I took it for a while and stopped. After that I stopped having sex for a long time. I was very sick, ' 23 years old interviewee. The qualitative data also highlight experiences of LGB wherein the health professionals despite being aware of same sex sexual practice leading to the health problem, they go about caring for the LGB without any judgment. 'I know of a friend who had a lesion around his anus. There was bleeding. He said he went to the doctor and … said it was haemorrhoids. The doctor could tell it was not [haemorrhoids] and told him … it was caused by something forceful. He asked him if he was raped. He replied he was not raped then the doctor said if you were not forcefully raped that means you did it willingly. The doctor did not make a big deal out of it and treated him after all.' 25 years old interviewee. These were the kinds of health professionals that few LGB previously consider friendly and recommend to peers in their social network to visit for treatment. --- Discussion We believe that the study contributes to understanding of the diversity in the experiences, needs and risk behaviour of LGB in Ethiopia. Drawing insights from intersectional approach, the research attempts to shed light on two recurring themes in the data: heterogeneity of LGB health needs and risk behaviours, and heteronormativity of health services. --- Heterogeneity of LGB health needs and risk behaviours LGB do not have a homogeneous experience when it comes to discrimination, stigma, and prejudice. This was evident in our analysis that many LGB research participants reported varying experiences; particularly with respect to sexual and mental health needs and access and uptake of health services. The intersecting factors that gave rise to heterogeneity of experiences include nature of health complication, financial capacity, educational status, and social network. Health complications related to anal infections generate a great sense of stigma, internal and external. LGB experiencing such infection find it hard to seek or access proper treatment, and often end up being misdiagnosed or using traditional/alternative treatment. This is alarming considering the high prevalence of unprotected anal sex reported among LGB participants . Studies on MSM in Addis Ababa noted the great sense of stigma surrounding anal sex and the absence of any health information or services. The studies contend that interventions that recognize diversity of sexual practices and identities are long overdue and imperative to avert the multifaceted implications of denial and neglect of such at-risk and marginalised group [7,11]. Our study demonstrates that financial privilege and social capital give LGB leverage to navigate access barriers to condoms, lubricants, and health treatment. LGB who travel abroad, or have links with international agencies had better access to lubricants and condoms, which they share with peers in their social network. The study shows that LGB experience multiple mental health problems living under strict social scrutiny and fear of being outed or bringing shame and humiliation to themselves or their families. Sense of shame or stigma in the event of being exposed is so strong that a few LGB mentioned ideation of suicide and fleeing. This has resonance with previous studies [3,21,22] that established how stigma and discrimination, perceived or real, that is closely associated with being LGB take their toll on the mental health of members of this group. Mayer noted 'Mental health disorders are not inherent to being a sexual minority person but can manifest as a result of leading marginalized lives, enduring the stress of hiding one's sexuality, or facing verbal, emotional, or physical abuse from intolerant family members and communities.' [3], p., 991. Describing the way internalized stigma operates, Meyer stated ' … even if one's minority status is successfully concealed, lesbians and gay men may be harmed by directing negative social values toward the self.' [21], p., 14. Stahlman et al. also argued 'Social stigma is common among men who have sex with men across Sub-Saharan Africa, and may influence risks for HIV and sexually transmitted infections via its association with depression' [22], p., 1460. A study in Ethiopia entitled 'Heteronormativity and "troubled" masculinities among men who have sex with men in Addis Ababa, ' found widespread and deep dissatisfactions among the group about their sexual identity spurred by the sense of transgressing long standing societal norms [23]. Our analysis shows prevalence of mental health conditions among LGB closely related with their sexuality, and for which they have not received any professional care or advice. The results also show that LGB's experience of mental health problems depends on their social network and support they receive. LGB rely on peer social groups for social, financial and emotional support. Despite the class difference, none of the research participants mentioned seeking mental health services. This mirrors the state of mental health issues and mental health care services in the county, which is insignificant considering the staggering magnitude of the problem. The country's mental health strategy corroborates that 'mental illness is the leading non-communicable disorder in terms of burden. … [Evidence suggests that] mental illnesses have been overlooked as a major health priority in Ethiopia and other Low and Middle Income Countries , and underscore the need for public health programs targeting mental illnesses' [24], p., 9. It is safe to argue that the widespread misperception and stigma associated with mental health in the country intersects with sexuality to further marginalise LGB from accessing mental health service. --- Heteronormativity of health care services Ethiopia is one of the countries in Africa that criminalise homosexuality. This entrenches the notion that sexual identity and performances are within the parameters of heterosexual identity. The moral discourse around family and relationships are also encapsulated within heterosexual values and beliefs in Addis Ababa, unpublished) [7,11,23]. This study clearly shows that heteronormative beliefs and values are ingrained in the health system of Ethiopia at various levels. This aligns well with a growing recognition of health systems in the literature as social constructs themselves wherein societal norms mediate attitude and practices of policy makers, patients, and health care providers, and health outcomes in Addis Ababa, unpublished) [25,26]. This was apparent in this study that heteronormativity greatly influences perception and behaviour of both LGB and health care providers. Participants are reluctant to disclose their sexuality when accessing health services because of the widely prevalent heteronormative social values. LGB participants expressed their mistrust towards health professionals, whom they found or expect to be judgmental, discriminatory, and insensitive. Literature depict that trust is an issue even in contexts where same sex relation is legal and services are available [27] and LGB 'continue to interact with a health care system that is unaware, insensitive, and unprepared to meet their needs' [3], p., 992. Globally, a review of literature highlights wide prevalence of heteronormativity among health care professionals, wherein they tend to assume their clients to be heterosexuals, or if they suspect about their homosexuality, then they tend to engage with them in terms of their sexuality, disregarding their many other needs [15]. A qualitative study on GPs in UK found that homophobic attitudes and lack of awareness about sexual practice of LGB inhibited health professionals from discussing sexual health issues [28]. The situation is bound to be far worse in Ethiopian context, and represents missed opportunity for testing, and linking to care. It was evident in the study that embedded in a context that considers same sex sexual practice as a deviant behaviour in the society, and heterosexuality as a normal behaviour, LGB with sexual health problems compromise and hide their identity to access medical attention from the health care professionals. Previous studies found that stigma and discrimination, actual or imagined, permeate the lives of sexual minorities and negatively influence their use of health services [3,8,29,30]. As argued by our informants, the lack of transparent communication between LGB patients and health care professionals has led to misdiagnosis of illness, and lack of treatment. This is a significant result demonstrating the multiple layers and facets of the challenges facing LGB. Report by Mayer et al. found similar negative patterns in relationship between MSM and health care professionals. 'LGBT patients have multiple reasons for not disclosing their sexual or gender identity to providers … [to] the extent that these concerns cause LGBT patients to delay receipt of care or withhold information that may be important to treatment, effective medical care can be compromised.' . --- Limitations We acknowledge that the findings from this study, while they help advance understanding of the experiences of LGB, they are not representative of the experiences of LGB across the country. This has to do with the way participants were selected, the geographical focus on Addis Ababa, and the limits that we were only able to include LGB that were privy to the networks we managed to access. Furthermore, we are using LGB as an identity of sexual minorities and acknowledge that the research has not deeply engaged with Lesbians and it did not include transgender and intersex people because of difficulty of accessing them. The study is confined to exploring contextual realities of LGB community in Ethiopia mainly with respect to health seeking behaviour, and has not addressed the totality of LGB experience and the nuanced impact stigma and criminalization have on other spheres of their lives. The authors are two Ethiopian heterosexual men with public health and social science background. The first author has done extensive work on MSM over the years. Being raised and lived in a conservative and heteronormative country such as Ethiopia, where LGB are hardly visible, we acknowledge the limits of our understanding of the experiences of LGB. We recognise that our positionality as researchers might generate a power dynamic that influence the richness of the research and ability to unpack multi-layered socio-political issues. The strength of this article is that we used insights from intersectionality approach to explore and unpack disadvantages and privileges, and illuminate differences in the lived experiences within and across categories of study participants [13][14][15][16] and the factors that affect access and utilization of health care. --- Conclusion Social and legal strictures against homosexuality coupled with widespread heteronormativity in the health system make LGB one of the most marginalized at risk groups in Ethiopia. Differences in LGB's social position result in heterogeneity of risk, diversity of sexual and mental health needs, or difference in coping mechanisms . The multiple mutually reinforcing barriers LGB face to access health services demonstrate the need for concerted action, and importance of addressing the underlying challenges posed by heteronormativity in the health system and among health care professionals and LGB. The main implication of the study is the need to recognize the existence of LGB and their diverse sexual and mental health needs, and link them to appropriate health care and pyscho-social services including HIV/ AIDS prevention and treatment. We hope that the paper lays the ground for other studies to further explore LGB communities' lived experiences. --- Endnotes 1 The Amharic term 'Zega' translates to 'citizen'. It is commonly used among the LGB population to covertly refer to themselves, and has a positive connotation in contrast to several other local terms that are pejorative. The term further got popularity through being used as a handle/hashtag among Ethiopian LGB in the social media. 2 According to the HIV Prevention in Ethiopia National Road Map 2018-2020 report, "Seven out of the nine regional states and two city administrations have HIV prevalence above 1%. Prevalence in Addis Ababa is 3.4%. In 2017, there were an estimated 613,000 people living with HIV, of whom 62% female." [20], p., 4 the task with high level of diligence and integrity. We would also like to express our appreciation to the inspirational leader and Principal Investigator of Political Determinants of Sexual and Reproductive Health project, Professor Siri Gloppen. --- --- --- Funding We would like to thank the Norwegian Research Council for funding the project on "Political Determinants of Sexual and Reproductive Health: Criminalization, Health Impacts and Game Changers" [grant ID: 248159] of which this study is part. --- --- --- Competing interests The authors declare no competing interest. ---

Background: Studies show that sexual and gender minorities have unique health care needs and encounter complicated problems to access health services. Drawing on the intersectionality approach, this paper examines the intersecting factors that determine health care seeking behaviour and utilization of health care services among Lesbians, Gays and Bisexuals (LGB) in Ethiopia including the diversity in experiences of these determinants and differences in the coping mechanisms to navigate these challenges within the LGB group. Despite the importance, there remains a paucity of evidence on the topic in Ethiopia. Methods: A concurrent mixed method design was used including survey of 100 LGB, and in-depth interviews and an FGD with 10 and 8 participants, each respectively. The quantitative data was analysed using descriptive statistics. Qualitative data was analysed thematically and triangulated with quantitative data.The results show that heteronormativity intersects with LGB's social position (sexual identity, social network and class) to influence health care need, health seeking behaviour or access to health services. Sexual health and mental health problems are main concerns of LGB, who reported to live under acute anxiety and fear of being exposed, or bringing shame and humiliation to themselves or their families. One of the main emerging themes from the research is the link between mental health and risky sexual practices. Risk perception to HIV was high among LGB, with two-thirds reporting high risk. Only 37.5% (33/88) stated being always motivated to seek care when sick and the rest cited the following barriers that stifled their health seeking behaviour and utilization of health care services: Stigma and discrimination (83%), shame and embarrassment (83%), fear of being discovered (78%), lack of LGB friendly services (45%), affordability (18%), distance (17%), and health care professional refusal (10%). Conclusion: Homophobia and criminalization of homosexuality, and heteronormativity of health care services intersect with LGB's social position resulting in heterogeneity of risk, diversity of sexual and mental health needs, and difference in coping mechanisms (disadvantages and privilege). The main implication of the study is the need to recognize the existence of LGB and their diverse sexual and mental health needs, and link them to appropriate health care and pyscho-social services including HIV/AIDS prevention and treatment.

Introduction The article reports the findings of a study that is part of a larger project on learning how to become old. One of the subcategories that emerged during the analysis concerns embodiment. Embodiment is a category that contains both a component of the body as a typical physical object, and the body as a conscious subject that experiences itself. In other words, the body can be simultaneously observed and observing, experienced and experiencing, feeling and aware of sensations . The article aims to show embodiment according to four areas of the agency. Specialized literature points out that embodiment is a source as well as an instrument of cognition . Depending on a person's general physical condition, health, or illness, strategies, actions, and attitudes toward one's body differ. These differences can be grasped by looking at embodiment across four analytical areas of the agency, which I write about later in the article. --- Methodology The research is rooted in a constructionist paradigm and grounded theory methodology . They assume that the researcher's work is informed by their previous knowledge and perspective, which influences the construction of research categories and theories. The data and the categories or theory are derivative of the researcher's decisions, the perspective he or she uses, his or her previous experiences, or his or her positioning in a given scientific discourse . The following research question was posed: How do the participants' strategies, actions, and attitudes toward their embodiment differ across different areas of agency? In order to collect the research material, the semi-structured interview technique was used . The study was conducted between 2017 and 2019 in Lodz and selected villages in the province of Lodz. Following the recommendations of the grounded theory methodology, systematic data analysis was conducted simultaneously during data collection . The participants were informed about the purpose of the research and consented to record the interviews and their use in a scholarly publication. The empirical material consisted of 37 interviews with people over 70 . The transcriptions were imported into NVivo11, and the analysis procedure was performed according to the steps of the grounded theory methodology. Subsequent cases were selected on the basis of current analytical findings, and this selection continued until theoretical saturation of the generated categories was reached. --- Embodiment across four areas of an elderly person's agency There are a number of studies on the agency . This concept is understood in the context of the individual and refers to the ability/capacity to perform a given action, or a given thing, which implies having the power to influence . In other words, what happened would not have happened if someone had not intervened . This is how human subjectivity, understood as a sense of control and influence over the environment, is manifested . In constructionist research, priority is placed on the subjects' meanings of their own lives and experiences. Therefore, there are some difficulties in looking at the empirical material obtained from the angle of the existing body of gerontological literature. The literature mentions normal aging, successful aging, pathological aging , beautiful aging , and ugly aging . The vast majority of these names are value-laden. Therefore, new categories appear in this article, which shows the processes that emerge from the data analysis differently. A number of topics focusing on the transience of human life and strongly linked to involuntary physical changes can be found in the interviewees' statements. The narrators are aware of the Marcin Muszyński adverse changes in their bodies in old age and the decline in vitality at the root of their ability to function. Therefore, they undertake various activities to transform, sustain, restore, or accept their agency. Their actions and activities involve not only the area of embodiment but also many other spheres directly unrelated to it. This process can be viewed as a continuum where forces push a person into dependence on one side and independence on the other . Both forces are associated with the individual's current and earlier decisions, their biography, their social standing and capital, their material resources, etc., with the important exception that the gradual descent into dependence is additionally conditioned by forces independent of the individual. Diagram1. Four fields of human agency in old age Source: own elaboration. These include the universal law of body aging, the finality of human existence, and bodily demise. Hence, the late adulthood period is constant work of trying to take the best possible position on the continuum at any given time. Thus, considering the possibilities and scope of the individual's agency, it was necessary to find other terms that would not divide the subjects in an evaluative way and, secondly, would show the variety of their experiences within specific categories. Therefore, this article will refer to four areas of human agency in which embodiment is expressed differently. --- Transformed and extended the field of agency In the transformed and extended field of agency, an older adult, despite having crossed the conventional limit of old age, 1 enjoys relatively good health and vitality and engages in many new activities. He or she has a high degree of independence. Here, managing one's embodiment or subduing it is firmly documented. By owning one's body exclusively, a person becomes its creator and material. This manifest among young people through changes in appearance, like body adornment or plastic surgery. Such metamorphoses are encouraged by new technologies, among other things. On the other hand, the body in old age does not so easily undergo modifications. An older adult, like younger generations, undertakes work on his or her body, which goes far beyond mere hygiene. The body is consciously reworked, improved, beautified, and controlled. In this study, we recorded such practices of disciplining the body as watching what a person eats, seeking advice from a nutritionist, doing weight-loss exercises, improving one's fitness and figure, or going to the swimming pool or the gym. The participants also mentioned a whole range of beautification and age-masking activities. This includes makeup, Botox injections, hair dyes, tattooing eyebrows, visiting a beauty salon, and dressing fashionably. I am young still. I'm as old as a fifty-year-old. If only judging by my clothes . In old age, there can be tension between an individual's appearance, embodiment, physiognomy, and functional capabilities, and the inner sense of self-identity and subjective experience of self . Therefore, an older person may strive to blur these differences, which will involve working on one's body and disciplining and transforming it. Their body is then subjected to various diets and fed with nutrients or supplements. An extreme example of transforming one's body is various types of plastic surgery, especially those without medical justification. In old age, this can mean a whole range of cosmetic procedures through which both women and men can improve their appearance. These include facelifts, wrinkle fillers, abdominal plastic surgery, botox or breast augmentation. Disciplining the body in old age can also be done by working out at the gym. I started going to the gym there. I would go there to exercise and I did rather light exercises, because well, not all exercises can be done, but it suited me very much. I was going there for a whole year. And also I went to a nutritionist to lose weight. And then I started to feel and function quite differently . In modern societies, the body falls under the sphere of power; specifically biopower disciplining embodiment by prescribing patterns of appearance and behavior, controlling births, forcing medical treatment, restricting or prohibiting abortion, and setting the age of sexual initiation, etc. . The discourse of disciplining the body can be internalized. However, despite external pressures from relatives and friends of similar age, not everyone in the generation of older adults succumbs to this type of narrative. --- Sustained field of agency In the sustained field of agency, an individual may also have good health, or his or her health can be so satisfactory that he or she can rely on solutions and patterns of activity from earlier stages of life. Individuals in this agency field have a surplus of energy associated with retirement. They undertake activities to stay as fit as possible. Their goal Marcin Muszyński is a sense of continuity, i.e., keeping something, like fitness and health, to be disrupted. Therefore, they have a strong need to maintain their current fitness levels. This delays the process of physical aging. These activities are primarily preventive. They can be divided into those where the individual makes efforts on their own to maintain their fitness and where professional medical assistance is involved. In the first case, this can be walking, daily gymnastics, exercises to improve concentration, motor skills or memory, but this can also be healthy eating. I used to go biking or walking in the woods with my friends, because I live close to it. I live [near -note M.M.] the forest . The second group includes preventive measures requiring regular health monitoring, examinations, or periodic hospital visits. Here, the presence of specialists is required to confirm the current state of health of the subjects. Sometimes they issue a referral for a spa treatment, which is very popular among the participants. Some treat it as an essential part of rehabilitation after a procedure, such as orthopedic surgery, and others as part of a vacation trip to improve their health. We go to the health spa every three, every two years, depending on if they let me. But I can't find out the information when I will get it, because this year I should get to the sanatorium, but whenever I go on the Internet, it says that there is no such enrollment . --- Shrinking field of agency In the shrinking field of agency, the individual begins to notice a deterioration of their overall physical condition and a loss of vitality. The main difference between the previously discussed fields is that it is challenging to identify spectacular changes associated with searching for new activities or returning to old passions. To a large extent, older adults' activities are determined by their daily rhythm of simple activities and tasks, such as shopping, preparing and eating meals, and passive leisure pursuits. The subjects commented on the processes that limit their ability to use their bodies as they did until recently. At first, this process is imperceptible. Deterioration occurs gradually, and it is difficult for the participants to identify a moment marking the peak of their physical capabilities. The physical aging process is asymptomatic for the individual up to a certain point. The worsening health and all that is associated with it is externalized in limited fitness and mobility, a decline in the quality of sleep, loss of good eyesight and hearing, rapid visual fatigue, the onset of pains, teeth falling out, prolonged reaction time to stimuli, the need for lengthy rest, the appearance of various physical ailments, bodily frailty, slowed movements, memory problems, difficulties in self-care activities, clumsiness, sluggishness, fainting, and numbness. Participants point to a general decline in physical and vital strength, cited as one factor contributing to the perception of oneself as an older adult. There are times when I can't put my socks on because it hurts here, it hurts there . The perception of deteriorating health and the awareness and observation of one's physical decline appears especially among the oldest people surveyed. They notice the adverse changes in physical functioning over relatively short intervals . These people have fresh memories of how they were doing until recently and realize that things are worse now. It is beginning to dawn on them that these changes are largely irreversible and affect all people in late adulthood. They begin to become aware that there is no possibility of improving their deteriorating health, as was the case at earlier stages of life. This is expressed in an attitude of "it doesn't get any better." Hence, they relativize and redefine what health in old age is. It is no longer the feeling of physical, mental and social well-being but primarily taking such a stance towards one's limitations that allows one to function relatively independently. Redefining what health is in old age allows them to lower the expectations associated with their daily functioning and also make one's capabilities more realistic. Well, health you know when you're 85 years old, how can you expect health . This can also keep older adults from becoming bitter about their various limitations and defining themselves in terms of inadequacy and lack. A relativized notion of health in old age can also be found among physician-geriatricians, which is expressed in the attitude that there is no cure for old age. --- Restored and appropriated field of agency In the restored and appropriated field of agency, the natural process of involuntary change becomes superimposed on diseases. This can be compared to overlapping layers giving different impressions of one's embodiment. In the first case, the individual is fully aware that he or she is in the restored field of agency, and this is due to the diseases that appeared before they entered late adulthood. The individual takes several measures to protect their health, improve their body, rehabilitate it, and rest. Often such people, while still of working age, experience physical ailments and illnesses that prevent them from working. One of the common steps then is to obtain a pension for total inability to work due to impairment of the body. Obtaining such legal certification allowed the participants to build their narrative around being a disability recipient or an ill person. The first diseases may also appear long before the conventional boundary of old age is crossed, but are overlooked, which is why such people are active professionally until the legal retirement age. They may complain of reduced physical and mental performance, which they usually explain by the normal aging process or the many years of fatigue in their professional work. At the same time, these are the first symptoms of the disease. Only after the disease has progressed from a latent to an overt phase, which can last for a long time, does the person or those around him begin to understand that they are sick. Another case is individuals who, after crossing the conventional threshold of old age, experience a decline in vitality and motor and mental performance that decreases with age, caused by universal developmental changes with the simultaneous appearance of various ailments and disease-causing conditions. This can make distinguishing Marcin Muszyński between the two processes difficult for an individual. When a disease that has not yet been diagnosed develops slowly, a person may experience two types of changes. The first first results from intentional activity, a deliberate way of creating a "self." This leads the person to say, "I am doing something." The second refers to internal body changes which are uncontrolled by the person and are most often expressed with the phrase "what is happening to me." My legs won't kneel, they won't do anything. This one in particular, nothing . It turns out that a person can lose control over his or her own body, which begins to have a life of its own. It does not submit to his or her will. Then a sense of alienation towards one's embodiment can appear, and anger towards the weakness of the body, which does not follow the owner's will. Some participants adapt to their new reality after receiving a diagnosis of their illness and taking some remedies. A new state of normalcy emerges. One gets used to it. So it has subsided, but I don't feel like going to the doctor anymore, because you know how these doctors are. And as I said I'm not going to go anymore. I'm not going to get treatment. Even if it gets worse . Participants also realize that diseases in old age are unlikely to go away and that they get worse, accompanied by a general decline in mobility. They know that things can get worse with each year, so they do not hold out much hope for improved health or better functioning in the future. They are aware that negative processes in old age accumulate, leading to dependence on others. They think about taking advantage of institutionalized help to avoid becoming a burden. If I was infirm and could no longer manage on my own, well there are nursing homes, and I would decide to go to a retirement home so as not to become a burden on my children . The last case under consideration is that of people who, having exceeded the conventional limit of old age, suddenly become ill or suffer from noticeable changes caused by disease. This can include heart attack, stroke, high blood pressure, cataracts, diabetes, blindness, orthopedic ailments, cancer, heart disease, hypertension, Alzheimer's, Parkinson's, and complications from the flu or COVID-19. Illness often becomes a caesura marking the transition from independence to dependence, and can be equated with the biographical onset of old age. Narrators struggling with an ailing body complain of pains and physical limitations that force them to withdraw from many of their previous activities. This causes them to slow down their rhythm of life. The patterns of activities established until now become disrupted. Uncontrollable, the body becomes alien to them. Depression, lowered mood, problems with concentration and memory, and many other detrimental changes appear. This is often accompanied by fear of infirmity, dependence, and what will come next. Moreover [this disease -note by M.M.] it bothers me, bothers me a little, because I can't write as much as I want to . Depending on the type of illness, treatment, and resources the older adult has, the lost field of agency can be restored fully or only partially In the first case, the person returns to the their former life in one of the agency fields In the second case, however, he or she loses some part of his or her independence. --- Conclusions and recommendations Embodiment in late adulthood can be viewed multi-dimensionally. The findings of this study make it possible to move away from a narrow understanding of old age only as a category associated with physical deterioration and bodily decay. The embodiment of an older adult in the four analytical areas can be inscribed into much broader structures that constitute macroscopic depictions of old age. This provides the context for the social perception of old age. Discourses, concepts, and theoretical knowledge of old age and aging exemplify them. Their summary can be found in Table 1. Firstly, the regime of youth demands that we look much younger than we are. The anti-aging industry, plastic surgery, and body adornment contribute to this. A person can also create his or her image in a virtual space. All these changes made to a person's embodiment significantly impact on identity formation in old age. The anti-aging industry, new technologies, and plastic surgery have brought the aging body under external scrutiny. Delaying the aging process by interfering with one's corporeality and leading an active lifestyle means that the time of middle adulthood associated with productivity, well-being, and the ability to achieve life goals can be stretched far beyond late adulthood. In the case of a shrinking field of agency, we are dealing with a process of withdrawal of the individual from social life, which means a reduction in the number of social interactions with others, a reduction in the amount of interaction with those with whom contact is maintained, and a change in the style of interaction resulting from the social roles of the elderly . This results from an awareness of the shortening life expectance and the inevitability of death, and thus one's own existence ending. The cause is the frailty and slow decay of the body where catabolic processes prevail over anabolic ones. This is compounded by negative stereotypes about old age, which contribute significantly to the peripheral social position of seniors. An older adult's appearance, health, and general fitness contribute mainly to this. --- Marcin Muszyński In contrast, when it comes to a restored and recaptured field of agency, we are dealing with remedial biomedicalization, where old age is understood in terms of disease as a defect in an organ, or body part that can be repaired, replaced or cured. This includes endoprostheses, pacemakers, and treatment of lung disease, diabetes, stroke, epilepsy, osteoarthritis, obesity, Alzheimer's disease, and Parkinson's disease. Treatment is carried out in the separation of the mind from the patient's body resulting in an excessive focus on the patient's embodiment while ignoring other dimensions of that person's being. The psychological, spiritual, cultural, and social aspects are completely ignored. A person is reduced to his or her body, which disintegrates into a series of dysfunctional parts that can be repaired and replaced . The above matrix and the areas of an older adult's agency open the door for further in-depth research not only on embodiment.

This article presents embodiment in relation to four areas of human agency. The findings are part of a larger project on learning to be old.The main research problem is understanding how strategies, actions, and attitudes toward one's body differ among the study participants in various agency areas. The study is based on a constructivist paradigm and grounded theory methodology.Four fields of the agency have been presented on a continuum, where on one side, forces are pushing a person towards dependence, while on the other side, there is the individual's independence. These areas were identified during the analysis of empirical data and allow for a departure from judgmental approaches to aging, serving as model areas for the functioning of an older adult . These areas were used to reflect on the embodiment of older people. Finally, the embodiment category was placed within broader structures such as discourses, concepts, and theoretical knowledge about aging and getting old.The findings indicate the multidimensional nature of the aging body. Different strategies, actions, and attitudes towards one's embodiment are activated depending on the individual's life situation and social position.Embodiment occupies a special place in learning to be old. It is one of the primary regulators of this process. As it turns out, self--identification is primarily related to the body. Furthermore, the findings of this study allow moving away from a narrow understanding of aging as physical deterioration and decay.

Introduction Today, 10% of the world's population lives in poverty, and access to basic needs such as education or health care is difficult. With the objective of responding to these needs, the United Nations has launched an action plan, proposing a set of sustainable development goals for nations to meet by 2030 [1]. These objectives include the eradication of poverty as a cause of other problems. It is of vital importance to consider the variables that can influence children's development and to investigate the effectiveness of various interventions. Since the outbreak of COVID-19, these goals have become even more urgent. The World Bank [2] estimated that approximately 365 million children, or 1 in 6 minors, lived in extreme poverty before the pandemic. With its worldwide economic consequences, the pandemic is expected to increase this number. In Spain, the general risk of poverty is 20.7%, and in the population under 16 years of age, it is 27.1%, according to the Survey of Living Conditions of 2019 [3]. The concept of poverty from a classical point of view is linked to economic inequality and refers only to the low-income population. However, in recent years, studies have indicated that this population presents mechanisms of marginalization in which other factors, in addition to economics, lead them to experience social exclusion [4]. Since the United Nations Development Program of 2016 [5], this new concept of poverty in which other dimensions are taken into account, has been named multidimensional poverty. Multidimensional poverty includes two main concepts: economic well-being, since the victims of this poverty do not have sufficiently high incomes to cover their needs, and social rights, since due to socioeconomic characteristics this population is vulnerable to deficiencies in food, education, housing or health [6]. In addition, the impact of poverty on the population is arduous, since it also implies exposure to risk factors resulting from environmental deficiencies [7]. Therefore, it is important to consider individual, environmental and cultural factors that affect this population [7]. Thus, the sphere of culture is considered from a transversal point of view, since it is a predictor of the social structure and, therefore, of the type of laws and economy of a place. These aspects influence the reality of families and determine their economic well-being, profession, health and education [8], aspects that contribute to the socioeconomic status of a family [9]. This theoretical construct is closely related to the adequate development of children, since family SES is a predictor of a child's physical, emotional and cognitive development. SES also influences the conditions to which minors are exposed. Bäckman and Nilsson [10] mention that the risk factors most commonly related to low income are violence, lack of stimulation, stress, lack of support, social exclusion and substance abuse [8]. In the case of minors, exposure to these factors affects development. This is because human development is governed not only by genetics but also by factors that stimulate it and are present in the family and social environment [11]. Thus, development is made possible by genes, limited by sensitive periods or maturation, and determined by environmental stimulation in early childhood [12]. Its evolution is multidimensional and multidirectional. Development of domains, such as cognitive, socioemotional and physical, will occur at a different life stage depending on the characteristics of individuals and their current environment and the one in which they grew up [11,12]. Cognitive domains are mental processes that allow us to carry out the activities of daily life. These domains help to receive, process and execute actions based on the information an individual has in that moment. Some of the cognitive domains are attention, memory, language, social cognition and executive functions [13,14]. Different studies affirm that cognitive development is dependent on family SES, since there is an affectation in the prefrontal lobe of the brain due to exposure to stress in the first years of life. General cognitive functions, such as language or emotional processes are located here, with executive functions such as working memory, cognitive flexibility and inhibition [15,16]. The areas most affected are usually those related to executive functions and language, as they are interrelated and have a longer maturation period [15]. It is considered that executive functions continue to mature during adolescence, and there have even been improvements in performance in complex tasks of inhibition and flexibility, which is in line with what we know about the physiological processes of maturation of the prefrontal cortex. This is mainly linked to executive functions, in which maturation is completed at approximately 25 years [11]. The importance of the impact of these individual and environmental deficits on human development has aroused interest in the field of neuroscience. The contemporary neuroscientific study of poverty proposes to identify certain aspects in relation to deficits modulated by risk factors. Researchers are attempting to determine in which periods of child development risk factors have a greater impact and how these influence the execution of tasks that require cognitive processing [17]. The objective of these studies is to highlight implications in the activation of neural and behavioural networks and potential interventions to help alleviate this phenomenon [17]. The purpose of many studies has been to verify whether stimulation in different dimensions of our mental functioning, such as executive functions, translates into an improvement in the school and social environment [18,19]. There are many studies that have tried to develop strategies to intervene with children and adolescents. Interventions focused on different disciplines have been found to improve academic performance. Specifically, studies have indicated that physical exercise [20,21], use of dietary supplements [22] or social skills training have a positive impact on cognitive abilities. For example, the program by Rickel [23] focuses on promoting the use of cognitive domains, such as language, or executive functions, such as decision-making, cognitive flexibility, attention or reasoning, with the objective of improving individuals' social cognition. Studies that promote the improvement of cognitive skills have focused on training to achieve a general improvement [24]. The meta-analysis by Karch et al. [25] analyses cognitive training programmes in children and adolescents to improve cognitive skills such as attention or memory and executive performance, as well as behaviour or psychopathology. The effects of cognitive training were found to be small on executive function and attention, but significant on memory, behaviour and psychopathology, with the latter standing out. Regarding the training of executive functions, there are studies that seek their improvement in general [26,27] or in specific functions such as inhibitory control, memory, planning or reasoning [28,29]. The results of the programs show significant improvements in reasoning [28], cognitive flexibility, planning, metacognition and inhibitory control [26,27] and in fluid reasoning and processing [24]. The study by Giovannetti et al. [29] showed inconclusive results but highlighted the importance of considering individual and contextual differences in interventions that seek to optimize executive functions in children. The value of cognitive training lies in its importance as an ideal element to stimulate brain plasticity. The brain maintains the ability to change throughout life, and systematic practice, such as cognitive training, is necessary for the establishment of new neural circuits and for the strengthening of synaptic connections between neurons. This capacity of the brain, known as cerebral plasticity, makes it possible to modify the morphology of neurons, which enables effective learning [14]. The objective of this systematic review is to identify and offer a synthesis of cognitive interventions in children and adolescents in Spain in which cognitive processes that have been compromised by the risk of social exclusion are trained. --- Materials and Methods --- Search Strategy The Cochrane handbook for Systematic Reviews of Interventions [30] was used to design the protocol and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols [31] was followed to describe the protocol. A first search was carried out on 8th November of 2021 in the Web of Science, and then the strategy was adapted to the following databases: PubMed, Medline, Dialnet, PsycINFO, PsycArticles, Psychology and Behavioral Sciences Collection and ERIC to obtain a large sample of interventions. --- Article Review After obtaining an adequate number of studies, the metadata for each were downloaded to a common Excel sheet. Duplicate results were eliminated, and the eligibility of each review was determined per the inclusion and exclusion criteria. --- Eligibility Criteria The following inclusion criteria were applied : studies written in English or Spanish in which the interventions were carried out with a Spanish population and of medium-low SES, aged 5 to 18 years, both inclusive, and interventions aimed at improving some cognitive domain or socioemotional or psychoeducational skills. Interventions delivered by psychologists, primary caregivers, teachers or qualified personnel were included. Studies with participants who showed specific performance deficiencies or behavioural problems were included. However, studies of specific interventions for any developmental disorder or physical disability were excluded. Studies that intervened only with participants of high or medium-high SES were excluded, but those who worked with a varied sample were included. There were no exclusion criteria regarding the date of the publication of the studies. --- Selection of Studies Once the inclusion and exclusion criteria were established, we reviewed each of the studies by title and abstract. A third author was responsible for intervening in doubtful cases. The reasons for exclusion were detailed on an Excel spreadsheet, and we finally obtained a sample of studies that would later be reviewed in full text for inclusion in the systematic review. --- Data Extraction Once the final sample was selected, a coding sheet was designed, taking the Patient, Intervention, Comparator and Outcome format as a reference. --- Data Analysis and Synthesis Through the systematization table, the information on each of the studies was qualitatively organized, and the data were compared to analyse them together to extract the relevant aspects regarding the chosen topic. --- Results --- Identification of Studies The application of the search equation in the different databases produced 1637 reports published in 1992 through 2022. After eliminating the duplicate articles, 1368 articles were added, and 2 more articles were found in a manual search. After reviewing the title and abstract, a total of 1349 articles were rejected for the reasons included in Table 1. Then, the full text of the remaining 11 articles was read . Children 2022, 9, 1306 5 of 17 --- Identification of Studies The application of the search equation in the different databases produced 1,637 reports published in 1992 through 2022. After eliminating the duplicate articles, 1,368 articles were added, and 2 more articles were found in a manual search. After reviewing the title and abstract, a total of 1349 articles were rejected for the reasons included in Table 1. Then, the full text of the remaining 11 articles was read . --- Characteristics of the Studies The information related to the selected studies is presented in Tables 2 and3. --- Characteristics of the Studies The information related to the selected studies is presented in Tables 2 and3. ) to studies with larger sample sizes . In the interventions chosen for the review, the age range of the sample varied between 5 and 20 years. A study with an age range of up to 20 years was chosen because the sample also included minors and it was not possible to separate participants from each other. Two types of populations were observed: one was childhood and early adolescence, with ages ranging from 5 to 12 [18,19,[33][34][35][36], and one was adolescence, with ages ranging from 13 to 20 [32,37]. The socioeconomic level of the study sample was low or medium-low. The study by Pozuelos-López [36] considered a varied sample in which a high socioeconomic level was also included. Only in one case, in the study by de la Morena [34], was the family context risky, and the participants were in social protection centres. Regarding the sample conditions, only the studies by Mata et al. [35], Pozuelos-López [36] and Sánchez-Pérez et al. [19] excluded participants with a history of chronic diseases, special needs or psychopathological diagnosis. --- Interventions Although all the included studies had the main objective of improving the cognitive performance of the participants, two types of subobjectives were differentiated to evaluate the effectiveness of this intervention through the improvements observed in the minors and to evaluate the improvement of their cognitive abilities. Regarding the type of interventions in the literature, there were cognitive training studies, computerized on two occasions with self-instruction or metacognitive training on another two and with gamification in another, and psychoeducational interventions. Through these trainings, the improvement of some cognitive dimensions was sought, such as social cognition, language, executive functions, decision-making, flexibility, working memory, inhibitory control, branching or multitasking, attention and planning or reasoning. In addition, the studies by Tellado [38] and Mata et al. [35] examined improvements in mathematical skills. The psychoeducational interventions in these studies were aimed at training and teaching the participants in a compensatory way, since they sought to solve problems derived from learning. The interventions provided the youth with resources to develop their skills in a way that allowed them to acquire knowledge autonomously; the interventions ensured the well-being of the individuals in the performance of day-to-day tasks. Regarding the format of the intervention, most studies applied interventions to subjects in groups . In the study by Sanz de Acedo and Iriarte [37], the group and individual format were combined; in the study by Pozuelos-López [36], the format was individual; and in the Sáiz-Manzanares and Román-Sánchez [18] study, this information is not available. Regarding the intervening agent, the studies are divided into external or internal agents. In cases where the agent was external , a professor from the centre provided complementary help in the training or evaluation of the participants. Regarding the rest, this information is not available. Seven of the studies intervened in the educational centre during school hours and only in one in the afternoon after school. The aim was to eliminate certain variables, such as those derived from a work environment different from the usual for participants. Regarding the duration of the intervention, the shortest was that of Pozuelos-López [36], and the longest was that of Sanz de Acedo and Iriarte [37], with 3 weeks and 9 months of duration, respectively. --- Comparison Regarding the design of the studies, quasi-experimental [33,35,37,38], longitudinal [19,34] and nonequivalent control group designs [18] were used. In two of the studies, this information was not available [32,36]. Regarding the timing of evaluations in the studies, all evaluated pretraining and posttraining dependent variables, but in some studies, an evaluation [19,38] and/or followup was added [18,34,38]. --- Outcomes In general, significant improvements are observed in trained cognitive functions, as the ones listed in the following subsections. --- Decision-Making In the studies of Mata et al. [35], Sanz de Acedo and Iriarte [37], and Sáiz-Manzanares and Román-Sánchez [18], in which decision-making was studied, the trained group demonstrated significant improvements compared with the untrained group with values of p = 0.0001; p < 0.001; and p = 0.0001, respectively. In the last study, these positive results are found in the follow-up measures. --- Planning Regarding executive function, [18] found significant differences in the planning measures of the training group with respect to the control group in the follow-up measures. In the study by Vita-Barrull et al. [33], they found a significant reduction in planning dysfunction compared with the time prior to the intervention . In this case, Tellado [38] trains this function in two groups obtaining good results for both, but significant improvement occurs in the group with the worst initial results , and better results were observed over time. --- Cognitive Flexibility The studies by Sáiz-Manzanares and Román-Sánchez [18] and Sanz de Acedo and Iriarte [37] show a significant improvement in the scores of the training group in cognitive flexibility when compared with the control group, with values of p = 0.0114 and p < 0.001, respectively. In the Sáiz-Manzanares and Román-Sánchez [18] study, these results can be observed in the follow-up measures, whereas in the Sanz de Acedo and Iriarte [37] study, they can be seen during the posttraining. In the study by Vita-Barrull et al. [33], they found a significant reduction in cognitive flexibility dysfunction compared with the time prior to the intervention . --- Working Memory In their study, Sánchez-Pérez et al. [19] did not obtain significant results in the evaluation measures of this process. However, working on this function helped improve the results of the participants' mathematics learning. That is, a transfer effect was achieved. In contrast, in the study by Pozuelos-López [36], significant improvements in working memory were obtained after training . Another study that also achieved good results in working memory with respect to the pre-intervention time was that of Vita-Barrull et al. [33]. --- Inhibition In the studies of Sánchez-Pérez et al. [19], Sanz de Acedo and Iriarte [37], Vita-Barrull et al. [33] and Pozuelos-López [36], significant improvements were observed in participants who trained the executive function of inhibition. In the study by Sánchez-Pérez et al. [19], improvements were perceived in inhibition tasks 1 , 2 , 3 and Nogo . Sanz de Acedo and Iriarte [37] and Vita-Barrull et al. [33] obtained an effect size of p < 0.001 in their study and Pozuelos-López [36] obtained an effect size of p < 0.01 in the posttraining measures. --- Multitasking In the study by Sánchez-Pérez et al. [19], this process is considered, but no significant results are obtained. --- Language There are two studies that work on language among other cognitive functions. In the case of the study by Gil-Calvo [32], oral and written expressions are studied, and satisfactory results are obtained. However, the measure used in this study is observational, so these results should be interpreted with caution. Sánchez-Pérez et al. [19] obtained satisfactory results , so we observed the effectiveness in the posttraining. --- Reasoning and Perception In the study by Gil-Calvo [32], there is an improvement in the reasoning process and in the perception process among participants. However, the measures used in this study are observational, so these results should be interpreted with caution. --- Social Cognition In the studies reviewed, social cognition, as well as interpersonal cognition, are approached in a psychoeducational way. In the studies of Mata et al. [35], with p = 0.037, Sáiz-Manzanares and Román-Sánchez [18], with p = 0.0002, and de la Morena [34], satisfactory results in the measurements of this variable were obtained; although in the case of the latter, no comparative data are provided for the two groups in posttraining. In the study by Vita-Barrull et al. [33], they work like the rest of the functions and work from emotional control, obtaining good results . --- Learning in Mathematics, Reading and Writing Mathematics, in the studies of Sánchez-Pérez et al. [19], Tellado [38], and Pozuelos-López [36], and language, in the study by Sánchez-Pérez et al. [19], have been skills improved through transfer effects by cognitive function training. The training of these functions, such as attention [36], working memory [19] and planning [38], implemented through self-instruction, led to an improvement in mathematical skills in the case studies by Tellado [38] and Pozuelos-López [36] and an improvement in reading in the case study by Sánchez-Pérez et al. [19]. --- Discussion This systematic review aimed to synthesize the scientific literature on interventions in cognitive domains for children and adolescents living in disadvantaged contexts in Spain. Nine intervention studies were included in which different cognitive dimensions were addressed and from which ways to improve the cognitive performance of children might be extracted. --- • Although there is a scarcity of studies carried out in Spain on the subject, interesting results have been obtained in this review. --- • The interventions analysed show, in general, an improvement in the development of cognitive skills in children with low SES. However, due to the heterogeneity between some interventions and others, this statement should be interpreted with caution. It is essential to study in more detail which variables could influence the results obtained. It has been observed that, in general, the hypotheses of the studies tried to show a significant difference between a control group, with or without low SES, and a training group with low SES. The results obtained have fully or partially confirmed these hypotheses. However, certain characteristics should be considered: --- • In addition to a low SES, some studies also include a population with vulnerable conditions, such as behavioural problems or learning difficulties [32,37,38]. It is relevant that these interventions were successful since it is an important step for the population with these difficulties; often, we do not focus on their strengths and potentialities. These data are consistent with international scientific evidence. For example, Peijnenborgh et al. [39], in their systematic review of cognitive training in children and adolescents with learning difficulties, show short-term improvements in verbal working memory, visuospatial working memory and decoding of words as results of this training. Similarly, in the study by Rueda et al. [40], they state that training of cognitive skills such as working memory, executive attention and cognitive flexibility produces improvements in performance on these tasks, and these benefits appear to be greater for children with lower initial levels of cognitive skills. --- • In relation to this, the study by Tellado [38] compared a sample of children with low levels of planning with a sample with high levels of planning after training, indicating that "those who needed it most gained more" . This statement shows the importance of including children with difficulties in the interventions, since they obtain even greater benefits than the rest of the population. Interventions such as those of Sanz de Acedo and Iriarte [37] and Gil Calvo [32] also show significant improvements among vulnerable populations after training. The effect of the interventions can also be compromised depending on, first, the age of the sample, and second, the skills trained. These variables can be modulated in the improvement of cognitive abilities due to cognitive plasticity, which varies depending on the life cycle [41] and the existence of sensitive periods in relation to moments especially important for early stimulation [12]. Thus, there are differences in the efficacy of the interventions as a function of the age of the sample. For example, Sanz de Acedo and Iriarte [37] indicate that the age of their sample helped in achieving their objectives, since the cognitive nature of the tasks trained required a higher level of assimilation, difficult to achieve for younger individuals. In contrast, Mata et al. [35] emphasize the importance of differentiating the interventions by age, since the existence of disparate age ranges in their sample could be a possible variable influencing the significance of the data. Regarding these aspects, the analysis of the review by Peijnenborgh et al. [39] showed a greater benefit in children older than 10 years in verbal working memory. This evidence is also supported by Rosselli et al. [42], who state that the development of executive functions, such as inhibitory control, planning or cognitive flexibility, is gradually better as the child gets older and reaches an adult level around the age of 10 years. According to the literature, cognitive functions can be seen in children at approximately 3 years of age, performance improves through age 5 and reaches an adult level at age 10 in general [42]. Therefore, considering the age range of the samples of the studies in this review, ages 5 through 13, and trained skills, such as planning, working memory, inhibition and flexibility, there is consistency in the results, since the prefrontal cortex of children achieves greater development from 7 to 12 years of age and, therefore, better performance in these cognitive functions [43]. Thus, if the interventions are adequately adapted to the age of the participants, they can be fruitful for both children and adolescents. In addition to executive functions, some of the interventions addressed the social cognition of minors, obtaining positive results [18,[33][34][35][36]. Authors such as Slavin and Lake [44] emphasize the importance of the inclusion of work in social cognition, as well as in metacognitive strategies in interventions with children, since the effect sizes reported by this type of training are greater than in the rest of the programs [44]. In the case of minors with low SES, it seems evident to influence the work of social cognition, since it refers to the processing of relevant information to carry out social interactions [45]. Given that in the environments in which these minors operate, on many occasions, an insufficiently structured context is perceived that allows a regulated learning of social codes due to social exclusion and the lack of environmental stimulation, training in this dimension can be very effective. In the same way, language training is essential in the case of minors belonging to families with low SES, as seen in the studies of Sánchez-Pérez [19] and Gil-Calvo [32]. It was evident in their studies that low SES had negative effects on their subjects' speech and writing. Among the studies, a difference is observed in terms of the agents involved in the intervention process. For example, in the studies of Sánchez-Pérez et al. [19], Sáiz-Manzanares and Román-Sánchez [18], and Gil-Calvo [32], an internal agent led the intervention. This entails positive and negative aspects, but ideally, it would be an exercise that would consider both internal and external professionals. The joint work of both would facilitate the implementation of the programs and would achieve, in the long term, greater generalization. Therefore, implementing programs of this type in which professionals are needed in schools as a new methodology would imply the need to design new educational policies [19]. The participation of cotherapists, such as fathers, mothers or relatives, could help develop better results, since the training would affect not only the school context of the children but also the family context. Thus, the implementation of these programs during school hours and together with the help of family members would enable better development of the child, since interventions would not be conducted in environments more typical of a laboratory but in surroundings familiar to the children. This understanding between professionals, teachers and family members would add greater ecological validity to the data, since the improvements perceived in the training would be generalized and shown in all the systems that involve the development of the child. Finally, only three studies present a follow-up measurement for their dependent variables [18,34,38], and the results of these three studies are very positive. The findings indicate that, in addition to good results after training, improvements are maintained for longer periods of time. This, in addition to assuming a very clear benefit for the participants, is encouraging for the implementation of cognitive intervention programs in the school curriculum. --- Limitations and Future Directions This systematic review has limitations related to the applied methodology. First, access to the metadata in some databases was difficult, so the preparation of the Excel spreadsheet was manual, lending itself to human error. In addition, access to the full text of some studies was difficult. In the case of doctoral theses, these could not be obtained due to a lack of time and resources. Second, due to the characteristics of some studies, it was not possible to dissociate sample subgroups in studies that included an older sample, a criterion that is not within the objective of this review. After this synthesis of results, future lines of research are proposed that may help research professionals improve the cognitive processes of at-risk minors. In general, it has been shown that cognitive training, in social skills and physical exercise, contributes to improvements in the development of cognitive functions of children with low SES. However, little is known about how diet could favour the development of these functions, since the only study on the subject did not show significant results [22]. Due to the importance of a good diet in the development of minors and considering that living with a low SES brings with it deficiencies in access to basic resources, such as food, it is understood that interventions should start here. The importance of meeting the physiological needs of people is paramount, since it is difficult for a person to worry about improving cognitive functions when his or her basic physiological needs are not covered [46]. Therefore, we recommend investigations into the implementation of nutritional intervention programs to improve the quality of life of children and, therefore, their cognitive development. It has also been observed that there are evolutionary periods that are especially conducive to the development of each cognitive function and that this development depends on many other variables in addition to age. However, in the studies analysed, interventions were not performed to study this development in each age range. This suggests the need to conduct studies in which the sample is divided by more limited evolutionary periods and the cognitive dimensions are differentiated. Defining the interventions by evolutionary periods will help determine which interventions are most effective for each child and in which evolutionary period a better result will be achieved. There is a need to conduct more intervention studies in Spain, given the small number of interventions that were found. --- Conclusions This review has shown the heterogeneity that exists in terms of training aimed at improving cognitive dimensions for children and adolescents. From this systematic review, the following findings can be highlighted: --- • Studies focused on the improvement of cognitive functions in children is very scarce in Spain, but the differences in the execution of the different studies found, can provide us with knowledge about different variables that influence the effectiveness of these interventions, specifically: • Children with low family SES obtain greater benefits from this type of intervention, since these children manage to develop their cognitive functions significantly compared with a population with a high or medium SES. --- • Performing an intervention that considers the different age ranges among minors is essential to developing better training and achieving better results. --- • There is a great variety of cognitive functions that have been trained. Thus, in the development of these training programs, the importance of choosing those most appropriate based on the age and conditions of vulnerability of the sample is emphasized. --- • Variables such as intervention agents or cotherapists involved in the development of interventions may influence the training results of children and adolescents.

Research studies show a strong influence of socioeconomic status (SES) on human development, and how the exposure to risk contexts in the earliest stages translates into dangers in the cognitive development of children and adolescents. To alleviate these consequences and favour development, different cognitive training programs have contributed to this field by identifying the criteria of efficacy. This systematic review identifies and synthesizes the evidence of cognitive intervention studies implemented with psychosocial risk groups carried out in Spain. The search strategy was adapted to different databases. Only studies published in English or Spanish and developed in Spain that included interventions applied in populations aged 5 to 18 years with a low SES were included. The analysis of the literature showed nine interventions that indicated an improvement in those cognitive functions worked with low SES children. The cognitive domains that most worked were executive functions, followed by social cognition and language. After reviewing the available literature, a clear scarcity of interventions carried out in Spain was observed. Variables such as age, cognitive functions or personal vulnerability were identified as factors to be taken into account in future lines of research due to their influence on minors. These findings indicate the relevance of this review to help decision-making in relation to the actions to be carried out by the competent bodies in Spain.

Introduction The COVID-19 pandemic seriously threatens families worldwide, including in Indonesia. Financial uncertainty, childcare difficulties, and stress due to societal limitations are all issues that occur due to social changes. Nearly all countries have established social distancing and lockdown measures, which imply social reforms . Although the Covid -19 pandemic was originally a health crisis, its impact has widened in all aspects of life . The pandemic's reach has expanded to include a theological crisis . As a corollary, the COVID-19 pandemic has a multifaceted influence on humans around the globe. During the COVID-19 pandemic, the pattern of family life changed drastically and dramatically . Two Indonesian government policies, namely Large-Scale Social Restrictions and Adaptation of New Habits , require people to adjust their behavior according to health protocols. This demands the community's ability to react swiftly and accurately to establish new habits under health principles. The family's resilience is critical in constructing these new habits . All family members' dynamics must be considered when dealing with stress symptoms brought on by the COVID-19 pandemic . Family resilience is closely related to the family's achievement in realizing its members' welfare. Resilient family circumstances have physical and material capacities to live freely and grow, and their families in harmony are indicators of good family resilience. Then, inner and outer happiness and well-being can be accomplished . Families with high levels of resilience can produce high-quality, highly competitive human resources . Because the state of family resilience defines the current stage of social development, it can be used as a barometer for observing the dynamics of family social life. Consequently, it is critical to investigate the amount of family resilience during the COVID-19 pandemic to deal with its enormous consequences. Family resilience refers not only to a family's integrity and long-term viability but also to how to make all family members prosperous and united. Various studies on family resilience during the pandemic have been reviewed by researchers . Although numerous research has been conducted on the resilience of Indonesian families during the COVID-19 , however, researchers have yet to find a scientific study in Indonesia that analyze multidimensional Muslim family resilience. Furthermore, no studies have been undertaken to link the multidimensional model of resilience during the COVID-19 pandemic with the divorce rate. Multidimensional family resilience comprises three components that can't be separated because they're so intertwined: individual, family, and community resilience. These three elements are likewise inextricably linked to the socio-cultural environment. As a result, the concept of family resilience is multidimensional . Individual and family resilience will lead to community resilience. According to various reports, the number of divorces increased during the COVID-19 pandemic. The divorce rate in Indonesia during the COVID-19 pandemic was reported to have increased by 5% . Divorces increased by 15% in Tangerang , while in Banyumas Regency increased by 48 divorce cases . Meanwhile, the divorce rate in Pekalongan City and Pekalongan Regency was known to have increased during COVID-19, with the majority of divorces being caused by disputes and quarrels, as well as economic factors . Throughout 2020, there were 2,067 divorce cases at the Pekalongan Regency Religious Court. In the first quarter of 2021, there were 553 divorce cases registered with the Religious Courts . The divorce rate also increased in Batang Regency due to economic problems . Therefore, various strategic and practical steps are needed to deal with household crises and divorce problems during this pandemic. This study provides empirical evidence to show how the resilience of Indonesian multidimensional Muslim families during the COVID-19 pandemic can minimize and prevent family conflicts and crises, particularly in decreasing divorce rates. --- Method This research employed a qualitative methodology to investigate a specific subject comprehensively. The study spanned four months, from May to August 2021, and was conducted in three distinct geographical regions: Pekalongan City, Pekalongan Regency, and Batang Regency. These regions were chosen due to their geographical location along the northern coast and their shared experience of being significantly impacted by the ongoing COVID-19 pandemic, coupled with a notable high rate of divorce cases. The primary data collection techniques employed were direct observation and indepth interviews, both focused on Muslim families directly affected by the ramifications of the COVID-19 pandemic. Religious courts in the three cities were designated primary research settings to align the data collection process with the research objectives. These courts were selected due to their function as legal arenas where divorce cases were being adjudicated. The participants in this research comprised various parties involved in divorce cases heard at the religious courts. These parties encompassed the litigants themselves, including the husband and wife, witnesses, friends, relatives, and colleagues associated with the individuals undergoing the divorce process. A comprehensive total of 25 respondents were engaged in in-depth interviews, facilitating the acquisition of rich and nuanced information regarding their experiences and perspectives. A triangulation technique was employed to ensure the validity and reliability of the data collected. This involved meticulously comparing information and data acquired through different channels and perspectives. This triangulation technique was essential in corroborating the accuracy of the findings and enhancing the overall credibility of the research outcomes . --- Result and Discussion --- Model of Multidimensional Muslim Family Resilience during the COVID-19 Pandemic The COVID-19 pandemic significantly impacted the lives of families worldwide, including Muslim families. This effect potentially caused family conflicts and crises. The family crisis was caused not only by physical health but also by the psyche of Muslims. Muslim families played a critical role in preventing and mitigating the negative effects of the COVID-19 pandemic on all family members, which led to family crises. This is because religiosity is an important indicator of family resilience. Numerous specific examples and studies have highlighted the positive impact of religiosity on families facing adversities and challenges. The results of the study by Rahmati et al. revealed a noteworthy and substantial impact of spiritual and religious interventions in enhancing the resilience of family members caring for patients. These interventions demonstrated significant effectiveness in bolstering the ability of family members to cope with the challenges and demands associated with caregiving. The findings underscored the positive influence of incorporating spiritual and religious elements into interventions to support families in difficult circumstances . Further, one notable study conducted by Spilman et al. provided substantial evidence supporting the significance of religiosity in a developmental context, specifically in fostering positive family functioning. The findings addressed previous limitations in the research field by overcoming methodological challenges. Previous studies relied on cross-sectional designs, single informant measurements, and retrospective reports and failed to control for individual differences. By overcoming these limitations, the study provided a comprehensive understanding of how religiosity influenced positive family functioning. As a result, families incorporating Islamic teachings were better prepared to deal with social changes during the COVID-19 pandemic. Family resilience is a crucial indicator of social development, making it valuable in observing family dynamics . The ability of Muslim families to provide a sense of security and well-being during the COVID-19 pandemic might significantly impact COVID-19 prevention. A sense of calm and comfort due to their closeness to God made them more relaxed in dealing with all these drastic changes. This calmness was crucial when facing chaos during the COVID-19 pandemic. As a necessary consequence, the level of resilience of Muslim families could be used as a significant capital to overcome the global health crisis. Family resilience was closely related to the family's achievement in realizing its members' welfare. Family conditions that were resilient and tough had physical and material abilities, could live independently, and could develop themselves and their families in harmony. Then, inner and outer well-being and happiness could be attained . Families with high resilience produced high-quality, competitive human resources . As seen through the lens of social science, individuals cannot be separated from the elements of family and community. Thus, individual, family, and societal aspects were all social aspects that were closely related to each other. Individuals require family and society to develop their existence as human beings to express their social aspects. Good relationships between family members greatly affect interpersonal happiness within the family unit and reverberate into the broader societal framework. Thus, it was safe to assume that multidimensional family resilience included three interrelated aspects that should not be separated. They were individual resilience, family resilience, and community resilience. These three dimensions were also directly related to the socio-cultural community. As a result, the concept of family resilience could be described as multidimensional . This was also because individual and family resilience led to community resilience . Thus, it can be concluded that three main factors can affect the level of resilience of multidimensional Muslim families during the COVID-19 pandemic, which are described as follows: 1) Individual factor. Individual characteristics play a significant role in developing multidimensional Muslim family resilience. Individual factors had a causative link with the family dimension and a causal relationship with the community dimension. The inference is that the greater the individual's resilience, the greater the family's resilience. At the same time, it can potentially improve the surrounding community's resilience. Conversely, when the individual's level of resilience decreases, it also has an impact on the level of family resilience. At the same time, the surrounding community's level of resilience is likely to dwindle; 2) Family factor. The family factor significantly contributes to the development of multidimensional Muslim family resilience. The family factor shows a causal relationship with individual and community dimensions. High family resilience can increase individual resilience. At the same time, it can potentially improve the surrounding community's resilience; and 3) Community factor. The community factor is powerful in creating a good level of multidimensional Muslim family resilience. Community factors have a causal association with individual and family dimensions. The corollary is that the higher the level of community resilience, the higher a person's resilience and the degree of family resilience. In the social science perspective, individuals, families, and communities are interconnected elements that cannot be separated. Individuals form the foundation of families and societies while relying on them to express their social aspects. The family, regarded as a crucial component of society, plays a vital role in child-rearing and provides a sense of belonging throughout adulthood. Additionally, the family offers essential support for each individual's emotional, mental, and physical wellbeing. Being part of a resilient family provides individuals with benefits such as meeting basic needs, a sense of belonging, and a built-in support system. On the other hand, community resilience is used as a tagline to deal with longterm crisis expectations without violence , such as in the COVID-19 pandemic. Building community resilience in the face of nonviolent social crises entails more than just looking at what happens on the outside. Due to the constant and ongoing crisis, it is complicated to simply 'bounce back,' making community resilience a fantasy rather than a goal, hampered by the same forces that cause and sustain social crises . Then, individuals and families must be able to deal effectively with all difficulties to enhance community resilience. In the face of the dynamic social changes brought about by the pandemic, incorporating Islamic teachings into the daily lives of Muslim families in Indonesia can provide valuable guidance and support. Islamic teachings encompass a wide range of principles and values that can help families navigate the challenges of the pandemic and its associated social changes. For instance, the importance of maintaining strong family bonds and fostering unity within the household can be emphasized, as Islam greatly emphasizes the value of family and kinship ties. This can encourage family members to support and care for one another, fostering resilience and cohesion during times of crisis. Additionally, Islamic teachings promote social responsibility, which can be translated into acts of charity, empathy, and solidarity with those most affected by the pandemic. Encouraging Muslim families to actively engage in acts of kindness and support within their communities can foster a sense of purpose and collective resilience. Moreover, Islamic teachings also emphasize the importance of faith, patience, and trust in the face of adversity. Muslim families can draw strength from their religious beliefs, finding solace and guidance in prayer and seeking comfort in knowing that hardships are part of a greater divine plan. By incorporating Islamic teachings into their daily lives, Muslim families in Indonesia can find solace, guidance, and strength to navigate the ever-changing dynamics of social change during the pandemic. --- The Role of Multidimensional Muslim Family Resilience as a Strategy to Prevent Divorce during the COVID-19Pandemic This section discussed the role of multidimensional Muslim family resilience in preventing divorce during the pandemic. This section covered two important topics: Muslim families' perceptions of divorce during the COVID-19pandemic and the role of multidimensional Muslim family resilience in preventing divorce. This section's discussion was derived from the interviews conducted with the respondents. --- Muslim families' perceptions of divorce during the COVID-19pandemic The general description of respondents' perceptions of divorce during the COVID-19pandemic was expressed through four questions related to divorce, namely a) I was thinking about divorce, b) I felt that life would be better after divorce, c) Divorce never crossed my mind, and d) divorce only gave me new problems. Most respondents agreed with statement number one, "I was considering divorce." This indicated that they considered divorce during the COVID-19 pandemic. However, interesting findings were also obtained, where few sources strongly agreed . Meanwhile, 23.08% of the informants were strongly disagreed. In statement number 2, it was also stated that most of them believed that their lives would be better if there was a divorce during the COVID-19 pandemic. However, as many as 31.73% stated that they strongly agree, while the respondents who answered strongly disagreed only about 21.15%. The majority of respondents then agreed with statement number three. This indicated that during the COVID-19 pandemic, they stated divorce had never occurred to them. Then, in the last statement, the average interviewee also agreed, stating that divorce would only cause new problems. The interview results also revealed that most respondents had considered divorce, even in the early stages of their marriage. When there was a fight or commotion with their partner, many respondents considered divorce. One of the most common reasons was that "the partner did not live up to initial expectations." They were disappointed after learning about the couple's character and behavior. However, the findings also revealed that they only considered divorce but did not take any action, such as officially filing a divorce suit at the religious court. Furthermore, when asked if they wanted to divorce during the COVID-19 pandemic in Indonesia, almost all interviewees responded with a short and firm "Yes, I have. Even consider divorce on occasion". Sumarti, one of the Batang Regency PA witnesses, stated, "I frequently wanted to separate from my husband, especially after my husband was laid off." The family situation was very difficult; the mind was not calm. We've even discussed divorce. The children, on the other hand, discouraged us from separating." "I took my sister who was filing for divorce," Sumardi, a relative of the wife who filed for divorce from her husband in the religious court of Pekalongan City, said. "They've wanted to split up since the beginning of the pandemic. There had been family mediation, but that was how it was." Those who had considered divorce believed that they would be able to live a better and happier life. They believed that divorce would solve their problems with their partners. Moreover, during the COVID-19 pandemic, they argued and fought more frequently, and domestic violence was not uncommon. They hoped for a better life by divorcing. However, the in-depth interviews revealed that this was only a wish that was not followed by action, such as a lawsuit or a divorce application. They took no significant action and preferred to keep their household running. Other findings revealed that problems in the household were common. Every family was prone to disagreements and conflicts. However, divorce was not the best solution to these issues. They contended that there must be a better solution to every conflict than divorce. Divorce not only created new issues for litigants, but it also had a significant impact on children and extended families. --- The Role of Multidimensional Muslim Family Resilience in Preventing Divorce During the COVID-19Pandemic Divorce by parents undoubtedly changed the structure and relationships in the family. Furthermore, society frequently stigmatizes or labels families going through divorce for no apparent reason . It was previously stated that during the COVID-19 pandemic, the number of divorces in Indonesia increased. Multidimensional Muslim family resilience has been confirmed to consist of three interrelated dimensions: the individual, the family, and the community. All three had a causal relationship, which means they caused and affected each other. As a result, when one dimension improved or deteriorated, the other two dimensions were expected to follow suit. Accordingly, the roles of these dimensions in preventing divorce during the COVID-19 pandemic were intertwined. --- Individual resilience in preventing divorce Individuals' ability to deal with major problems and conflicts, such as divorce, is inextricably linked to their life motivation and personal resilience. Observations at the Religious Courts of Pekalongan City, Pekalongan Regency, and Batang Regency showed that male individual resilience was higher than female individual resilience. This was evident in their emotions and behavior while in the Religious Courts, where they went through court processes related to their divorce cases. On the surface, the male side appeared calmer and more composed. It was unusual to see a man who appeared depressed, crying, or even looked sad. On the other hand, many women expressed their sadness even in the Religious Courts. Not infrequently found women who were crying. "I was very sad and disappointed," Dwi sobbed, "I did not expect my marriage to end like this." However, when asked if the divorce decision could be reversed, she replied emphatically, "Absolutely not. I gave this much thought. We could not get back together. However, when I considered the future of myself and my children, I could not shake the feeling of sadness, disappointment, and fear. Similarly, Suryati, a woman who worked as a trader, stated, "It was very sad to have to part with my husband. Disappointment also existed because it had disappointed my children and extended family." When asked if anything could prevent them from divorcing, he replied, "I did not think so; we had considered many things before filing a divorce case. My husband and I had a deep talk about it." In contrast to the wives, who expressed their emotions more openly, the husband in the litigation did not appear sad despite the fact that they both felt the same way. According to Teguh's interview, "Of course, I was sad to have to divorce like this. I was disappointed because I failed to build a good household. I should be a wise leader, but the result was not what I expected. For the sake of my family, I had to be strong and patient. We were separated, but we shared children. For them, I had to be strong and patient." Observations and interviews also revealed several important facts about the parties in divorce cases during the COVID-19 pandemic. First, most of them already strongly desired to separate because they believed their domestic problems were too big. However, the thought of divorcing was not supposed to be due to the pandemic. Second, almost nothing could change their minds and desires for divorce once they had filed to the Religious Court. Children may be the most powerful factor in convincing them to change their minds about divorce. Third, their disappointment and fear did not persuade them to drop the case. Fourth, their abilities and resilience in dealing with divorce were different. They were influenced mainly by the number of children and the support of their closest friends and family. Fifth, they tended to have a strong commitment to be steadfast in facing divorce for the sake of their children and extended family. Sixth, men appeared to have a higher level of individual resilience than women because they believed they must be strong and patient. Seventh, even though women appeared more emotional and vulnerable after divorce, they had better motivation and life planning than men. --- Family resilience in preventing divorce Generally speaking, an interview with a mediator at the Religious Courts revealed that their children were the most powerful factor preventing a married couple from divorcing. From the observations, it was also found that there was a tendency for married couples who had children. The more children they have, they had the higher ability to be able to face and solve all the problems they face. Their level of resilience in dealing with all these problems was motivated by a high motivation to provide the best for their children. Furthermore, married couples going through divorce in the Religious Courts or whose divorce cases have been decided tended to want the best for their children despite the difficult circumstances. They also realized that divorce could have a negative impact on their children. Indeed, some claimed that children had experienced grief, anxiety, and even trauma during the divorce process . Family, friends, and colleagues impacted their ability to deal with various problems, including divorce, during the COVID-19 pandemic. Moral and material support from family more or less provided peace. Similarly, friends and colleagues frequently provided positive contributions to alleviate the burden, both psychologically and materially. They were supported by the findings of an interview with Siti Muthmainah, a 31year-old housewife currently undergoing a divorce process at the Kajen Religious Court in Pekalongan Regency; she said, "My children were still small, so I had to be strong through all of this. They were my priority now. To me, their happiness was everything. I did not want our divorce to harm their lives in the future". Another resource, Suyanto, whom his wife sued at the Batang Regency Religious Court, stated, "I just gave up, no matter what, everything had happened. Divorce was always difficult. But, for the sake of my children, I had to face it with courage and patience. They have done nothing wrong, but their parents' divorce will significantly impact their lives." A mediator at the Kajen Religious Court, Asep Suraya, stated, "Only children could change their parents' intention to divorce. Most married couples who have filed divorce cases with Religious Courts usually had very strong intentions and reasons for separating. Judges' mediation rarely changed their minds. However, their stance frequently shifted when the impact on children was explained, and some even canceled the process." According to the findings of the interview, children whose parents were going through a divorce process at the Pekalongan City Religious Court did not want their parents to divorce and expected them to reconcile. Divorce left them sad, disappointed, confused, afraid, and guilty. "Of course, I didn't want my parents to divorce," Zahira explained. "They did fight a lot, but I hoped they could get back together." When asked how she felt, she continued, "I was scared, sad, I did not know what to do. I felt it was my fault if my parents separated." The guilt stemmed from a paranoid belief that they were the cause of their parents' separation. Even though their parents had explained the reasons for their divorce, the children could not shake their guilt. Not much could persuade a married couple to stop divorce in a religious court. According to the findings, the factor of children could be used as a protective factor for the husband and wife involved in a major conflict. Metaphorically, children can be likened to precious jewels adorning a household, radiating positivity that energizes parents in their battle against adversities, including unprecedented challenges like the COVID-19 pandemic. The unwavering parental aspiration to offer optimal conditions for their children is a protective barrier, safeguarding the family unit from the onslaught of societal crises. Just as jewels possess an inherent allure, the presence of children in a home imbues it with a sense of purpose and determination. This fortitude, driven by parental love, not only aids in surmounting difficulties but also contributes to the resilience of the entire family in the face of hardships. This was also consistent with previous research, which found that the number of children was one of the protective factors for an adult woman in the early post-divorce period . According to the report, many internal and external factors influenced the resilience of women in early adulthood following divorce. Family support and good social relationships with other people greatly affected the resilience process. The individual's ability to deal with and solve problems in their new life brought them to the overcoming stage or even reaching out. Further, high religiosity, education level, length of divorce period, and number of children owned were included in the protective factors of subjects that support optimally developing resilience . Furthermore, observations and interviews showed that family religiosity was a protective factor in dealing with various problems during the COVID-19 pandemic, including divorce cases. The ability to be grateful, patient, and steadfast in the face of God's trials helped them stay calm and think positively. A positive attitude toward God also allowed them to work together to combat the spread of the COVID-19 pandemic. However, the religiosity factor was known to be less important than the children's factor in keeping parents together. This was supported by an interview with Asep Suraya, a Religious Court mediator, who stated, "The factor of religious knowledge and insight could influence parents to divorce. However, in my experience, this factor was not overly significant. This could be seen in divorced pious people and even religious leaders." He said, "Religious leaders who did not intend to separate were usually motivated by the children's factor. They rarely mentioned the reason because God disliked divorce, even though it was not forbidden." This statement confirmed the earlier findings that children were the most powerful protective factor for family resilience. --- Community resilience in preventing divorce As social beings, humans cannot be separated from social life in society and its surroundings, the community in which they live. As a result, it was not surprising that community factors influenced individual and family resilience. Observations and interviews revealed that community factors significantly affected individuals and families in preventing divorce. This could be seen from the statements of witnesses presented by the two parties in the process of divorce. Most of them stated that they had provided positive input and advice, so the disputing parties stopped the divorce process. Rosyid, a husband-side witness, stated, "Every household had its own problems. It would be preferable if it could be resolved wisely rather than separated." He said, "As I told my neighbor, divorce rarely solves problems and often creates new ones". Splitting up among extended family members was unavoidable. Typically, children were the primary victims. Of course, the final decision is theirs. As a friend and a neighbor, I could not only offer positive advice," he continued. Etik, a witness from the wife's side, made a similar statement: "The advice I always repeated to my friends was to think positively for the sake of the children and the entire family." She stated that divorce would not bring joy. However, as a close friend, I felt obligated to back whatever decision my friend made. I'll be there for her when she needs me. Whatever the decision later, she needed much support from various parties". Further, Sukardi, a neighbor and colleague of the party in the Religious Courts undergoing a divorce, stated, "I did not want to interfere too much in other people's household affairs; I only gave advice and input to them." Thus, a positive environment could provide the best input and advice to those in need. A healthy environment also provides the peace and serenity needed to make sound decisions. A positive community did not drag them into a larger conflict but offered various alternative options from various perspectives that could be used to make final decisions. The community and the surrounding environment could make the disputing parties refuse to divorce. From the perspective of social science, individuals cannot be separated from the elements of family, community, or society. The individual, family, and society were social aspects that were closely interrelated. Without the individual, there would be no family or society. Meanwhile, to develop as human beings, people require family and society, specifically media, through which they can express their social aspects. The family was regarded as one of the most important social units because it contributed to the upbringing of children. It was also known as the main family, and it provided the necessary support for each individual's emotional, mental, and physical well-being. Individual benefits of being in a resilient family included meeting basic needs, having a sense of belonging, and having a built-in support system. Individuals had close relationships with their fathers, mothers, grandfathers, grandmothers, uncles, aunts, brothers, and sisters. This relationship could be founded on the family's values, norms, and rules. The individual ultimately had the rights and obligations attached to the family due to the relationship. Individual and community rights should be distinguished by prioritizing community rights over individual rights. Individuals come into contact with various social phenomena through the family to develop their capacity as family members. Meanwhile, society was the individual's larger social environment. Individuals in society demonstrated what they had learned from their families. Individuals could not be said to be individuals unless they have been cultured. Thus, only people capable of realizing their full potential could be called individuals. Family and community media were required to develop this human potential or to become cultured. Several practical tips and recommendations can be implemented to strengthen resilience and prevent Divorce among Muslim families in Indonesia during the pandemic. Firstly, open and effective communication within the family is crucial. Encouraging family members to express their concerns, fears, and frustrations openly while actively listening and understanding each other's perspectives can help mitigate conflicts and strengthen emotional bonds. Secondly, allocating quality time for shared activities and bonding can foster a sense of togetherness. Engaging in regular family rituals, such as daily prayers or Quran recitation, can provide spiritual nourishment and reinforce family unity. Thirdly, establishing a routine that balances work, household chores, and personal time is essential. Families can maintain order, reduce stress, and ensure everyone's well-being by setting clear boundaries and expectations. Fourthly, seeking support from religious leaders or counselors who specialize in marital and family issues can provide guidance and mediation when conflicts arise. These professionals can offer valuable insights from an Islamic perspective and help couples navigate challenges effectively. Lastly, focusing on self-care is vital for individual and family well-being. Encouraging self-reflection, engaging in hobbies, and promoting physical and mental health through exercise, adequate sleep, and healthy eating can contribute to overall resilience and marital satisfaction. By implementing these practical tips and recommendations, Muslim families in Indonesia can strengthen their resilience, promote marital harmony, and overcome the challenges posed by the pandemic. --- Conclusion This study looked at the resilience of multidimensional Muslim families amid the COVID-19 pandemic and their role in preventing a spike in divorces. According to the study's findings, three factors could influence the level of resilience of multidimensional Muslim families during the pandemic: individual, family, and community resilience. The three dimensions of resilience were interconnected and had a causal relationship. Accordingly, the other two were obligated to uphold when one dimension rises or falls. Consequently, these dimensions' roles in preventing divorce during the COVID-19 pandemic were inextricably linked. The findings also revealed that divorces increased during the COVID-19 pandemic in Pekalongan City, Pekalongan Regency, and Batang Regency. Most divorces claimed by the wife were in divorce cases accepted or decided by Religious Courts. The husband filed one-third of divorce cases in religious courts. The factors that led to divorce in the three regions were similar to those that led to divorce during the non-COVID-19 pandemic, which was dominated by ongoing disputes and quarrels, leaving one party, and economic factors. However, the rise in domestic violence as a cause of divorce yielded different results. Domestic violence victims included both the wife and the husband. Domestic violence could be physical, psychological, or emotional abuse. Interesting results were found based on interviews with respondents, in which most of them had thought of divorce and believed that they could live a happier life after divorce. However, the findings also revealed that most of them only considered divorce and did not take any significant actions, such as filing a lawsuit or filing for divorce to the Religious Court. A more prominent study locus and larger quantitative data might be used to acquire superior analytical results.

The pandemic of COVID-19 had a profound impact on the lives of families worldwide, including Muslim families in Indonesia. This study analyzes the resilience of multidimensional Muslim families in Indonesia during the COVID-19 pandemic. It has also been linked to family resilience in preventing divorce, which has reportedly increased during the COVID-19 pandemic. This study uses a qualitative approach. Observation techniques and in-depth interviews are conducted to obtain primary data. There are 25 interviewees. The findings indicate that three dimensions, namely the individual, family, and community dimensions, influence the resilience of multidimensional Muslim families during the COVID-19 pandemic. There is a positive causality relationship between the three interconnected dimensions. The findings suggest that all three can be used to prevent divorce by increasing resilience in these three dimensions. The analysis also reveals a spike in domestic violence, which is the cause of divorce during the COVID-19 pandemic. Domestic violence affects not only wives but also husbands.

INTRODUCTION Workplace operates as both system and sub-system which encompasses several elements, some of these elements are physical and others are spiritual in nature like leadership . The human elements of the workplace share both physical and spiritual nature and it well-being is paramount to the effectual accomplishment of her goals. According to Cooper & Cartwright , health well-being has a significant impact on the financial health and profitability of the organisation. It absence may result to work place accident which affects the organisations in terms of cost of lost of production and efficiency, lost time and cost of compensable disorder /lawsuit, health insurance cost and others . As Tov puts it, employee mental wellbeing directly affects how employees think and felt about their job and organisation. Employee wellbeing predicts job attitude and performance. Tov further asserts that employee well-being has implications for both productivity and work relationships. In spite of the above, attaining optimal level of employee well-being seems difficult, hence this study. Importantly, several scholars have correlated employee well-being with other variables such as different effort construct and effort-reward imbalance , job strain, effort-reward imbalance , the 'what' 'why' and 'how' , transformational leadership the HRM-organisational performance relationship , innovativeness , happiness, health or relationship? Managerial practices , and others. This shows that employee well-being is associated with a gamut of positive outcomes. But not much has been done relating interpersonal approaches to management thought to employee well-being. As a result, the researchers argue that there is a relationship between the interpersonal approaches and employee well-being. According to Baridam , interpersonal approaches emphasized industrial humanism which is the recognition that the worker is a human being, selfmotivated and with personal needs. This study reviews literature exploring the linkage between the interpersonal approaches and employee wellbeing in the workplace. Employee well-being were expected to be given priority attention by workplace management and entrepreneurs owing to it importance, this desired state is yet to be attained. That has resulted to low level productivity, poor job attitudes and abysmal performance in certain instances, lost of productive time, lawsuit, financial health challenges and reduced profitability level to mention but a few. Perhaps, these workplaces have not given desired attention to the issue of employee wellbeing. Based on these plaguing issues, this study is conducted to explore the relationship between the interpersonal approaches and employee well-being in workplaces in Nigeria. Importantly this paper is sequence accordingly, while this section introduces the very essence of the paper, the next reviews extant literature on interpersonal approaches and employee well-being establishing their relationships. Thereafter conclusion and recommendations made. --- LITERATURE REVIEW --- Interpersonal Approaches These lay emphasis on the psychological function of the organisation and determined the task of management as harmonizing the goals of the organisation with those of the individual workers . This harmony is essential because if they are at variance, the goals of the workplace will suffer. That will also cause industrial disharmony. Therefore, workplace management and owners should ensure harmony is achieved to a great extent. According to Baridam , there are basically four subdivisions of interpersonal Page: -248 -approaches namely; psychological approach, sociological approach, co-operation social system approach and human relations approach. These various subdivisions contribute in their various spheres to the understanding of the well-being of employees in the workplace. --- Psychological Approach: This approach concentrates on the individual and the way he relates at the workplace with the environment. Premium is paid to how the industrial man could achieve maximum performance level without impairing his health. Therefore, workplace design of equipment, lightening arrangement, ventilation and other working conditions are expected to be fixed to suit employee . This view is corroborated by Dessler that asserted, everyone is a unique individual and that everyone wants to be treated in a manner that correspond to who he thinks he is, and he thinks he deserves. This approach as time progresses looked at personality dynamics of the employee to understand and predicts his behaviour and motivation and the likely changes that will occur in different workplace situations. Notable researchers that earlier contributed to this approach are Hugo Munsterberg, Lillian Gilbreth and Walter Dill Scot. Also contemporary behavioural theorist like Maslow and Herzberg made significant contributions to this approach. Maslow came up with needs hierarchy, claiming that human needs are fixed in a pyramidal structure with the lower level needs satisfied before the next upper level is attended to. Those needs he mentioned were physiological needs , safety needs , social needs , esteem needs , and self-actualization needs . On the other hand, Herzberg as cited in Baridam came up with his two-factor construct namely the hygiene factors placed on a continuum from dissatisfaction to no dissatisfaction. The relevant factors to this category were pay, job security, company policies, status, working conditions, fringe benefits and interpersonal relations. He claimed that it absence caused higher proportion of dissatisfaction but it presence amount to no dissatisfaction. Motivation which its continuum starts from no job satisfaction to satisfaction is another factor. Here job content factors are considered which includes challenging job responsibilities, recognition for well accomplished job, opportunities for growth and advancement in workplace, increase responsibility, job itself, and feeling for achievement. These factors lead to satisfaction or no job satisfaction. --- Human Relations Approach: This approach considers the well-being of the workers. In the view of Daft , the human relations approach narrows its attention to the worker and emphasized on its better and stronger relationships, recognition and achievement that are stimulants to increasing productivity in the workplace. As stated by UKESSAY human relations approach shows a significant deviation from the automated and dehumanised approach which the scientific approach represents. It is note-worthy to assert, the human relations approach is concern about the individual and organisational change experienced via human interaction . Daft places emphasis on teamwork and motivation which is the heart of every productive organisation but disagreed with the concept of managers and workers do. This shows that workplaces need cooperation and collaborations to achieve its goals and objectives. Earlier the works of Elton Mayo a Harvard University Professor was the take off point of this approach in the 1920s. Elton Mayo and his associates conducted series of experiments adopting varying working conditions. The Relay Assembly Test Room had it focus on a small group of six women. Their productivity was monitored at different work condition but discovered that productivity increased despite the changes. This Page: -249 -made the conclusion that the group size was a responsible factor possible to increase productivity. This phenomenon is what Daft refers to as Hawthorne effect which claimed that the increase in productivity was as a result of the group perceived of having unique attention from management. Also the Bank Wiring Observation Room Study was another stage in the Hawthorne studies. This stage isolated male who assemble terminal banks for telephone exchanges for the study. The researchers who conducted study were concern of the effect of a group piecework incentive plan. But the study revealed that they developed more controlled productivity by defining what constituted a fair work for their members . This warranted the conclusion that wage incentive plan was less significant as compared to acceptance and security in determining the output of an individual in the workplace. The interview programme which proposed that the work group determines production level of members was also carried out. This gave rise to the fact that human element in the workplace impacts on the level of productivity as compared to physical and technical spheres of the job. Sociological Approach: This approach viewed the individual as a product of group behaviour. This means that the individual actions are shaped by the culture of the group. It also lay emphasis on seen the workplace as a social system with cliques, information statues, grape vines, rituals, and others. The understanding of this approach, help managers to attend to the well-being of the workers. In fact the understanding of their cultural relationship and their influence on the workers productivity in the organisation is the concern of managers . It is important to recognise that once an individual becomes an employee, he assumes membership of a group. Such an employee is influenced by the people, the processes therein the group and relationships. Based on this, Dessler is of the opinion that the features of group interaction give rise to stable or predictable quality . Therefore, predicting employee behaviour based on interaction helps managers to attend to employee well-being in the workplace. Furthermore, other scholars have studied the sociological approach. Stats & Blurke , considered a sociological approach to self and identity. The study affirms the fact that self influences society through the actions of individuals thereby creating groups, organisations, networks, and institutions. The society on its part, influence self through shared language and meanings that enable a person to take role of the other, engages in social interaction and reflects upon oneself as an object. Based on this, they assert that the nature of self and what individuals do depends to a large extent on the society within which they live. --- Co-operative Social System Approach: This approach recognises the understanding that subunits of social system does not exist in isolation of each other, but influence and interact with each other to enable achievement of goals . In the same vein, demands of the group, the structure, and other environmental variables moderated individual behaviour. The main concern of this approach was the recognition that there is physical and biological limitation of individual that necessitated them to co-operate. This is derived from the work of Chester Bernard who is seen as the father of the social system approach. Bernard developed a theory which recognises human limitations and is based on co-operation. This cooperation is the basis for collaboration among employees in departments and organisations in a bid to addressing employee well-being through networking efforts. This is because what affect employee in one workplace may likely affect them to a large extent in the other workplace if they operate in the same environment. --- Employee Well-being at Workplace This is regarded as part of an employee overall wellbeing that is determined by the work and is influenced by intervention at workplace. The international labour organisation relates Page: -250 -workplace well-being to all aspect of working life from the quality of the physical environment, to how workers feel about their work, their working environment, the climate at work, and work organisation. Employee well-being is a key factor that determines long term effectiveness of an organisation. Elsewhere studies have link productivity level and general health to employee well-being in the workplace. Well-being is defined as the extent to which the level of positive affect the level of negative in an individual's life . According to Grant et al., employee wellbeing is composed of three dimensions namely: health well-being, happiness well-being and relational well-being, which is otherwise called social well-being. The health well-being described well-being in terms of bodily and mental health and functioning. Happiness well-being is viewed in terms of workers subjective experience. The relational well-being associated well-being to a result of perceived quality of workers interactions with other people and other communities . The knowledge of the human relations guides the quality of interactions among the workers in the workplace. For organisations that do not allow their workers to unionised, their wellbeing is affected because the desired quality of interaction is hampered. There are also several views as it regards the conceptualization of employee well-being. Danna & Griffin argued that the general conceptualization of well-being is vague. Warr provided a review and examination of wellbeing using health as a framework. He suggested that affective well-being is an aspect of mental health; the other components are competence, autonomy, aspiration, and integrated functioning. The affective well-being is seen as similar to the primary medical criterion of ill or not ill and found to be a multi-dimensional construct . This is what Grant et al regarded as health well-being. The employee well-being in this study is discussed in three ways: health well-being, subjective or happiness wellbeing and relational well-being. Health Well-being: This is described in terms of bodily and mental health and functioning . Conrad as cited in Danna & Griffin stated that workers spent one-third of their waking hours at work and do not necessarily leave the job behind when they leave the work site. There is also a growing concern about workplace characteristics that affect the health of workers such as health and safety practices by organisation , work design issues associated with ergonomics , other environmental challenges like the case of the Soot in Port Harcourt and its environ in recent times. All these affect the health well-being of employees since they cannot abandon their job and leave the city because of the Soot. Organisations structured or designed not considering the employee well-being affects the health of the workers. --- Subjective or Happiness Wellbeing: As earlier stated, this is described in terms of worker's subjective experience . Diener as stated in Danna & Griffin , subjective well-being is used to describe a person's overall experience in life and suggested that it essentially reflects a person self-described happiness. This explains that there is a dynamics surrounding the measurement of subjective wellbeing. The first was that well-being is defined in terms of external criteria as "ideal condition" that differs across culture. Secondly, subjective wellbeing is seen as life satisfaction. This is because researchers bid to evaluate what is regarded as a positive life assessment discovered that subjective form of happiness has a global assessment in terms of the quality of one individual's life as guided by the individuals own set of criteria. This is to assert that the individual determines what makes him happy. Thirdly, the meaning of happiness is used to show positive effect such as being energetic, excited and enthused over anger, disgust, guilt and Page: -251 -depression which are regarded as negative effect . --- Relational Well-being: This is regarded as a relational construct . McGregor, Morell, Matsuoka, & Minerbi, study in Hawaii on rural indigenous communities clarified the construct as a relational construct encompassing all dimensions of human ecology , inclusive of family unit, ancestors, the physical and natural environment, extended family, adopted family, community, society, culture and the world. These factors or variables are interdependent and relational . They regarded community as an important element of relational well-being. They believed that through community values and beliefs shared, economic development are nurtured, cultural and spiritual practices nurture a sense of security, predictability and sense of life. This to an extent determines the quality of interactions of workers with others and the community, . In the same vein, Gericke studied relational well-being and levels of psycho-social well-being. The study was intended to unlock strength, improve the quality of human life and well-being, and promoting optimal functioning. The findings show a great deal similarity in the types of most important relationship for both group of high and low levels of psycho-social well-being. It was concluded that relational well-being is an integrated, complex and interweaved phenomenon in which vertical and horizontal relationships are integrated on various levels -with differences in dynamics of high and low well-being groups. --- Nexus between Interpersonal Approaches and Employee Well-being According to Harsson & Jornfeldt health and well-being, focus on interpersonal relations and is critical. In order to promote human freedom, every relationship is expected to be built on respect for the inherent value of each person and willingness to support each person's strength and abilities, and interpersonal relations have to be built on mutual respect for each other's knowledge and life experiences . This make it necessary, the consideration of the whole person be it the physical, psychological, social and spiritual needs . A study conducted by Lindgren & Barker-Ruchti who study some Sweden established how a sample of female Swedish national foot-ball coaches describe how they carefully manage interpersonal relationship with respect to well-being of their players as they face social and organisational pressure to win competition. Angrave & Charlwood study the relationship between long working hours, over-employment, under-employment and the subjective well-being of workers which is otherwise called happiness wellbeing. The results of the findings suggest that long working hours do not directly affect subjective wellbeing, but in line with theories of personenvironment fit, both over-employment and underemployment are associated with lower subjective well-being. They also assert that organisational policies that reduce the incidence of long working hours are likely to enhance aggregate well-being levels. If the well-being of employees is better it will reduce complaints and enhance performance which will contribute to repositioning the economy of an organisational and societal level. In another study, Tomljenomic studies the effects of internal and external environment on health and well-being from cell to society. The study established that disease is not just a personal or family problem. It reflects on the working place and the economy. It shows in the number of sick leaves owing to depression experience at the workplace. Even if worker are not on sick leave, if their wellbeing is not attended to their working enthusiasm and productivity will certainly diminished. The study further argued that an unhealthy environment during the period of time such as exposure to chemical toxins, toxic food, toxic drinks, toxic relationships, toxic working atmosphere, and stress, people go through developed different symptoms and diseases affect the well-being. And that some Page: -252 -people will develop systemic disorders which still others are going to develop mental disorder . This certainly affects the individual, workplace and the economy of a given nation. The above view shows that when the workplace environment is not conducive for worker, it affects their health well-being. At such times the human relations quality is diminished. It also shows a relationship with the psychological approach to interpersonal relationship. This nexus is supported by Baridam view that stated workplace equipment design, lightening arrangement, ventilation and other working conditions are to be fixed without impairing the health of the workers. This indicates that the psychological approach to interpersonal relations also have relationship with employee well-being. The knowledge of the psychological approach helps those who structure the workplace to put the employees at the centre of such design since their well-being is paramount to the success of any workplace. The psychological approach shows the uniqueness of the individual employees. The Sociological approach shows groupness. The co-operative social system approach recognizes co-operativeness which can mitigates the individual employee limitations. The human relations approach recognizes socialness which is liken to Abraham Maslow's social needs of an individual. Therefore, workplaces and nations that want repositioning must recognise the uniqueness of their employees, their abilities to join groups, their socialness and cooperative abilities in the face of challenges as to overcome such identified challenges. --- CONCLUSIONS A critical look at the nexus between the interpersonal approaches and employee well-being in the workplace indicated the existence of such relationship. The knowledge acquired by workplace managers from interpersonal approaches to management thoughts and philosophy help in structuring the workplace. It also helps in equipment design, office and factory lightening system arrangement, the ventilation and other working conditions . The psychological approach to interpersonal approaches as asserted by Dessler recognized the uniqueness of an individual in the workplace. Therefore, such should be considered in addressing the employee well-being in the workplace. The cooperative social system approach gives room for cooperation in relationship among employees in the workplace. The knowledge of human relations approach helps managers to address employee well-being issues in the areas of health, subjective and relational or social. Therefore, the various spheres of interpersonal approaches such as: psychological approach, sociological approach, human relations approach, and co-operation social system approach in their different ways influence employee well-being. This well-being either as health well-being, subjective well-being and or relational well-being is influenced by the interpersonal approaches. --- RECOMMENDATIONS The following were recommended based on the review of related-literature in the study: ---  Workplace equipment design, office and factory lightening system, ventilation, and other working conditions should be fixed in such a way that it will not impair the health of employees but recognize their uniqueness. ---  Workplace managers should take serious medical condition of their employee since diseases conditions lead to depression aggravating case of sick leave which affect performance and productivity level of employees.

This research paper examines the nexus between the interpersonal approaches and employee well-being in the workplace in Nigeria. The interpersonal approaches examined were: psychological approach, sociological approach, human relations approach and co-operative social system approach. The employee well-being examined was the health well-being, subjective (happiness) well-being and relational (social) well-being. The study revealed that there is relationship between the interpersonal approaches and employee well-being. It was concluded that adopting the interpersonal approaches will help to achieve employee well-being in the workplace. Based on the above, it was recommended that management and entrepreneurs should take the issues affecting the well-being of employees seriously since it affects the health, happiness, and quality of interactions amongst employees. And also poor well-being affects employee performance and productivity levels; therefore it should be avoided in the workplace.

Introduction Although a frequently sought healthcare procedure, abortion can be very challenging to obtain in the U.S. Barriers include a sociopolitical landscape of abortion restrictions and clinic closures, deep-set cultural stigma, and difficulty traveling to the nearest abortion clinic [1]. However, one of the most powerful obstacles to abortion care is cost [2,3]. Three years after 1973 s Roe v. Wade decision, Illinois Representative Henry Hyde and colleagues attached a cost-related provision to the appropriations bill for the Departments of Labor, Health, Education, and Welfare . Widely known as "the Hyde Amendment", this provision ended federal funding, including Medicaid funding, for abortion. In the years between Roe's passage and the implementation of the Hyde Amendment, approximately one in three abortions were paid for by Medicaid [4]. This large proportion of clients using the public safety net to pay for abortion services is consistent with literature documenting that poverty is strongly associated with unwanted pregnancies [5]. Seventeen states now allow state-level Medicaid dollars to cover abortion services [6]. However, most reproductive-age people in the U.S. live in places where publicly subsidized healthcare covers prenatal and birthing care but not pregnancy termination. Even where coverage is available, challenges in navigating the Medicaid system can lead to delays in abortion care or inability to receive care altogether [4]. In one study, individuals in states that restrict Medicaid funding for abortion were more likely than their counterparts in Medicaid-covered states to still be seeking abortion services one month after study baseline [7]. Recent legislation has imposed increased abortion-related restrictions on private insurance as well. While costs vary, the typical price tag for both surgical abortion and medication abortion in the first trimester usually falls between $500 and $1000 [8,9], with the average medication abortion price hovering around $550 [10]. Second trimester costs are significantly higher [9]. However, those procedure fees do not include attendant transportation, childcare, or other costs such as loss of wages or potential job loss from taking time off from work. Such concomitant costs may be especially significant for those living far away from a clinic-a population that has swelled as abortion healthcare facilities have closed nationwide [11]. Many states require 24-72-h waiting periods and unnecessary multiple clinic visits, which also compound abortion-related costs [12]. In 2019, 37% of Americans surveyed would not be able to cover a $400 unexpected expense on their own [13]. In the landmark Turnaway Study, the out-of-pocket expenses constituted one-third of monthly income for over one-third of abortion seekers [14]. Given lack of insurance coverage, an estimated 70-75% of patients pay out of pocket for abortion services [2,15]. Some financial assistance exists, either by way of grassroots abortion funds or philanthropic grants [8]. Moreover, financial assistance rarely covers all abortion-related costs, meaning that patients must still raise sizable capital. --- Limitations of Clinic-Based Research Regarding Abortion Cost Barriers Most research on cost-related barriers focuses on clinic-based populations-people who visited an abortion clinic. However, many who desire abortion services never get through the doors of a healthcare center, as extensive legal and attendant logistical barriers make in-person clinic access difficult. A large body of research documents that people seeking abortion face both formal and informal barriers, including lack of clarity about how to actually obtain services [16], significant travel distances [17], medically unnecessary clinical standards [18] and regulation that can contribute to clinic closures, and gestational limitations [19]. While it is difficult to quantify the full impact of these barriers, this cumulative evidence suggests that people who at least consider abortions never get to a clinic for desired services [16]. For example, in counties in Wisconsin that lost the greatest access to abortion services after clinic closures, researchers observed reduced abortion rates and increased birth rates, suggesting that at least some people who would have wished to access abortions were unable to do so [20]. In one study of people presenting for prenatal care at healthcare facilities, researchers found that approximately 30% had at least briefly considered an abortion, but only 2-3% had visited an abortion clinic [21]. Documenting real-time versus retrospective reports of obstacles before people get to a clinic, if ever, is a critical contribution to the evidence base regarding the burdens of payer cost restrictions. Quantitative surveys and other close-ended research methods can generate highly valuable data about the prevalence of cost barriers. However, they are not equipped to communicate the ways in which abortion seekers deal with healthcare costs nor the urgency or intensity of these cost barriers. Qualitative data collection can illuminate more elaborate domains of people's pre-abortion experiences, highlighting the ways in which health policies manifest in people's lives. Moreover, qualitative analysis of existing data can highlight what matters most to individuals themselves without inserting pre-formulated research questions or concepts. Qualitative analyses of anonymous social media fora hold promise for such a study. The overwhelming majority of U.S. adults access health-related information online [22], including information about abortion [23]. Reddit is a website of user-aggregated content dispersed over two million user-created and monitored message boards. Approximately one-quarter of the U.S. young adults use Reddit [24], and in December 2020, just prior to data collection for this study, Reddit was the seventh most visited website in the country [25]. Given the benefits of copious, anonymous, real-time accounts of people seeking abortions, we set out to document cost-related barriers to obtaining desired abortions by analyzing a novel dataset of Reddit posts. --- Materials and Methods --- Reddit as an Emerging Qualitative Data Source Reddit-based data collection has a number of advantages, including its widespread use, gratis nature, and abundant personal narratives that researchers may miss with more traditional data collection modes such as surveys or interviews [26]. The anonymous nature of Reddit makes it especially well-suited for studies of socially stigmatized experiences [27] such as abortion. Researchers have used Reddit data to examine a variety of health-related topics, including vaccines for human papillomavirus and prenatal testing [26,28,29]. --- Data Collection Using Python, researchers web-scraped 250 posts from reproductive-health-related sub-Reddits, which are topic-based message boards. Investigators scraped these posts on 12 February 2020 with posts occurring between 29 January and 12 February-just before COVID-19-related lockdowns. We selected 250 as an N based on prior Reddit research [27] and later reached theoretical saturation within the first 200 . During the scraping and database-creation processes, investigators removed all identifying information, including posters' usernames. The study team excluded posts from outside the U.S. We transferred the posts to NVivo , which is a qualitative analysis software package. Since all posts were anonymous, not linked to IP addresses, and in the public domain, we did not seek explicit consent from Reddit posters. This study was approved by the University of Wisconsin-Madison's Health Sciences Institutional Review Board . --- Analysis We employed a qualitative descriptive approach in that we used data to describe posters' experiences versus using data to build theory or imbue descriptions with theoretical meaning [30]. We also used a combined inductive and deductive approach: we analyzed data based on our original research questions and hypotheses as well as codes and themes that arose from the data themselves [31]. Our qualitative team represented two PhD-level researchers with significantly qualitative research expertise and two masters-level researchers with qualitative training and prior experience. These four study team members independently read a random subset of posts, prepared lists of emerging themes, and met to discuss and refine these themes into potential codes. These codes augmented the list of pre-established concepts identified by the investigators' research questions and the existing literature. Once reaching thematic agreement, we created a codebook with code names, definitions, information on when to apply, and illustrative quotations. A few additional themes emerged during the coding process, and investigators circled back to recode prior posts accordingly. The final codebook contained 26 codes. Three members of the study team systematically coded each post within NVivo 12. They first independently coded 25 posts; then, they met to resolve discrepancies and refine consistency in code application. Once they achieved interrater reliability of greater than 80%, measured using an Alpha score in NVivo, team members singly coded the remaining posts. Coders met weekly to discuss questions or confirm codes. They stopped coding after 194 posts, as they had reached theoretical saturation. We analyzed all cost-related coding reports, which are documents containing every single appearance of a code in the dataset. Coding reports included "logistical aspects of abortion experience," "more general barriers to abortion," and "factors influencing method choice." We also searched the larger dataset for posts using any of the following terms: money, finances, expensive, cost, afford, $, dollar, and insurance. Then, the first and second author independently read all the above reports, made notes on themes, and met to discuss. The second author systematically reviewed the reports and identified all quotations supporting each of the main concepts. The first author wrote up memos with preliminary descriptions and illustrative quotations for each theme; then, they shared with all other authors to review and refine. The final vetted four themes appear below. --- Results Approximately one-fourth of the 194 posts included in this analysis mentioned some sort of financial constraint in people's abortion-seeking processes. Analyses revealed four coherent and well-statured themes related to abortion cost. --- Inability to Secure Funds for Abortion Services and Transportation Most commonly, posters described inability to secure the funds needed to obtain the abortion. The following quote illustrates barriers to procedure costs themselves: said it would be $550. I haven't been able to come up with that due to bills and finding out so late. I've been applying for loans but my credit score is 500. By my appointment time I will be 8 weeks along. What have you done when you need money quick? Another example highlighted the emotional costs of such funding challenges: was no help. I was essentially turned away because I hadn't heard back from the funding assistance places they'd told me about, and I was too broke to be able to afford any of the procedures. I felt stuck, powerless, and defeated. Reddit users also struggled to afford the transportation costs necessary to obtain abortions-particularly for those living significant distances from the closest provider. These costs exacerbated the financial burden of the procedure itself. I don't have a car and the nearest abortion clinic is six hours away. I just began my new job and I couldn't afford to pay someone to drive me or the $500 fee. --- Insufficient Funds to Select Desired Aspects of Abortion Services In a related theme, while some were able to raise sufficient funds for the abortion procedure itself, they were unable to afford their desired abortion modality or certain aspects of service delivery such as sedation. Tomorrow I go to the clinic to take my first pill for medical abortion. As of Saturday when I take the second set of pills, I will be 10 weeks along. I am very nervous about having the procedure this late, but the surgical option was not financially viable for me. I can hardly afford the medical termination. Another person had successfully obtained a medication abortion but could not afford the recommended after-procedure ultrasound: It's been three weeks since I had the abortion, all pregnancy symptoms are gone but I haven't had money for an ultrasound so I took a urine pregnancy test and this test has a very very faint second line. Could it be because my HGC is dropping low? Is it normal? Finally, one Reddit user not only had to forgo sedation, but they were forced to wait longer than desired for their abortion, which was a delay with an attendant emotional toll: I don't qualify for financial assistance at . I'll have to postpone another week-I have a second appointment the following week through my insurance. The surgical will cost me $400 and does not include sedation of any kind . But, worse than the cost and lack of sedation is the fact that I'll have to endure this pregnancy for an entire week longer . . . and I'm literally at my breaking point. --- Insurance and Administrative Hurdles Create Unique Barriers In a third theme, as the quotation immediately above suggests, even those with coverage from private or public insurance reported challenges in navigating payment procedures. The logistical hurdles of paying for an abortion with insurance in some cases could be as cumbersome as self-funding. These challenges affected both the ability to obtain desired abortions and the ways in which people were able to do so, including the timing of the procedure. Such payer-related obstacles included bureaucratic red tape, potential violations of privacy, and restrictions on covering abortion procedures altogether. For example, one poster had private insurance that failed to cover abortion. Thus, they were hustling to sign up for other coverage in time-which likely prevented them from receiving their abortion in a timely way if at all. My appointment is tomorrow, and I found out Friday afternoon that my insurance won't cover the abortion . I read somewhere that I could apply for a temporary Medical-Cal but I can't find much info on how to get it and how quickly I can receive it. As a pregnant woman, will I automatically qualify for it? The following Reddit user was able to get on Medicaid due to their pregnancy but was unsure whether their abortion would be or could be covered. Lack of coverage would have left this person to come up with funds that may not have been available. This person also worried about potential payer backlash: I'm going to have the aspiration procedure done on Saturday morning. I had Medicaid approved here in Florida because of pregnancy. Now I'm confused. I previously posted that I'm having to terminate due to my baby having anencephaly. Has anyone been through this? Do you call them and tell them what happened? How long after do they cancel your Medicaid? And if you ever get pregnant again are you blacklisted or something? I'm just scared and nervous and want to make sure I can go to my follow-up appointment after the procedure. As with all other themes, insurance-related challenges could also be exacerbated by abortion stigma, which frequently discouraged people from seeking financial support from family members or friends. I do have health insurance. It's just that I'm under my parents' plan and there is absolutely no way I can let them know about this. If anyone could help me it would be greatly appreciated. I'm terrified. My boyfriend and I are living paycheck to paycheck, so I can't afford anything over $500. I don't know what to do. --- Relying on Self-Managed Abortion Options Due to Cost Barriers In a fourth and final theme, people reported how the inability to afford in-clinic abortion services led them to self-managed, outside-the-system abortion venues. While self-managed abortion can be safe, and while some abortion seekers may prefer it to inclinic services, the Reddit posts we analyzed described people who might have preferred in-clinic procedures if payment was not a barrier. For example, several reported using Aid Access, which is a non-profit organization based in the United Kingdom that provides access to medication abortion by mail to the U.S. and many other countries. While Aid Access is not free, the cost is displayed clearly online, paid upfront, and logistically straightforward. I used Aid Access to terminate my pregnancy because I couldn't afford $500+ for the abortion counseling appointment and medical abortion. I didn't qualify for aid because my finances look good on paper. But they don't take into account your rent, health insurance, car payment, student loans, etc. Another Reddit poster shared a similar example of obtaining abortion pills by mail: I decided to hide from my parents and sister-basically, everyone except my boyfriend. Because I had only him, and he didn't have a job at this time or a car, I knew my options were limited. I had enough savings to go to Planned Parenthood, but it would have depleted my bank account, and we probably wouldn't be able to get to appointments. So I took the cheaper and easier way, and I ordered mifepristone and misoprostol from overseas. This person estimated that they were already 10 weeks pregnant by the time they received the medication, which was "cutting it close" to the gestational limit for this abortion modality. They had waited for 23 days to receive their Aid Access package, reporting that the pills were "inbound into customs" for more than two weeks. Medication abortions after 10 weeks gestation are associated with heavier cramps and bleeding and greater risk of complications than with earlier gestations. More concerningly, some Reddit users with few financial resources were considering or inquiring about self-managed abortion techniques that are unsupported by clinical research and that may be both ineffective and harmful. I'm not financially fit, mentally ready... but I can't afford abortion pills. And the closest Planned Parenthood is over 4 hours away... I'm scared about this whole thing. Also someone told me they have animal misoprostol that might work but I don't think it would? Similarly: I've been using birth control however I didn't realize one of my medications may make it ineffective. My insurance doesn't cover abortions unless a physician says I was raped and my bank account is joint with my husband who I'm pretty sure would try to talk me out of aborting. Could I use diclofenac ? Someone told me it's basically misoprostol. --- Discussion In this study of Reddit posters, we found multiple financial barriers faced by people seeking abortions. These barriers led to delays in service as well as inquiry into self-managed abortions. While resonating with prior literature [9,15,32], this cumulative analysis captured anonymous sentiments posted by abortion-seekers online, in real time, versus during retrospective data collection. Moreover, we documented cost-related challenges before individuals ever entered an abortion clinic-if they were able to do so at all. Some posters described self-managed techniques versus clinical venues for abortion care. While receiving and using medication abortion by mail can be safe, effective, and affordable [33,34], it is not legally sanctioned in the U.S. While some people seeking abortion may prefer mail-based services to abortion clinics even if they can access and afford both, Reddit posts documented that the costs and logistics of in-clinic abortions may back people into illegal services such as Aid Access. We mention the illegality of self-managed abortion through Aid Access not to cast pallor on what is a safe abortion modality, but to highlight that people using these methods may be at risk for criminal or legal retribution. Moreover, some posters were looking into supposed abortifacients such as pain medication or veterinary products that are not clinically proven and potentially dangerous. These posters tied their consideration of these self-managed options to the high cost of, and poor access to, in-clinic abortion services. In this way, our study found that people implicated cost-related challenges when they could not terminate their pregnancies when they wished to or how they wished to, in some cases leading to consideration or use of illegal or potentially dangerous self-managed abortion modalities. While this analysis focused primarily on cost hurdles, it is important to consider these hurdles within the context of other obstructions to desired pregnancy termination [1,35]. One major contextual factor is the intersection of structural disadvantage with abortion. People most likely to experience unwanted pregnancy and most in need of financial assistance for abortion services often face multiple structural hardships, including poverty, racism [5], homelessness [32], mental illness, and substance use [36]. Disruptive life events such as job loss and housing evictions also exacerbate the ability to secure funds and obtain abortion services quickly [37]. In other words, cost barriers are hardest for the most socially and structurally disadvantaged and people in our country, placing abortion out of reach for some and instead leading to live births. In another important contextual factor, the landscape of state-level abortion restrictions other than state Medicaid restrictions work synergistically to exacerbate cost challenges. In many states, patients must make multiple trips to a facility due to mandatory waiting periods, which are required of virtually no other outpatient healthcare procedure save for tubal ligation . People living significant distances from a clinic, those with children, and those working in low-wage jobs are especially encumbered by such waiting periods. Non-evidence-based laws mandate heavier regulation of abortion clinics than other outpatient care settings, forcing some clinics to close their doors under the regulatory and financial encumbrances involved [38]. When combined with the cost-related barriers outlined here, these restrictions cumulatively stymie reproductive autonomy by putting pregnancy termination services out of reach for many. --- Public Health Implications: The Potential Impact of, and Building Momentum for, Overturning Hyde Given this daunting landscape, no one solution will guarantee abortion access for all. However, cost-related policy change is critical [1]. Repealing the Hyde Amendment and other payer restrictions on abortion would significantly help lower-income individuals obtain desired abortion services [39]. Hyde and state-level prohibitions on public funds for abortion inordinately harms people who rely on public insurance for healthcare coverage, creating a separate system of care that privileges those who can afford out-of-pocket costs or who live in states that do allow state Medicaid funding for abortion. Those who cannot afford out-of-pocket costs often obtain abortions later in gestation or forgo abortion altogether [7]. Furthermore, a disproportionate amount of the estimated seven million people impacted by the Hyde Amendment are people of color, further entrenching reproductive health inequities [40]. Politicians almost universally express their commitment to retaining or overturning Roe v. Wade. However, the Hyde Amendment has long been absent from mainstream political platforms. Hilary Clinton was the first presidential candidate to publicly argue for Hyde's repeal. Current president Joe Biden historically expressed pro-Hyde sentiments but changed this opinion during his latest campaign, saying "I can no longer support an amendment that makes the right dependent on someone's ZIP code [41]." Progressive politicians and reproductive health research and policy organizations have made increasing calls for the removal of payer restrictions on abortion [3,6]. In July 2020, Representative Ayanna Pressley of Massachusetts introduced an amendment to repeal Hyde from the HHS funding bill [42]. In December of 2020, the House Appropriations Labor, Health, and Human Services Subcommittee held a hearing to discuss the effects of the Hyde Amendment, specifically as it affects gender rights and economic security [43]. However, staunch opposition to the Hyde Amendment remains intact [44,45]. In January 2021, a group of 200 House Republican lawmakers signed a letter vowing not to support any funding bill that includes language permitting the use of federal funding for abortion [45]. In 2021, the President's budget and subsequent House spending bills did not include the Hyde Amendment. While not yet repealed, Hyde had not been formally reconsidered in this way since its initial passage in 1976. However, even if the amendment is removed from the federal budget, significant changes in the Medicaid program will be required before Federal Medicaid coverage extends to abortion [46][47][48]. --- Limitations Although Reddit provides both copious and gratis data, the information posted can be thin-sometimes just a sentence or two, leaving us with less complete information than we would have obtained in in-depth interviews. Second, the comments in our dataset came from a convenience sample of self-selected individuals who might have had more reason than the average abortion seeker to focus on cost-related barriers; Reddit posters may be meaningfully different than the larger universe of people who desire abortion services. Third, by scraping usernames to protect people's identities, we risk a small chance that some separate posts may have come from the same individual. Fourth, we were unable to confirm if people encountering cost challenges were eventually able to procure their abortion, which is a phenomenon that left us open to conjecture versus confirmation. However, the aim of this study was not to determine if people can navigate financial barriers, but to more fully understand the dimensions of those barriers. Reddit data also enabled us to collect information from people who may never have participated in a qualitative research study through more traditional means. Our data demonstrate that many people seeking abortion services and advice turn to online sources such as Reddit, which are sources currently underexamined by researchers and health professionals alike. --- Conclusions Cost-related prohibitions are likely the largest obstacle to abortion access, especially for individuals who face the greatest social inequities. Even those who have insurance coverage face obstacles, which can delay if not avert procedures [4]. Findings from this analysis of anonymous Reddit posters suggest that cost barriers led some to consider illegal and, in some cases, harmful self-managed abortion techniques. We encourage public health scholars, practitioners, and leaders to emphasize the ill effects of abortion cost restrictions-in particular, how the Hyde Amendment impedes low-income individuals' ability to exercise their right to abortion care and reproductive autonomy. Despite the bleak context of many of these posts around the costs of abortion services, our group's ongoing work with these data examine the posters' community and support for each other on Reddit, which is an online forum that allows people an anonymous space to discuss an otherwise stigmatized topic. Future abortion research and advocacy would benefit from further engagement with online sources [49], especially social media, where people seeking abortion turn for support and information. Informed Consent Statement: As all posts were anonymous, not linked to IP addresses, and in the public domain, we did not seek explicit consent from Reddit posters. ---

Objective: The Hyde Amendment and related policies limit or prohibit Medicaid coverage of abortion services in the United States. Most research on cost-related abortion barriers relies on clinicbased samples, but people who desire abortions may never make it to a healthcare center. To examine a novel, pre-abortion population, we analyzed a unique qualitative dataset of posts from Reddit, a widely used social media platform increasingly leveraged by researchers, to assess financial obstacles among anonymous posters considering abortion. Methods: In February 2020, we used Python to web-scrape the 250 most recent posts that mentioned abortion, removing all identifying information and usernames. After transferring all posts into NVivo, a qualitative software package, the team identified all datapoints related to cost. Three qualitatively trained evaluators established and applied codes, reaching saturation after 194 posts. The research team used a descriptive qualitative approach, using both inductive and deductive elements, to identify and analyze themes related to financial barriers. Results: We documented multiple cost-related deterrents, including lack of funds for both the procedure and attendant travel costs, inability to afford desired abortion modality (i.e., medication or surgical), and for some, consideration of self-managed abortion options due to cost barriers. Conclusions: Findings from this study underscore the centrality of cost barriers and third-party payer restrictions to stymying reproductive health access in the United States. Results may contribute to the growing evidence base and building political momentum focused on repealing the Hyde Amendment.

Introduction Mask Lab, a stylish face-mask franchised store, was opened at the Central district in Hong Kong in December 2020, in the neighborhood of high-end condominiums, luxury hotels, and upscale shopping malls. Being tailored toward a lifestyle theme, Mask Lab can be regarded as a new form of "concept stores," which blends "art, design, and fashion into a shop" so as to create a "destination shopping experience" . Different from regular blue or white colored surgical masks, masks sold at Mask Lab are of different colors and styles, appealing to personal qualities of discernment. Similar popular mask stores, self-branded as Mask Factory, Mask Gallery, Face-mask Closet, and so on, are popping up in commercial districts in Hong Kong, which would have been unthinkable before the COVID-19 pandemic. The emergence of these stores suggests that the role of face-masks has evolved from functional to symbolic, which not only serves the purpose of protection, but also that of individual identity expression and lifestyle choice. The functional and symbolic distinction can be used to categorize the proliferated studies on face-mask in the past year or so. The majority of studies investigate the wearing of face-masks as a protection and precaution measure from the perspective of science and focus on the functional values of the practice such as protection efficacy and This is the accepted version of the publication Wang Y, Feng D , Ho WYJ. Identity, lifestyle, and facemask branding: A social semiotic multimodal discourse analysis. Multimodality & Society. May 2021. Copyright © 2021 ). DOI: 10.1177/26349795211014809 effectiveness and public health measurement . In comparison, research of the symbolic values of face-masks is still in its infancy. Only few studies focus on the meaning potentials of face-masks, and how they are used to perform cultural identities. For example, Leone's study of the anti-COVID-19 mask developed a cultural semiotics of the medical mask in the West and discussed the evolving functions of face-masks from "traumatic medical intervention on and in the body" to a sign of "potential contagion by the environment" . Another attempt to explore the semiotics of face-masks is Ho , who investigated how the practice of wearing face-masks indexes cultural identities in YouTube videos and gave an example of Chinese learners from "western" countries filming videos in Chinese as a means to align themselves with "East Asian" face-mask cultures. In the context of Hong Kong, as citizens are entering the second year of mask wearing, it is interesting to investigate the symbolic meanings face-masks have acquired and how the meanings are exploited by local face-mask producers to promote their products. Premised on the assumption that the design of products can communicate clear messages about identities , we attempt to analyze how face-masks are branded as a vehicle for self-expression in Hong Kong. Specifically, we address the following three research questions: what symbolic meanings are designed by local face-mask brands to promote their products, how are the symbolic meanings realized through the deployment of linguistic, visual and material resources, and what do these symbolic meanings reveal about branding practices in the socio-cultural context of Hong Kong. In what follows, we will first introduce our theoretical foundation of neoliberalism and emotional branding. We will then describe our data and analytical framework, which will be followed by a multimodal analysis of the branding discourse of facemasks. Finally, the results will be discussed in relation to the neoliberal socio-economic context of Hong Kong. --- Neoliberalism, emotional branding, and face-mask branding in Hong Kong The face-mask branding practice under investigation is situated in the neoliberal socioeconomic context in Hong Kong. Seeking to recontextualize all parts of society to the logic of the market and trade, the neoliberal ideology is "fundamentally the drive for marketization as the principle basis for social organization" . Harvey argues that neoliberalism is "a theory of political economic practices that proposes that human wellbeing can best be advanced by liberating individual entrepreneurial freedoms and skills within an institutional framework characterized by strong private property rights, free markets, and free trade." In the particular context of Hong Kong, which this study is concerned with, there has been a high commitment to neoliberal economic models since the 1980s . It is widely believed that Hong Kong is a land of entrepreneurial opportunity where hardworking and talented neoliberal subjects can succeed in business . Under the influence of neoliberalism, capitalist market principles, especially free competition, have penetrated into all spheres of social life in Hong Kong. As Harvey points out, "the coercive laws of competition […] force the continuous implementation of new technologies and organizational forms, since these enable capitalists to out-compete those using inferior methods." To succeed in a competitive neoliberal environment, it is far from enough to satisfy consumers' functional needs, and brands have resorted to forging emotional linkages between products and potential consumers, which constitute one of "the key markers of 'class' and also the ideal weapon in strategies of distinction" . The notion of "emotional branding" is proposed to describe the creation of "a holistic experience that delivers an emotional fulfillment so that the customer develops a special bond with and unique trust in the brand" . In other words, emotional branding is concerned with the exploitation of symbolic meanings that appeal to consumers' "emotional states, needs and aspirations" and inspire their personal life stories, memories, and passion. For example, Carroll and Ahuvia introduce the concept of "brand love" to highlight the importance of establishing emotional connections with consumers. This concept includes the territories of mystery , sensuality , and intimacy . In the analysis of US brand culture, Gobe has identified three stages of emotional branding, that is, the Pragmatist Age , the Evangelist Age and the Sensualist Age . Emotional branding in the Pragmatist Age emphasizes the performance of certain products or services; the Evangelist Age branding practice is underpinned by the philosophies of social justice, economic equality and sensitivity to the environment; the Sensualist Age is lifestyle-oriented and tends toward hedonism, glamor, and self-expression. Wu and Li argue that instead of exhibiting a developmental divide as suggested by Gobe , all three characteristic appeals of emotional branding co-exist in global corporations' emotional branding discourse, and they observe the hybridity of these appeals, which indicates "the extent of multi-valued emotional branding" (p. --- 238). Emotional branding is realized not just through language, but also through multimodal semiotic resources like visual images and music. Multimodality and social semiotics have been effectively used to analyze emotional branding strategies adopted by multinational companies . For example, Saviolo and Marazza explored how Apple had transformed from a technology company to a lifestyle brand through using the famous "bitten apple" logo, post-modern store design, and visionary leadership stories. Faiers investigated how a luxury perfume brand exploited the "eternally lucrative myth" to feed into middle-class aspirational fantasies. The study found that the symbolic values of desire and aspiration constituted the "fragrance's rarest of ingredients, their linguistic riches far surpassing the supposed costliness of its chemistries" . Ledin and Machin's social semiotic analysis of kitchen designs in IKEA catalogs over a period of 40 years suggested a shift from function to lifestyle. Their study illustrated how the domestic space has become increasingly codified into indexical meanings which form a neoliberal ideal, with highlights on self-management and innovation. The branding of face-masks in Hong Kong has also shifted from an emphasis on functions to an emphasis on symbolic cultural characteristics during the COVID-19. Developed as a biomedical response to the SARS outbreak in 2003, the practice of mass-masking has gradually become a socially-embedded, protective practice "that responsibilize[s] individual health protection" . After the outbreak of COVID-19 in Hong Kong, face-mask wearing has become a form of social obligation, rather than personal choice . According to the Prevention and Control of Disease Regulation promulgated by the Hong Kong government, a person who contravenes the requirement of not wearing mask at public place commits an offense and is liable to a penalty of $5,000 HKD. As facemasks Accepted Version. In Multimodality andSociety, 2021. DOI: 10.1177/26349795211014809 are worn by everybody on a daily basis, they have become an accessory for identity performance and a way of constructing distinction. The ubiquity of face-masks also motivates brands to exploit the symbolic meanings of face-masks in branding their products. Like high-end fashion retailers, local mask brands routinely search for new trends in the field, introducing new items and replenishing stocks on a weekly basis. --- Data and analytical method The data we analyzed were selected from the four most popular local face-mask brands, that is, OxyAir Mask, LionRock Mask, MaskOn Gallery, and Mask Factory . As the symbolic meanings associated with face-masks are expressed through complex semiotic resources in various discourse forms, we conducted a holistic multimodal analysis of face-mask design, e-shop websites, product packages, and offline franchised stores, rather than just focusing on face-masks themselves. This complex signifying process involves an orchestration of resources which forms a multimodal ensemble. In Kress' conceptualization of multimodal ensembles, he referred to his multimodal and multisensory experience of crossing the road and watching inflight safety demonstrations, both of which required him to take in sound, sight and gestures to form a holistic experience. This is also the case for purchasing face-masks, which we argue involves an orchestration of different signs to form a holistic whole. These different signs, as we will demonstrate in the analysis, work together toward the symbolic branding of face-masks. The whole experience of purchasing face-masks from visiting the shop, to unpacking face-masks from their packages and reading about them on the Internet, is a result of careful orchestration of resources-a multimodal ensemble which is also a multisensory, transmedia experience. Face-masks are designed in different colors and different print patterns. The facemask websites always include the brand's corporate missions , details of their products, and links for purchase. Product packages include instructions on how to use the facemask, quality standard, and marketing slogans. As for offline franchised stores, they are always interspersed into downtown commercial districts, alongside or inside upscale shopping malls . Our analytical method draws on the basic principles of social semiotics, which focus on the elements of signification, connotative/cultural meanings and historical contexts . Social semiotics is not only concerned with text-level analysis, but also the understanding of how communicative practices are implicated in broader social processes. From a social semiotic perspective, the symbolic values of face-masks are not "transparent"; rather, they are the result of complex signifying processes, and should be interpreted based on a systematic analysis of the multimodal discourse. Drawing on Ledin and Machin , we will focus on the following five dimensions to map out the multimodal realization of the symbolic meanings of facemasks. 1. Verbal resources of evaluation. We investigate both explicit and implicit evaluative expressions in the local brands' websites and product packages. Explicit expression refers to the use of attitudinal lexis to evaluate face-masks , while implicit evaluation refers to recounting facts or events that invoke a certain symbolic value. For example, to evaluate a facemask as stylish, the branding discourse may recount the fact that it is designed by a well-known designer or has been exhibited in a fashion show. 2. Iconography. We investigate the images, symbols, and drawings used on facemasks, their packages and websites, and the interior design of mask stores. The iconography can be represented through elements of participants and settings, Accepted Version. In Multimodality and Society, 2021. DOI: 10.1177/26349795211014809 which according to Machin are "particular carriers of connotation." 3. Typography. We look into how the brands' names, logos, and slogans are designed. To explore their meaning potentials, we particularly focus on the features of weight , regularity and flourishes . 4. Color. We investigate how the color scheme is adopted in both the product's packaging design and the store's interior design. The values include hue , brightness , and saturation or dilution. 5. Materiality. Materiality refers to objects that can be touched, how they are arranged, and the textures we infer from looking. We particularly look at the furniture, decorations, and light fixtures in the mask stores. As noted by Ledin and Machin , materiality allows us to "combine the visual with the haptic, with seeing and touching," and communicates aspects like manufactured versus natural, timeless versus transient, and solid versus fragile. --- Analysis Based on a detailed analysis of four local face-mask brands' products, websites, product packages, and offline franchised stores, we have identified three major values associated with face-masks, namely, professionalism, Hong Kong identity, and fashion lifestyle. In what follows, we will analyze how these branding appeals are constructed through verbal, visual and material resources. --- Professionalism Professionalism refers to local brands' emphasis on their expertise in face-mask production by framing their products as a symbol of advanced technology. Professionalism is mainly realized through technical explanations on product packages and the exhibition of the manufacturing process in face-mask stores. First, to highlight face-masks as an outcome of advanced technology, local brands offer technical explanations on product packages. They technologize the language by adopting a dizzy array of scientific-sounding terms and highlighting the result of technical measurements. To further increase the salience of the technical explanations, typographic resources of boldface and heavy fonts are used. As noted by Machin , with the association of "taking up spaces," the weight is closely associated with the meanings of authority and assertiveness. For example, in Figure 1, on the mask package, the letter "Type IIR" and the figure "99%" apparently carry more weight than other information, which reinforces the impression that the face-mask production is of high scientific standard. This branding strategy reflects a middle-class consuming ideology which associates "good masks" with precision and technology. In other words, technical jargon is used symbolically to communicate a sense of "sophisticated knowledge production" that goes beyond pragmatic functions. Second, in their face-mask franchised stores, local brands exhibit the process of manufacturing face-masks in professional, sanitary conditions. Situated in a noisy commercial site in Tsim Sha Tsui, Mask Factory is one of the most popular local face-mask stores in Hong Kong, often with Accepted Version. In Multimodality and Society, 2021. DOI: 10.1177/26349795211014809 shoppers queuing up for entry. Despite its modest-sized space, it has an on-site "factory" and invites its consumer-visitors to have a mini-tour and learn about the face-mask production process. The presence of machines and technical staff for visitors to see distinguishes Mask Factory from traditional mask stores. Serving as the "more-than-representational" materiality , the machines make symbolic references to the technology involved in the face-mask production. The technical staff who are in anti-bacterial medical uniform also speak volumes about the professionalism involved in the face-mask production. For example, although the technical staff in Figure 2 are fully aware that they are under the surveillance of consumer-visitors , they still appear to concentrate on their production task and "perform" professionalism. Aside from machines and staff, the store also displays technical data on the wall-screen. As shown in Figure 3, all the data are projected on the store's wall, revealing the clean room live status in terms of temperature, relative humidity, air quality, and productivity. By offering viewers "the greatest number of ideas in the shortest time and smallest space" , the data display is closely associated with the notion of clarity, precision, and efficiency. The transparency associated with the whole production process is novel to consumer-visitors, something most of them would not have access to in the consumption of other goods. They potentially act as free word-of-mouth advertising agents that bring networks of friends and relatives to visit the store and monitor the process of professional mask-production. Figure 1. An example of the standardized measuring units on the package . --- Hong Kong identity A remarkable feature of the face-masks under investigation is the exploitation of Hong Kong identity in their branding. This symbolic value is associated with what Gobe and Wu and Li call the "Evangelist" theme in the emotional branding discourse of global corporations, which draws upon shared social values of a community to build a positive brand image. The face-mask producers brand themselves as responsible entrepreneurs who started their business to serve the community during the crisis. This was partly prompted by the shortage of masks in Hong Kong at the start of the pandemic in the early 2020. The identity features that are drawn upon include the economic aspect of achieving self-reliance and the cultural aspect of promoting the Hong Kong spirit. Face-masks as a symbol of economic identity. The local face-mask brands advocate that setting up face-mask production lines in Hong Kong is an act to achieve self-reliance of resources in times of a global crisis. This view of self-reliance is deeply ingrained in the Accepted Version. In Multimodality and Society, 2021. DOI: 10.1177/26349795211014809 economic identity of Hong Kong, as many people, especially the older generation, witnessed the rise and fall of Hong Kong's manufacturing industry in the last few decades. To re-evoke consumers' pride in Hong Kong as a manufacturing hub between the 1960s and the 1980s, the origin of the locally produced face-masks is emphasized in the design of product package. For example, as shown in Figure 4, featuring the phrase "Made in Hong Kong under the Lion Rock," the mask brand implies a sense of pride in goods produced in Hong Kong. Apart from package design, the face-mask brands also use verbal storytelling to emphasize the glorious past in their "brand story" on their website. For example, as indicated in Extract 1, by suggesting that "the reputation of Hong Kong manufacturing has spread all over the world," the local brand celebrates the developmental success of the past, conjuring up a powerful sense of nostalgia among potential consumers. It also serves to justify setting up local face-mask factories, which is framed as an attempt to revive the past glory and to achieve self-sufficiency. The phrase "finding the past smile" in the extract has particularly interesting connotations related to Hong Kong identity that make the branding unmistakably emotional. On the surface, it can be argued that this phrase does not make sense because, ironically, when wearing a facemask, one's smile is concealed; however, reading it in the context of Hong Kong's past economy, it can be interpreted as associating face-masks with the search for the self-reliance and pride in the past. Extract 1. Since the 1950s, the reputation of Hong Kong manufacturing has spread all over the world. At that time, Hong Kong was internationally hailed as one of the "Four Asian Tigers"… Recently, due to the epidemic, we notice that Hong Kong has been too dependent on imported supplies. In times of crisis, it has no self-sufficiency at all, which forces us to rethink the possibility of reviving the manufacturing industry in Hong Kong… We hope to find the past smile with other Hong Kongers despite the difficulties. --- 從五十年代開始香港製造的聲譽影響遍佈世界各地，當時被國際稱譽為亞洲 四小龍之一…最近因為疫情的出現，我們發現香港一直太過依賴進口供應，在危 急時刻，完全沒有自給自足的能力，讓我們重新思考香港製造的可能性…在迷茫 的路上與香港人一起尋回昔日的微笑。 Face-masks as an expression of cultural identity. In their brand stories on the website, facemasks are often associated with the collective spirit shared by Hong Kong people, that is, the Lion Rock spirit, which has long become a dominant historical narrative in Hong Kong. The Lion Rock is a famous mountain in Hong Kong. It is named as such because viewed from the side, the mountain range resembles a resting lion. This spirit has been popularized by the theme song of a long-running TV series between 1972 to 2016, called "Below the Lion Rock." Featured by the "go-getting" spirit and the "can-do" attitude, it values "Hongkongers' sacrifice, self-reliance, perseverance, and social mobility" . The Lion Rock spirit is highlighted in two face-mask brands' stories on their websites and in their product design. For example, as shown in Figure 5, the brand story contains a long-shot photo of the Lion Rock, which has become an icon of "the localized and decolonized narrative of Hong Kong's history" . The accompanied text in Figure 5 highlights that the brand's endeavor is motivated by the Lion Rock spirit, that is, "逆境自強" . It then urges consumers to carry forward the Lion Rock spirit with them which emphasizes perseverance, self-reliance, and self-actualization. A particularly emotional strategy is Accepted Version. In Multimodality andSociety, 2021. DOI: 10.1177/26349795211014809 the use of a family metaphor to construct consumers as siblings of the producer in the Hong Kong family to appeal to citizens' support . The family metaphor is also used to evoke the quality of "trust," as in "屋企人係最信得過" . By employing spoken Cantonese in written texts, the brand attempts to build in-group solidarity with its Hong Kong consumers. In the text, the brand also distances itself from large corporations and positions itself as "只是幾位視香港為家的小市民小商人" . Aside from the brand story, the Lion Rock is also used as a brand name and printed on face-masks and packages. As shown in Figure 6, the face-mask has been codified into a carrier of the Lion Rock spirit, which is "marketed and sold to the public as a means of perpetuating Hong Kong's founding myth" . In terms of typographic design, the name of the Lion Rock is visually presented in the style of old store signs, typically seen in "pawn shops" across Hong Kong. The repetitive verbal and visual reference to the Lion Rock spirit distinguishes local face-mask brands from imported ones and develops a special bond with Hong Kong consumers who identify with the values. --- Fashion lifestyle Fashion lifestyle refers to local face-mask brands heralding a fashionable aesthetics in their product design. This symbolic value is related to the "Sensualist" theme in emotional branding, which promotes "individual lifestyle and self-expression, hedonism, glamour and fame" . To cater to consumers' unique lifestyles and satisfy their desire to be different, the local brands deploy different multimodal resources in product design, package design, website design, and store design to associate their products with three prominent symbolic values, namely, stylishness, individuality, and luxuriousness. Figure 7 Quotation on the face-mask package Stylishness. To construct the symbolic value of stylishness, local face-mask brands mainly draw upon the resources of evaluative expressions, aspirational quotations, and creative typographic design. First, expressions related to fashion lifestyle, such as "時尚," "潮流," and "飾品," repeatedly occur on the face-mask websites. Here the battle against the COVID-19 pandemic is constructed as a heavy burden for citizens, and the local face-mask brands advise citizens to wear masks of different colors and styles to overcome their pandemic fatigue and frustration. For example, as shown in Extract 2, the brand claims that its mission is to "transform its masks into fashionable accessories." Apart from making an explicit reference to fashion design, the brands often use aspirational quotations to associate their facemasks with philosophical, poetic, or artistic values. As pointed out by Musolff , as a special case of "echoic utterance," the employment of the quotes to a particular situation also indicates the speaker's attitude and wisdom. For example, as shown in Figure 7, the lyrics "It is just life, so keep dancing through," which is taken from Stephen Schwartz's song Dancing Through Life, is used on a face-mask package to inculcate a sense of lighthearted stylishness and wise life attitude during the pandemic. It is interesting to note that different mask packages feature different quotes so as to cater to different consumers' needs, such as "Remind you the mellow breeze over the Lavender fields.", "A smile washes away the dust of everyday life.", and "Be the sunshine to brighten the brand-new day!". These aspirational quotes present a stark contrast to the negative discourses about the pandemic, and clearly direct consumers' attention to the positive spirits associated with face-masks. Extract 2. Kick away the fatigue of fighting the virus with fashion style. The new "Facewear" concept transforms face-masks into fashion accessories. 以时尚魅力踢走抗疫疲劳全新Facewear 概念让口罩蜕变时尚饰品 Apart from verbal resources, the creative typographic design of the brands' names, logos, and slogans also constructs a sense of stylishness. The most salient feature lies in Accepted Version. In Multimodality and Society, 2021. DOI: 10.1177/26349795211014809 the irregularity of the typography, which involves the innovative use of dots, exclamation marks, underlines, slashes, quotation marks, and so on. Seemingly falling outside typical and standardized conventions or context of use, this kind of irregular and flourish typeface is associated with "creative," "artistic," and "spontaneous" meanings . It belongs to a postmodern type of aesthetics, catering for "an aspirational marketing-consumer stance, a cosmopolitan philosophy or worldview" . For example, in Figure 8, the quotation mark, ellipsis and the left brace are symbolically added to the marketing slogan "let the mask speak." With an emphasis on the embellished, artful design, the traditional letters shift their function from referential to decorative . Such new, artful, creative ways of using nonstandard typographic resources add stylishness and modernity to face-masks. Figure 8 An example of nonstandard typographic resources Individuality. Instead of producing monotonous blue/white-colored surgical masks which erase personal difference, local face-mask brands make great efforts in the visual design of face-mask products to respond to the need for self-expression of individuality. The face-mask websites categorize the themes of their products in terms of different wearing occasions , relationship status , and cultural aesthetic styles . By categorizing masks into different themes, the brands allow consumers to discover their own preferences and to express their personalities on different occasions. As noted by Chernev et al. , consumers tend to prefer brands that are more similar to their ideal self-concept or identity. To represent different themes, the most salient feature lies in the use of symbolic iconographic design. The represented images, according to Ledin and Machin , "tend to be stripped back of all clutter, in regard to things like daily objects and artifice, to allow culturally salient objects to play symbolic roles." For example, as shown in Figure 9, one of the brands introduces the "London style" with the iconic image of the "Great Bell" and the "party animal" theme with the portrait of a bunny girl. Apart from adopting different iconographic designs, another salient feature lies in the use of a maximally varied color palette in the face-mask design. In the store of Mask Factory, we can feel the different affective properties of face-masks, where our gaze could Accepted Version. In Multimodality and Society, 2021. DOI: 10.1177/26349795211014809 not but linger on the colorful mask-cladding across the store's entire wall. As shown in Figure 10, being suffused with incandescent light, the visible colorfulness compels us to carefully scan face-masks in different hues. Here, the color scale of face-masks changes from red to blue, and from high to low saturation, which stands in clear contrast to regular monotonous blue/white-colored surgical masks. As noted by Van Leeuwen , such color continuums have many correspondences and uses: while the red end of the scale is associated with warmth, energy, and salience, the blue end with cold, calm, and distance; while the high saturation connotes positivity, exuberance, and adventure, the low saturation connotes subtlety and tenderness and may create a brooding atmosphere. The use of different iconographies and changing scales of colors invites consumer-visitors to both express their individuality and experiment with different personalities for different situations. For example, during the Chinese New Year, many brands produced red facemasks and red packages as the color symbolizes celebration and good luck in the Chinese culture. Luxuriousness. Some face-mask brands imbue their products with a sense of exclusiveness, promoting them as "precious, highly desirable and-to many-unattainable objects" . The symbolic value of luxuriousness goes hand in hand with stylishness, as luxury brands are always associated with fashion and style. Luxuriousness is mainly constructed via high-end and artistic interior design, including furniture, lighting, and the use of local artists' original works as decorations . A typical example is MaskOn Gallery, located on the ground floor of Times Square in Causeway Bay. The store uses simple, metallic and reflective space design, which evokes the allusion to post-modern art museum culture. The dominant color palette is the metal gray, which together with low lighting and deep shadows, adds to the material "weight" of the store, suggesting a "cool" space that allows for reflection and relaxation . The in-store lighting is also carefully designed: instead of using an incandescent lightbulb, the store uses the spotlight to foreground its mask products, which are set out on the shelf available for purchase. Unlike traditional face-mask stores in Hong Kong with an emphasis on sales and discounts, in MaskOn Gallery, price tags are small and backgrounded. As shown in Figure 11, the masks are displayed for appreciation on the site, which reminds consumer-visitors of visiting an art gallery . In an art gallery, paintings are displayed in prominent positions, whereas the price tag of each painting is usually backgrounded so that customers are encouraged to appreciate the art value of the paintings first, before paying attention to their price. Moreover, the grey metal plaque lists information including the usage and functions of the mask-artifacts, and sources of designing inspiration to aid visitors' appreciation of the products. Like the latest fashion items or high-tech gadgets, these face-masks construct a similar sense of luxuriousness and high-end fashion for consumers. Accepted Version. In Multimodality and Society, 2021. DOI: 10.1177/26349795211014809 --- Discussion and conclusion The analysis shows that as face-masks have become a daily necessity in Hong Kong, local face-mask brands have started to resort to emotional branding strategies by mythologizing their products as a symbol of professionalism, a token of Hong Kong identity, and a stylish accessory. These symbolic appeals are realized through the combination of multimodal resources in the design of face-masks, packages, websites, and franchised stores. In this section, we will discuss the branding strategies in relation to the neoliberal socio-economic context of Hong Kong. Based on the analysis, we can summarize three emotional branding strategies that reflect commonality with other fashion accessories under the influence of global capitalism on the one hand, and uniqueness shaped by the socio-cultural context of Hong Kong on the other hand. First, through demonstrating professionalism , the brands transform facemasks from a mundane, daily necessity into a scientific semiotic-material assemblage. This demonstration of professionalism reflects what Fairclough calls the "technologization of discourse," which involves the codification of common sense into specialized knowledge. Secondly, to construct the brand myth, local brands communicate a rhetoric of locality in their storytelling, which includes evoking pride in the past economy and utilizing the Lion Rock spirit. Through making explicit reference to Hong Kong's economic and cultural heritage, they engage in "performative citizenship" , reinforcing Hong Kong identity in their brand stories and appealing to citizens' emotions. Thirdly, these brands have acquired a set of fashionable lifestyle codes and elitist rhetoric, which include stylish slogans, unique iconographic designs, and artistically designed store space. As Thurlow and Jaworski explain, elite discourse is characterized by "the need to be elite without being elitist, to be prestigious without appearing pretentious, and the need to be distinctive but attainable." These artistically designed face-masks thus become an item through which elitism can be enacted by customers. Ordinary objects like face-masks are rebranded to include a bespoke quality, and customers are offered the privilege to escape from the homogeneity of wearing regular blue or white surgical masks. These fashionable lifestyle codes and elitist rhetoric lead to a process of customization and diversification that is typical of fashion accessories. By introducing new trends from luxury designs into face-masks, local brands satisfy young Hong Kong consumers' continual desires for "ever-newer fashion" . These emotional branding strategies thrive on the tenets of neoliberalism in Hong Kong, where citizens rely on consumerism as a key part of identity and selfhood construction. As Chaput points out, "in the neoliberal political economy, an affective sense of belonging takes precedence over both use value and exchange value, initiating a shift from an advertising culture based on concrete facts to a branding culture based on communal sentiment." In other words, the neoliberal ideology motivates a kind of brand strategies that prioritize symbolic values over functional ones. Because of the economic ideological shift in giving more power to private sectors and free markets, neoliberalism creates self-resilient and self-enhancing individuals, and highlights the symbolic values of "professionalism," "creativity," "dynamics," and "flexibility" . It promotes a society that is subject to the dynamics of competitions and improvements, which results in the preoccupation with "professionalism" in corporate branding discourse, with a particular focus on "technical competence" . As noted by Berkovich , in the evaluative neoliberal model, with an emphasis on "performative accountability," the specification of inputs, processes, and outputs has become lifestyle. These symbolic meanings are realized through the deployment of verbal resources of evaluation, iconography, typography, color, and materiality in the design of face-masks, product packages, websites, and franchised stores. The study contributes to the field of multimodality in two ways. In terms of its findings, as the first study on the branding of face-masks, it reveals how face-masks are quickly commercialized during the pandemic through online and offline, semiotic and material resources. The analysis provides new understandings of the symbolic values that are exploited in face-mask branding, which reflect the collaborative force of global neoliberalism and the socio-cultural context of Hong Kong. In terms of the approach, this study demonstrates a holistic multimodal analysis which maps out the transmedia ensemble of signs involved in the branding practice. These resources, which work together to construct brand images, cannot be captured by looking at just one mode or one medium . As communication in various contexts is drawing upon an increasingly wide array of media platforms, this approach is important for unveiling how different resources are combined to achieve particular communicative purposes. --- Accepted Version. In Multimodality andSociety, 2021. DOI: 10.1177/26349795211014809 increasingly important. To quickly gain social recognition in today's increasingly competitive market, companies are engaged in an endless expertise demonstration and professional pursuit. Aside from highlighting technical details , some face-mask brands also showcase the production process . Their "performance" of expertise gives rise to a new form of "professionalism," where "performativity replaces the critical reflection and professional judgment" . Apart from demonstrating professionalism, the mask brands draw heavily on the rhetoric of locality, which reflects the neoliberal commodification of values and culture. Empowered by the neoliberal emphasis on market forces, the commodification and consumption of local culture and identity have become the linchpin of the prevailing market society . As noted by Mak , the commodification of culture entails "the process of emptying everyday objects of their meaning and significance, and affixing a new significance that speaks directly to the founding spirit of Hong Kong." That is to say, local mask brands represent their face-masks as a carrier of shared cultural values and emotions in Hong Kong society, which supersedes the pragmatic values of the products. The values of economic identity and cultural identity also coincide with the rhetoric of neoliberal resilience, which exhorts people to become autonomous, reliable, and self-improving subjects. It places an emphasis on individuals' ability to "adapt and cope with change and to 'bounce back' from crisis or trauma" , which is a particularly suitable theme to appeal to the population who are affected in one way or another by the pandemic. Lastly, the neoliberal ideology also reveals itself through an emphasis on individuality and eliteness, as well as the illusion of an aspirational life. In the highly marketized society in Hong Kong, neoliberal subjects place themselves as elites, striving to demonstrate their cosmopolitan attitude and understanding of how to compose their personal styles . Their practice of leading eye-catching fashion trends always forms a "seemingly contradictory mass exclusivity," which could only be understood by those with sufficient cultural capital . The design of face-masks, as demonstrated in our analysis, produces an "aspirational space" which allows customers to communicate how they position themselves in relation to an activity, their relationship status and aesthetic styles . As noted by Ledin and Machin , "the ideas and values of neoliberalism, the identities and forms of social relations which it favors, are infused into these designs." Local mask brands' symbolic production of fashionable lifestyle is also aligned with the neoliberal notions of "creativity," "the rise of lifestyle" , and the "regime of elitist choice" . As such, their branded conceptual and bespoke masks are featured by a sense of variety that celebrates individuality; the reconfigured mask "factory," "gallery," and "lab" can also be seen as part of affective labor that is "bound up with the performance of cultural capital and processes of distinction" . To conclude, we have shown how face-masks have been transformed from a specialized medical device to a daily accessory during the COVID-19 pandemic in Hong Kong, which motivates change in branding strategies from a focus on protective functions to that of symbolic values. Similar to accessories like bags and sunglasses, through the process of signification, face-masks have become associated with professionalism, identity, and fashion --- Declaration of conflicting interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. --- Author biographies

The massive introduction of face-masks across the world after the outbreak of the COVID-19 pandemic has transformed how they are designed and branded. Instead of merely focusing on functional qualities, face-mask producers have started to draw upon symbolic values in their branding discourse. Against this background, the present study investigates how face-masks are branded in Hong Kong by analyzing the design, packaging and websites for face-mask products, as well as the design of offline franchised stores using a social semiotic approach. Analysis of the multimodal data of four leading Hong Kong brands, with a focus on the use of verbal evaluation, iconography, typography, color, and materiality, reveals three symbolic meanings that are used in face-mask branding: (1) professionalism, which refers to the representation of facemasks as a symbol of advanced technology, (2) Hong Kong identity, which includes evoking pride in the past economy and exploiting the cultural symbol of the Lion Rock, and (3) fashion lifestyle, in which facemasks are associated with the values of stylishness, individuality, and luxuriousness. The exploitation of symbolic values and multimodal design in face-mask branding reflects the influence of the neoliberal ideology in the highly marketized Hong Kong society.

Laub and Sampson 2001, 2003; Sampson and Laub 1993) . Since much of the literature regarding marriage and desistance has focused on Whites, males, or older samples, research has begun to focus on the generalizability of the "marriage effect" with respect to race, gender, location, and period. While our knowledge of whether marriage impacts desistance across various conditions is increasing, one important population that has been understudied is urban African American men and women living in the United States. This article examines three main research questions: Does marriage influence offending among an urban African American cohort? if so, does marriage influence offending similarly across crime type? and what, if any, are the gender differences in the influence of marriage on offending among an urban African American cohort? --- Marriage and Desistance Theoretical Underpinnings The concept of desistance from crime has a long history dating back to the Gluecks' research in the 1930s and 1940s . The 1990s sparked a renewed interest in desistance with Sampson and Laub's presentation of their age-graded theory of informal social control. In essence, Sampson and Laub draw on the life-course framework and Hirschi's social control theory and suggest that people are more likely to commit crime and engage in deviance if their bonds to society are weakened or broken. Their theory also suggests that, among offenders, strong social bonds stemming from a variety of life events predict desistance from criminal offending in adulthood. Using interview data from a sample of 52 of the Glueck juvenile delinquents from the Unraveling Juvenile Delinquency study , Laub and Sampson found that marriage is a key event in the desistance process for violent, property, and alcohol/drug offenses, reducing offending by 20 percent to 40 percent. According to these researchers, the primary mechanism that underlies the impact of marriage on criminal desistance is the notion that marriage engenders social bonds and a sense of investment and obligation that is too costly to risk by committing crime . Laub and Sampson further posit that marriage also creates a change in routines, a change in peers, and introduction of new family members which can be inconsistent with crime. Finally, they contend that marriage provides direct supervision and can change a person's self-definition, which can facilitate desistance. Empirical studies continuously find evidence that marriage can redirect someone from an offending pathway to one of nonoffending or at least reduced offending . Theoretically, Sampson and Laub's age-graded theory of informal social control is a general theory that is intended to apply to individuals from all genders, periods, cultures, and ethnicities. Research is beginning to test this generality assumption with a focus on the applicability of this theory across gender , historical context , and European populations that tend to have different social contexts and marital patterns . Yet, there is little research on the impact of marriage on offending among U.S. African American males and females. Using the 1991 National Household Survey on Drug Abuse, Nielsen found evidence that adult social bonds impact drinking for Whites but not non-Whites. Similarly, Mudar, Kearns, and Leonard found that alcohol-related problems among the African Americans in their sample actually increased in the first 2 years of marriage when compared with Whites. Piquero, MacDonald, and Parker examined the impact of marriage on arrests among a group of male parolees and found that there was a significant marriage effect for non-Whites for nonviolent arrests but not violent arrests. With respect to gender, King et al. examined desistance among a national sample of males and females and found that although marriage led to a reduction in offending for males, this was not true for females. Upon further investigation, these researchers found that males with a low propensity to marry were particularly affected by their marriage. Bersani et al. examined gender differences in the influence of marriage among a sample of males and females from the Netherlands and found that marriage reduced offending across gender with a stronger effect for males. In contrast, Giordano, Cernkovich, and Rudolph examined the desistance process among serious adolescent White and African American males and females and found, in their quantitative work, that marriage did not impact offending for either males or females while the qualitative work showed a desistant effect that was similar for both genders. --- The Generalizability of "The Marriage Effect" Overall, there is some empirical evidence of racial and gender differences in the effect of marriage. However, it is still an open empirical question whether the marriage effect found among White populations can be generalized to offending for African American males and females in the United States, given the potential differences in social context, marital patterns, and offending patterns. First, inner-city neighborhoods in the United States are characterized by joblessness, poverty, violence, and pervasive racial discrimination that permeate the lives of those living in them . As African Americans disproportionately reside in these neighborhoods, the capability of marriage to impact offending in these circumstances is questioned. Thus, the social control elements of marriage that can facilitate desistance may be overshadowed by such strong contextual influences. Moreover, African Americans experience lower rates of marriage than Whites . This may reflect barriers to marriage resulting from these social contexts or reflect a low level of desirability of marriage . King et al. found that the effect of marriage on crime reduction was actually most salient among the men with the lowest propensity to marry. Thus, perhaps those African American men who do marry reap substantial benefits from marriage, regardless of adverse social contexts. Second, one of the key mechanisms of change, according to Laub and Sampson is a knifing off from friends and a change in routine activities . The fact that marriage rates are lower in general among African Americans means that African Americans will have fewer married friends than Whites. As South speculates, this fact, coupled with the fact that peer groups are more highly regarded than marriage for urban African American men, in particular , suggests that African American men might be less likely to alter their routine activities with respect to spending time with friends. On the other hand, African American women are more likely to desire marriage than men . Moreover, these women value marriage highly, even if they do not enter into it often , which suggests that women who do marry may reap many benefits from that marriage as well as exert strong social control over their husbands. Third, several marital characteristics also differ between those African Americans and Whites who do marry. Married African Americans have shorter marriages and are more likely to divorce than Whites , which begs the question of whether the social control benefits have time to accumulate or be as strong as those for Whites. African Americans also have lower levels of marital happiness than their White counterparts and are more likely than Whites to distrust their spouse . Theoretically, if marital quality is lower for African Americans and the strength of the marital bond is important for reaping the benefits of marriage , then one might expect marriage among African Americans to be ineffective at reducing offending. Finally, African Americans tend to marry later than their White counter-parts , introducing the timing of marriage as a potentially important consideration. The idea that the timing of transitions can affect future success in life domains is not a new one . There is recent evidence from the Cambridge Study of Delinquent Development, a sample of White males from South London, indicating that the impact of marriage on desistance is evident only for those who married before age 25 . With only approximately 10 percent of African Americans married by age 24 , this finding brings into question the impact of marriage on offending for this population. One speculation from Theobald and Farrington is that older individuals may be less receptive to change their self-definition, which is one mechanism of desistance outlined by Laub and Sampson . However, it is still an open question whether these findings regarding the timing of marriage apply to a population who tend to marry later as a whole. Thus, although there has been a growing abundance of evidence of the marriage effect on crime among White males and females from different countries, there are several questions unanswered. Primarily, does the marriage effect apply to offending among urban African Americans? If so, does this relationship hold for all crime types and for both males and females? There are several distinctive characteristics about the experiences of African Americans with regard to offending, marriage, and social context that bring this marriage effect into question and make an investigation of this population important. The current study uses the Woodlawn cohort, an epidemiologically defined community cohort of urban African American males and females followed from age 6 to 42, to investigate these issues. --- The Woodlawn Project The Woodlawn Project is a longitudinal study initiated in the mid-1960s. It takes a lifecourse approach to studying lives through time, specifically focusing on the developmental patterns of substance use, crime, education, and physical and mental health across the life course and the correlates of these patterns. The study began in 1966 when all first-grade children in the nine public and three parochial schools in the Woodlawn community, an inner-city community in Chicago, were invited to participate. Thirteen families chose not to have their children participate, leaving a cohort size of 1,242 . The cohort was then followed up at three additional time points . Of the 1,242 original cohort members, 51 percent are female and 49 percent are male. In 1966, the first graders' teachers and mothers were interviewed on a number of topics such as the child's classroom behavior, academic achievement, and social adaptation as well as family context and mental health. In 1975, 56 percent of the cohort were interviewed when the cohort members were 16 years old. The retention rate for this assessment was low due to funding constraints that restricted the follow-up interviews in adolescence to those living in the Chicago area. During this assessment, the adolescents and their mothers reported on their home life, school life, psychological well-being, crime and drug use using group-administered questionnaires. In 1992 , 952 of the original cohort members were interviewed about a wide variety of topics such as their psychological well-being, education, employment, living arrangements, relationships, health, and religious practices, as well as their crime and drug use. Data on criminal involvement were also obtained in 1993 from criminal records from the Chicago Police Department and the Federal Bureau of Investigation . In 2002 , 833 of the cohort members were interviewed using a similar interview schedule to that at the young adult interview.1 Throughout the study, reports of mortality have been gathered from family members and neighbors as well as through searches of the National Death Index . --- Sample Size Of the original cohort of 1,242, 470 were arrested between the ages of 17 and 32. Of those with no arrest record, we excluded those who died before age 17 and, to be conservative, those who self-reported being incarcerated for more than 6 months at age 32 but did not have any recorded arrests under the assumption that the lack of an official record might have been in error. This left a cohort size of 1,218 with criminal history information. An additional 39 people died by age 32, 150 people did not have a young adult or mid-adult interview to provide marriage information, and an additional 64 individuals did not have complete information on other key variables used in the analysis resulting in a final sample size of 965 respondents , 78 percent of the original cohort.2 --- Cohort Characteristics and Historical Context At the time of the initial study in 1966, Woodlawn was a socially disadvantaged, largely African American, inner-city community of Chicago. Overall, Woodlawn was the fifth poorest community among the 76 communities of Chicago at the time . However, there was considerable diversity in economic and social structural backgrounds within this community due to the limited number of areas in which African Americans could live in Chicago at the time. Although few families would be considered wealthy or middle class at the start of the study, 68 percent of the Woodlawn study families were not on welfare and 47 percent were above poverty level. Crime and drug use were prevalent within the community. During the period from 1966 to 1972, Woodlawn had the highest rate of male juvenile delinquents of the 76 community areas of Chicago . The 1970s, when the cohort was approximately aged 10 to 20, was a time of increased gang activity in the Woodlawn area with the neighborhood gang, the Blackstone Rangers, who developed into a young adult gang, the El Rukins. The violent crime boom of the late 1980s and early 1990s, which predominantly affected young African Americans , occurred when the cohort was 20 to 30 years old. By 1992 , although most of the cohort members had moved out of Woodlawn, they continued to represent urban dwellers enduring significant disadvantage. For instance, by age 32, 9 percent of the interviewed cohort still lived in Woodlawn and 65 percent remained in the city of Chicago. In addition, the rates of poverty were high, with over a third below the poverty level and 49 percent in relative poverty compared to the median national income. In addition, only 9 percent reported no drug trafficking in their neighborhood while 62 percent reported heavy or moderate drug trafficking. Similarly, 66 percent stated that there were gangs in their neighborhood at age 32. --- Measures Offending The outcome of interest, adult criminal offending over the life course, is operationalized as annual arrest counts for ages 17 to 32. These arrest records are from the Chicago Police Department "rap sheets" and FBI data. The criminal history records contain arrests for each age categorized as one of several offense types. The three main crime types examined here are violent , property , and drug offenses .3 Total offending is the sum of these three offense types along with other crimes such as public order crimes, nonviolent sex crimes, weapons offenses,4 and traffic offenses . Mortality information was integrated into the longitudinal criminal histories to safeguard against presuming someone had stopped offending who had instead died. The negligence of incarceration time in the rate of offending could result in an underestimation of the actual offending trajectory in any given year, as recent research has found . Unfortunately, we do not have the exact number of days incarcerated at each age so we could not incorporate annualized exposure time on the street into the criminal histories. However, we are able to incorporate the sentencing data found in the arrest records into the criminal histories such that a person is considered incarcerated in any year where he or she has zero offenses and is known to have been sentenced to more than 1 year at that age. 5 Using this strategy, we attempt to reduce the chances of presuming someone has desisted from offending who in fact was incarcerated. Over the ages of 17 to 32, 40.8 percent of the 965 cohort members were arrested for at least one offense . Among the offenders, over half of the male offenders and close to a third of the female offenders were arrested for violence . Figure 1 presents a general overview of the annualized mean offending rate for the Woodlawn men and women for ages 17 through 32 for total offending. On average, the male offenders committed between .25 and .30 offenses per year and the females committed close to .05 offenses per year. This difference in mean level of offending is consistent with the wealth of information that exists on gender differences in offending. An unexpected finding from Figure 1 is the fact that crime does not decline with age for this cohort, regardless of gender. 6 --- Marriage We draw upon the self-report interview data from the young adult and mid-life interviews to compile annualized information of whether someone was married or not at each age. At the young adult interview, each person was asked about his or her current marital status, the number of times he or she had been married, and the age of marriage for his or her current marriage. If the person was married more than once, the respondent was also asked the age his or her first marriage began, ended, and how that marriage ended. To increase the sample size, for those who did not have a young adult interview but did have a mid-life interview , information from the mid-life interview was used. At the mid-life interview, each person was asked similar questions as well as about any changes in his or her marital status since the young adult interview and the details of any and all changes. From this information, annualized data on marriage were obtained by coding whether someone was married or not married at each age. A person was coded as not married in any given year if he or she had never been married, was living with a partner, divorced, separated, or widowed. 7 Based on the 965 cases with marriage, criminal history, and covariate information, 49.0 percent were married at some point by age 32 with an average age of first marriage being 26.1, with relatively similar patterns for males and females. Using data from the National Household Survey of Drug Abuse from 1992, the year when the Woodlawn sample was 32, we calculate that 59 percent of African American men and 42 percent of African American women aged 30 to 34 were currently married . As shown in Figure 2, the corresponding percentages are lower among the disadvantaged cohort of men and women from Woodlawn with approximately 30 percent currently married in their early thirties. --- Covariates In order to control for individual differences that may predict offending patterns over time, we include several covariates into the models. Both structural and family variables have been found to predict offending in adolescence and adulthood. Drawing from Sampson and Laub's work, we measure early disadvantage as a combination of structural components, family background, and parental disposition. Thus, early disadvantage is measured using a mean scale of 8 items ranging from one to four tapping into first grade disadvantage in the household . This scale has a reliability of .62 with the males and females each averaging 2.4 on the scale. Aggression has also been continuously linked with future offending . Here we measure aggression in first grade as a dichotomous measure from teacher observations of children in their first grade classroom with a one equal to severe or moderately aggressive . High school dropout is also an indicator of risk of offending , which is defined here as having dropped out of school prior to graduation as opposed to being a high school graduate or receiving a general equivalency diploma . Males are more likely to be high school dropouts with 26 percent of males and 21 percent of females being high school dropouts . Finally, we include a measure of marital length as a time-stable covariate, which is simply the number of years married 7 One limitation of the data is that we do not know specific dates of marriage, separation, divorce, and so on. Thus, a person is coded as married or not for the whole year at each age. There are two reasons for coding someone as "not married" who was living with a partner. First, some argue that marriage is a greater investment than cohabitation and marriage brings with it the social benefits under study that may be lacking in a cohabitating couple . Second, and more importantly, there is a data limitation in the Woodlawn data, in that, it lacks annualized data on cohabitation. Although living with a partner is a response option at the age 32 and 42 interviews, retrospective ages of change in marital status are only reported for marital changes . between ages 17 and 32, regardless if it is a single marriage or multiple marriages. We discuss the rationale for inclusion of this covariate in the Analysis section. --- Analysis The analysis tests whether marriage impacts offending, controlling for the covariates described earlier . We employ hierarchical linear modeling , which allows a simultaneous estimate of variations in crime within individuals over time and between-individual differences in offending patterns. To study individual change within the HLM framework, the crime counts for each individual by age are viewed as nested within that individual. There are two levels of analysis. Level 1 estimates each person's development with a unique individual growth trajectory that depends on a set of parameters. The growth parameters from level 1 become the outcome variables in level 2 of the model and are determined by person-level characteristics. Therefore, level 1 in the model estimates the within-individual change and level 2 in the model represents the between-individual analysis . The analysis used here is modeled closely after Laub and Sampson's analysis of marriage and offending among the Glueck males . At the withinindividual level, crime is modeled as a function of age and marriage. Specifically, a hierarchical Poisson model is used for the males while a hierarchical Bernoulli model is used for the females since over 50 percent of the women were only arrested once. In both of these models, we use the overdispersed model to account for the skewed nature of the data with the abundance of zeros at each age . The outcome variable for the male model is the log of offending per year and for females it is the log of the odds of offending per year. The basic elements of this within-person model are: where i is the index for individuals and t stands for the longitudinal observations. The intercept, π 0i , is the estimated rate of arrest or odds of arrest when age is set to zero . The π 1i and π 2i parameters estimate the average rate of change and rate of acceleration or deceleration, respectively . To increase the meaningfulness of the interpretation of the intercept term, researchers use the technique of centering their data. Centering at the mean provides a more meaningful anchor to better understand the variation around the mean. Here we center age at the mean of the observed age-person distribution . The π 3i parameter indicates the change in offending due to being married. One concern is that the effect of marriage at level 1 will be biased if the relationship between marriage and offending is different in the aggregate . Two techniques recommended by Raudenbush and Bryk are employed to eliminate this bias. First, marriage at level 1 has been group mean centered to allow an examination of the deviation in someone's overall mean level of marriage and its relationship to his or her offending. This allows for an examination of change in offending due to marriage within individuals. Second, we include the mean number of years married in the level 2 model to further safeguard against any threats to validity . At the between-individual level, the parameters from level 1 are estimated from the level 2 equations. The basic elements of the between-individual model are: where X, W, and Z represent the various covariates described previously . 8 These covariates are either included as safeguards against bias as mentioned earlier or as childhood and adolescent risk factors for offending and marriage differences that predate the criminal offending trajectories estimated in HLM. --- Results The generality of Sampson and Laub's theory will be supported if the Woodlawn men and women show a reduction in their offending when they are in a state of marriage, controlling for their propensity to marry , early disadvantage, aggression, and educational achievement. The full conditional models for total crime and by crime type are shown in Tables 2 and3 for the Woodlawn males and females, respectively. As shown in Table 2, model 1, 9 there is a 29 percent reduction in crime associated with being in a state of marriage for the males -1) × 100). In other words, the same man, when married, is less likely to offend than when he is not married. While marriage reduces offending for total crime, the question remains whether this is true for all types of crimes. Model 2 of Table 2 presents the conditional model for violent arrests for males showing similar results. In fact, there is a 36 percent reduction in violent arrests when a man is married compared to when he is not married. As models 3 and 4 indicate, there is also a 28 percent reduction in property arrests and a 21 percent reduction in drug arrests associated with being married compared to being unmarried in any given year. 10 Moreover, for men, each of the covariates was statistically significantly related to offending in all of the models. 8 According to the model used in this analysis, the slope parameters for age are allowed to vary across persons, as indicated by the error term but the acceleration parameter and marriage parameter are fixed. The model results reported are the population-average model parameters with robust standard errors. 9 The age-squared parameter was not statistically significant in the model for total crime and is thus excluded from this model. 10 Although Woodlawn is a high-risk community cohort with high rates of adolescent delinquency , we were interested in the impact of marriage on desistance among the offenders only. We reanalyzed the hierarchical linear modeling models restricting the sample to male offenders and found similar results. All of the coefficients were negative and significant with the exception of drug arrests. These results bolster our confidence in our overall substantive conclusions. The results for the females displayed in Table 3 show a somewhat different story. Again, model 1 shows the impact of marriage on offending for total crime, controlling for propensity for marriage, early disadvantage, childhood aggression, and educational achievement. In this model, a woman has a reduction in the odds of arrest when she is in the state of marriage; however, this reduction is not statistically significant for total arrests and the results appear to be crime-specific. As models 2 through 4 indicate, while being in a state of marriage for women reduces the odds of property arrests by 10 percent, it does not significantly impact violent arrests. Moreover, being in a state of marriage significantly increases the odds of a drug arrest by 9 percent. 11 All the covariates, except early disadvantage in the overall and the violent crime models, were significantly related to the between-individual differences in offending. --- Discussion In this study, we tested the generalizability of Sampson and Laub's age-graded theory of social control with a specific focus on the impact of marriage on desistance from crime. It is an open empirical question whether the differences in social context, marital patterns, and offending patterns among urban African American males and females impact the capacity of marriage to influence offending as hypothesized by Laub and Sampson . Consistent with national data, only one third of the Woodlawn men were married by age 32, with an average age of marriage of 26. These men did not follow a typical age-crime curve in their offending patterns with stable patterns throughout age 32, a trend that is in stark contrast to our existing knowledge of the age-crime curve . This trend seems to be driven by assault behavior with assault increasing over time for this cohort and robbery decreasing with age, as predicted . A comparison with the self-report data also indicates that the Woodlawn cohort has high rates of violence throughout young adulthood. In adolescence, 72 percent of the 705 respondents self-reported at least one violent crime in the past 3 years and 44 percent of the cohort interviewed in young adulthood reported at least one violent crime between ages 17 and 32. Yet, despite these marital and offending patterns that are dissimilar from Whites, those African Americans that did marry benefited from that life event as evidenced by a reduction in offending across crime type. Thus, the African American men in our sample, despite their low propensity to marry are susceptible to marriage's beneficial effects. This finding is consistent with Laub and Sampson and with the finding from King et al. who found that the effect of marriage on crime reduction was most salient among the men with the lowest propensity to marry. Overall, the findings from the male sample provide strong evidence in favor of the generality of the core finding of Sampson and Laub's age-graded theory of informal social control in that the marriage effect applies to urban African American males as well as White 11 Although all of the coefficients were in the same direction as when all females were included in the sample, with the exception of violent crime becoming positive, we found that none of the coefficients reached significance when we reanalyzed the HLM models when the sample was restricted to female offenders . These findings add to the evidence of inconsistency in results among the females. However, it should be noted that this loss of significant findings may be due to a loss in power. males. However, this study did not address the mechanisms by which marriage impacts a reduction in offending. Thus, while a marriage effect seems to exist for these urban African American males, questions remain as to whether the mechanisms that are proposed for Whites similarly apply to this population. This is clearly an area for future research. Another area of future research is in applying methodology that can examine the causality of marriage on desistance from crime . Although our methodology did not allow us to speak directly to the causal nature of the relationship between marriage and offending, it should be noted that our findings for the Woodlawn males were similar in size and nature to those found in research using the Glueck data set, a less contemporary all White male data set. For women, only property crime was reduced when a woman was in a state of marriage, with marriage having no effect on total crime or violent crime and increasing drug crime. This lack of consistent findings for females in our study is consistent with current research and lends credence to Laub and Sampson's warning that "good marriage" effects may not be as applicable to women as they are for men. It may be that since the males are more antisocial they are more likely to "marry up" as opposed to their less antisocial female counterparts who "marry down" . This notion may be particularly true for African American women. Several researchers have indicated that there is a smaller proportion of "marriageable men" among African Americans compared to Whites and African American women are less likely to marry outside their race than African American men .Moreover, the dramatic impact of incarceration as a life experience for so many African American men may eliminate their ability to provide direct supervision over their wives and compromise their ability to provide informal social control, two key mechanisms of desistance according to Laub and Sampson . An investigation into these potential mechanisms is needed. Another possible explanation may be that if African American women are more likely to have children prior to marriage than Whites and have high regard for motherhood , it may be that motherhood is an earlier and more salient source of social control for these women than marriage. Indeed, recent research has found parenthood to have strong inhibitory effects on disadvantaged African American women . Although an investigation into parenthood as a time-varying covariate is beyond the scope of this study, preliminary evidence indicates that motherhood was prevalent in the teen years with high rates of having a child before marriage or having a child and never marrying .12 Another explanation that must be noted may be that since the Woodlawn women had much lower rates of offending than the men, the lack of findings may be the result of too little power to see a marriage effect. The fact that drug arrests increase among the Woodlawn women when in a state of marriage suggests that assortative mating may be at play for these women when it comes to substance use . Although we do not have information on the deviance of the marital partner, the pool of antisocial men may be quite large in disadvantaged areas, which increases the likelihood that antisocial females will have antisocial partners. This assortative mating may be particularly relevant for drug crimes as having drug using partners has been linked with continuity in offending . However, given that only 4.2 percent of the women were arrested for a drug crime, future research on larger samples of women with drug offenses would increase the confidence in this finding. There are several limitations to this study that need to be considered when interpreting the results. First, we use official records to establish offending patterns. Although official records often provide more accuracy regarding timing and the type of offense , official records are limited to those events that come to the attention of the police. More specifically, the use of official data introduces the requirement of an official reaction to crime in addition to the commission of a criminal offense, which only allows a subset of actual criminal offending to be assessed. There may also be gender differences in police reaction, which could further underestimate female crime. Second, the data lack annualized incarceration data, which will inevitably underestimate the crime among this population, especially since it is a population that is likely to experience incarceration. To the extent possible, future analyses should include both official and self-report data and include more precise incarceration information. Third, we could not study cohabitation, study competing time-varying social control elements such as employment, or uncover the mechanisms underlying the change in offending. Therefore, greater attention as to whether cohabitation functions similarly to marriage, whether marriage remains a robust predictor of desistance once other life events are taken into account, and why marriage reduces offending is needed. Finally, as in all longitudinal studies, the Woodlawn study has experienced attrition. Although attrition analyses uncovered very few differences between those who were and were not followed, the results should be interpreted with this in mind. A major strength of the study is that it examines the marriage effect on a cohort of African Americans who grew up in a socially disadvantaged inner-city community in the 1960s. First, there are few longitudinal studies of African Americans who have both low rates of marriage, high rates of crime, and have been followed from childhood into young adulthood. Second, this type of cohort is of importance to criminological research as it represents those who live in communities ravaged with crime and drug use across the nation. Finally, although its findings are not necessarily generalizable to a specified larger population, the results do provide one more piece of the "generalizability of the marriage effect on crime" puzzle. Further research could add to this growing body of literature with respect to Hispanic Americans, Native Americans, and cohorts from varying time periods and geographic locations. Offending Descriptives for Woodlawn Cohort By Gender. --- Biographies Ensminger's interests include life span development and health; poverty and health; childhood and adolescence; social structure and health; substance use; aggressive and violent behavior. She and her colleagues have been examining the early individual, family and neighborhood antecedents to both healthy and unhealthy outcomes for the Woodlawn cohort of former first graders and their mothers.

Objectives-Drawing on Sampson and Laub's age-graded theory of informal social control, this research tests the generalizability of the marriage effect on desistance from crime. Specifically, do urban African American men and women living in the United States benefit from marriage similarly to Whites? Methods-The authors use hierarchical linear modeling (HLM) to analyze the relationship between marriage and official arrest counts among African American male and female first graders from Woodlawn, an inner-city community in Chicago, first assessed in 1966 and followed up at three time points (ages 16, 32, and 42). Results-The authors find strong evidence of a marriage effect for the males across crime type, with a reduction in offending between 21 percent and 36 percent when in a state of marriage. The findings for females were less consistent across crime type, a 10 percent reduction in the odds of a property arrest and a 9 percent increase in the odds of a drug arrest when in a state of marriage. Conclusions-Their findings provide evidence in favor of the generality of Sampson and Laub's theory, at least for males. However, the authors were not able to evaluate the mechanisms of desistance and identify this as an area of future research.

Krieger, 1999; Cooper, 1993) . Particularly, vigilant anticipatory coping is one potential response that may be damaging to health. Vigilant anticipatory coping refers to dealing with an ensuing situation attentively through greater alertness and preparation in expectation of what may occur. More specifically, it entails taking sometimes extraordinary steps to prevent or reduce the likelihood of being targeted for racial discrimination or other forms of mistreatment. Most prior studies of coping focus on how individuals cope with problems once they occur, particularly around onset of disease . There have been fewer investigations of steps that people take to mitigate subsequent stressors . For example, concerns about safety in high-crime neighborhoods or exposure to low quality residential conditions may lead some to live, chronically, in a state of heightened vigilance, anticipating exposure to racially discriminatory treatment. This treatment can occur in the form of greater policing and stereotyping in high crime neighborhoods, or differential resource allocation and maltreatment towards those in low quality residential conditions. This may take a toll on health and social functioning . The expectation of negative social events is associated with increased social anxiety and depression . A meta-analytic review by Pascoe and Richman documented associations between perceived discrimination and physical and mental health outcomes. This research suggests that perceived discrimination has a negative effect on mental health, particularly depressive symptoms, psychiatric distress, and general well-being. In addition, several studies have documented the detrimental effect that depressive symptoms have on physical health over time . Moussavi and colleagues found that depression produces the greatest decrement in physical health compared with other chronic diseases. While most past studies of vigilant anticipatory coping have been confined to the social context of the United States, there is every reason to suspect that it would be universal among members of stigmatized groups . It is likely that groups who experience discrimination could adopt vigilant anticipatory coping as a strategy to manage unexpected life events. Although the research literature on vigilant anticipatory coping is small, there are some suggestive findings. For example, one study using ambulatory blood pressure measurements found that although the daytime levels of blood pressure were similar for Black and white Americans, Blacks had a smaller nocturnal decline in blood pressure than whites such that they maintained higher levels of blood pressure even when they were asleep . If blacks are more likely to employ vigilant anticipatory coping, this may account for such findings. Moreover, stressful life events, or negative emotional states such as hostility are associated with race differences in blood pressure . Higher levels of arousal may reflect an attempt to cope with the perceived presence of racial bias or other environmental stressors. The purpose of this study is to examine the relationships between vigilant anticipatory coping, race, and depression. We expect that blacks will display higher rates of vigilant anticipatory coping compared to whites, and that vigilant anticipatory coping will be associated with higher risk of depression. Finally, we hypothesize that adjusting for vigilant copying will account for race difference in depression. --- Methods --- Subjects and Survey Design We conduct this study using the Exploring Health Disparities in Integrated Communities database. EHDIC is an ongoing multisite study of race disparities within communities where Blacks and whites live together and have similar socioeconomic statuses as measured by median income and high school graduation rates . EHDIC addresses confounding of race with SES and segregation by examining white and Blacks living in similar socio-environmental conditions. This design also allows us to account for race differences in the social context in which Black and white Americans usually live, as the United States remains highly segregated by race. The primary purpose of the EHDIC study was to examine whether patterns of health-related racial disparities are different within an environment which accounts for racial segregation and SES, as compared with national data typically used to describe racial disparities in health. The first EHDIC study site was in Southwest Baltimore, Maryland . Further EHDIC locations are planned. EHDIC-SWB is a cross-sectional face-to-face survey of the adult population of two neighboring census tracts. In addition to being economically homogenous, the study site was also racially balanced and well integrated, with almost equal proportions of Black and non-Hispanic white residents. In the two census tracts, the racial distribution was 51% Black and 44% white, and the median income for the study area was $24,002, with no significant difference in income by race. The census tracts were block listed to identify every occupied dwelling in the study area. During block listing, we identified 2,618 structures. Of those, 1,636 structures were determined to be occupied residential housing units . After no more than five attempts, contact was made with an eligible adult in 1,244 occupied residential housing units. Of that number, 65.8% were enrolled in the study resulting in 1,489 study participants . Because our survey covered each census block in the study area comparably, the bias to geographic locale and its relationship with socioeconomic status should be minimal . Comparisons to the 2000 U.S. Census for the study area indicated that the EHDIC-SWB sample included a higher proportion of Blacks and women, but was otherwise similar with respect to other demographic and socioeconomic indicators. For instance, our sample was 59.3% Black and 44.4% male, whereas the 2000 U.S. Census data showed the population was 51% Black and 49.7% male. Age distributions in our sample and 2000 U.S. Census data were similar with the median age for both samples between 35-44 years. The lack of race difference in median income in the U.S. Census, $23,500 vs. $24,100 was replicated in EHDIC, where the median income was $23,400 for Blacks vs. $24,900 for whites . These median income levels are 127% vs. 135% higher than the federal poverty threshold in 2003 for a family of four . The survey was administered in person by a trained interviewer and consisted of a structured questionnaire, which included demographic and socioeconomic information, self-reported health behaviors and chronic conditions, and three blood pressure measurements. The EHDIC study is described in greater detail elsewhere . Sample-Because of the length of the questionnaire, some questions such as vigilance were only administered to a subset of respondents. Consequently, 718 respondents who were administered the vigilance scale were included in this study. Institutional review board approval was obtained and all respondents gave informed consent. --- Measures Depression was measured by the Patient Health Questionnaire , a 9-item, selfadministered scale with scores on each item ranging from "0" to "3" . The total possible score ranges from 0 to 27 . The PHQ-9 is a reliable and valid measure of depression severity and has the potential to establish depressive disorder diagnoses and well as grade symptom severity . It has been determined that scores of 5, 10, 15 and 20 represent valid thresholds indicating lower limits of mild, moderate, moderately severe, and severe depression . In addition, individuals with major depression have 2.6 greater odds of having a score of 10 or more compared to those without major depression . Therefore, we specified the PHQ-9 as a binary variable and labeled those with a score of 10 or more as depressed. Previous studies have also dichotomized the PHQ-9 in this way . Vigilance was assessed using a modified version of the 6-item vigilance anticipatory coping scale developed for the 1995 Detroit Area Study at the University of Michigan-Institute for Social Research . The modified version of the scale was 5-items, with response categories for the scale being: 0= never, 1=sometimes, 2=often, and 3=always. The scoring range was 0-15. Respondents were asked to indicate the extent to which they: prepare in advance for the kind of problems they are likely to experience, try to prepare for possible insults before leaving home, feel that they always have to be careful about their appearance to get good service or avoid being harassed, carefully watch what they say and how they say it, and carefully observe what happens around them ). We computed the average score across the five items and dichotomized the summary score at the median. Cronbach's alpha was computed to assess the overall scale reliability for the vigilance scale . Covariates were chosen based on previous research that explored the relationship between racial differences in depression . All dichotomous variables in the model are coded 0 and 1 . Covariates in study included age, gender, race, marital status, health status, education, and family income. Age was specified as a continuous variable. Gender and race were entered as dichotomous variables indicating female and white. Marital status was specified as a series of binary variables: married , formerly married , and never married. Subjective health status was treated as a dichotomous variable, with "excellent", "very good", and "good" responses combined into a single category and compared to a category composed of combined "fair" and "poor" responses. Education was specified as a series of binary variables: less than a high school diploma, a high school graduate or equivalent, some college, and college graduate or more. Binary variables for family income included: less than $20,000 per year, $20,000 -34,000 per year, $35 -55,000 per year, and greater than $55,000 per year. --- Results --- Statistical Analysis In the first set of analysis we conduct a univariate description of the sample followed by a series of logistic regression models to assess the associations among race, vigilant coping, and depression. Sample characteristics are described using means and standard deviations for continuous variables and frequencies and percentages for categorical variables. We then conduct bivariate analysis using chi-square and t-tests were conducted to assess whether race differences existed within the sample. For the logistic regression models, we first tested for an unadjusted effect of race on depression. Next we assessed the association between race and depression controlling for demographic variables and indicators of health status factors. The third model tested the unadjusted association of vigilant coping on depression. The effect of vigilance on depression was adjusted for demographic and health factors in model 4. Model 5 tested the unadjusted effect of race and vigilant coping on depression. Model 6 assessed the effect of race and vigilant coping controlling for demographic and health status factors. All analyses were conducted using Stata version 11 --- Descriptive Statistics Table 1 shows a description of the sample by race. The sample was 61.6% Black, 38.4% white , and ranged in age from 18 to 101 years. There were similar proportions of women among Blacks and whites . Whites were older, with an average age of 42.9, compared to an average age of 38.2 for Blacks. Whites were more likely to report being married or formerly married . By contrast, Blacks were more likely to report never having married than whites . Blacks were more likely than whites to have a high school diploma as well as some college education . There were no differences by race in family income. Blacks are more likely to report excellent or good health compared to whites . Table 2 shows race differences in vigilance and the mean score of Blacks and whites on each item of the vigilance scale, as well as differences in depression severity. The total vigilance scale mean was 6.5 with a range of 0 to 15. As hypothesized, Blacks had significantly higher mean scores for Vigilance than whites . Each of the five items on the vigilance scale were scored as 0 , 1 , 2 and 3. Blacks scored significantly higher on each of the vigilant coping strategies except for "thinking in advance about problems" -where there were no significant race differences. Compared to whites, Blacks were more likely to report "always prepare for insults" and "always being careful about their appearance to avoid harassment" . Moreover, Blacks were more likely to "always watch what they say and how they say it" than whites ; and more likely to "always observe what happens around you" . In addition, whites were more likely to score 10 or more on the PhQ-9 depression scale . Finally, Blacks were more likely to score above the median on the vigilance scale than whites . The results of multivariate analyses are shown in Table 3. Model 1, assessed the unadjusted effect of race on depression. Whites had nearly twice the odds of screening as depressed compared to Blacks = 1.98; 95% confidence interval = 1.37-2.87). In Model 2 we adjusted for demographic characteristics and self-reported health which resulted in a small decrease in the association between race and depression. However, the race effect remained significant . In Model 3 we assessed the unadjusted association between vigilance with depression. As hypothesized, the model found that vigilance is associated with depression whereby persons with high vigilance scores have more than two and half times greater odds of depression compared to those with low vigilance scores. After adjusting for demographic factors and physical health status in Model 4, we found a slight reduction in the association. However, vigilant anticipatory coping remained significantly associated with depression . Model 5 tested whether there were independent association between vigilance and race with depression. In this analysis we found an independent effect for both predictors. Comparing the odds ratio for vigilance from Models 1 and 5, we found a nearly 26.3% increase in the odds of white respondents screening positive for depression after adjusting for vigilance . Comparison of Models 3 and 5 found a 20.2% elevation of the vigilance odds ratio . These findings were contrary to our initial hypothesis that adjusting for vigilant coping would account for race differences in depression. In Model 6 we added a set of demographic factors, which resulted in some reduction of the odds ratios for race and vigilance . This model helps to confirm the robustness of the findings. We also examined the interaction of race and vigilance in a reduced model and the full model; however, the interactions failed to reach significance in both models. In addition, these models were also run with depression and vigilance considered as continuous variables and the results were analogous to those presented here. --- Discussion This study examined the associations among race, vigilant anticipatory coping, and depression. Our analysis found that race was associated with depression in bivariate analyses, such that whites have increased odds of depression compared to Blacks . Additionally, vigilance was found to be associated with increased odds of depression . More specifically, Blacks in this study displayed greater likelihood of reporting vigilance compared to their white counterparts . Although vigilance contributed significantly to depression and Blacks reported higher levels of vigilance, we still found higher prevalence of depression among whites compared with blacks . After adjusting for vigilance we found that the racial disparity in depression was greater . Thus, were it not for the high prevalence of vigilant coping in blacks, the well-documented black advantage regarding depression compared to whites, would likely be an even greater advantage. This work represents an important extension of previous work concerning coping and health outcomes , and indicates that vigilant coping may be an important risk factor for mental health, particularly depression. This study also elaborates on the association between coping and depression . The findings suggest that prolonged heightened arousal associated with vigilant coping is not only associated with poor physical health, but poor mental health outcomes as well. Vigilant coping may be an important pathway which mediates health risks to produce ill health. Further study of vigilant coping has the potential to advance knowledge about the mechanisms of racial disparities in health outcomes. In addition, these analyses were conducted in a unique community sample without race difference in socioeconomic status and where black and white respondents are exposed to similar socio-environmental risks due to the racially integrated nature of the study population. The EHDIC study design allows us to account for race differences in the social context in which Black and white Americans usually live, as the United States remains highly racially segregated. There are, however, some limitations. Black and white respondents of EHDIC-SWB have similar socio-environmental health risk exposures at home, but other exposures are not known. Also, generalizability of the results may be limited somewhat given that the study was conducted in only two census tracts. However, work from our research group compared disparities in chronic conditions in the EHDIC-SWB sample with results from the National Health Interview Survey and determined that the EHDIC-SWB sample yielded similar outcomes to those of low income persons nationally Also, the analyses in this manuscript are cross-sectional so we cannot make conclusions regarding causation. It may be that people or are more vigilant are more likely to be depressed. However, it is possible that people with depression are more vigilant. Future research can assess this issue. The EHDIC study only included data from Black and white participants. Therefore, we have no information concerning the relationships among these factors in other racial or ethnic groups. Future research would benefit by the examination of vigilant anticipatory coping in other racial/ethnic groups and the translation of the vigilance scale into other languages. Despite these limitations we believe these analyses offer unique insights into the relationships among coping, race and depression. Vigilant anticipatory coping appears to conceal racial disparity in depression that is greater than previously documented. In this regard it may be seen as productive. It may be a characteristic of African American culture which evolved as a protective mechanism against centuries-long discrimination and racism. If this is so, vigilant coping may be used to intervene in the health destroying aspects of discrimination, assuming an appropriate programmatic mechanism for dissemination of this message can be developed. --- Implications for Public Health Policy Current interventions may be targeting social and environmental stressors in addressing mental health disparities, but the problem spans beyond these factors alone. This paper reveals that vigilant coping is associated with increased odds of depression and widens the black-white disparity in depression, even after adjusting for potential confounders. Depression treatment strategies must balance the fine line of ensuring that vigilance is not stimulating and perpetuating ill health among stigmatized populations, but that these groups are able to continue to use vigilant coping appropriately as a protective factor. Public health researchers, policy makers, and practitioners must work together to eliminate disparities through a multidisciplinary approach that accounts for social and environmental exposures, as well as cultural expectations and norms. In addition, our work reveals the need for additional research on the relationships between vigilance and health care outcomes. This paper explores relationships as they relate to depression, but coping style may also impact other physical and mental health care outcomes. --- "Knowledge Award" from the U.S. Department of Health and Human Services, Office of Minority Health. And, he was awarded the "Innovation Award" from the National Institute on Minority Health and Health Disparities of the National Institutes of Health. He received the PhD in medical sociology from the University of Michigan.

Although Black-white differences in depression are well documented, vigilant coping style as an explanation for the observed inequalities in depression is less understood. Using data from 718 adults in the Exploring Health Disparities in Integrated Communities (EHDIC) Study, we estimated logistic regression models to examine the cross sectional relationship between race, vigilant coping style, and depression. After controlling for demographic variables, white adults were more likely to report depression than Black adults. Moreover, when accounting for coping style, the Black-white difference in depression widened. This association persisted even with the addition of the covariates. While high rates of depression among whites compared with Blacks are well documented, the degree of the differences appears to be greater than previously reported once vigilance is accounted for. This finding suggests that if it were not for the high prevalence of vigilant coping in blacks, the well-documented black advantage regarding depression compared to whites would likely be even greater.

Introduction By 2060, there will be an estimated 16.3 million people experiencing serious health-related suffering and dying with cancer annually, and this number will rise more quickly in low-income countries , lower-middle income countries , and upper-middle income countries , compared to high income countries from 2016 to 2060 . Jordan faces unique and complex challenges in health care due to refugee influx and rising cases of cancer. It has the secondhighest ratio of refugees to citizens of any country in the world, creating an immensely complicated refugee crisis . In Jordan, cancer is the second leading cause of death . According to the most recent data from the Jordan Cancer Registry, 8152 cancer cases were reported for the year 2016, of which 5999 cases were from Jordanians and 2153 from non-Jordanians including refugees. Out of the 19,676 recorded mortalities, 3084 were due to cancer . Cancer burden in Jordan is a challenge, and the national cancer control should place a high priority on developing an endorsed National Cancer Control Strategic Plan . Palliative care is a multidisciplinary approach aimed at improving pain and other symptoms and optimizing quality of life among people with life-threatening illness. It is a global human right as well as being a powerful adjunct to oncology that adds distinct value to the physical, emotional, social, and spiritual wellbeing of patients living with cancer . Integrating palliative care into the trajectory of standard oncologic care early has shown clinical effects on alleviating symptom burden, enhancing understanding of illness and prognoses, and improving both quality of life and overall survival for patients . Palliative care should be provided as a crucial health service, according to universal health coverage . It was explicitly recognized as one of the comprehensive services needed for non-communicable diseases in the WHO global action plan for the prevention and control of non-communicable diseases 2013-2020 . However, palliative care and pain management have received the least attention in the global health agenda. The goals of the Lancet Commission report on palliative care and pain relief can be achieved by identifying and managing the specific needs, pain and other symptoms, and concerns of patients with advanced cancer including refugees . A population-based analysis of adult death registry data from the Jordanian Ministry of Health shows that the annual mortality rate rose from 6792 in 2005 to 17,018 in 2016 . In Jordan, hospitals accounted for 93.7% of all fatalities, while both Jordanians and non-Jordanians had a rise in hospital deaths from 2005 to 2016 . The need of palliative care is rapidly increasing; however, palliative care is not routinely available across Jordan . In addition, Jordan is experiencing difficult healthcare issues as a result of the influx of refugees from numerous regional conflicts, notably Syria. The lowest expenditure of cancer care for Syrian refugees is estimated approximately 2.09 million euros annually . Using diagnosis-specific cost information from the King Hussein Cancer Foundation, it is projected that 869 Syrians are diagnosed with cancer each year in Jordan, costing roughly 15.6 million Jordanian dinars for their treatments . Access to cancer treatment is poorer for refugees and immigrants than for other Middle Eastern citizens . Prior to, during, and after displacement, they frequently encounter stressful and traumatic situations , as well as a heavy burden of physical, emotional, mental, and financial obstacles . Up until recently, humanitarian emergency and crisis did not include palliative care, which provides holistic care and support to people who are experiencing serious health-related suffering . What matters to patients with advanced cancer and their caregivers from refugee population in Jordan has not been explored. A systematic review indicated a lack of evidence on palliative care needs and interventions in humanitarian crises, difficulties in providing palliative care particularly in the context of limited resources and guidelines, and the importance of contextually appropriate care . The COVID epidemic revealed both potential and deficiencies in the palliative care response to health system need to provide better care at the end of life . In addition, it is unclear what constitutes person-centered care in populations affected by conflict, as they may have specific concerns in the dimensions of physical, emotional, social, and spiritual wellbeing. This study aimed to identify what matters to adult patients with advanced cancer and family caregivers in Jordan including refugees, in order to inform appropriate person-centered assessment and palliative care in conflict-affected populations. --- Methods --- Study design We explored the unique needs, specific experiences of, and preferences for palliative care from the viewpoints of patients with advanced cancer and family caregivers in Jordan using a qualitative cross-sectional design through individual interviews. The guidelines of the Consolidated Criteria for Reporting Qualitative Research were adhered to . COREQ is a 32-item checklist for explicit and comprehensive reporting of in-depth interviews and focus groups. --- Setting and participants The study took place at two sites in Amman, Jordan: a comprehensive cancer center that manages around 60% of the country's cancer cases and a public hospital that offers some supportive care. The eligible participants in this study included patients who were ≥18 years old with advanced cancer and received care at one of the study sites, and informal caregivers who are defined as "unpaid, informal providers of one or more physical, social, practical, and emotional tasks. In terms of their relationship to the patient, they may be a friend, partner, ex-partner, sibling, parent, child or other blood or non-blood relative" . People from Jordanian and refugee populations who met the inclusion criteria were invited to participate in this study. Patients deemed too unwell to be contacted by healthcare professionals, and those unable to speak Arabic or English were excluded from the study. In order to maximize variation in age, gender, place of origin, and primary diagnosis, participants were purposively sampled. Patients and informal caregivers were recruited and interviewed separately. Oncologists, palliative care physicians, nurses and other healthcare professionals who were working at the two sites during the study period helped to identify and first approach the eligible patients and family caregivers. They received a study training session which covered the topics of the eligibility criteria, how to identify and approach potential participants, and informed consent process. Then they applied the knowledge and skills learned from the training to screen eligible patients including both inpatients and outpatients and provide them with information sheets. The dedicated research team contacted those who expressed their interest in taking part in this study, gave them more information about this study, and responded to any question they had. Similar consent process was adopted for recruiting caregivers. 24 hours or longer were given to all potential patients and caregivers if they desired more time to consider their participation. Written consent was obtained from those who decided to participate. All study materials including information sheet and consent form were translated from English into Arabic using forward/backward translation to enhance accuracy. --- Data collection Between October 1, 2018 and May 31, 2019, the research team conducted in-depth semi-structured interviews with participants in their preferred time and locations. The interviewers have a wealth of knowledge and experience in both qualitative research and palliative care. Before participants gave their consent, the interviewers had no relationship with them. The development of topic guides for patients and caregivers was informed by a review of the research evidence on the experiences of refugees in Jordan , and the needs of palliative care in humanitarian emergency and crisis settings . The topic guides were then improved through regular discussion among wider cross-national research team members. The topic guide for the patient participants covered the experiences of having a terminal illness, facing death, and receiving support from family; personal priorities, needs, and concerns, the needs, experiences, and preferences of patients with advanced cancer in terms of palliative care ; and what would make care more patient centered. Apart from these, the needs and concerns of the family caregivers themselves, as well as their experiences with providing care for a person with advanced cancer, and opinions on the quality of care were also explored. Data were collected until we reached information power . Each interview was digitally audio recorded and the interviewer took field notes if needed. --- Data analysis These interviews were anonymized, transcribed verbatim by GA, and then translated from Arabic into English by AA. The researcher from the United Kingdom and the researcher from Jordan jointly coded the data in QSR NVivo 10, which were then analyzed using thematic analysis. To establish a coding framework, the two researchers independently examined seven transcripts. They then used that framework to analyze the remaining transcripts. As the data collection process continued, the data were simultaneously transcribed, translated, and analyzed. The categorization and comparison of interview data allowed for the discovery of recurrent themes and sub-themes in the dataset. Themes that overlapped were combined under descriptive names, while themes with few quotations were investigated. The data were continually examined during this process to learn more about the connections and relationships between the themes. Researchers discussed the themes and sub-themes when they were emerging to increase reliability and dependability. --- Ethics and project management The Research Ethics Committee at King's College London , King Hussein Cancer Center , and the Jordanian Ministry of Health granted relevant ethical approvals. The study complied with the Declaration of Helsinki . Throughout the study, the research team upheld the study's integrity, patient privacy, and data confidentiality. The UK and Jordanian members of the steering committee regularly met to discuss the study's overall direction and review its progress. --- Findings --- Participant characteristics A total of 71 eligible people were approached and invited to participate in the study, of which only a native Jordanian declined. No difference was identified in the overall response rate or willingness to participate in the study between native people and refugees. 70 participants were interviewed including 29 refugees . Patients ranged in age from 26 to 75, with an average age of 54 years. They were of six nationalities . Refugees' duration of stay in Jordan ranged from 6 months to 50 years. All the participants were Muslim except one patient who was Christian. The length of interviews varied from 12 to 97 min . All participants answered the questions in the topic guide. Only in two interviews conducted with the patients, their family caregivers also joined the interviews to accompany the patients but made no or limited contribution to the actual discussion. --- Themes Four main themes were identified : Information, communication, and decision-making; Priorities and concerns for care and support; Role of spirituality and Islam; and Unmet support needs of family caregivers. These four main themes and ten sub-themes are presented in Table 2 and supported by direct quotations from the interview participants below. A unique combination of three letters and four numbers was used to represent each participant . Care for a sick family member? --- Number of people to live with --- Theme 1: Information, communication, and decision-making --- Information needs Most participants believed that the patients had the right to know everything about their condition. "I want to know which stage the disease have reached. Is it bigger? Is it smaller? Maybe it's gone! But they just prescribe me meds and painkillers." The patients emphasised the importance of face-to-face consultations and valued hearing the opinions of more than one medical doctor. Mutual trust was described as a fundamental aspect of the doctor-patient relationship. Building strong trust-based relationships with the patients could help to achieve their optimal health outcomes and care experiences. "I prefer coming in person. I am already coming here so I felt that it is better to consult them face to face. Patients' lives are precious, so there should be more than one opinion involved. A doctor can make mistakes, but when it is more than one doctor, the chance of making mistakes is smaller." When the patients were informed about their condition and treatment plan, they felt that their worries and anxiety were reduced, and they had more trust in the clinicians treating them . "If I have a question, I would ask the doctor. He's the one responsible for my case so he would be more helpful. I think patients would prefer to have information directly from their doctor rather than online." "A doctor is a person who cares about their patients and not see them as a source of money and still care because the reward of the doctor is not the money, the reward is that God would bless that money and effort. A patient life is trusted in the hands of a doctor and that's why they should be accurate as this is a serious disease and should attend to the patient's complaint." Most participants expressed the view that doctors played an important role in information giving. They believed that doctors were good sources of information . Heads of department were seen as being more knowledgeable and respected. The health care system is reportedly embedded in a hierarchical culture and structure where the voice of doctors and senior managers is often given more importance than others. Both patients and caregivers considered that receiving positive information could boost patient spirits and make a significant difference in their physical and psychological wellbeing, even though later it was honesty that was valued. "… he would listen to a doctor rather than a nurse. Because he likes to hear the information from the source, so when it is from these two doctors, he listens because I think they're the head of department. Because they told him from the beginning that everything was ok and because they gave him a morale boost. He Refugees' duration of stay in Jordan trusts the doctor more than he trusts his son, because his son might lie to him to make him feel better and he knows that his son's love will prevail, but the doctor will answer his questions so he will trust the doctor more." Honest communication Participants commented that lack of honest communication and disclosure was not valued and although prayer was very important, it should not be used as a euphemism for breaking bad news. They also expressed concerns that information was often not shared in case it would cause patients to disengage with treatment. "I remember asking the nurse in Saudi Arabia about my mother's condition and she told me there was nothing we could do but pray. She should have told me about her condition, I am her companion, I can handle it, but what she said meant she was going to die." "Maybe they don't provide adequate information because they worry about the patient's feelings and to ensure they accept the treatment. If you tell a patient their body is no longer responding to the treatment, they might decide on pulling the plug on the whole thing." However, some participants highlighted that clinicians would need to know their patients well enough to be able to assess whether their patients could accept bad news and judge when would be the appropriate time to communicate this news to their patients. Patients reported that communication must be personalized and raised the importance of clinicians correctly judging whether to communicate with patients directly or via family. A few participants expressed the views that clinicians should only inform the family of 'bad news' as a way to protect the patients. "The doctor should also be smart enough and know that some patients cannot tolerate certain news so the doctor should have an insight. He should know I am a nosy person and wanting to know every single detail, otherwise I won't receive treatment, whereas other patients cannot tolerate such news and he should inform his family instead." "She should tell the family, but I am against telling the patient. He would be crushed regardless of how strong his faith is … In my opinion, patients shouldn't be told they are terminal, or that they are not to be given chemotherapy anymore. They should leave that to God. I wished I had met his doctor, but I didn't, I wanted to tell her she shouldn't have told him whatever she told him." Informed decision-making Other participants also explained their preference of being informed about different treatment and care options beforehand and getting timely advice. This would help them to make informed decisions. "They should tell him everything they intend to do and give him the chance to make decision, even regarding the type of painkiller he wishes to be on. They should tell him about possible complications. The symptoms I experienced from the chemo really burdened me. I didn't know anything when I took the first cycle, so I advise anyone who is sick to tell their doctors to explain to them before taking any step." In addition, timely access to information and internal team communication was crucial to patients and they valued this as a marker of quality care. "We have seen the palliative doctors three or four times since the admission. They come and talk to him then they talk to us outside. If it happens that I don't catch the palliative doctor I can always go see him on the second floor and ask him … They are great when it comes to follow-up. Even the nurses. They have good communication between each other and if anything comes up they immediately contact the patient…" . --- Theme 2: Priorities and concerns for care and support Getting back to normal and managing pain Among our sample of patients with advanced disease, their priorities included cure and recovery , returning to their "normal" life, and to continue contributing to their family . "I wish I could go back to my normal life … I want to be active again. I can beat the disease, I just need to feel better and at ease, so I can beat this disease faster." "I have a family that I am responsible for, I might be an old man, but I still care about them and I still hold myself accountable for them. This responsibility makes me worried, of course it does, whom would I worry about if it wasn't my kids? Myself?" Some participants stated that managing pain was a top priority for them. Family was still often a dominant theme when discussing pain. "I want my pain to calm down so that I can be there for them … I want to reduce the pain so I can be around them again. Go out with them on the weekends." Social support and financial challenges For all refugees, they expressed the view that they would like to receive cancer treatment in Jordan and hoped they could return to their home country eventually. "We have two homelands; one that lives in us, and another in which we live in. Jordan is our home which we live in, respect, and appreciate. We are ready to fight for it. As for our home that lives in us, we hope one day we will return to it. The disease made me stronger. I don't think about my disease. I believe that this illness doesn't make my life any shorter … So my lifespan has nothing to do with this disease." Some refugees raised concerns that they could not afford medication and treatment any longer and that they were experiencing financial challenges. Any financial aids that could help them to get medication and cover basic living expenses would be a priority. "There isn't any money. I wish they would help us with the pain and lower the price of the medication." "I worried about my kids. Financially, I want them to be covered, but my financial status is below zero. We rented two rooms in a house that leaks when it rains and has no heating." "Its life and the hardships we're facing. I am burdened financially and mentally. I cry constantly because our life is sad, and we suffer financially. It is the money, the loss of my daughter and my illness. Yes, because we don't have any money." Being able to contribute to their family and society A few participants mentioned that they did not worry about their own disease but were more concerned about their family and other people. Family roles and responsibility mattered most to many participants. They had a sense of needing to put things "in order" and plan ahead. This links strongly to the theme about honest communication about their conditions. "I am not worried about the disease, but I want to make sure my kids have a good future. My son is 26, if he had gotten married, wouldn't I be seeing his kids already? Seven years ago, I thought I was going to die because I had cancer, so I wed my other son, he was 22 years old at the time." Furthermore, their priority was to be able to continue to help others and contribute to society. "When I was going to surgery, the doctor asked me if I was afraid of anything, and I told him "What would I be afraid of? The Prophet said my people live sixty to seventy years, and I have already passed the limit by 5 years". He started laughing. Why would I be scared? I see this disease as a blessing, not a curse … I help people. There is nothing better than helping people. When you help people, you feel that you exist. This is a person's value in the society. You can't put a price on helping people out. In the association, we help out orphans and people in need." --- Theme 3: Role of spirituality and Islam Strong faith in God Most participants expressed their strong faith in God and felt that having faith comforted them and helped to prevent worries, anxiety, and depression . "I feel relieved when I pray, it's like my burden were taken away. I love praying … I have more faith and trust in God because he is with me and he answered my prayer, he never forgot about me. It makes me strong, and my faith grows stronger, it gives me strength … If I let desperation into my life, I will feel worse. I already have the disease so why make it harder for myself? I pray, I strengthen my faith and be optimistic. Those around me grant me strength. I am optimistic and I believe I will get out of this, and that God will cure me." "We are all believers, but when you are in this condition, you feel like you need to stick to your prayers and all the forms of worship, I became more adherent to them. I know they all love me and pray for me, but it is God who will cure me, I always ask him to strengthen me, and that's when I feel that he loves me, I like to think that he is putting me through this as a form or redemption from my sins or to get me closer to him…" "I pray, praise be to God. I always read the Quran and rarely skip a prayer, I do it as much as I can. I pray in the mosque and go to Jumaa Prayers [Jumaa Prayer is a special prayer held at noon time every Friday, it includes a short lecture and a prayer. It is similar to Sunday services in Christianity]." Believing in God or taking medications Furthermore, participants believed that a cure for their illness would be in the hands of God, and that they could leave matters to God and God's mercy would exceed all, even though they also valued the use of medications. "I am not concerned about the progression of the disease because I have faith in God. Sometimes I worry that my pain would be unmanageable, but I think increasing the morphine would help with that. Like I said before, I am content with whatever God has written for me. Life and death are a godly matter…" "I talked to him over the phone, and I started to read some Quran to him when I came here and he felt better … I believe in what God said in the Quran; "And we send down of the Qur'an that which is a cure and a mercy to the believers". It is all about believing. If you believe the Quran will cure you, then it will. God grants us immunity when we believe in him, and if this immunity is disrupted, all the medications in the world will not help … We do what we can do and leave the rest to God. We try to make all causes come and leave the rest up to God. We knock every single door, believing it will eventually come up to God … I don't believe it is serious because I have faith in God that there isn't a disease without a cure. It could be something very simple. We just have to take every measure and pray to God to cure him. I know a stage 4 cancer is serious, but I know God's mercy exceeds all." Participants highlighted that their social network was fractured due to being away from their home country, and prayer and Quran reading became the most comforting and meaning thing they could do. "God is all I have. What can I possibly do? I go out and sit by myself. I cry a little, then I leave things in the hands of God. If was in Syria, I would be surrounded by my family and relatives, but here I have no one. He reads from the Quran and prays. Some people started praying or reading Quran after him getting diagnosed, but nothing changed for him because he already did that even before his diagnosis. These last days he likes to read from the Quran when he's alone." . --- Theme 4: Unmet support needs of family caregivers Caregiver burden Participants described family members having "their world turned upside down" . They worried about the patients, became sleepless, and reduced the time they spent away from home and stopped socializing with others . Patients were aware that their family members knew more about their conditions than them, which reconfirmed that families were often informed instead of the patients. This brought a great burden to family caregivers. "They know I am sick, and they know I have the disease. They know more than I do because they ask the doctors. They worry about me. They worry I might feel sad or anything. They are more informed about my illness … my disease affected the family…" Family caregivers often lost social and working life due to their caring role and had to manage the mental health of the patient. They also often suffered from their own poor health. "I used to be out of the house most of the time, I would stay at home for a maximum of one to two weeks, but since my mother got sick, I am staying with her. It all depends on how well you accept the fact that this is fate, and you can't change it. It is tough for her, she thinks anything told to her is because she is dying, she becomes very sensitive and angry in an intolerable way." "I stopped going out after he got sick. I don't visit people anymore … There is nothing else I can do. I can't physically take care of him, I am an old lady and I have diabetes." Support and training needs Family caregivers felt sad when they saw how the disease had changed their loved ones but there was nothing they could do to help. When they received bad news, family caregivers had to conceal or give a positive interpretation of poor prognosis, and this brought a psychological burden on the family. "There was nothing I could do. He's a 23-year-old boy and my daughter's fiance, surely that would make me upset. I felt sorry for my daughter who comes with him every day. I didn't tell her that the cancer had spread in his entire spine … I am trying to spread some positivity in the air because she spends her time crying … What do I do? I talk to her and try to cheer her up. I tell her "Let's have a cup of coffee" or "let's go do some grocery shopping". I try to change her mood. I'm not fine myself. It hurts me to see how he was and how he is now. I cry a lot, but not in front of him. There is nothing we can really do." "It has a psychological impact, of course, when you see your own son not able to go to the bathroom, of course you'll feel bad. When he is a young man at that age and to be this disabled, it kills you to see your son like that. It kills me to see my son helpless … My own son who was my rock, to see him being destroyed like this. He was really helpful to me, he carried them on his shoulder, and to see him like this. He was a pillar in this family." They were affected physically and emotionally by worrying about and caring for the patients. Family caregivers need support and training but often could not get it. They felt guilty when they saw their relatives suffering but could not help. Not just courses on how to deal with a sick person and talk to them, I believe these are skills that should be passed on to all people surrounding the patient because when a person gets sick, all of those around them are also sick … When you see a person going through so much pain and you can't do anything about it, that makes you feel guilty. When you have parents who are at an advanced stage, it is nice to provide guidance to accept it and explain to them that there is nothing they can do. This is very important, because providing support to the family at such a stage is very important. Some young caregivers stopped education because of their caring role. Even the children in the family having patients with advanced cancer, tried to offer help beyond their age . "I stopped studying. I failed high school because I only wanted to help my mother. She kept encouraging me to study and I told her I only wanted to be around her and help her." This was a real challenge for young children when they were seeing very sick parents but being told they were well. "I tell them he's well. No, because they see him at home and how weak he is, sometimes he can't get out of the bed or can't eat. They cry sometimes and say "I don't like seeing daddy like this"." --- Discussion This study reveals the importance of honest communication, community support and spiritual care for people with advanced cancer in Jordan and highlights the impact of the unmet needs of family caregivers. Open and effective communication about their cancer illness, treatment plan, and appropriate spiritual and psychosocial support have been identified in our study as the things that matter most to patients and family. Yet, these aspects of care are often underserved or overlooked. Health literacy is crucial in health care, particularly in the context of cancer where patients and family caregivers experience clinical uncertainty and suffer overwhelming physical, psychological, social, and spiritual symptoms, and financial burdens . Research shows that effective person-centered communication between health care providers and patients can improve patients' health literacy, which also leads to enhanced health outcomes ). An adequate level of health literacy is required to make informed decision, and several studies have reported that most cancer patients express a willingness to have their diagnoses and prognoses fully disclosed and show preference for participation in treatment decisions. However, according to the family caregivers interviewed in this study, patients' knowledge of their diagnosis and prognosis could have a negative impact on how their illness progresses in the future and lead to stress, despair, hopelessness, and low self-esteem in patients. Therefore, they preferred nondisclosure of information . These findings were corroborated in a multicentre cross-sectional qualitative study in India, which demonstrated that while clinicians were motivated by professional values to disclose cancer related information, they experienced pressure from family members to conceal information . Despite the fact that the majority of patients expressed a preference of face-to-face consultations for full disclosure of their cancer diagnosis and prognosis, family members frequently make decisions in many non-Western societies and nondisclosure is more likely to occur in "family-centric" Asian cultures . A systematic review of 53 studies which explored prognostic disclosure in cancer care using different communication methods and interfaces found that cancer patients usually know their diagnosis, and to some extent, their prognosis, even though their clinicians and family members do not disclose information . In our study, some participants expressed the views that clinicians should know their patients well to be able to judge whether to communicate with patients directly or via family, particularly when breaking bad news. Patients often hesitated to ask questions and were not involved in decision-making process, which potentially led to patients' poor insight into their disease, lack of consent to treatment, and limited access to palliative care. In addition, there was a clear hierarchy within the team in terms of information giving and communication. Our findings suggest that patients strongly trusted the oncologist and people in senior leadership roles , and doctors were seen as good sources of information instead of nurses. How the patients and their families who were interviewed view disease, suffering, and death and dying processes is greatly influenced by spirituality and Islam . According to a systematic review, patients and their families accepted their diagnoses because they believed that Allah planned their destiny and path. They developed coping mechanisms by engaging in Islamic practices such as praying to Allah and reading the Qur'an which brought them hope, internal peace and comfort . It is reconfirmed by our findings in this study indicating that patients and family caregivers became closer to God and performed prayers particularly in the context of advanced cancer and when they were experiencing pain. They believed that Allah has more power than medication and could give them the strength to conquer everything. Some of the participants in this study are refugees who experienced compounding trauma related to war and disease and were receiving cancer care in Jordan. They reported that their social support network was fractured, therefore, religious practice and prayer were described as even more important for them, which has been published in a separate paper . A cross-sectional study with 95 palliative care outpatients has shown that spiritual wellbeing had a positive correlation with quality of life and the dimensions of physical, emotional, and functional wellbeing. In addition, it was associated with being less uncertain, more satisfied with one's decision, and feeling more informed and supported . It is crucial to determine the role and influence of spirituality in palliative care, however, evidence is limited on the perceptions of spirituality among Muslim patients with advanced illness and their families. Financial challenges were also identified as key issues refugees were experiencing in our study and they often could not afford health care costs and basic living expenses. It is recognized that migrants usually undergo a difficult integration process to live in the hosting community. This process involves the cultural and economic adaptations . Our findings indicated that accessing to and receiving cancer treatment and palliative care under the hosting healthcare system added another layer of complexity into the life of refugees. In addition, the relationship between migrant patients and health care providers may be impacted by cultural differences and communication barriers . For example, clinicians may be reluctant to discuss health conditions and care with migrant patients as communication may take more time and effort. Refugees may consider that communication with their clinicians results in stereotyping, so become less likely to share their feelings, needs and concerns with them . Cancer patients particularly refugees in Jordan often experience unmet multidimensional needs, symptoms, and concerns. Person-centered care is considered as an essential component of highquality healthcare for people with palliative care needs across the globe . In a cross-national, cross-sectional qualitative study, interdependency and collectivism have been highlighted in relation to person-centered care, including "the benefits of social support systems, the value of interpersonal harmony, the interdependence of a person's and their loved ones' well-being, and the value of group-based learning, peer-to-peer support, and care in the community". According to this study, in order to provide personcentered care, the healthcare system must have certain structural components in place such as partnerships with community-based workers and professional training in person-centered care values . In this study, a lack of ability to engage in family responsibilities due to illness and treatment was identified as a priority concern of the patients. Continuing "responsibility" to family was seen as important. A few participants mentioned that their priority was to be able to continue contributing to their family and that they were more concerned about their family and other people than about their own disease. Evidence suggests that caring for a loved one who is nearing death is often physically and emotionally intensive. In addition, family caregivers of patients with advanced cancer frequently experience high level of distress, depressive, and anxiety symptoms, which highlights the critical need of psychological and emotional support for both patients and their family caregivers . However, family caregivers' own needs are often unidentified, unmet, and neglected. The level of care burden can be persistent or increasing over time, particularly in the care situation of refugees with advanced illness where they have two homelands, one which lives in them and another which they live in. As a result of being cut off from their wider social support network due to being abroad, caregivers experienced heightened anxiety and responsibility . In addition, our study reveals that children wanted to be involved but were often shielded and excluded by adults throughout parental life-limiting illness. Children's experiences of caring for a dying parent were reported emotionally taxing and the required heavy caregiving responsibilities may have had an impact on their academic performance. This is consistent with the findings of a review ensuring that the voices of children whose parents have terminal diseases are heard and acted upon . Prior studies have suggested that staff shortages and budget constraints in Jordan make it difficult to identify palliative needs of patients and provide holistic care . These findings can help improve access to palliative care by structuring assessment and services. A regular holistic needs assessment with standardized instruments such as the Integrated Palliative care Outcome Scale is required for early identification and intervention of symptoms and concerns . Adequate training including symptom management, communication, psychosocial and spiritual care is important for healthcare providers to strengthen their capacity to deliver dignified and person-centered cancer and palliative care. In addition, to make it easier for family caregivers to balance paid work with caregiving responsibilities and lower the risk of burnout during the trajectory of an illness and after death, greater support is required. Families should be trained and given the skills to care for their loved ones with advanced cancer. --- Strengths and limitations To our knowledge, this is the first qualitative study to determine what matters to patients with advanced cancer and family caregivers in Jordan including both host Jordanian and refugee populations. It not only emphasizes the importance of identifying and addressing multidimensional needs of patients and their families, but also provides recommendations of how person-centered and culturally appropriate palliative care could be better implemented to improve outcomes. We recruited the participants from two study sitesa specialist cancer center and a public hospital, enabling that highly diverse experiences and needs of people from different backgrounds have been represented and captured. Cross-national collaboration has also made it possible to acquire, analyze, and interpret data from a variety of cultural perspectives. A study limitation is a relatively small sample size of refugee population for family caregivers . The responses to the topic guide may have been more diverse and in-depth if there had been more refugees from caregiver participants. Additionally, more patients with breast cancer and family caregivers and Syrians were interviewed than the other groups, which might have made it harder to compare and contrast the viewpoints from other groups. Future research should explore the needs and experiences of cancer and palliative care among patients with other cancer conditions than breast cancer and refugees from a variety of original countries. What matters to people with advanced cancer and their families is unique and context specific. It is not appropriate to immediately extrapolate data generated from Western countries to Muslimmajority nations like Jordan, where 95% of the population follows Sunni Islam and there is the second highest share of refugees per capita globally -most affected by the Syria crisis . Further investigation is needed to understand its cultural and spiritual assumptions, and the population with the underpinning evidence generated should be scrutinized. --- Conclusion Our study gathered first-hand information about the multidimensional and unique needs of patients with advanced cancer and families such as communication and information needs, and explored the role of spirituality and Islam, and the impact of unmet family support. It provides a robust evidence base to inform culturally appropriate cancer and palliative care in Jordan. Truth-telling is highly valued and essential to achieving person-centered care and informed decision-making. This study also reveals specific concerns in conflict-affected populations, reflecting the experience of prior losses and fracturing of existing social networks and support. Religion plays a crucial role in supporting refugee communities, and consideration should be paid to the needs of patients and family caregivers when caring for a patient at home without access to their communities of origin and the support they accessed. --- Data availability statement The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation. --- Ethics statement The study involving human participants was reviewed and approved by the Research Ethics Committee at King's College London , King Hussein Cancer Center , and Jordanian Ministry of Health . The patients/participants provided their written informed consent to participate in this study. --- --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Introduction: Universal health coverage highlights palliative care as an essential component of health services. However, it is unclear what constitutes personcentered care in populations affected by conflict, as they may have specific concerns in the dimensions of physical, emotional, social, and spiritual wellbeing. This study aimed to identify what matters to patients with advanced cancer and family caregivers in Jordan including refugees, to inform appropriate personcentered assessment and palliative care in conflict-affected populations. Methods: Cross-sectional face-to-face, semi-structured interviews were conducted at two sites in Amman. Adult patients with advanced cancer and family caregivers were purposively sampled to maximize diversity and representation. Interviews were digitally audio recorded, anonymized, and transcribed verbatim for thematic analysis. Findings: Four themes were generated from 50 patients (22 refugees; 28 Jordanians) and 20 caregivers (7 refugees; 13 Jordanians) (1). Information, communication, and decision-making. Truth-telling and full disclosure from clinicians was valued, and participants expressed concerns that information was not shared in case patients would disengage with treatment. (2) Priorities and concerns for care and support. Participants' top priority remained cure and recovery (which was viewed as possible). Other priorities included returning to their "normal" life and their "own" country, and to continue contributing to their family. (3) Role of spirituality and Islam. Most participants had strong faith in God and felt that having faith could comfort them. For refugees whose social network Frontiers in Oncology frontiersin.org 01

Over the last two decades, social media has continually grown in importance. As its usage has expanded, so too have questions about its impact on society and politics. In one recent illustrative example, the role of social media has featured prominently in discussions about the January 6th attack on the U.S. Capitol, as evidence emerged that some groups made extensive use of platforms such as Facebook to build momentum for and coordinate their activities . Simultaneously, scholars have made substantial inroads towards increasing our understanding of social media and its impact, on outcomes ranging from fake news dissemination and partisan polarization to users' ideologies . The vast majority of these studies either consider a sample of social media users on the platform itself and Barberá et al. ), or they use a survey sample -whom researchers ask about a given social media platform -in isolation and Mneimneh et al. ). A handful of recent studies, however, have attempted to more directly tie online to offline behavior and characteristics by marrying these two approaches . Scholars pursuing this union typically task respondents with completing a standard questionnaire, as part of which they are asked whether they would consent to linking their social media information with their survey responses. Researchers then use information provided by the respondent to link their survey and social media data. Such survey-social media linkage opens up a number of new avenues for innovative research, as it carries the potential to increase our understanding of who engages in certain online behavior and what motivates them, how stated and offline preferences and behaviors compare to revealed and online behaviors, and the characteristics of a given social media platform's user population. While survey-linkage thus offers a number of potentially positive benefits, it also carries challenges. In this paper, we focus on one issue inseparable from the survey-linkage process: possible biases introduced through the elicitation and validation of social media account information. Across elicitation methods and social media platforms, it has been well documented that only a fraction of survey respondents asked for their social media account information actually provide it . Further, only a subset of provided accounts are ultimately validated as actually belonging to the stated user. Under the total survey error framework, the former issue might be categorized as an instance of non-JQD: DM 4 @Who 3 response error at the item level and the latter as measurement error due to respondents . As explained by Amaya et al. , measurement error due to respondents may be particularly problematic in the case of survey-linkage exercises, for instance because of outdated information or missing values on the variable used for linkage. Scholars adapting the TSE framework to Big Data have alternatively referred to issues stemming from validation challenges as "processing error," noted that not only respondents but also researchers often play an integral role in the success or failure of validation efforts, and have accordingly called for greater attention to methods to more effectively detect and remove invalid users . Figure 1 illustrates the relevant samples in a typical survey-linkage study. First, researchers begin with a survey sample, from which they can identify a subset of stated social media users, and finally a smaller subset of users who provide linking information that is successfully validated. 1 An example of a study utilizing all three samples would be Guess et al. , who start out with an online sample, which they then restrict to social media users for their investigation -in part, to stated Twitter users. 2 Additionally, they investigate actual online behavior for which they utilize a sample of validated handles. Depending on the approach and inferential aims of the researcher, the potential for errors resulting from such a linkage process are numerous. 3 Of particular concern as we think about possible biases resulting from such errors is the question of whether errors differ systematically among different types of respondents. For example, more educated respondents might be more likely to provide account information and to have their accounts be validated . Researchers unaware of this fact could subsequently run the risk of creating analytic error, for instance in the weighting and adjustment strategies used or the inferences and interpretations made . 1 As we note later, however, not all researchers in practice collect data on all three samples. 2 The social media platform "X" was called Twitter at the time of writing, and we accordingly use "Twitter" throughout this manuscript. 3 Indeed, while we focus more narrowly on non-response error at the item level and processing error, there are a number of additional possible errors that might arise: for example, respondent selection errors at the initial survey sampling stage that make the sample systematically different from the survey and -where relevant -target populations, non-response and measurement errors relating to stated social media platform use, or systematic differences between validated users who engage in a behavior used in analyses versus those who do not and who are thus excluded from analyses. For example, a researcher aiming to infer from the validated sample to the underlying social media platform population, or to assess differences between the validated sample and the stated user or survey sample, might incorrectly attribute educational characteristics and related associations caused by linkage errors to real features of social media users and how they differ from non-users. Our aim in this paper is accordingly to provide researchers with more information as regards item non-response and processing error in the elicitation and validation of social media account information. 4 Our hope is that by providing descriptive results on these errors and their possible consequences for the units under study, scholars can make more informed methodological choices. In particular, we hope that these descriptive insights can help scholars engaging in survey-linking exercises to reduce the likelihood of analytic error. In service of these aims, we investigate whether and how samples of stated Twitter users differ from survey samples and from the subsets of survey respondents who provide validated Twitter handles. To do so, we collect data from five different sources covering more than 31,000 respondents. To evaluate possible non-response and measurement errors and their consequences for the units under study, we compare individuals with validated Twitter handles to those who say they use Twitter, and to the survey sample. In the following Section, we present our data sources. We then explore the characteristics of the three samples displayed in Figure 1, as well as how they differ -with possible consequences for researchers' analyses and interpretations. We conclude with a discussion of our findings as well as our thoughts for possible future avenues for research. --- Data We draw on five different sources to investigate differences between survey, stated Twitter, and survey-linked Twitter samples. First, we draw on an original dataset collected by one of the authors of this article and which motivated our interest in the topic . The online Qualtrics panel sample for this study was restricted to the U.S., used quota sampling to approximate representativeness on gender, age, ethnicity, and education, --- Figure 1. Relevant Samples in Twitter Survey-Linkage Note. Survey sample refers to a researcher's initial sample of survey respondents, stated Twitter sample refers to the subset of those respondents saying that they use Twitter, and validated Twitter sample captures the further subset of stated Twitter users who provide account handles that are subsequently successfully validated. and sought to ensure a 50/50 split of Republican and Democrat identifiers. Haas collected Twitter account information using a simple text-entry option wherein respondents were asked to share their handle if they had one. We subsequently cleaned entries and we exclude unusable and bogus responses; see Appendix B.1 for a complete breakdown of the cleaning procedure. 5 Of the 8,040 survey respondents in the dataset, we record 891 who provided validated Twitter account information. We supplement our dataset with data from four additional sources. To identify additional sources of data, we surveyed the literature for papers and data sources which either used survey-linkage methods or could inform us about their possible consequences. We searched and requested data in two waves. In the first wave, we searched loosely across different search engines, and in our second wave we searched systematically using 5 Results presented in Section B.1 underline the importance of careful processing and validation of social media data , as a significant portion of entries in Haas were determined to be invalid. As we note in that Section, however, researchers often do not specify their processing procedure and approaches vary widely across studies. We accordingly offer suggestions for future researchers tasked with completing such processing tasks. Web of Science and the search terms "Twitter Survey", "Twitter Linkage", and "Twitter Questionnaire". In total, we contacted 12 possible sources and obtained usable data from five corresponding authors as well as one dataset which was readily available online. Two of these datasets are however excluded from the main analysis as discussed below. Table 1 lists our data sources, as well as the survey population the researchers were sampling from and the topic and year of study, sample size, vendor, and method of linkage for each. Here we also list Hughes et al. , for whom we tried to attain the datasets used in the study. For this we contacted the owners of the data, Pew, but they did not agree to share individuallevel data or breakdowns of demographics by sub-population with us, citing concerns about participating panelists' confidentiality. While potentially of high value, their data therefore did not allow us to compare from one linkage stage to another; we accordingly left them out of the main analysis. We list their data here, as we supplement our comparative exploration of attrition rates across studies with their findings in one of the following sections. As can be seen in Table 1, our data sources differ in their survey populations and to some degree in their methods for implementing survey-linkage. With regard to survey population, studies differ on two key points. First, whereas some of the studies started with a survey sample -often designed to approximate, at least on key demographics, the U.S. population -and then asked about social media use and elicited account information, others pre-selected for Twitter users. Second, some of the former set of studies did not ask both for stated Twitter use and the provision of handles, but only one. These two points mean that several datasets can only inform us about two of the three samples pictured in Figure 1. With regard to elicitation method, most sources used similar methods as Haas , eliciting Twitter handles through a simple text-input field. In the Discussion Section, we also investigate whether observed associations generalize to different types of data sharing and to different regions than the U.S. We do so by exploring results in two additional datasets. First, Lyons et al. ask respondents whether they would consent to browser monitoring. While consenting to browser monitoring is more intrusive than sharing a Twitter handle, it could theoretically be used to facilitate the identification of Twitter users; further, research indicates that individuals who allow for more intrusive data sharing measures are also more likely to provide less demanding linkage information when asked . We thus believe that data Note. Twitter sample size refers to the number of respondents stating that they used Twitter, whereas Linked sample size refers to the number who provided validated Twitter handles. Secondary datasets are used to probe generalizability of findings to different data sharing requests and non-U.S. regions , or only for analyses of attrition due to data restrictions . See text for more information. from Lyons et al. , while different in its data sharing method, is still similar enough to our datasets measuring Twitter linkage to provide a meaningful comparison. Second, whereas all other studies are restricted to the U.S., Mosleh et al. collect data from an international convenience sample. While we feel both studies offer valuable additional insights, because of their differences, we nevertheless omit them when conducting our central analyses. Instead, we explore results in the Discussion Section and in Appendix Section A.3. --- Harmonization In order to compare demographics across datasets and linkage stages, it was necessary that we first identify and harmonize common variables of interest across datasets. For most of our analyses, we harmonized and combined five of the datasets listed in Table 1 into a single dataset containing information on various variables of interest. Table 2 contains a list of variables in our harmonized dataset and their summary statistics. --- Analysis We begin our analysis by first considering whether, and how, stated Twitter users differ from the subset of respondents who provide validated Twitter handles. Second, we evaluate how attrition from stated to validated Twitter users might affect an initial survey sample, as well as the conclusions researchers might draw as to the differences between the survey sample and a sample of Twitter users. Third, we conclude with a discussion of our results and their generalizability. --- Survey-Linkage Attrition Do we observe evidence consistent with survey-linkage attrition? To evaluate this question, we first consider whether there is a drop-off from the proportion of individuals in studies who say they use Twitter to the proportion who provide verifiable Twitter handles. Twitter user populations and thus allow for within-study comparisons of sample proportions. 6 In these studies, we observe a loss of between 10%-18%-points from the proportion of respondents who say they use Twitter to the proportion facilitating accurate identification of their Twitter account. A comparison of proportions across studies with data on only one or the other sample, is also consistent with survey-linkage attrition: we observe that the proportions of validated Twitter users in a given sample cluster at substantially lower values than do the proportions of stated Twitter users. This can also be seen in the change of proportions in the harmonized dataset, where the weighted average for indicated use is 49%, while it is 27% for the validated handles. A second important observation from Figure 2 concerns our lingering uncertainty about the "true" proportions of either population. We observe significant variation across samples in the proportions of stated and validated Twitter users: estimates of the former range from 21% to 76%, while estimates of the latter vary from 11% to 58%. While some studies' sampling methodologies are likely to produce more accurate estimates of their target populations, it is worth noting that substantial variation persists among datasets using similar sampling methodologies .7 For example, while both Guess et al. and Lyons et al. used quota sampling to ensure that their online samples approximated the U.S. population on key demographics, their estimates of stated Twitter users differ both by over 18%-points, see Figure A9. These findings call for further research into the "true" proportion of Twitter users and why estimates vary so widely across studies. In sum, while estimates vary widely across studies, we find evidence consistent with survey-linkage attrition. Next, we turn to the question of whether such attrition differs systematically across demographic groups. --- Investigating Whether Attrition is Systematic Does survey-linkage attrition differ systematically across different demographic groups? If so, we might mistakenly conclude, for example, that there are real differences between Twitter users and a survey sample when in reality these differences are attributable to survey-linkage attrition. To investigate this question, we first explore whether there are demographic differences between a study's initial survey sample, the sample of stated Twitter users, and the sample of validated Twitter users using a single dataset, from Guess et al. , which contains information on all three samples. Where stated and validated Twitter users appear to be similarly different from the survey sample, we might be more likely to conclude that a real difference exists between social media users and a survey or study population. In contrast, where stated and validated Twitter users differ from each other and from the survey sample, we might instead conclude that survey-linkage attrition plays a role in driving observed differences. Figure 3 displays differences between these samples on key demographics: gender, partisan identification, age, and educational attainment. We display sample averages with 95% confidence intervals. Results indicate that Twitter users vary from the overall sample on several demographics, but that moving from a Twitter user sample to one of validated handles does not introduce large differences. Thus, we observe that Twitter users trend younger than the overall sample, in that there are comparatively fewer individuals above 62 years of age and more between the ages of 32 and 62. Additionally, there is suggestive evidence that Twitter users might be marginally better educated and more likely to identify as Democrat as compared with Republican. Overall, differences between the three samples in the Guess et al. dataset are of small magnitude; however, a comparison of only the validated Twitter user and initial survey samples, which allows us to draw on more datasets, indicates that larger differences might exist with a more expanded analysis . To gain greater clarity into demographic differences across samples and using a larger of age and educational attainment . 8,9 We display results separately for each study for which we have relevant data, as well as pooling across studies. 10 A few trends are worth comment. First, we observe clear, systematic demographic differences between those who state they use Twitter, as compared with those who do not. Specifically, we find that stated Twitter users are more likely to be younger and more educated than non-stated users. Second, while we observe the same trends when comparing validated Twitter users to non-validated users, the magnitude of differences are substantially less pronounced. Thus, for example, while we estimate an increase of up to 21% in the percentage of stated Twitter users under the age of 45, the corresponding largest estimated increase for validated Twitter users is around 6%. A similar pattern is observed for education: whereas there is a large reduction in the proportion of those with a high school education or less when looking at stated Twitter users , this reduction is less pronounced when considering validated Twitter users . Third, when we limit our analysis of predictors of validated handle provision to those who stated Twitter usage, differences become more unclear. For age, coefficients range from negative to positive , with a pooled estimate around 0; for education, one dataset observes a reduction of 8%, while coefficients in the remaining two are close to 0. What are the possible consequences of the documented attrition? Overall, patterns for the two variables, age and education, for which we present results indicate that we should not be too concerned. Although we document substantial demographic differences between stated and non-stated Twitter users, results appear to indicate that attrition is less of a concern as regards the linkage exercise. To this end, we do not find consistent evidence among stated Twitter users that those who provide a validated handle differ systematically from those who do not. That being said, estimates vary across studies, and there are some 8 In order to make differences easily interpretable, we dichotomized both variables into whether an individual is below 45 years of age and whether they have a high school education or less. As the choice of cutoffs relies on the researcher's discretion, we illustrate in Appendix Figures A17-A18 how results would change if different cutoffs had been chosen using the validated handle category. 9 See Appendix Figures A5-A8 for similar analyses for gender, ethnicity, and partisan identification. 10 Appendix Section A.6 displays regression results corresponding to forest plot figures for age and educational attainment, as well as for additional demographic variables in our harmonized dataset. of smaller magnitude as concerns the provision of validated handles, as compared with stated Twitter use, also points to possible differences -for instance, it could be the case that younger people use Twitter more, but older people are more willing to share accurate handles -though it is difficult to say definitively given the changing set of datasets across samples. In sum, then, while there is some evidence of systematic attrition due to the linkage exercise, it is inconsistent and of much smaller magnitude than are differences between stated and non-stated Twitter users. In Appendix figures A5-A8, we present forest plots for additional demographics: gender, ethnicity, and partisan identification. Results are similar for partisan identification and gender as for age and education, insofar as there does not seem to be consistent evidence that the linkage exercise introduces systematic error.11 However, we do observe some support for the notion that white stated Twitter users are consistently more likely to provide validated handles than are individuals who identify with other ethnic identity categories. Even where observed demographic changes across samples are small, they can still be large enough to be of substantive and statistical importance to researchers. Such changes may be of particular importance to researchers who aim to make inferences from the validated Twitter sample to either the survey or stated Twitter user sample . To further consider and illustrate the possible consequences of survey-linkage for sample composition, we therefore next evaluate how an initial survey sample and a stated Twitter user sample might differ from a validated Twitter user sample on key demographics given the observed amount of attrition. --- Illustrating Possible Consequences of Survey-Linkage Attrition In Figures 6 and7, we show how survey-linkage attrition might alter, respectively, an initial survey sample and a stated Twitter user sample on key socio-demographics. Many online survey samples, including some of the datasets on which we draw in this paper, attempt to approximate a nationally representative sample on such demographics. We accordingly take as our starting point in Figure 6 an initial survey that is nationally representative on these demographics, and then show how we would expect it to change when considering the validated Twitter user sub-sample.12 Figure 7, which shows expected demographic changes from a stated Twitter user sample to a validated handle sample, similarly takes as its starting point our "best guess" of what a nationally representative sample of stated Twitter users might look like in the U.S., using data from ANES . To illustrate possible changes across samples, we show, for each demographic characteristic, how it would be expected to differ using both the estimated coefficient from our pooled sample regressions, as well as the range in estimated coefficients across studies included in the pooled sample. Appendix Tables A1 andA2 contain the regression output from which we draw these estimates. Finally, note that due to differences in the samples represented across datasets, the composition of datasets varies across our two figures . Figure 6 displays the substantial degree to which we would expect demographics to change when going from an initial survey sample that is nationally representative on key demographics to a sub-sample of validated handles. Compared to the initial survey and based on our pooled sample estimate, we would expect the validated sub-sample to include a larger percentage of individuals who identify as ethnically white , are more highly educated , identify as Democrats , and are younger . When considering the full range of estimates provided by the individual studies that make up our pooled sample, differences could vary widely. Thus, for example, the increase in the percentage of individuals in our validated sub-sample with more than a high school education is estimated to range across studies anywhere from 4% to 12%. The only demographic for which we do not observe substantial change across samples is gender, as the percentage of women remains similar in the initial survey and validated handle samples. Overall, then, we find that the demographics on which surveys often attempt to be nationally representative can change substantially when considering a validated handle sample. A1. The dependent variable for these estimates is whether the respondent provided a validated handle. The dotted line shows the range across all datasets, while bars show the pooled estimates' 95% confidence intervals. All primary datasets allowing for inference on a given variable were used to arrive at displayed results; results are thus based on Guess et al. and Haas . The datasets are used to estimate both the range and the pooled estimate. Whereas the differences discussed above might be attributable at least to some degree to real differences between stated and non-stated Twitter users, we might be particularly concerned as regards survey-linkage attrition if demographics change substantially between stated Twitter users and validated Twitter users. Reassuringly, and consistent with the main results presented previously, Figure 7 indicates that differences are less pronounced when moving from a nationally representative sample of stated Twitter users to a sub-sample of validated handles. Considering first our pooled sample estimate, we do observe changes in the percentage of validated handle Twitter users who identify as ethnically white and who are highly educated . However, we find little evidence of a corresponding shift for our age, gender, or partisanship variables -though estimates vary widely across studies in particular for age . Taken together, our findings suggest less consistent changes between the samples, though some are documented, in particular for ethnicity and education. that the degree to which a platform is viewed as private could affect data sharing rates. According to this line of thinking, one might be more willing to share account information for a platform where they perceive their communication as public than for a platform where they perceive it as private . As regards vendor, it is possible that sharing rates will be higher among individuals belonging to online commercial panels who are accustomed to such requests, as compared with those recruited to participate in a single, nationally representative survey . A number of individual-level factors are also thought to drive data sharing decisions. Individuals who use devices or platforms more , who have a greater affinity for technology , and who express fewer privacy concerns , for instance, have all been found to be more likely to engage in data sharing. Studies have also found that a number of demographic characteristics are associated with data sharing decisions: notably, younger individuals , those who are more highly educated , and men are often found to be more willing to share data, though patterns are not entirely consistent across studies or platforms. 13 Factors driving some of these associations appear relatively clear: for instance, less knowledge of digital media among older respondents might make data sharing requests appear comparatively more burdensome , and individuals who are concerned about the privacy and security implications of sharing might be less willing to do so . 14 Others, however, remain more uncertain: Silber et al. , for instance, explore whether gender differences could be attributable to differences between men and women in technological affinities, privacy concerns, or how they use or perceive platforms. Further consideration of what drives demographic differences in data sharing is an area worthy of further research. Finally, scholars have highlighted that the way in which data sharing is requested can matter. Particularly relevant is a study by Silber et al. where they compared data sharing under different elicitation methods and across multiple platforms. The authors find that data sharing rates are higher where sharing is monetarily incentivized and less demanding . The authors also argue that the various factors enumerated above -structural, individual, and pertaining to elicitation methodsometimes interact to produce data sharing decisions. Thus, for example, older users with lower data literacy may be particularly unlikely to share data where the elicitation method is demanding and requires technical expertise to implement . --- Connecting Our Results The foregoing discussion offers some useful insights for possible interpretations of our results. First, it is worth note that we find similar demographic predictors -age and education -of stated Twitter use and provision of validated handles in our pooled sample analysis as has been documented in other studies of data sharing. 15 Second, we can speculate that a possible reason for these associations might be the greater knowledge of digital media held by such individuals. Third, while we find support for age and education as predictors of Twitter use and handle provision, we do not observe consistent evidence that they predict provision conditional on having a Twitter account. Our findings thus indicate that survey-linkage attrition on these demographics, and on demographics generally, might be less of a concern than some have feared. 14 Jäckle et al. usefully categorize barriers to possible participation in a mobile app survey as deriving from access, ability, or willingness concerns. 15 Our mixed findings regarding gender are also potentially consistent with the contrasting findings in the literature noted above . Fourth, the literature indicates that data sharing might be higher on the platform we investigate as compared with other platforms that are perceived as facilitating more private communication . Fifth, research indicates that the elicitation method used by most of the studies whose data we use -simple text-entry of Twitter handle -may produce the smallest amount of attrition due to the low degree of demand and digital literacy required to provide one's account information. These latter two insights indicate that research on different platforms and using more intrusive methods of data sharing might observe even higher levels of attrition and stronger demographic predictors of attrition . --- Generalizability In Appendix Section A.3, we explore the generalizability of our findings to international convenience samples and different data sharing request methods . --- Mosleh et al. allow us to investigate survey-linkage error on an international convenience sample of Twitter users. 16 A few findings are worth mention. First, we observe an attrition rate of approximately 12% , which is comparable to rates in some other studies included in our analysis ) though it is smaller than for studies that similarly pre-selected on Twitter use or Osmundsen et al. ). Second, for most demographic categories, such as gender, education, and ethnicity, we observe little change; however, we do find that young respondents are substantially more likely to provide a validated handle conditional on stated Twitter use . Taken together, results thus do not differ to a large degree from those observed in our U.S.-based datasets. Our findings therefore appear to largely generalize to the international sample in Mosleh et al. . Turning to Lyons et al. and a comparison with their arguably more privacyintrusive data access request of browser monitoring, we find larger differences. First, they observe a high degree of attrition, as only 15% of their sample consented to monitoring. However, while on the low end of data sharing frequency in comparison with our primary 16 The majority of their sample comes from the UK and the U.S. , with the remainder sourced primarily from Canada, Spain, Italy, and Portugal . The data provided does not allow us to subset results by country, or include country fixed effects; however, it is notable that U.S. respondents only make up approximately 1/5 of the sample. datasets, it is nevertheless worth mention that some of our datasets with less instrusive request methods record lower sharing rates . Second, we find substantial demographic changes across samples: those who consent to browser monitoring are older, more educated, and more likely to identify as ethnically white, and associations are of considerable magnitude . With the exception of age, which is in the opposite direction from other studies and expectation from the literature, demographic shifts are largely in the same direction though of larger magnitude. 17 --- Conclusion In this paper, we collect data from five sources and over 31,000 respondents to evaluate whether systematic errors are introduced when researchers attempt to link individuals' survey responses with their social media accounts. Focusing on studies of Twitter in the U.S., we first show that samples of stated users differ markedly from the initial survey samples from which they are drawn. Next, we report that despite substantial attrition between stated and validated Twitter users, validated user samples differ to a much lesser degree from stated user samples. While these latter findings are reassuring, we nevertheless document systematic differences due to survey-linkage on some demographics, with potentially important consequences for sample composition and study findings. Variation in some estimates across studies also underline the potential for consequences of survey-linkage error to similarly fluctuate. Finally, in our Discussion Section, we reflect on possible drivers of attrition, connect our results to the literature, and explore the generalizability of our findings. Patterns largely conform to our main results when considering both an international convenience respondent pool and a U.S.-based pool with a different data sharing request method, though we observe in the latter case that demographic differences across samples are often of larger magnitude. 17 As noted in the preceding discussion, the literature would lead us to expect that older participants would perceive arguably more intrusive browser monitoring requests as particularly burdensome. We can only speculate as to why Lyons et al. find that older respondents are to the contrary more likely to consent to browser monitoring than younger respondents. One possible explanation is that older individuals view their online browsing as less private than younger individuals who grew up with the Internet. An alternative, related explanation is that older respondents are less likely to understand the far-reaching implications of browser monitoring as regards the degree of information shared with researchers. There are several limitations to this paper and opportunities for further research. First and foremost, our analysis lacks an estimate of the population of "true" Twitter users against which we can compare stated users and validated accounts. 18 Research such as that by Hughes et al. approximates the Twitter population in a potentially more precise fashion, using both voter records and survey-linkage. Such an approach could help facilitate the identification of an accurate baseline against which one can compare results, as the use of voter records can partially alleviate problems of non-response and measurement error . The use of voter records, while they can provide a valuable sample approximation of registered voter and potentially voting eligible target populations as shown in articles such as those by Göbel and Grinberg et al. , is nevertheless unlikely to act as a salve for all research projects. Notably, it is unlikely to address possible concerns for scholars whose target population is the nation as a whole, as lists of registered voters systematically exclude parts of the population . One possible avenue for future research could instead be to seek to triangulate the social media population, by using administrative records, classic questionnaires with and without survey-linkage, and data indirectly and directly collected on the social medium itself. Such an approach could provide a more accurate baseline of the population on a social medium and how it might change at different stages of the survey-linkage process. A second limitation of our paper concerns the number of studies on which we are able to draw and their characteristics. In particular, owing to the relative novelty of our approach and the finite number of datasets at our disposal, we can only observe differences across all three samples of interest in one of our datasets. Third, our research calls for more attention to possible solutions to survey-linkage attrition. In Appendix Section B.3, we explore one such possible solution: weighting a validated Twitter sample toward the initial survey sample. 19 However, as explained by Schuessler and Selb , such an 18 While we anticipate that most respondents who say they use Twitter have an account , it is also possible that some of them use it without an account or are inactive but still consider themselves users. Though we find it unlikely that such individuals could account for the substantial drop-off rates between stated and validated Twitter users documented in Figure 2, future work could also seek to disentangle whether stated Twitter users had a possible Twitter handle to provide when asked or not. 19 See Remy and Chapekis for another example of the same approach. approach, if implemented incorrectly, runs the risk of creating analytic error. Importantly, the weighting solution does not address unobservable predictors of attrition: thus, if a researcher is interested in the use of hate speech on the internet, they might not know how the number or types of accounts committing hate speech are affected by the linkage process. We therefore do not view weighting as a catch-all solution and call for more attention for research on how to correct for linkage errors. Finally, though our study considers one potential source of error in the analysis of social media, many more are worth further exploration . As one example, research indicates that a small share of adults on Twitter in the United States are responsible for the vast majority of Tweets . Findings which draw disproportionately on the most active Twitter users could potentially be biased, insofar as those users are systematically different from other users in important and unaccounted-for ways. Such investigations of other possible sources of error in social media research carry great potential for scientific advancement. Note. Point estimates show weighted averages and we display confidence intervals. Weights are relative to number of observations in each dataset, giving equal weight to each dataset in the estimate. Ethnicity and religion are calculated based on two datasets. Income is calculated based on three datasets. --- A Online Appendix A -Additional plots and tables --- A.1 Additional demographic plots --- A.2 Additional forest plots --- Figure A5. Forest plot of the relationship between Twitter/Linkage and identifying as a woman Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. --- Figure A6. Forest plot of the relationship between Twitter/Linkage and identifying as ethnically white Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Please note that access to information about ethnicity in the ANES is restricted. We therefore did not include the ANES in our analysis on ethnicity. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. --- Figure A7. Forest plot of the relationship between Twitter/Linkage and identifying as a Democrat Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. --- Figure A8. Forest plot of the relationship between Twitter/Linkage and political ideology Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. Ideology was normalized across datasets using min-max normalization where 0 indicates maximum left and 1 maximum right. A.3 Plots including additional data sources. --- Figure A9. Percent stating Twitter use and providing validated handles across all data sources Note. Proportions and confidence intervals are estimated for all datasets based on the number of respondents in a sub-sample and overall sample. Proportion of ANES respondents is retrieved using provided survey weights. The weighted estimate of the harmonized dataset gives equal weight to each dataset within it. Please note that Lyons et al. does not reflect validated Twitter handles but rather consent to browser monitoring. --- Figure A10. Forest plot of the relationship between Twitter/Linkage and being below 45 years of age Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. Please note that Lyons et al. does not reflect validated Twitter handles but rather consent to browser monitoring. --- Figure A11. Forest plot of the relationship between Twitter/Linkage and having less than a high school education Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. Please note that Lyons et al. does not reflect validated Twitter handles but rather consent to browser monitoring. --- Figure A12. Forest plot of the relationship between Twitter/Linkage and identifying as a woman Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. Please note that Lyons et al. does not reflect validated Twitter handles but rather consent to browser monitoring. --- Figure A13. Forest plot of the relationship between Twitter/Linkage and identifying as white Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. Please note that Lyons et al. does not reflect validated Twitter handles but rather consent to browser monitoring. --- Figure A14. Forest plot of the relationship between Twitter/Linkage and identifying as Democrat Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. Please note that Lyons et al. does not reflect validated Twitter handles but rather consent to browser monitoring. --- Figure A15. Forest plot of the relationship between Twitter/Linkage and political ideology Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. Please note that Lyons et al. does not reflect validated Twitter handles but rather consent to browser monitoring. Ideology was normalized across datasets using minmax normalization where 0 indicates maximum left and 1 maximum right. Note. Beta coefficients are unstandardized OLS coefficients. Twitter use shows the coefficients for all respondents who indicated within the survey that they used Twitter. Coefficients for the ANES are weighted to reflect the general public. Weights for the ANES data are not included in the pooled estimate. Linkage includes all datasets which measure survey-linkage, irrespective of Twitter use. Linkage conditional on Twitter use shows all sub-samples where Twitter use was previously indicated. Please note that Osmundsen et al. was excluded as their categorization of age did not make standardization for 2016 possible. Note. Beta coefficients are unstandardized. The X-axis shows cutoff points for the age variable, where the variable was turned into a boolean indicating if a respondent had less than the age indicated on the X-axis. 45 is the cutoff shown in the main text, showing the correlation of being less than 45 years of age and providing a handle that can be validated. Note that Osmundsen et al. does not contain information on age at a yearly level, which is why the cutoffs at each category level are provided. Guess et al. shows the coefficient for the validated handle category irrespective of stated Twitter use. Note. Beta coefficients are unstandardized. The X-axis shows cutoff point for the education variable, where the variable was turned into a boolean indicating if a respondent had the education indicated on the X-axis or less. High school graduate is the category shown in the main text, showing the correlation of having a high school degree or less and providing a handle that can be validated. Guess et al. shows the coefficient for the validated handle category irrespective of stated Twitter use. . --- A.5 Tables documenting quota regressions In order to retrieve validated handles to link to their survey, Haas used the field displayed in Figure B1 to retrieve entries by respondents. --- Figure B1. Questionnaire Text-field used for retrieval of Validated Handles The field was ignored by a majority of respondents who skipped the question. We then cleaned the responses in a first round, where we removed all entries which were deemed meaningless beforehand, such as: "no","yes","Dont","Thanks","Trump","Biden" and similar. These are displayed in the meaningless entry category in Figure B2. We also cleaned entries which contained the full mail address in their suggested handle. We then used the Twitter API to look up all remaining handles in order to match them with accounts. Of these, 638 entries did not produce a match. Additionally, 300 entries either belonged to suspended accounts or were duplicates; i.e., two or more entries were matched to the same Twitter account. Finally, manual inspection of matches also revealed that 127 matched accounts were unlikely to be the real respondent, as they either were obviously bogus, e.g., "Eatme" and "great", celebrities, e.g., "metroboomin" and "kingjames", button-bashing, e.g., "Jsjdjdjdjej" and "Bjbvvj", or a company, e.g., "Tinder" and "hola". That an entry was deemed button-bashing, i.e., the blind pressing of buttons, was validated by text-entries in a different field during the survey, which in some cases also helped identify bogus entries. For future researchers, we recommend adopting standardized procedures of cleaning handles as there currently is no general framework for how text-entries should be cleaned in survey-linkage studies. We note that the different used sources applied differing approaches. --- Figure B2. Categorization of Entries into Twitter Handle Text-field Note. Failed attempts to match were only made for entries in the 'No match found', 'Suspended/Duplicated', and 'Bogus/Button-bash/Company' categories. report that 2,163 of their respondents provided handle entries, but only 1,816 were verifiable. They do however not report the need for cleaning of entries. Henderson et al. do not report the need for cleaning, but mention that 902 respondents provided handles of which 634 could be verifiably linked to public accounts. Osmundsen et al. do not report a need for cleaning of handle entries, but do note attrition due to handle entries not matching Twitter accounts or participants claiming to have handles but not verifying them. In order to standardize future approaches, we suggest a four-step approach: cleaning before matching to social media data by removing duplicates and non-responses in text form from the data; validation of cleaned handles' existence on the given social medium; manual inspection of matched accounts, coding for bogus entries and button-bashing, and if possible validated by matching account information with questionnaire information; and reporting of attrition in each stage of the process. --- B.2 Description of harmonization process In order to harmonize datasets, we identified variables of interest for social scientists held in common by as many of our sources as possible. For these variables, we then determined what levels were the lowest common denominator. The below tables list all variables, their levels in the original datasets, as well as the levels chosen for harmonization. Note. The anesrake-library in R was used to attain target weights for the selected quotas. The used function applies raking in accordance to criteria set by DeBell and Krosnick . Target weights were attained using the ACS and the ANES for the following variables: white ethnicity, age, education, and gender. White ethnicity was estimated using the harmonized dataset, as access is restricted in the ANES. --- Table B1: --- Online Appendix @Who? --- Investigating Possible Errors in Studies Linking --- Survey and Twitter Data --- B.3 Reweighting results to fit the target population How might researchers reduce concerns about possible survey-linkage attrition? One possible approach could be to re-weight a sample of linked, validated Twitter users to the population of "true" Twitter users. In Figure B3, we evaluate such a possible solution. Specifically, we take the ANES sample of stated Twitter users as the "true" population of Twitter users. We then weigh a sample of validated Twitter users from Guess et al. to approximate the target, stated Twitter sample. Finally, we compare the overall sample, the overall sample weighted toward the general population, the linked sample, and the linked sample weighted toward the stated Twitter population. To determine the possible consequences of weighting, we compare these samples on covariates that may be of interest to scholars but which were not included in our weighting exercise. Results indicate that weighting a sample of validated Twitter users can have a substantial impact on covariates of interest. As the top and bottom panels show, we find that already-pronounced ideological and income differences between stated Twitter users and validated Twitter users are further increased with representative weighting toward the stated Twitter user population. Of course, weighting does not always increase differences, as is illustrated by the political participation measure in the middle panel. Additionally, as we argue in the Discussion Section, weighting only promises to alleviate observed biases, but cannot account for differences in variables which are difficult or impossible to observe in survey and linked data. Important to note here is work by Remy and Chapekis , who, using the Pew American Trends Panel, also weigh their validated Twitter sample to be representative of Twitter users and report some similarities and differences between the two samples. They observe that their sample weighted towards Twitter users mainly looks like the overall sample of Twitter users on questions not used for the weighting exercise. However, they note that some differences do occur, the most significant one being that there is an overrepresentation of users in the validated sample who have set their Twitter account to public. This leads the authors to speculate that this difference is driven by concerns regarding digital privacy. Their interpretation largely fits one of the findings regarding privacy concerns, which we bring up in our Discussion Section.

Expanding global usage of social media and growing questions about its societal impact have led scholars to investigate the relationship between individuals' offline and online behaviors and characteristics. Such inquiries, which compare individuals' survey responses to their social media behavior, typically do not address whether the elicitation of survey respondents' social media information introduces any systematic errors. However, making inferences from a surveylinked sample to a social media platform, and finally to a survey sample or broader target population, can be imperiled when systematic differences exist between those who provide and those who deny researchers access to their social media accounts. In this paper, we ask: Do survey respondents who say they use Twitter differ from the subset providing validated Twitter handles, as well as from the overall survey sample? Pooling across five datasets and over 31,000 respondents, we show first that samples of stated Twitter users differ from the initial survey samples from which they are drawn on several socio-demographic characteristics. Second and reassuringly as concerns possible errors due to survey-linkage, we report few systematic differences between those who say they use Twitter and those who provide validated Twitter handles. Nevertheless, we do document differences on some demographics, and we illustrate how errors could carry potential consequences for sample composition of which researchers should be aware. Finally, we conclude with a discussion of our results, their possible generalizability, and areas for future research.

Background Preconception health, defined as the health of women and men from pubarche to when they can have a child , is critical to improving population health across the life course. Most preconception health research disproportionately focuses on women with the greatest progress toward understanding the salience of men's preconception health made only in the past 10 years. These studies, which often focus on men's biological contributions to pregnancy, suggest that men's poor preconception health can impair fertility, and reduce semen quality and quantity . Less is known about the social factors that contribute to men's preconception health or how these factors impact the aggregation of preconception health indicators at the population level. In 2006, the Centers for Disease Control and Prevention recommended ten surveillance indicators that could optimize the health of men preconceptionally. These indicators include: making a reproductive plan, preventing sexually transmitted diseases, quitting substance use, avoiding exposure to toxic substances, preventing infertility, maintaining a healthy weight, knowing family history, seeking help for violence, staying mentally healthy, and supporting partners . Despite the awareness of these factors, optimizing preconception health is constrained by a host of factors including a) an inconsistent definition of the preconception period b) difficulties with making and sustaining behavior change without a clear understanding of the effects of contextual factors c) the persistently high prevalence of unintended pregnancies and d) persistent disparities in access to and utilization of health care resources . In addition to these factors, men face other unique challenges to optimizing their health preconceptionally. For instance, compared to women, men are more likely to engage in risky behaviors and less likely to modify these behaviors over time, less aware of the health behavior changes they need to make or how these behaviors can impact their offspring and are less inclined to seek health care . Men's health conditions and health behaviors do not occur in a vacuum. Research has increasingly acknowledged the role of the social determinants of health -i.e., where people are born, live, play, learn, work, pray, and age -in creating and shaping health trajectories across the life course . Approximately 9% of men between the ages of 18 to 64 lived in poverty, 10.6% had less than a high school education, and 3.4% of men 20 years and over were unemployed in 2018 . Of these, racial and ethnic minorities accounted for the greater proportion of those at lower socioeconomic status [poverty rate: non-Hispanic Black , Hispanics , and foreign-born populations ]. Among non-Hispanic Black and Hispanic males, those with less than a high school degree accounted for 11.7 and 29.3% respectively . These minority populations often reported poorer health than their non-Hispanic White counterparts. Social factors intertwine with biological factors across the life course to shape health outcomes, which can adversely impact men's preconception health . Given the stark social disparities that underlie men's health, studies examining how men's social environment influences their preconception health status with attention to rural/urban residence, health access, socioeconomic and minority/immigrant status are needed. The objective of this study, therefore, was to utilize data from the National Survey of Family Growth to a) characterize latent clustering of men's preconception health at the population level and b) examine the relationship between the social determinants of health -rural/urban residence health access, socioeconomic status, and minority/immigrant status on these preconception health clusterings. Preconception risk factors such as risky sexual behaviors and substance use or chronic disease and poor nutrition often co-occur and are intertwined with social factors like socioeconomic status and racial/ethnic background . Therefore, this study hypothesized that a) latent classes of men's preconception health will be observed and b) that men's preconception latent class membership will be predicted by the social determinants of health. --- Materials and methods --- Study participants and data source Pooled data from the National Survey for Family Growth from 2011 to 2019 was used. The NSFG is a multi-stage, stratified, probability sample of the non-institutionalized U.S. population with in-person interviews conducted continuously at 2-year intervals. Details on data collection methods are reported elsewhere . Data were collected from both males and females ages 15-44 years with data collection among men only beginning in 2002. Men included in this study were sexually experienced with a female, fecund, and had at least one fecund partner . Those who also reported a current pregnant partner were excluded. These criteria were selected to identify those who at the time of data collection, were at risk of experiencing a pregnancy with their partner. Data were weighted to account for the complex survey design and provide estimates that are generalizable to the U.S male population. --- Measures of men's preconception health indicators Preconception health indicators are used in this study to capture men's health behaviors and health status , and these factors constitute a common definition of men's preconceptual health . These variables were measured with eight lifestyle variables -the number of sexual partners, sexual risk-taking behavior, condom use consistency, general health status, alcohol, and drug use, exposure to sexually transmitted infections , and body mass index. These variables were further categorized into 5 domains -sexual behavior and awareness, general health status, substance use history, infectious disease status, and healthy weight. Only these five domains were assessed because of the availability of these variables in the NSFG data. These manifest variables were dichotomized following sensitivity analysis which showed no significant differences between the categories by sociodemographic characteristics. A detailed description of these variables is provided elsewhere -BLINDED FOR REVIEW). --- Sexual risk behavior and awareness Men's sexual risk behavior was measured using three variables that assessed the number of sexual partners, condom use, and STI/HIV risk-taking behavior. The first variable assessed the number of female partners a man had with the question "number of female partners in the last 12 months" and was recoded as 1= none or one female partner, and 2=more than one female partner . The question, "in the last 12 months, how often did you use a condom with your partner or partners" was used to measure condom use with response options 1=every time, 2=most, 3=about half, 4=some of the time, and 5=none of the time. These responses were recoded to measure condom use consistency where those who used condoms every time were coded as "1= used consistently" and those in categories 2 to 5 where coded as "2= inconsistent use to no use" . Sexually transmitted infection and HIV risk-taking behaviors were measured using five questions that asked whether a man had sex with a female intravenous drug user, gave money or drugs to a female for sex, took money or drugs from a female for sex, had sex with an HIV-positive female, and e) had any other sexual experience with another man with a binary response option. The first four questions inquired about past 12 months exposure whereas the fifth question inquired about lifetime exposure. These variables were used to create a single STI/HIV risk dummy variable. An experience with any of these STI/HIV risk-taking behaviors was coded as "yes" and no experience with any of these risk behaviors was coded as "no" . --- General health status Men's general health status was measured using the question "In general, how is your health?" with responses on a five-point scale ranging from excellent to poor. For analysis, this variable was recoded to a dummy variable 1= excellent to good and 2= fair to poor. Since only the 2015-2019 NSFG files measured high blood pressure and medication use among males, these variables were not used for this analysis. The general health status measure is the most commonly available measure of perceived overall health in national surveys and previously showed fair to good test-retest reliability in a population study . --- Substance use history Alcohol use was measured using three questions that assessed the frequency and quantity of alcohol use. These variables were recoded as "no drinking" if no alcohol use was reported in the past 12 months and 30 days, "low risk" if alcohol use was reported in the past 30 days but not at binge levels, "medium risk" if they binge drank <5 times in the past 30 days and "high risk" if they binge drank 5 or more times in the past 30 days . For analytical purposes, these risk categories were further recategorized into two risk groups: 1 = no to low-risk drinking and 2 = medium to high-risk drinking. Six questions on drug use inquired about marijuana, cocaine, crack, methamphetamine, and injection drug use in the past 12 months. These variables were recoded into a single "any drug use" category with a binary response. Since only the 2015-2019 NSFG questionnaire collected responses on smoking status, substance use history was measured using the respondent's alcohol and drug use history only. --- Infectious disease status Five questions were used to measure the presence or absence of sexually transmitted infections. These questions asked whether the respondent was told that they had gonorrhea, chlamydia, herpes, genital warts, and/or syphilis in the last 12 months. Responses to these questions were used to create a single STI status dummy variable with a binary response. --- Body mass index Body mass index is the most commonly used marker to ascertain healthy weight status . Body mass index was collected as a continuous variable and was categorized into 4 distinct groups -underweight , normal weight , overweight , and obese . These groups were recategorized further into a dichotomous variable "under to normal weight" and "overweight to obese." --- Social determinants of men's preconception health Rural/urban residence was measured using participants' place of residence with a 3-item response scale that was determined by the Metropolitan Statistical Area that we renamed as urban, suburban, and rural residence, respectively. Health access was measured with the question "In the last 12 months was there any time that you did not have any health insurance or coverage?" with a binary response. Health care utilization was measured with two questions that assessed the type of doctor's visit and whether the doctor's visit was for reproductive health care. These variables were recoded as "reproductive wellness visit" if the participants went to the doctor and received reproductive health information, screening, exam, or treatment; "no reproductive wellness visit" if they went to the doctor for reasons other than for reproductive health and "no visit" if they did not have any doctor's visit in the past 12 months. Socioeconomic factors were measured in three domains -employment consistency, poverty level, and educational attainment. Employment consistency was examined for the past 12-months and was categorized as "unemployed" if the respondent was not employed in the last 12 months, "unstable employment" if the respondent was employed for <12 months, and "stable employment" if the respondent was employed for 12 months. The federal poverty-to-income ratio grouped into two subcategories -at or below 100% of family poverty level vs. above 100% of the family poverty level -was used to determine poverty level . Educational attainment was measured on a four-point scale -less than high school, high school, some college, and college degree or more. Racial/ethnic belonging and immigration status were used as a proxy measure for social and cultural contexts. Race/ethnicity and immigration status can influence an individual's perceptions and/or experiences of the roles, resources, and relationships that society offers them through public and social institutions . These variables were used to denote the underlying cultural and normative beliefs and practices around preconception health. Immigration status was a dichotomized variable utilized in this study to measure. Race/ethnicity was a four-level categorical variable -non-Hispanic White, non-Hispanic Black, Hispanic and Other. --- Covariates Covariates were sociodemographic characteristics that were independently associated with the exposure, outcome, or both variables and relevant to the literature. These included union type , age , number of children they ever fathered , and age of sexual debut . Survey year was also included as a covariate in the analysis to adjust for temporal changes. --- Statistical analysis Descriptive statistics including frequencies and bivariate analysis were used to describe the preconception health indicators and sociodemographic factors. A latent class analytical approach was used to characterize men's preconception health. --- Latent class analysis Logistic regression models with binary outcomes and multiple predictors are pervasive in the epidemiologic literature. These methods usually estimate the effect of one variable on an outcome after accounting for the effects of other variables in the model. This approach, often referred to as a variable-centered approach, precludes the opportunity to observe an underlying phenomenon that can provide a more nuanced understanding of precursors to health outcomes . As public health researchers increasingly focus on the interrelated factors that contribute to health outcomes over the life course, there is a need to employ statistical methods that utilize person-centered approaches to understand the complex relationships between these factors . Latent variable models provide unique tools to analyze multivariate data . Latent variable models are methods applied to measure multidimensional constructs that are not easily measured by a single variable. Its principle lies in measuring unobserved phenomena that influence patterns of behavior or responses. It utilizes and captures the concordance and discordance in health behaviors within a person . By Frontiers in Reproductive Health frontiersin.org using several observed variables to assess the underlying latent variable, we can reduce measurement errors . Latent class analysis is a latent variable framework that utilizes observed categorical data to examine unobserved phenomena and identify subgroups of individuals in a set of two or more mutually exclusive and exhaustive latent classes based on multiple observed variables . This method was used because of the heterogeneity in preconception health behaviors and health conditions, interrelatedness between these risk factors, and the utility of this method to identify unique dimensions of preconception health from these variables. This method utilized indicators of preconception health as manifest variables to identify two or more dimensions of men's preconception health. The data were analyzed to determine the number of classes that best describe the patterns of response, the size of each class, and the probability of men responding in a certain way within those classes. An iterative maximum likelihood method specified two parameters: the prevalence of latent classes and the item response probability representing the probability of endorsing a particular item within each class. The LCA model was fitted starting with the 2-class model with a one-unit increment in the number of classes . The model of best fit was determined based on the Bayesian Information Criterion , entropy, mean posterior probabilities and class size , the interpretability of the solution, parsimony of the model, and relevance to the literature. The smaller BIC value indicates a better model fit. Entropy denotes how accurately a model defines a class with values closer to 1 considered ideal . Mean posterior probabilities are presented in a matrix with probabilities of membership in each class on the diagonal. Diagonals close to 1 and off-diagonals close to zero are considered more reliable models. Analyses were completed using the PROC LCA procedure in SAS 9.4 . The combined 8-year weight for the 2011-2019 period was applied to all analyses. Using the posterior probabilities derived from the latent class models, a preconception health phenotype variable was created, by applying a classify-analyze approach and was subsequently used to fit multinomial logistic regression models to determine the relationship between PhP and the social determinants of health. Although "phenotype" is a biological term that refers to the physical expression of genes, it was used in this study to denote the set of observable characteristics that distinguished members within a specific latent class from those in other latent classes. Regression models estimated odds ratios with corresponding 95% CI. Independent crude and adjusted regression models were fitted for each social determinant and controlled for the covariates -union type, age, number of children ever fathered, age of sexual debut, and survey year. Statistical significance was placed at a p-value < 0.05 and 95% CIs not overlapping 1.0. --- Results --- Descriptive statistics A total of 10,223 men were included in the final sample and the 53% majority were between 30 and 44 years. Most men were non-Hispanic White , never married , had some college education with stable employment . The majority also had health insurance and reported good to excellent health . In line with the objectives of this study, the pooled eight-year sample was used to identify the weighted frequencies of positive endorsement of the preconception risk manifest variables. Overall, more than 80% of men reported inconsistent to no condom use, 61.9% reported being overweight or obese and 18.6% reported having two or more sexual partners. About a third used drugs and 41.8% used alcohol at medium to high-risk levels . --- Latent classes of men's preconception health The 3-class model provided the best fit across the eight preconception health manifest variables given 50 random start values, highest entropy values, and separation into distinct classes based on posterior probabilities of class membership . Since a classify-analyze technique was applied to create a preconception health variable, the mean posterior probabilities for class membership needed to be high to reduce the effect of random error . Table 2 represents the latent class probabilities i.e., the proportion of men expected to belong in each latent class, and the item response probabilities i.e., the proportion of men who positively endorsed these preconception health indicators within each class. Most men belonged to Class 1 "lowest risk group." This class was characterized by a high endorsement probability of inconsistent /no condom use and overweight/obese ; all other prevalence estimates for each manifest variable were low. Class 2 "sexual risk-takers" had the lowest prevalence of latent classes and was characterized by high endorsement probability for multiple sexual partners , inconsistent/no condom use , medium/ high alcohol use and overweight/obese . Approximately 23% of men belonged to Class 3 "substance users" and --- Latent class structure and the social determinants of health A description of the study sample, as they differed by the social determinants of health within their distinct preconception health groups, is provided in Table 3. More men in the "lowest risk" category lived in suburban areas , whereas more men in the "sexual risk-takers" group lived in urban centers . More men in the "substance users" category lived in suburban areas . Across the PhP categories, most men were insured and had non-reproductive health visits to the doctor. Most men had stable employment, however, 30.7% of men in the "substance users" category had unstable employment, and 22.2% of "sexual risk-takers" also had unstable employment. Most men in the "lowest risk" category had a college degree or more , whereas most substance users and sexual risk-takers had finished some college. Across all PhPs, most non-Hispanic White men belonged to the "substance users" category while the majority of non-Hispanic Black men belonged to the "sexual risk-takers" category. There was an even distribution of Hispanic men in the "lowest risk" and "sexual risk-takers" categories. Immigrants were more frequently in the "lowest risk" group compared to non-immigrants. --- Crude and adjusted multinomial regression models Table 4 presents the result from the multinomial regression models fitted using the "lowest risk" level of the PhP variable as the outcome reference category to estimate the effects of the independent variables on the "sexual risk takers" and "substance user's" categories. All models were adjusted for the covariates: union type, number of biological children, participant age, and age of sexual debut. The survey year was further included in the models to account for any temporal variations in the exposures and outcome over time. For the current analysis, the regression models fitted did not control for all SDOHs in a single model, because it aimed to provide an initial examination of the relationship between each SDOH and men's preconception health. The limitations to this approach are noted in the discussion section. Health access, socioeconomic status, and minority/immigrant status but not rural/urban residence were significant predictors of class membership. Men's access to health insurance coverage and type of health care service received were significant predictors of men's preconception health status. A lack of health insurance coverage was associated with 16% reduced odds for belonging to the "substance users" and 25% increased odds for belonging in the "sexual risk takers" category than in the "lowest risk" category compared to those who had insurance coverage . Whereas, not having a doctor's visit or having a non-reproductive health visit were associated with reduced odds of belonging either to the sexual risk takers or substance users' categories than the lowest risk class. Employment consistency, poverty level and educational status were associated with men's preconception health status. Compared to men with stable employment, employment instability was associated with reduced odds of belonging in the "sexual risk takers" category than the "lowest risk" category but increased odds for belonging in the "substance users" category than in the "lowest risk" category. Unemployed status did not have a statistically significant effect on preconception health class membership. Living below 100% of poverty level reduced the odds of belonging to the "sexual risk takers" and "substance users" categories by 36 and 27%, respectively . Education status was significantly associated with men's preconception health status. Compared to those with less than high school education, having a high school degree, some college or a college degree or more was associated with increased odds of belonging in the "sexual risk takers" category and the "substance users" category . Racial and ethnic background was also a significant predictor of preconception health status latent class belonging. Compared to their non-Hispanic White counterparts, being non-Hispanic Black was associated with 99% increased odds of belonging in the "sexual risk takers" category than to the "lowest risk" category. Whereas, identifying as Hispanic was associated with 29% reduced odds of belonging in the "substance users" category than in the "lowest risk" category. Immigration status was also a significant determinant of men's preconception health status. Compared to non-immigrants, immigrant status was associated with reduced odds of belonging in the "substance users" category than in the "lowest risk" category. Given the changed direction in the odds ratios for the relationship between men's preconception health and insurance status, employment consistency, education status and race/ethnicity, a further assessment of confounders was conducted. Confounding effects were assessed using 10% change in the crude model compared to the adjusted model. This assessment showed all the covariates to be significant confounders except for the effect of age on the relationship between PhP and race/ethnicity . These confounding effects of the covariates observed in this study suggest that future studies should also seek to examine the moderating effects of these factors by applying an intersectionality lens to better understand the pathways and mechanisms by which men's sociodemographic factors and SDOH's differentially impact preconception health. --- Discussion This population-level study utilized pooled cross-sectional data from the 2011-2019 NSFG dataset to identify latent classes of men's preconception health and examine associations between these latent classes and the social determinants of health -health access, socioeconomic status, and minority/immigrant status. Per the hypothesis of this study, three latent classes of men's preconception health were identified -lowest risk, substance users, and sexual risk-taker categories. These classes were predicted by all the social determinants of health domains except for men's rural/urban residence. The salience of these findings is discussed in the following paragraphs. This study found that 22% of all men belonged to the "substance users" class and almost 10% belonged to the "sexual risk-takers." While Class 1 "lowest risk" may not be "low risk" or "no risk, " compared to the other classes they bear the lowest risk given the constellation of preconception risk endorsement probabilities in the other latent classes. The latent classes observed in this study, specifically on substance use and risky sexual behaviors, may not be a function of "free choice." These classes may signify a constellation of the individual, structural, contextual, and social factors, including hegemonic practices, that have intertwined over the life course to define masculinity and masculine behaviors. There is a gendered narrative to risk-taking and risk behaviors with men more likely to engage in risky sexual behaviors or substance use than women . Our study supports this narrative to the extent that distinct categories of men within both risk categories were explicitly identified. This finding, however, continues to raise questions about the structures that have created and continue to perpetuate masculinity as inherently risky. Given the risks for adverse health outcomes for men, the potential influence on their partners' health and well-being, and the well-documented negative outcomes for pregnancies and families , concerted efforts are needed to better engage men in pre-conceptional health care. Rural/urban residence was not associated with men's preconception health status. This finding was contrary to a seminal study that used the NSFG data and found men's preconception health status to differ by rural/urban residence . This difference may be explained by Choiriyyah and colleagues' focus on men who needed preconception care . The current study provides additional insight by examining all fecund men between 20 to 44 years, independent of their fertility intentions. Because about 40% of men reported unintended pregnancies , this approach allowed the examination of risk exposure and background differences independent of pregnancy intentions. Rural/urban residence alone has well-acknowledged limitations in examining the nuances of residential context and its contributions to poorer health. Among men specifically, Thorpe et al. argued for a place-based approach that examines the social environment in which men live to create a better understanding of the effect of place on men's health in general and on their preconception health specifically. More studies are needed that examine the social contexts, particularly neighborhood factors -such as social cohesion and racial composition -in which men live and plan to establish families. Although most men in this study had health insurance, the majority, across all latent classes did not have a reproductive health visit. This finding is consistent with previous studies in which men were found to have increased access to health care through insurance coverage, yet did not necessarily translate into increased access to reproductive health services . Men may be uncomfortable discussing their reproductive health or see it as an inherently female domain, hence they are less likely to utilize these services . Health care providers may be implicitly biased toward providing reproductive health services for females rather than for males . Providers' bias toward men's reproductive health screening may make them less inclined to inquire about men's reproductive health if their patients did not exhibit or report sexual risk-taking explicitly. Men in high-risk preconception health categories may be more inclined to seek reproductive care compared to other men in lower risk categories which may explain the reduced odds of non-reproductive health utilization. Given the preconception health phenotypes of men in this study, identifying the barriers men face when seeking care, beyond access to health insurance, and finding ways to surmount these barriers should remain a public health priority. Several studies and reports have emphasized the value of effectively incorporating reproductive health screening into men's routine health care visits . By making intentional changes toward ensuring that each health care encounter, specifically with men between ages 20 to 44 years, provides an opportunity for reproductive wellness, practitioners can begin to improve men's health status preconceptionally. This study found that men living below the poverty line were less likely to belong to the "sexual risk takers" or "substance users" categories which contradicts previous findings. Previous studies showed that men who have a higher education status were more likely to make health behavior changes preconceptionally . Specifically, Marcell et al. did not find any association between poverty status and men's need for family planning. Increased socioeconomic status can reduce stress for men and be motivational toward starting a family . In some contexts, however, financial independence increases the chance for risky behaviors due to perceptions of what masculine behaviors should look like for those in higher income brackets . Substance use and sexual risk-taking may be more difficult to afford at the lower ends of socioeconomic status. Conversely, men with a high school degree and higher were more likely to belong to higher-risk latent classes. Previous studies examining men's preconception health suggest that men with higher education status are more likely to make health behavior changes pre-conceptionally . Stressors related to achievement and career advancement may lead men to engage in more risky behaviors as a coping strategy . An alternative explanation could be the accumulation of wealth and negative masculine perceptions which may influence men to engage in risky behaviors as a sign of manhood or masculinity . More studies are needed to examine the contexts of men's masculinities and their influence on men's health behaviors. Similar findings were identified with employment status which suggests that changes in employment can influence the social class and masculinities pathway. Men often perceive themselves or have traditionally been socially constructed as "breadwinners" . Unstable employment can impact men's perceptions of themselves as providers, consequently increasing the likelihood of engaging in risky behaviors, including substance use . Men's immigration status was associated with decreased odds of belonging to any of the high-risk preconception health phenotypes. This finding was expected given that many other studies that explored immigration status on health often indicate the "healthy immigrant" paradox, in which immigrants to the US are healthier overall than the general US population . An unexpected finding, however, was the increased odds for belonging to the sexual risk takers category than the substance user's category among immigrants. Since this study examined all immigrants, our understanding of immigrants' preconception health statuses at the intersection of race/ethnic belonging is limited. Further, given the context of acculturation, through which immigrants are thought to lose their health advantage over time, more studies are needed to explorealongside racial/ethnic backgrounds -how acculturation in male populations impacts preconception health. Future studies will benefit from approaches that examine how long immigrants have lived in the US and variations in preconception health outcomes by racial/ethnic belonging. --- Limitations and implications for future research This study was limited by several factors. First, crosssectional data were used, which limits any causal associations between the exposure and outcome. Second, only a few preconception risk factors were examined. For instance, measures on smoking, high blood pressure, and other preconception health indicators were not utilized because they were either not measured in the dataset or were inconsistently measured across the survey years utilized in this study. LCA is also sensitive to the variables included in the model . In other words, the preconception health phenotypes observed are subject to the manifest variables included in the analysis. While the NSFG data were well-suited to answer the questions posed by this study, preconception indicators could be grossly understated. Future studies will benefit from utilizing a broader range of preconception health indicators. Further, all variables utilized in this study were selfreported, which can introduce social desirability, reporting, and recall biases. There were also limitations in terms of the social determinants of health measures that were utilized. For instance, immigration status was measured as a binary variable which is less informative than the length of time an immigrant had spent in the U.S. The length of time an immigrant spends in a host country has been associated with acculturation and stresses which can, in turn, impact preconception health. Future studies should consider using earlier years of NSFG data to explore these phenomena. Future studies should also pay attention to the upper stream and downstream determinants as well as potential pathways in shaping men's preconception health. This study provides valuable insight into men's preconception health. The data source, however, does not capture measures of masculinity which limits our understanding of why we observed these results. Future studies will benefit from qualitatively examining these phenomena among men, specifically exploring the factors that contribute to reduced contraceptive use, perceptions of health, and the influence on fatherhood. The regression models fitted in this study did not control for all SDOHs in a single model. For instance, race/ethnicity and immigration status which may affect the relationship between education and preconception health, was unobserved. Hence the association between SDOHs and men's preconception health may be limited by the variables included in each model. Emerging evidence from men's health studies however suggest that controlling for these effects such as age, education and race/ethnicity may prevent research from identifying the significant effects of these variables on health outcomes . The paucity of research on men's preconception health, and the effect of social conditions on these health states necessitated an initial examination on how SDOHs may impact men's preconception health. Although the utilization of LCA was a novel approach to characterizing men's preconception health, it has limitations. LCA assigns class membership based on conditional probabilities, therefore a "true" class assignment is not guaranteed. In addition, a classify-analyze approach was used to create a PhP variable that hard-assigned men to each latent class. This approach is limited because it assumes a "true" latent class belonging . However, the 3-class model was selected as the LCA solution of choice after fitting the model using multiple starting values to achieve a global maximum likelihood and examining posterior probabilities. The BIC, entropy, parsimony of the model, and relevance to the literature were important considerations in selecting the final model. This model selection approaches minimized the risk of a poorly specified model given the >80% probability that men would belong in the classes identified in this study. This study showed strong homogeneity and high separation into latent classes. --- Conclusion Taken together, men's health access, socioeconomic status, and minority/immigrant status can collectively have meaningful impacts on preconception health, even though it may be through different pathways. In some contexts, manliness is expressed through men's ability to engage in risky behaviors, including substance use and sexual promiscuity, while also remaining financially successful as demonstrated by achievement in educational advancement and social mobility. This study underscores the need to explore more in-depth the relationship between social class, masculinity, and men's preconception health. This study suggests that other underlying factors nested in men's experiences of their social contexts influence men's preconception health, however, nationally representative datasets are not designed to measure these unique experiences. Studies that examine how men, on the cusp of fatherhood, view themselves, their roles as fathers, and their health status at this intersection can improve our knowledge of the socio-cultural processes that intertwine to shape men's preconception health. of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher. --- Data availability statement Publicly available datasets were analyzed in this study. The datasets generated and analyzed during the current study are available in the Harvard Dataverse repository doi: 10.7910/DVN/4X4IEG. --- Ethics statement This study was based on a publicly available anonymized database, and was exempt from ethical compliance. --- --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those --- Supplementary material The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/ frph.2022.955018/full#supplementary-material

Background: Life course perspectives suggest that optimizing men's health before conception is requisite to equitably improve population health, an area of increasing public health focus. Although scholarship on the social determinants of health (SDOH) suggests that men's health and health behaviors do not occur in a vacuum, preconception health studies have not explicitly examined how these factors influence men's preconception health. Objective: To identify latent classes of men's preconception health and the role of the SDOHs in predicting class membership. Methods: Pooled data from the -male file of the National Survey of Family Growth were analyzed (n = , ). Latent class analysis (LCA) was used to identify distinct classes of men's preconception health. Eight manifest variables were used to fit latent class models. A classify-analyze approach was subsequently used to create a preconception health phenotype (PhP) outcome variable. SDOHs (exposure variable) were assessed in four domains (rural/urban residence, health access, socioeconomic status, and minority/immigrant status) to predict class membership. Survey-weighted multinomial regression models were fitted to examine the association between the exposure and the outcome. Results: Three unique PhPs were identified (lowest risk ( %), substance users ( . %), and sexual risk-takers ( . %) from the LCA model. Health access, socioeconomic status, and minority/immigrant status were significant predictors of class membership but not rural/urban residence. Sexual risk takers were more likely to be uninsured (aOR: . , % CI . , . ), collegeeducated (aOR: . % CI: . , . ), and non-Hispanic Black (aOR: . % CI: . , . ) while substance users were more likely to have unstable employment (aOR: . % CI: . , . ) and have a high school degree or higher (aOR . % CI: . , . ) than men in the lowest risk category.: Social determinants may impact men's preconception health in ways that are not conventionally understood. These findings raise important questions about how preconception health interventions should be created, tailored, and/or retooled. Specifically, studies that examine the sociocultural and political contexts underpinning the relationship between social class, Frontiers in Reproductive Health frontiersin.org Anakwe et al. . /frph. . masculinity, and men's preconception health are needed to provide nuanced insights on factors that shape these outcomes.

INTRODUCTION Due to declining fertility and mortality as well as improved public health interventions, population ageing has been a world-wide phenomenon. 1 In Nepal 6.8% of the population is ≥60 years and within Kavre District the number is 7.4%. 2 In Nepal, the life expectancies are 60.1 years and 60.7 years for male and female respectively. 3 With the increase in age, people lose their creativity, problem-solving ability, learning skills and develop short-term memory loss. 4 The body's ability to maintain homeostasis becomes increasingly diminished, organ system cannot function at full efficiency and immunologic efficiency decreases. Thus, there is an increased incidence of the infections and the autoimmune diseases. 5 Original Article was undertaken aiming to examine the status of health care utilization and extent to which specific factors demonstrate the relationship between health services utilization. --- METHODS A quantitative descriptive cross-sectional study design was used. Dhulikhel Municipality, one of the municipalities among three municipalities of Kavre district, in the central region of Nepal was selected as the site of the study. Ward numbers 2, 3 and 5 in the municipality were selected using two staged cluster and systematic random sampling method to interview 200 elderly residing in Dhulikhel Municipal area. Data were collected from 14th June to 1st July 2011 after pre-testing the Nepali version of survey questionnaire. According to Teijlingen van ER et.al, the term 'pilot studies' refers to mini versions of a full-scale study , as well as the specific pre-testing of a particular research instrument such as a questionnaire or interview schedule. 9 The study was conducted after obtaining approval from institutional review committee of Kathmandu University School of Medical Sciences and Dhulikhel Municipality authority. Voluntary participation was ensured and verbal consent was taken before data collection. Only the persons currently residing in Dhulikhel Municipality provided consent and those who were able to comprehend the questionnaires were included in the study. The elderly who were severely ill, mentally unstable and having no will to participate were excluded from the study. Survey data were entered and analyzed in the SPSS version 16 using both descriptive and inferential statistical approaches. 10 --- RESULTS The current study focuses with the identification of the status of health care utilization and factors affecting utilization of health care among elderly population of Dhulikhel Municipal area. The distributions of age groups, sex, marital status, education, ethnicity, occupation, monthly family income, family type and dependency on family for the elderly were appraised. The mean age of the respondents was 70.21 ± 8.26 years. There were more females than males, comprising of 56 and 44 percent respectively . The smoking behavior, alcohol drinking behavior, betel nut chewing behavior, tobacco chewing behavior, performing exercise, and activities of daily living of the elderly people were observed. Among 200 elderly, 30% of them were never smokers, 32.0% of them were never alcohol drinkers, 84.5% of them were never tobacco chewers and 56.5% of them were exercise performers . The rate of elderly persons visiting medical personnel in past one year in the study area was 68.0%. Reason for visiting medical personnel in past one year, visiting emergency department, reason for visiting emergency department, being admitted in hospital, reason for being admitted in hospital, use of diagnosis services, belief in traditional healers and the preference for seeking health care for the elderly people were also illustrated . The association between the health services utilization and socio-demographic factors of the elderly were evaluated. Marital status, dependence on others for activities of daily living, existence of chronic diseases, and elderly already on medication showed significant association at 95% level of confidence . --- P value *statistically significant at 95% level of confidence **statistically significant at 99% level of confidence --- DISCUSSION In the past one year within the Dhulikhel Municipality health services were used by 68.0% of the elderly population ≥60 years of age. Hypertension was found to be the leading reason for visiting the health institutions. Eight percent of the study population had visited the emergency department, primarily for diabetes mellitus. A few respondents had been admitted to hospital and more than half of them utilized the diagnostic services. In Taiwan, the utilization of health services was 50%, in Spain it was 74.5 % and in Canada the same was 76%. 11,12 In Scandinavian countries almost 90% of elderly visited a physician in the past year while 24% were hospitalized. 14 In our current study, 72.1% of the elderly people aged 70 to 79 years visted health personnel in past one year followed by elderly people aged ≥80 years and then 60 to 69 years . The results were consistent with the findings from studies done in Taiwan and Spain, but a contrasting result was seen in Thailand where 71.1% utilization was observed with the population of age group 60 to 69 year followed by 70 to 79 years and then ≥80 years . 11,13,15 Also a study done in Norway and Finland reflected increasing age caused a large increase in --- CONCLUSION The utilization of health care services among elderly population living in Dhulikhel Municipal area was assessed, nearly half of them believe on traditional healers. A majority of the respondents preferred going to health institutions for health care. Marital status, activities of daily living, having chronic disease, and regular medication demonstrated significant association with the utilization of health care. Social support services in order to help maintain their independence with their socioeconomic status, informal education targeting the senior citizens, and awareness education focused on health conditions and services available to elderly people are highly recommended. Similarly study covering a diverse population and geographical location is also recommended. the percentage of elders seeing the doctor, except after the age of 85 years when there was a large drop in consultation rate despite increasing illness. 14 The discrepancy in these findings may be due to the differences in the geographical distributions, costs, travel distance and policies of the countries. Literate elderly with educational level up to secondary level were found to be visiting the medical personnel more than the individuals with primary and higher levels of education and elderly who were able to read and write only. The findings of our study were similar with the studies conducted in Thailand and Taiwan but inconsistent with the study conducted in Spain. 11,12,14 But in contrast to the current study, study done in Ghana, it was found that a higher education level is directly or indirectly related with fewer visits, either because of a better selfreported health status, higher income level or better health status. 18 In our study females made more visits to medical personnel than males which is consistent with the studies done in Canada, Ghana and Australia but inconsistent with the findings from the studies conducted in Thailand and Taiwan. 12,13,15,18,20 Widowed elderly individuals visited more health services than the married and unmarried individuals, these findings were inconsistent with the findings of the studies done in Taiwan, Thailand and Ghana. 13,15,18 Although the result was statistically not significant, income-wise, the highest utilization of health services was observed in respondents with a monthly income of ≥NRs. 15,000 followed by people with income ranging between NRs. 5000 to 14999 and then income of less than NRs. 5000 respectively . This finding was consistent with the findings of the study done in Taiwan, but inconsistent with the study done in New Mexico. 13,17 Respondents with chronic diseases accounted for 83.5% of those utilizating health services. The findings of our study were consistent with the study done in Ghana. 18 Health service utilization was found highest among never smokers followed by ex-smokers and then current smokers . Findings of the current study were consistent with the findings of the study done in Spain and contrasted with the study done in Taiwan. 13,19 In our present study, elderly individuals who were dependent for more than one of their activities of daily living utilized the health services more than those who were dependent for one activity or independent which was similar to the findings of the study done in Spain which showed more utilization among dependent ones, but inconsistent with the study done in Taiwan. 13,19 This present study found that visits due to hypertension were most common and among other diseases: heart disease , musculoskeletal diseases , diabetes mellitus and respiratory disease . These findings were similar to findings of the study done in Spain and dissimilar with the study done in Taiwan which showed diabetes mellitus accounted for majority of the visits followed by hypertension and heart disease . 13,19 The trend of health service use was seen higher in respondents on regular medicine which was statistically significant at 95% level of confidence which was similar to the studies done in Taiwan and Spain. 13,19 This study discovered that 48.5% of the study population had positive belief in traditional healers. Among 200 elderly, 58.5% preferred visiting health institutions, 19.0% preferred visiting traditional healers, 12.0% preferred Ayurvedic measures first for seeking health care and 8.5% preferred home remedies. A similar study done in Thailand showed that 24.1 % the elderly visited traditional healers, 18.9% of them preferred self treatment and 49.8% preferred going to health institutions. 15 The respondents were selected from Dhulikhel Municipality area only, so it might be difficult to generalize the findings to whole population of Nepal. The responses regarding type of chronic disease and reason for visits to medical personnel including admission and emergency visit in past one year were entirely based upon the verbal response of

Population ageing is a common problem faced in many countries world-wide. Due to physiological and biochemical changes in the elderly, increased incidence of diseases is observed. There is often low use of health services by the elderly for a variety of reasons.To examine the status of health care utilization and to determine the factors associated with utilization of health care among the elderly population of Dhulikhel Municipality.A quantitative descriptive-cross sectional study, with a total number of 200 elderly people residing in Dhulikhel Municipality, was selected for the study. Data were collected across the months of June -July 2011 applying two-staged cluster and systematic random sampling method. Both descriptive and inferential statistics were measured.Sixty eight percent of the elderly visited medical personnel in the past year. Eight percent of them visited the emergency department where most of them reported with symptoms attributed to heart disease. Among 200 elderly, 12.5% of them were admitted to the hospital and 53.0% utilized diagnostic services. Age, marital status, activities of daily living, and regular medication showed significant association with health services utilization at 95% level of confidence (p >0.05).Marital status, daily living habits, existence of chronic disease, and regular medication demonstrated significant association with the utilization of health care. Social support services, informal education, and awareness programs targeting the senior citizens and studies covering a diverse population are recommended.

Introduction By 2012 aggregate UK housing wealth surpassed the 2007 pre-crisis peak and equalled 2.3 times the annual GDP; historically, it increased 14-fold since 1980 reaching a figure which is hard to comprehend. If this wealth was equally distributed, each household in the UK would hold £167,000 in housing wealth of which 70% was mortgage-free equity . Obviously, this is not the case. The unequal distribution of housing wealth across socioeconomic groups, age cohorts, regional and local markets has been well documented . Overall, homeownership has become more restrictive and owneroccupation rates have been falling since their 2004 peak, particularly among the young. Yet, pervasive long-term neoliberal policies and the post-2008 age of austerity have increasingly framed the owned home as a financial base for family welfare: "a mix of economic, social, and political changes forming the neo-liberal landscape of the past 30 years has turned home buyers into "investor figures" who see owneroccupation as a safe, secure, wise, and responsible vehicle for managing their money" . The recasting of the owned home as a hybrid of money, materials and emotions, a site of neoliberal governance and ideology, and the reshaping of owner-occupiers into investors constitutes the theoretical background against which we set our inquiry . Drawing on interviews with residents conducted five years after the 2008 crash and on historic house price and mortgage data, we explore owner-occupiers' discourses regarding the financial costs and gains of homebuying. How do owner-occupiers relate notions of financial gains and debt to the intertwined multiple meanings of the owned home as a space of shelter, place of home, store of wealth and increasingly an investment vehicle and an object of debt? We draw on Polanyi's idea of 'tacit knowing' and Lakoff's and colleagues' work on the centrality of metaphor in everyday life in order to understand owner-occupiers' discourses and their discursive omissions regarding the financial terms of homebuying. The relevance of our inquiry is threefold. First, it was argued that economic studies require a better understanding of how the economic is culturally constituted ; we thus aim to contribute to the growing scholarship on the cultural-economy of housing. Second, a better understanding of owner-occupiers' conceptualization of the financial gains incurred through homeownership help designing socially-accepted fiscal instruments in order to increase fairness in the treatment of housing costs across tenures. Finally, we aim to contribute theoretically in showing how metaphors capture and reiterate the internalization of the ideology of homeownership. Since metaphors inherently highlight some perspectives while hiding others, our particular focus is to emphasize the occurrence of the unnoticed and unspoken; in this case the inconspicuousness of debt relative to gains in owner-occupiers' discourses, which we term 'debt amnesia'. The paper proceeds as follows. Section 2 reflects on how the ideas of 'tacit knowing' and metaphoric reasoning can illuminate our understanding of the hybrid nature of the owned home; and how the unspoken can be epistemologically attained. Section 3 focuses on the repositioning of the owned house as an investment vehicle , particularly in the UK. After a description of methodology , section 5 illustrates the likely gains of homebuying using historic home value and mortgage data; this sets a context for section 6 which explores homebuyers' views regarding their calculation of costs and gains. Sections 7 and 8 take the analysis further by adjusting for inflation the figures shown in section 5, and by exploring homebuyers' perspectives regarding the time-bounded dimension of homebuying, respectively. Finally, section 9 concludes the article by showing that homebuyers' financially unsophisticated understanding of incurred costs and gains arises less from a cultural acceptance of debt and obvious book-keeping complexities but rather by them tacitly considering the alternative renting costs of an equivalent space of shelter. We reflect on some epistemological and policy implications of our findings and suggest further research. --- Tacit knowing, metaphor and the Asset-Shelter-Home A dwelling--we will use the Scottish term 'house' which applies to houses, flats and homes--has been recognised as holding different meanings, namely a space of shelter, place of home, expression of personal identity, social symbol , store of wealth and increasingly an investment vehicle and an object of debt . However, empirical studies noted respondents' difficulty in articulating their understandings of this uneasy mix of money, materials and emotions; hence respondents' took recourse to a small set of metaphors which emphasized some particulars while ignoring others. As that which is unspoken is key to our argument, we seek to link these and our empirical observations to Polanyi's idea of 'tacit knowledge' and to Lakoff's and colleagues' emphasis on the centrality of metaphor in everyday life . Michael Polanyi argued that 'we can know more than we can tell'. For instance, we can recognize the faces of a hundred people yet 'we cannot tell how we recognize a face we know'; that is because our knowing of a physiognomy has tacitly integrated the awareness of its separate particulars, which we cannot anymore specify. Tacit knowing structures human perceptions but also complex acts of conceptualizing, learning, understanding and acting; of knowing what and knowing how. While widely shared forms of tacit knowledge tend to remain unspoken , disparity in skills levels or in epistemological frames requires making the unspoken explicit. Although tacit knowledge can be hardly put into words, it can be nonetheless communicated but this requires both parts' effort to bridge the gap between that which can and cannot be told; hence communicating e.g. the art of diagnosing or dancing remains possible. Polanyi emphasized that just as our perceptions are rooted in bodily experiences, tacit thoughts are bodily-rooted through a process of internalization through practice. Generally a lucid examination of particulars can destroy the internalized understanding of the meanings attached to a totality . This work of deconstruction can paralyze knowledge; improve understanding by interiorizing the particulars once more; or fundamentally question the relationships between given particulars. We argue that the concept of tacit knowledge helps understand the complexities of the owned house seen as a totality whose particulars, if not unspoken, are communicated by metaphorical tropes. Lakoff and colleagues argued that metaphors constitute powerful tools for understanding everyday ways of thinking and acting, thereby constructing social realities and identities. They emphasized that metaphors are always partial, highlighting and hiding aspects of social reality; for instance conceptualizing 'arguments as war', we lose sight of the collaborative aspects of speech. The use of metaphors is thus not innocent; they assist the 'construction of truth' and the maintenance of existing social inequalities . For instance, the metaphor 'the man builds the house, the woman makes the home' captures persistent ideologies of patriarchy . Richards argued that the linguistic conflation of home with home-ownership in people's words, analogies and metaphors captures the internalisation of the ideology of homeownership. Looking at housing tenure aphorism, Gurney noticed the astonishing ideological consistency of few verbal utterances depicting the owned house as a classed sanctuary of personal control . Mortgages were seen as a means to possession whereas rents were depicted as dispossession . Using metaphors as research instruments, scholars reported on mortgages being compared to friendly, domestic pets in the UK but to alien, potentially dangerous creatures in Australia. Likewise, housing wealth tended to be seen somewhat more fungible in the UK--a safe or a credit card in which one can add or take money from--than in Australia where it tended to be seen as dormant 'pots of gold' or 'nest eggs'. These studies suggested that homebuying in the UK is internalised as an investment vehicle to a larger extent than in Australia. Lakoff and colleagues showed that conventional metaphors can be expanded or novel ones created in response to structural changes in society. Their example of 'time is money' reflecting the new industrial order could be paralleled with the common British tropes 'housing ladder' and 'homeownership is my pension' reflecting the neoliberalisation of housing markets . However, the power of ideology can be even more strongly evidenced by what metaphors hide and what remains unspoken --a point to which we return in our empirical analysis after we first outline some key debates regarding the financial possibilities of homeownership and secondly present the research design. --- The financial benefits of homeownership The debates regarding the ideological allegiances and policies that have structured the terms between welfare/housing, and owner-occupied/rented homes into stable configurations of welfare/housing/'residential capitalism' regimes are well rehearsed . Whether neoliberal globalization and post-2008 policies of austerity have significantly altered these configurations remains worthy of further exploration but is beyond the scope of this paper. We will focus instead on the repositioning of the owned house as an investment vehicle and the reshaping of owner-occupiers into financialised investors whose housing wealth may be liquidated in order to provide for family welfare. While the UK and other Anglo-Saxon countries take the lead, the financial benefits of homeownership are not ignored in other welfare/housing regimes . At a macro-scale, it is argued that homeownership facilitates broad social policy trade-offs, particularly with the pension systems through cycles of accumulation and decumulation across the life-cycle . At the micro-scale however there are important distributional caveats; for instance in the UK, household wealth distribution by deciles shows that individuals having greater housing wealth also have greater pension wealth whereas those with no housing wealth barely have any financial wealth at all ). Socioeconomic distributional limitations are compounded by geographical inequalities in the amount and yield of housing wealth . Notwithstanding these crucial differences in wealth distribution across owneroccupiers, the outright owned house indisputably contributes to 'income smoothing' via freerent shelter. At the micro-level it is this rationality that instils households buying into the advantages or the ideology of homeownership across welfare and housing regimes . As a financial gain of homeownership, the idea of rent-free living was conceptualised as 'imputed rents', which are linked to the owned house seen as a space of shelter, a roof over one's head. Taxed until 1963 under the 'Schedule A' in the UK, the idea of imputed rents made its reappearance in economic studies . Yet little is known regarding the ways in which imputed rents are conceptualised by owner-occupiers as actual gains during and after the mortgage term. The ideological 'normalisation' of homeownership , not least in terms of increasing homeownership rates , deregulation of the private rental sector and increased stigmatisation of social housing, has been paralleled by a significant growth in house values, indeed everywhere . Figure 1 shows historic movements in homeownership rates and house prices in the UK. Notwithstanding volatility, UK house price inflation averaged 6.5% over the last 50 years, which represented 2.5% percentage points above general price inflation. Figure 1 also shows that if house prices had only risen by inflation since 1970, the average national house price would have currently been £67,400 rather than £188,000. Likewise, if we take 2000 as year of reference, which is also the time since house prices have skyrocketed, the corresponding figure would have been £123,900. While there is lively debate on the macroeconomic effects of this sharp increase in aggregate housing wealth , there is agreement regarding its increasingly unequal distribution across households, having privileged owners over tenants, downsizers versus entrants/upsizers, older versus younger cohorts, and owner-occupiers in the South versus those in the North of the UK . To be sure, the owned home seen as an asset was and still is one of the reasons for which owner-occupiers buy into homeownership across many countries . This asset has primarily been seen as a mechanism for familial accumulation , a legacy to be bequeathed down the family generations across housing regimes whether in terms of the family home or liquidated housing wealth . The bequest motive is one of the reasons for which homeownership did not play out as a mechanism of accumulation-decummulation across the lifecycle to the extent to which it was theorised. The other reason is the identity of the owned house seen as place of home rather than an asset . A key area of scholarly and policy interest is the ways in which house prices connect to households' equity via the social institutions of mortgage and debt, particularly given the 1980s deregulation of financial markets in some countries . On the one hand, financial innovation has increased households' access to homeownership; on the other hand it has created more flexible and diverse mortgages which made housing wealth more fungible. Besides selling off, households could now tap into their housing wealth via the reserve or an existing mortgage, use it as collateral for secure, cheaper borrowing or pay their debt faster; in other words, rather then seeing their owned house as a latent store of wealth, owner-occupiers can use it as an investment vehicle or a source for welfare . While the evolution and distribution of mortgage debt, housing wealth and unmortgaged housing equity is carefully monitored , little is yet known regarding households' views of their mortgage choice and management, and how they perceive the gains, costs and debt of homebuying. While housing economists conceptualise mortgage debt strictly in terms of debt on capital value--the costs of borrowing appearing only on banks' accounting balance as a source of profit--we argue that at the level of households' budgets these two components cannot be separated, being theoretically two intertwined forms of debt but in practice just one liability, payable monthly. Our position aligns towards sociological views of debt seen as moral obligations of exchange in the everyday economy and links to measures of households' mortgage stress rather than figures on mortgage debt . While interest rates are key mechanisms of neoliberal monetary policy as well as familiar sign-posts for the selling of, and buying into financial products, there is a lack of scholarly inquiry regarding households' understanding of the debt thus incurred. Helping fill this important knowledge gap is one of the aims of this paper. With reference to pensions, housing and more broadly the individualisation of welfare, scholars draw attention to neoliberal policy expectations that individuals should become responsible, self-interested, financially-knowledgeable investors . However, these and other scholars have evidenced the perilous socioeconomic implications of these policy expectations as well as the inability and reluctance of many individuals in taking on the role of investors, including within increasingly financialised housing markets . While the deregulation of finance has opened up new possibilities, it also augmented the risks of homebuying in the face of macroeconomic turmoil and personal shocks to households' budgets . This is nothing new of course . The devastating global effects of the US sub-prime financial crisis have reminded the macroeconomic costs of enticing low-income households into homebuying. House prices have fallen virtually globally although there has been high variation in the extent of fall and recovery across national, regional and even local housing markets as it has been in the number of repossessions . While the financial gains of owner-occupation necessarily rely on ever increasing growth in home values, the accrued capital gains differ spatially and temporally . Depending on when and where one enters homeownership, the likelihood of facing severe negative equity for a long time--leading to repossession or residential traps--or conversely benefiting from capital gains varies significantly. These differences are also patterned by social class and cohorts (Hills et Household annual income was spread from marginal to affluent levels in both age groups. Overall, 35 respondents had below £30,000 ; 31 respondents had between £30,001 and £60,000; and 13 participants had more than £60,001 . Furthermore, 60 participants declared they were financially comfortable or doing alright, 14 were just getting by and five found it difficult. Selfdeclared home values ranged from £40,000 to £800,000 and accrued equity from £6,000 to £500,000. Our inquiry benefited from cultural differences between interviewees and the interviewer: Soaita's eastern European cultural understanding of bank borrowing as doubling/trebling the purchase price meant that she consistently probed to elicit respondents' views regarding the cost of servicing their mortgage. Interviews were transcribed and the anonymous transcripts were coded using NVivo software based on interview themes; then recoded into finer -categories collated into theoretically-informed themes. We also used the method of content analysis by quantifying the incidence of some categories (length of text 2 Additionally we interviewed 16 housing and financial experts. was disregarded given that semi-structured interviews allow the interviewer to probe in order to elicit details). --- Gross costs and gains To set the context, we first draw upon quantitative evidence. Table 2 shows the average gross costs and gains of homebuying over four distinct 25 year periods, and subsequent average gains in house value to 2015. Given that participants construct their frame of reference in gross figures, as we will show in the next section, we do not yet account for effects of time and inflation . We use average UK-wide house price derived from the Nationwide House Price Index. Mortgage costs were tracked over the 25 year term of a typical standard variable rate mortgage according to the average annual mortgage rate supplied by the Building Societies Association. No account has been taken of purchase costs , one-off payments to the lender, or costs of maintenance, improvements and homemaking . We have assumed that each purchase is financed through a 20% deposit and 80% mortgage paying the average standard variable rate applicable for each year. The columns to the right of the Table 2, headed 'profit' are calculated as follows:  'Profit 1' represents the value of the home at end of mortgage term minus its value at date of purchase. Profit 1 therefore represents gross capital growth over the mortgage term. However to be fully realised, the purchase should have been made entirely with cash and not with a mortgage which carries additional costs of borrowing.  'Profit 2' represents the house value at the end of the mortgage term minus the total cost of purchase . Profit 2 therefore represents the gross financial gains of homebuying. Currently in the UK, homebuyers could only By adding the amounts in columns 'b' and 'd' for deposit and mortgage payments, we observe that the total cost incurred was between 2 and 2.7 times higher than the purchase price . For instance, for a house valued at £11,300 a homebuyer actually paid £30,100. The amount paid in interest over the 25 years ranged from £18,800 to £56,700 . However, home values over the mortgage term grew by 3.7 to 7.2 times over the four mortgage periods. Consequently, the cost of borrowing consumed 27% to 38% of the 'illusory' Profit 1 for the mortgage periods considered. However, given the high growth in house values, homebuyers still made on average significant financial gains of between £51,600 and £97,400 over the mortgage term . Further gains accrued during the period of outright homeownership . Given common mortgage offers of 5% deposit after the early 1980s, we replicated these calculations correspondingly; perhaps surprisingly, differences in the financial gains incurred were trivial . Given recognised differences in house values and in their growth regionally, it was interesting to examine variations across one of the best and worst performing regions. Table 3 shows the stunning differences in both Profit 1 and 2 between the South East and the North East of England in all four periods considered. For instance, for the period 1990-2015, homebuyers' financial gains in the NE were only a quarter of those in SE. This is a mix effect from capital growth being smaller in the NE compared to the SE and by similar mortgage interest rates; consequently, borrowing costs wiped out 66% against 38% of the capital gains incurred over the period, respectively. Geography thus dramatically differentiates between higher and lesser winners on the simple ground of place of residence . Finally, we replicate these calculations for different housing types for 1990-2015, the only period for which national data is available. We observed that the values of flats and terraced homes have risen by over 4 times whereas those of semi-and detached homes by only 3.4 and 2.9 times, respectively. After deducting the costs of purchase, financial gains were surprisingly similar across housing types, however the buyers of less expensive homes did better than those who bought more expensive houses given their lower initial investment. Only by paying a larger deposit than our assumed 20%, would a detached house generate a similar profit; this is indeed facilitated by the practice of moving up the housing ladder in the UK. We conclude this section by observing that during the mortgage terms considered, whether homebuyers bought in a well or poorly performing UK region, whether they bought a flat, terraced or semi-detached home, on average they made some or significant financial gains even though the costs of mortgage doubled or trebled the purchasing price. However, these gains have only accrued due to the exceptional growth in house prices in each mortgage period considered in this exercise. If the growth in house values had only been half that experienced over each term, borrowing costs would have triggered losses . Only during the first two mortgage periods considered, would homebuyers have enjoyed some minor gains . We were interested to learn how participants accounted for the costs and gains of buying their home. --- Negotiating the multiple meanings of home In line with previous research , half of participants conceived their house exclusively as a place of home: "I prefer to buy my home even if it makes no financial sense" . Just under half saw their home as a dual identity of home-and-asset. Of these, some saw the eventual capital gains as just 'a nice bonus' while others believed there was a strong synergy between the role of the owned house as a place of home and an investment vehicle: "Luckily they both go the same way. The better place to live is a more expensive one and a better investment. That is just the nature of the situation of social economics" . It was slightly more likely for participants aged 35-49 than those aged 50-65 to account for their owned house as a home-and-asset hybrid rather than exclusively a home. Yet these differences were patterned by changing meanings along the life-course and household affluence/type rather than simply being cohort effects. Our participants entered the housing market as first-time-buyers between 1970 and 2012 . Housing pathways were obviously much more complex than we assumed in our exercise. On average, the younger group was already living in their second-bought home and the older group in their third one. Only 20 participants had not changed residence since they first bought. Yet all participants enjoyed calculating the profit of homebuying in terms of Profit 1--even as the difference between the value of their current home less the price of their first home--and they ignored borrowing costs: "I bought my first house for £7,500 and I sold the big house for £315,000! So, you don't make that sort of money by working for a living, if you know what I mean!" . Table 2 shows buying with cash is significantly cheaper than buying with a mortgage. Seventeen participants bought their current homes with cash. Ten participants were affluent homeowners living in large, expensive homes. Conversely, three participants have deliberately bought inexpensive homes using their entire savings in order to reduce outgoings. This comes at odds with findings reported in France or views from our six non-British private tenants who indeed planned buying with cash in the country of their origin: "If I want to buy a house I have to have the money in my hand. I don't want to owe any money to anyone or to pay double for it. I buy a property when I am able to pay from own pocket. With cash" . After later reflection, Mr KH texted to explain this 'debt amnesia' in cultural terms: "The answer to your question about why British people don't think about the total cost of a house they bought with a mortgage is this: we are very comfortable with debt. In fact, we are too comfortable! And some people have so much debt they cannot calculate the true cost. Debt is a way of life here, the true cost of goods does not matter to people." These differences show the normalisation of debt in the UK which feed into the unspoken, tacit knowledge of homebuying. As shown in other studies, our participants simply saw mortgage debt as a good form of debt or even not a debt at all: 'in this country, having a mortgage is seen as saving, really' . After probing, about half of our respondents reconsidered their understanding of borrowing costs in relation to gains but the other half remained unable to conceptualise these costs beyond the familiar metaphor of percentage interest rate. One participant, however, angrily denied any relation between borrowing costs and the purpose of borrowing: "That's stupid, borrowing costs have nothing to do with how much money my house has earned me; I borrowed, I pay for it. That I bought my house with that is unrelated, do you get it? " However, homebuyers' debt amnesia was also sustained by a socially-accepted opacity in the practice of mortgage selling and the construction of mortgage annual statements: "…banks and mortgage lenders are not the most popular institutions. Why on earth would a lender say, 'Your mortgage has gone down from £100,000 to £94,500 this year, but by the way the cumulative payments you have made to us over the last ten years are £680,000.' Where would the benefit from that come? It just doesn't make any marketing sense; it doesn't make any sense in terms of trying to build trust with the borrower" . Classic behavioural economics complement the picture of the homebuying investor: "We all like to think that we are really smart. None of our 20 participants prompted on this have kept their annual statements. Does the puzzling homebuyers' illusory miscalculation simply evidence their reluctance or inability to play the role of the financially knowledgeable investor? After all, Tables 234show that even when total purchasing costs are deducted from gross capital growth, homebuying still generates impressive gains. If we would further deduct the costs of homemaking, maintenance and repairs--that is the true costs of homeownership--gross figures may turn towards nil at least in some places. Moreover, if the owned house was seen exclusively as an asset, a truly financialised homebuyer would try to maximize profit by paying the mortgage faster. A few of our participants did; conversely 37 participants released funds by remortgaging. But critically, the owned house is also a space of shelter: "After all it's a question of paying the bank or paying a landlord! So you're as well buying as long as you don't have to move around too much for your job" . Paying a mortgage was seen as being cheaper than renting. The rent was cast as 'dead/wasted money', 'paying someone else's mortgage' or a 'life-time liability'. Conversely, homebuying resulted in 'rent-free living', 'reduced outgoings', it creates an 'asset at the end of it', offers 'capital appreciation', 'financial security', a reserve for pension or care and more importantly it can be passed down to children . Overlooking mortgage payments seems then just a way of simplifying the complex terms of buying the Asset-Shelter-Home. By considering the alternative renting costs of an equivalent space of shelter--which participants believed to approximate their mortgage payments--the gains of homebuying may indeed be equal to the capital growth over the mortgage term . These additional gains, corresponding to the hypothetical rents payable for a similar rented property, are no different from the concept of imputed rents. As one cannot spend the same monies twice, a theoretical argument can be made regarding whether the monthly mortgage payments buy an asset or pay a rent . This is important, particularly from a fiscal perspective in respect to the fair treatment of housing costs across tenures. Participants' motives to engage in homebuying were deemed to be primarily financial yet a careful reading showed the way in which they reflected expectations, constraints and opportunities stemming from a housing system perceived as offering two tenure options; privately owning or privately renting. Given household affordability, homebuying may therefore be seen as a misleading notion of choice since any other alternative is a significantly worse settlement. In other words, financially comfortable households have no other 'choice' but buying. However, it is interesting to consider whether the gains of homebuying stand the test of time. --- Looking through the lens of time Inflation affects both the value of money and houses. On the one hand, the purchasing power of money is diminished . On the other hand, house value growth contains two separate components: one derived from general price inflation, which we refer as the RPIX factor; the other component can be regarded as an additional housing market affect, representing the real growth in house values. Consequently, to calculate the inflation-adjusted profit of homebuying at the end of each mortgage term, one should deduct the deflated total costs of purchase from the real growth in house values. The results are shown as Profit 3 in Table 4. We observe that growth in house values has surpassed general price inflation resulting in real capital gains . However when the adjusted costs of mortgage are deducted, the real gains are only material for the two middle 25 years periods considered in our exercise, being very low or negative for the other two periods. Based on national averages, these real gains ranged from -£2,200 to £43,500 reflecting the UK boom-and-bust cycles and the corresponding perils or fortunes of homebuying--even though subsequent gains generate profit. If gross financial gains represented 62%-73% of capital growth , adjustments for inflation significantly reduced them to -3%, 32%, 19% and 1% respectively for each period considered. This is important given that participants' financial frame of reference was clearly the illusory Profit 1 that is capital growth. Looking at the corresponding figures for the NE and the SE , the highest losses were £51,300 and £13,200 respectively; the highest gains reached £32,500 and £67,200 respectively. As above, these real gains ranged between -69% and 33% of capital growth for the NE and between -8% and 42% for the SE. While on average, homebuyers' gross financial gains were smaller or larger by regions but still positive, inflation adjusted gains were not only significantly smaller in all cases, but were sometimes indeed losses. Inflation-adjusted gains were highest for flats, smaller for terraced houses and negative for semi-and detached houses, significantly so for the latter. However as the previous section has shown, participants' way of thinking included the alternative costs of renting an equivalent space of shelter into the financial calculation of homebuying . As participants tended to equate such hypothetical rents to their mortgage payments, the overall adjusted gains of homebuying can be approximated by the sum of Profit 3 and the deflated mortgage payments . Therefore homeownership commonly generated an impressive amount of unearned wealth. Table 6 shows these gains made through asset appreciation and imputed rents over the term of the mortgage. Yet it is important to note that despite large gains in gross figures, there were times and places where in adjusted figures the gains of homebuying were trivial even with the inclusion of imputed --- 'They always go up' Altogether, 73 out of our 79 participants believed their home value increased significantly. Asked why house values increased , participants proved to be free-market thinkers. Explanations in relation to economic fundamentals were clearly dominant, and navigating them successfully was to some degree related to luck. Key themes were the notion of a self-explanatory, transparently natural, reified housing market; various notions of inflation; and demand-supply disequilibria. Other factors mentioned by just a few participants were peoples' confidence, the state of the economy and easy supply of credit. In terms of the working of the housing market, and given the recent financial crisis, it is not surprising that participants were aware of housing boom-and-bust cycles, the difficulties in predicting them, and the advantages or risks of transacting at the right or wrong time: "I've been just lucky really; the housing market has just ballooned. It's just the market, I mean it's just crazy, just crazy" . Risks of loss were generally overlooked by strong beliefs in long-term increases in house values. A detailed look at the housing pathways of those who bought at the peak of the market, demonstrates that the interplay between housing careers, housing cycles and life course events was patterned by homebuyers' economic capacity to move up at a loss but also by the suitability of the house as a family home. Out of our 14 participants who bought in the late 1980s or early 2000s booms, only two lamented having been trapped for years in an unsuitable home, the remaining being either genuine stayers , could easily afford to move at a loss , were benefiting downsizers ; and finally, the case of a Londoner who was already able to re-mortgage by 2010, points to key differences in capital gains across regional markets. However, overall only four participants referred explicitly to geographical effects in house value , which draws attention to the complex links between housing and place. While participants have on average changed residence two or three times as homebuyers few of them have moved across UK regions. The working of the market was connected to notions of inflations. The relation between property and general price inflation was yet most ambiguous. The idea of general inflation was perceived within the frame of historic determinism by some participants in terms of 'the way of the world', 'the historic feel' or it elicited a childlike amazement as below: "We're talking in the office about the Mars bar. When I was a child that used to be the equivalent of 2p, it's now 80p! So the cost of living has done that! [By 40 times!] No, by 400 times!" . These figures were indeed correct according to the inflation index but this participant's astonishment is perhaps more telling regarding the extent to which individuals tend to exaggerate the effects of inflation on living costs. Conversely inflation was totally disregarded in the calculation of housing gains, as we have previously shown. Finally, the effect of housing commodification and lack of supply were also acknowledged by some participants: "It's a commodity. It's like anything else, it's supply and demand. And the housing stock in Britain at the moment to purchase is too small for the number of people that want to buy" . Besides the influences of economic fundamentals, own agency was also believed to be central to the raising value of one's home and it justified a sense of deservedness for the full enjoyment of the financial gains of homebuying--and opposition to taxation. Content analysis showed that this theme was however just half the density of the macroeconomics . Deservedness was justified by ideas of 'buying smart' that is the right home, in the right location, at the right time and by undertaking 'smart' improvements . However, as shown in the quotation below, owner-occupiers balanced the meanings of the owned house seen as a place of home and as a financial asset: "It has been done up considerably from what it was, so that has increased the value. But I did it to make it into my home, not because I was considering future value. And we bought in a very good location, somewhere we like" . More broadly, deservedness was also justified by making a 'responsible choice' rather than spending on 'high days and holidays' and by an ambiguous sense that a lot was paid for it . While participants enjoyed showing off their illusory capital gains in gross figures, these were also downplayed as just 'paper money'. The meanings of the owned house as a space of shelter, a place of home and a store of wealth remained inescapably intertwined and simultaneously embedded into the past, present and future dimensions of time: "It was irrelevant to whether we bought and whether values went up or down because at the end of the day you can't eat a house; everyone needs somewhere to live… if I sold the property now and put the money in the bank that would be silly… and where would I live? It's something usually you leave to your children unless disaster comes in the form of old people's home!" . --- Conclusions In this paper we examined owner-occupiers' views regarding the financial costs and gains of homebuying. We have thus substantiated the inconspicuousness of debt relative to gains in our participants' accounts, which we termed debt amnesia. Homebuyers unsophisticatedly calculate their illusory gains by overlooking sums paid in mortgage interest rates and those commonly re-mortgaged, used for improvements or moving up the housing ladder. Their expectations of ever increasing house values shed ambiguity on the effects of time and inflation on the financial costs and gains of homebuying; commonly they prefer to avoid discounting. We showed that the phenomenon of debt amnesia was socially constructed by congruent socio-linguistic, cultural, institutional and ideological devices. Socio-linguistically, the phenomenon of debt amnesia has been evidenced by universal -reference to mortgagors as homeowners instead of homebuyers; by metaphorical expressions unanimously depicting mortgage payments as direct payments to one's own pocket, and rents as a means of dispossession; and by the occurrence of the unspoken which has hidden the significant costs of financing a mortgage. These partial metaphors have given testimony to the internalisation of the ideology of homeownership through tacit knowledge . Institutionally, the phenomenon of debt amnesia was constructed by a complicit lack of transparency in the terms and practice of mortgage selling and the construction of mortgage statements which were built upon, and we could argue were also intended to manipulate, behaviour inclinations for the euphoria for winning and repulsion to loss. However the phenomenon of debt amnesia was clearly supported by high growth in house values; we showed that if capital growth was half over each mortgage period, gains would have often turned into losses. Finally debt amnesia was firmly grounded by participants accounting for the alternative costs of an equivalent space of shelter in the private rental sector; they equated mortgage payments to private rents. The stronger explanatory metaphor advanced by participants in order to account for the complexities of house value movements and their own gains was that of the 'market' and the tacit, internalised knowledge regarding the paradoxes embedded within the Asset-Shelter-Home; of course, none of these is an ideologically-free construct as theorists of the welfare/housing regimes have evidenced . Our study draws attention to the issue of fairness across tenures given the high financial gains made by most owner-occupiers through capital appreciation and imputed rents, even after deducting the full cost of financing a mortgage and adjusting for inflation. This has policy implications in terms of finding ways for taxing homeowners' imputed rents and capital gains; and/or including tenants' cost of rent into a personal tax-free income allowance in the form of a 'Rent Tax Relief'. Additionally, as a nudge policy to reduce household debt by increasing saving rates, we recommend that the terms of mortgage selling, including the construction of mortgage statements, should be revisited in order to make mortgage costs more transparent. Our particular focus of emphasizing the occurrence of the unspoken--in this case owner-occupiers' omission of borrowing costs in the calculation of gains--was facilitated by the different episteme between Soaita's eastern European cultural location and that of the respondents she interviewed. The former exhibits adversity to mortgage debt whereas in the latter mortgages are ingrained as good forms of debt. The importance of cultural location was strengthened by the divergent narratives between our British and non-British respondents and more generally by the surprising Anglo-Saxon scholarly omission to ask questions related to the cost of servicing debt. Widely shared tacit knowledge explains this omission but so does the observation that metaphors--and the unspoken--are complicit to dominant ideologies and to those who they advantage ; it is not surprising therefore that through the terms and practice of mortgage selling, powerful financial institutions prefer to obscure rather than make explicit the real costs of homebuying. Finally, our study has indicated a broader research agenda on the cultural-economy of housing. Given the obvious Britishness of our paper, further cross-country comparative analyses of the social construction of debt could bring interesting new insights. Given that the financial settlement of homebuying is so dependent on peoples' expectations of continuing high growth in house prices, a rich avenue for future research would be to unveil the sociallyconstructed and power-laden foundations of such widespread beliefs. A committed engagement with metaphoric speech can shed light on the many ways in which the economic is culturally constituted in everyday practices, and the implications of these to the maintenance or reinforcement of social injustices and inequalities.

Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. • Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal Take down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.

Introduction In many countries, COVID-19 national lockdowns have been the most profound, deep reaching, and significant public health interventions within living memory. Fig 1 provides a logic model describing a high-level overview of lockdown as a complex public health intervention. It shows a range of key contextual elements important to understanding the situation in which lockdown has taken place and it shows the central problem that initial lockdown was intended to resolve (i.e. exponential transmission of . It also highlights the complexity of lockdown as a public health intervention, with multiple, interdependent components, cumulatively working through varied and intersecting mechanisms to elicit a range of intended and unintended positive and negative changes. Within Scotland it is clear that the initial national lockdown intervention succeeded in relation to its primary goal of reducing the exponential transmission of COVID-19 and achieving its intended positive health outcomes . Similarly, as had been anticipated, lockdowns have led to unintended and negative health consequences. For example, there is emerging evidence concerning the amplification of pre-existing health inequalities [1][2][3], both overall [4,5], and in sub-population specific groups [6] groups, those experiencing socioeconomic disadvantage, and the unemployed). Evidence also suggests a worsening of mental health in adults [7,8] and children [9], along with increases in loneliness and isolation [10][11][12]. Broader impacts on family functioning [13], loss of economic productivity [14], and education [15], including the gendered burden of home schooling have also been reported [16]. In contrast to the emerging evidence of the unintended negative effects of a national lockdown, here we report emerging evidence concerning unintended positive changes. Taking a salutogenic approach which focuses on the factors that support and promote health during stressful conditions [17], we examine the positive adaptation and growth experienced by some individuals. Using cross-sectional data from an online survey, the key objective of the current study is to examine the social patterning of the positive effects of lockdown across a range of domains. Given the large corpus of work concerning the role of structural social factors such as poverty, racism, gender and age in explaining health and illness we hypothesised that our findings would be shaped by these classic determinants of health. --- Method --- Participants and procedure Data collection took place for 23 days from 20 th May 2020 to 12 June 2020, spanning the 9 th to the 12th week of national lockdown in Scotland. This national lockdown period was part of the UK-wide national lockdown that commenced in March 2020. The advice during national lockdown was to 'stay at home' and people were told to work from home wherever possible and to only leave their homes for essential purposes. These essential purposes included leaving home for food shopping, for medical purposes or to provide care for a vulnerable person. People were also allowed to leave home for one form of exercise each day. The target population of the survey was adults, aged 18 years or older, currently residing in Scotland, who were interested in sharing their experience of positive change. Participants were primarily recruited through social media advertisements on Facebook and Twitter which directed participants to the online survey on Qualtrics. All materials and procedures were approved by the Ethics Committee of the University of Strathclyde and all participants gave informed consent. The present sample comprised 3342 participants. Participant characteristics are shown in Table 1. --- Measures Sociodemographic and health variables. Participants provided sociodemographic and health data on the following variables: gender, age , relationship status , ethnicity, education , annual household income employment status , overall health , risk status for COVID-19, e.g., aged 70+ or have an underlying health condition , and COVID-19 diagnosis . Positive changes. We measured positive changes using an expanded version of the positive events subscale of the Epidemic-Pandemic Impacts Inventory [18]. We utilised 21 items to assess positive changes that participants may have experienced across a number of domains . The measure that we utilised can be found via the project's Open Science Framework page https://osf.io/nwh48/. Participants were asked "Since social distancing restrictions were introduced, what has changed for you?" with the response options of "yes", "no" or "not applicable" across each domain. Example items included "more appreciative of things usually taken for granted", "improved relationships with family and friends" and "increase in exercise or physical activity". A positive score for each participant was computed by scoring 1 for a 'yes' and zero for 'no' on the 21 questions. A total score was computed which comprised of the sum of the 'yes' responses for each participant. This was then converted to a percentage score by dividing the total score by the sum of 'yes' and 'no' responses. NAs were removed from the analysis since individuals could not increase their score by responding to a question which did not apply to them. A higher percentage positive score indicated a greater proportion of positive changes. The scale was found to have good internal consistency in the current study. --- Statistical analysis Exploratory univariate analysis, taking each socio-demographic factor in turn, was performed to determine which factors were associated with the positive change scores. Between group scores were analysed using t-tests or ANOVA. Factors independently associated with positive change were then determined using a multiple regression model with stepwise variable selection in which variables are sequentially entered into the model. All analyses were done using Minitab at a 5% significance level . --- Results --- Descriptive statistics The sample characteristics are shown in Table 1. In addition, a graph of the distribution of positive change scores is shown in Fig 2 . Scores ranged from 0-100 with a mean of 47.2% . Table 2 presents the proportions of people reporting yes, no, or not applicable at the item level of the positive change measure. From this it can be seen that the positive changes that were most commonly reported were: being more appreciative of things usually taken for granted , more time doing enjoyable things , more time in nature or being outdoors , paid more attention to personal health , increase in exercise or physical activity , and more quality time with partner or spouse . --- Positive change analysis Univariate analyses were used to identify factors significantly associated with positive change with post-ANOVA comparisons where appropriate. Table 3 shows the results. Females reported significantly higher levels of positive change than males. In relation to age, we found that there was evidence of a difference in the mean positive change score between the age categories, with the older age group demonstrating the lowest level of positive change, and significantly lower than those aged 18-24. Similarly, there was evidence of significant differences in the mean scores across each of the relationship status groups, with those married or living with their partner exhibiting the highest level of positive change. Those in the employed group had higher levels of positive change than those in the inactive and unemployed groups . When considering ethnicity, there was no evidence of a difference in positive change scores when comparing white and non-white participants. Similarly, for education, there was no evidence of a difference between the groups in terms of their positive change scores. For household income, there was no significant differences in positive change scores across the groups. However, there is a notable trend, with positive change score increasing with increasing household income levels. In relation to health, there was a significant effect of self-reported health, with those who reported their health to be 'very poor' having the lowest level of positive change and significantly lower compared to each of the other groups . In addition, those that reported being at higher-risk of contracting COVID-19 had a significantly lower positive change score than those not at high-risk. Finally, there was no evidence of any difference in positive change scores based on COVID-19 diagnosis. Multivariate analysis utilising stepwise regression showed that age, gender, relationship status, and self-reported health were all significantly associated with positive change. When considering the coefficients , it is shown that males reported a positive change score that was 6.1% lower than females. The older age group had a positive change score that was 7.5% lower than the younger age group. In terms of relationship status, those who were married or living with a partner had a score than was 3% higher than those who were single. When examining self-reported health, those who were in very poor health had a positive change score that was 24.5% lower than those in poor health, and 29.4% lower than those in very good health. --- Discussion The present study is the first to explore the social patterning of positive changes experienced during COVID-19 national lockdown. Referring back to Fig 1, there is clear evidence that unintended positive change has taken place as a result of lockdown, at least for some groups of the population. The important role of time was highlighted in the positive changes that had been made by the majority of the sample. Lockdown seems to have afforded people with more time to spend on activities they value. For example, the majority of the sample reported that they had been able to spend more quality time with their partner. In addition, participants reported that they had been able to spend more time doing enjoyable things, spend more time in nature or the outdoors, and increase their physical activity. Lockdown also seems to have provided participants with the time to reflect and the majority of participants reported that they were now more appreciative of things usually taken for granted. However, we found evidence of differences in the amount of positive change people had experienced, based on sociodemographic and health variables. Those groups with higher levels of positive change were females, those from younger age groups, people who were married or living with their partner, those who were employed, and those reporting better health. The phrase 'we are all in this together' has been used, both domestically and internationally, throughout the pandemic to highlight the sense that COVID-19 is uniting us in shared experiences. However, there is a growing evidence base on the inequalities associated with COVID-19. Our findings fit within this emerging literature and point to the fact that while some groups were able to take advantage of lockdown as an unexpected opportunity to make positive changes in their lives, other groups were not. Similar findings on the inequalities associated with adverse experiences during lockdown have been reported [3], with the experience of more adverse events being related to socioeconomic position . In addition, research on the experience of adverse mental health during COVID-19 has also shown the frequency of abuse, self-harm and thoughts of suicide/self-harm to be higher among women, BAME groups, those who were unemployed and those in poorer physical health [5]. Complementing this work, we also find that the experience of making positive changes in lockdown is shaped by many of these key sociodemographic factors. Together these findings indicate the enduring nature of health inequalities and evoke key concepts from complex adaptive systems perspectives within public health [19,20]. Despite the enormity of structural and social change that the national lockdown brought, there appears to be no sense of reaching a 'tipping point' in which the self-organising system that drives inequalities was radically disrupted or dramatically changed. In fact, emerging evidence suggests the opposite, there is clear evidence of negative feedback loops ensuring the system returned to stasis, reiterating inequalities along very familiar lines across a broad range of outcomes, for example, COVID-19 related morbidity and mortality, in addition to positive and negative psycho-social change. We believe that our study is the first to report on the social patterning of positive changes during a period of COVID-19 national lockdown. The study also has the strength of a large sample size, and the inclusion of a wide range of sociodemographic factors. However, there are limitations. Most notably, as our participants were primarily recruited from social media our sample is not nationally representative of the Scottish population. In particular, in comparison to Scottish census data it is clear that we have an over-representation of female participants and those educated to University level. However, the sample has a good age distribution and the ethnicity and household income levels of the sample is broadly reflective of the Scottish population. A further consideration relating to recruitment via social media is that we may have reached a different type of participant than if we had been able to employ more traditional recruitment methods. However, as the study was conducted during national lockdown, we were restricted in the recruitment methods that were available. In addition, the sampling method employed was purposive. Participants responded to study adverts which asked them to share the positive changes they had made during lockdown. We used this sampling strategy deliberately as we wanted to recruit participants who had experienced positive change in order for us to examine the processes behind these positive experiences. However, the amount of positive change being reported by participants in our study may not be typical of the experiences of the general population. In addition, the study is cross-sectional in nature and so provides only a snapshot of the positive changes people were experiencing at a particular stage of the lockdown, and cannot, at this stage, provide data on whether these positive changes were maintained over time. It is also important to consider the that the positive changes experienced by participants within the context of a national lockdown in Scotland may be different from the positive changes that people living in other national lockdown contexts experienced. As noted above, time was central to many of the positive changes that people made. National lockdowns across the board are likely to have afforded many people more time as time commitments such as commuting and many forms of socialising were removed. This extra time is likely to have provided many people with an opportunity to reflect, and as noted by the participants in our study to be more appreciative of things usually taken for granted. In this regard, our findings are likely to be applicable to other national lockdown contexts. However, they may differ from national lockdown contexts where stricter restrictions were imposed on time outdoors and time allowed for exercise. Within the national lockdown in Scotland people were allowed to leave their homes for exercise and many of our participants noted that they had been able to spend more time in nature and had increased their physical activity levels. Indeed, recent research has reported that moderate-to-vigorous physical activity levels increased during the national lockdown in Scotland [21]. These types of positive change would not have been possible in countries with stricter national lockdowns where people were not allowed to leave their homes for exercise. --- Conclusion The present study reports preliminary evidence relating to the social patterning of selfreported positive change during lockdown. The data reported here are part of the larger mixed-methods CATALYST project which seeks to understand how people have initiated and maintained positive change across a number of domains, during lockdown, and as restrictions have been eased. The aim is to share this learning through intervention development work, in order to facilitate positive health change in others. From the results of the current study, we can see that there are sub-populations and communities where it may be particularly important to target these interventions, in order to provide opportunities for health change amongst those who may benefit most. --- All data files are available from the Open Science Framework, http:// doi.org/10.17605/OSF.IO/NWH48 ---

Multiple studies have highlighted the negative impact of COVID-19 and its particular effects on vulnerable sub-populations. Complementing this work, here, we report on the social patterning of self-reported positive changes experienced during COVID-19 national lockdown in Scotland.The CATALYST study collected data from 3342 adults in Scotland during weeks 9-12 of a national lockdown. Using a cross-sectional design, participants completed an online questionnaire providing data on key sociodemographic and health variables, and completed a measure of positive change. The positive change measure spanned diverse domains (e.g., more quality time with family, developing new hobbies, more physical activity, and better quality of sleep). We used univariate analysis and stepwise regression to examine the contribution of a range of sociodemographic factors (e.g., age, gender, ethnicity, educational attainment, and employment status) in explaining positive change.There were clear sociodemographic differences across positive change scores. Those reporting higher levels of positive change were female, from younger age groups, married or living with their partner, employed, and in better health.Overall our results highlight the social patterning of positive changes during lockdown in Scotland. These findings begin to illuminate the complexity of the unanticipated effects of national lockdown and will be used to support future intervention development work sharing lessons learned from lockdown to increase positive health change amongst those who may benefit.

BACKGROUND The COVID-19 pandemic declared on March 11th, 2020 has led to unprecedented mortality and morbidity. While a great deal of initial focus was on survival and acute care, clinical and research initiatives have now shifted to addressing the staggering disability faced by patients who survive a COVID infection. The majority of patients who are hospitalized and mechanically ventilated do not return to baseline at the time of discharge and require ongoing care to address a range of physical, cognitive, and psychosocial sequelae [1]. For many, this has entailed a complex recovery comprised of interactions with multiple care providers in various care settings before returning to the community [2,3]. Navigating the care continuum is challenging for patients and families in the best of times and the COVID pandemic has undoubtedly overwhelmed the normal process of patient care management and increased the difficulty of care transitions and patient follow-up [4]. Although care transitions can be optimized through the support of family caregivers, they are often poorly engaged in the process [5]. This gap in care was intensified by the COVID pandemic, where "no visitor" policies restricted the physical presence and involvement of family caregivers in care planning and coordination [6]. One of the hallmark pressures of the pandemic was the extraordinary surge in newly infected patients being hospitalized at one time, leading to strains in health system capacity across the continuum of care [7]. One way that this challenge was met in the acute care setting was by accelerating the discharge timeline to move patients who had recovered from the most acute phase of their illness to post-acute care in order to free up beds for subsequent surges [8,9]. Although this strategy facilitated the transfer of the "least sick" patients [8], it precipitated a number of fears and anxieties amongst patients, families, and healthcare providers , and enhanced the risk of patient complications, readmission, and disconnected care [4]. It was also unclear during the early days of the pandemic if rehabilitation hospitals were prepared for incoming COVID patients, with many experiencing shortages in both personnel and resources [10,11]. Infection prevention and control measures further strained the accessibility of available therapies, services, and care providers. This was especially true in the community setting where outpatient and in-home rehabilitation services were suspended, resulting in many previously hospitalized COVID patients receiving little or no rehabilitation after an ICU stay [11]. The speed with which COVID patients transitioned across the care continuum coupled with limited family involvement and variable preparedness of healthcare settings, highlight the importance of taking a crosscontinuum approach to investigations of COVID care. To date, no studies have explored the experiences of COVID patients who were hospitalized, received inpatient rehabilitation, and returned to the community. Further, studies have yet to integrate the perspectives of family caregivers and HCPs who were involved in this care process. For this reason, we investigated the COVID care pathway from the perspective of patients, caregivers, and HCPs with the goal of understanding their experiences with care and recovery within and across care settings. --- METHODS This paper draws on data from a study investigating the implementation and impact of COVID care within a hospital network comprised of an acute care and a nearby inpatient rehabilitation facility based in Toronto, Canada. We employed a qualitative descriptive approach, which entails a concise and descriptively rich analysis that remains true to participants' own words [12,13]. Thus, it produces a data-near report that is representative of participants' views, making it meaningful for key stakeholders and relevant for justifying actionable change [12,13]. --- PARTICIPANTS AND RECRUITMENT We recruited HCPs working in or supporting an acute or rehabilitation COVID unit by email using the hospitals' COVID unit listservs. We recruited patients from an inpatient COVID rehabilitation zone between March-September 2020 and also obtained their caregiver's information. Patients were referred by a member of their circle of care. Patients were eligible to participate if they were English speaking and cognitively able to provide consent. Caregivers were eligible if they were a friend or family member supporting a patient that met these criteria and were themselves English speaking and cognitively able to provide informed consent. We contacted 23 patients and caregivers, of which, n = 9 were not interested in participating and n = 4 could not be reached. Patient-to-provider ratios at the rehabilitation hospital vary according to the number of patients on a unit at a given time, with typical ratios being 1:4 for nursing and 1:7 for therapists. During the study period, the ratio of patients-to-providers in the COVID zone would have fluctuated but remained close to typical ratios. --- DATA COLLECTION This study was approved by the Research Ethics Board at Sunnybrook Health Sciences Centre. Informed consent was obtained prior to data collection. One trained qualitative researcher conducted all interviews via telephone or Zoom between August 2020 and February 2021 . Data were collected until saturation of ideas was reached. The interviewer and the research team were embedded within the inpatient rehabilitation hospital, and participants had no prior relationship with the interviewer and understood that the study goals were to explore stakeholder experiences with COVID care. Interviews ranged from 30 to 80 minutes, were audio-recorded, and transcribed verbatim. All identifying information was removed from the transcripts, which were uploaded to NVivo for organization and analysis. Sociodemographic information was collected from patients and family caregivers as well as clinical characteristics for patients. We also collected professional practice information from HCPs . --- DATA ANALYSIS We used an inductive thematic approach following the steps outlined by Braun and Clarke, whereby data were deconstructed into isolated fragments followed by reconstruction into overarching themes that describe the higher-level messaging in the data [14]. Two independent researchers completed the coding process and three additional researchers participated in the thematic analysis. --- RIGOR Analytic rigor was enhanced by triangulating between multiple individuals throughout analysis, having regular team meetings, and exercising reflexivity . We also adhered to the COREQ reporting guidelines [15]. --- RESULTS In total, we interviewed 27 participants for this study, which included 10 patients, 5 caregivers and 12 HCPs . Of the 12 HCPs, n = 3 worked in the acute care setting while the remaining n = 9 worked in the inpatient rehabilitation setting. HCPs were occupational therapists , patient care managers , registered nurses , medical department heads , collaborative practice leaders , and a pharmacist . All HCPs reported a graduate level education. • What were your thoughts and expectations when you first heard that a portion of [unit] was going to be converted into a COVID Zone? • What were your top concerns, questions, and needs when you learned that you would be working in the COVID zone? • How do feel your needs/questions/concerns were addressed by managers, administrators and other senior leaders? • For managers/administrators/senior leaders: How did you address the needs/questions/concerns that staff had? • What has the actual experience of working in the COVID Zone with COVID patients been like? • What are your thoughts on the extent and quality of care that was delivered to COVID patients? • Reflecting on your experience with working in the COVID Zone, what do you think the top successes were? • Reflecting on your experience with working in the COVID Zone, what do you think the top areas for improvement were? Across patient participants, recollection of their early acute care experiences was limited due to the severity of their illnesses. Many patients explained that they were ventilated and/or in a coma and stayed in the intensive care unit for some period. As one participant described: "I was in intensive care for three days…I cannot remember one, one thing. I can't remember anybody coming near me. I can't remember a doctor. I can't remember a nurse. That whole three days is three days out of my life that I cannot remember." . According to patients, they spent anywhere between one to eleven weeks in the acute care setting before being transferred to the inpatient rehabilitation hospital. The health challenges they encountered varied but included severe debility and deconditioning, walking and speech difficulties, breathing problems, as well as pneumonia. Additional patient demographic and rehabilitation information can be found in Table 2. Most explained. --- THEME 1: THE PERCEIVED QUALITY AND PACE OF COVID CARE IMPROVED FROM ACUTE CARE TO INPATIENT REHABILITATION Participants explained that throughout the pandemic there were specific circumstances and policies that impacted the ability to provide care and address patient needs within a healthcare institution. Firstly, the novelty of the COVID virus generated widespread fear and anxiety about "the unknown" amongst patients, HCPs, and caregivers alike . For everyone, but especially patients, this heightened the need for informational and emotional support. Patients and caregivers explained that they would typically turn to their healthcare team for information regarding their condition; however, the novelty of COVID meant that even HCPs felt they lacked the usual level of insight and knowledge regarding patient condition, intervention, and outcomes. Consequently, HCPs described feeling "not so confident to answer all their [patients'] questions" . COVID also created an environment where resources were depleted, rendering the entire healthcare system-especially acute care settings-scarcely able to accommodate the high and constant influx of COVID patients. HCPs described that public health guidelines mandated they operate on a "get in and get out type of attitude" to minimize their risk of exposure, so they did not "really want to spend any extra time in [patients' rooms] than I had to" . Acute care was thus viewed as a particularly challenging environment where there was minimal time to "do anything but run in and out of the room" . The rushed nature of care and constrained ability of HCPs to provide high-levels of support and information was felt amongst patient participants who described the acute care setting as "unsettling" , "difficult" , and a place where they were constantly left "wondering why" . In inpatient rehabilitation, HCPs still felt pressure to minimize their exposure to COVID patients, which sometimes led to patients not being provided with therapy entirely because "some people didn't feel like the exposure of other people is worth it. Like really, do patients need to be seen for a ten minute treatment?" . Due to physical distancing requirements, the provision of comprehensive rehabilitation beyond the confines of patients' rooms was also difficult. Therapy predominantly involved "keeping [patients] in [the COVID area] of the unit. They couldn't go to the gym, they couldn't be walking all the halls for exercise, and they couldn't be doing all these other things that they would normally do" . The detriments of these constraints was recognized by HCPs who acknowledged that "therapy in the room is not as good as therapy in the gym, but we didn't really have a choice" . Despite the constraints and challenges expressed by rehabilitation HCPs, patients and caregivers overwhelmingly viewed the inpatient rehabilitation environment as more responsive to psychosocial needs and one where patients were "treated like a person" and HCPs"took the time" to reassure and address patients' concerns. In fact, some patients described HCPs as "so kind and nice in rehab, they were like family" . This was in stark contrast to patients' perception of acute care, where they felt HCPs distanced themselves from them to avoid contracting COVID. A key difference between care settings was that rehabilitation HCPs expressed and enacted fears and concerns around infectivity less explicitly, leading patients to feel more "at home" and "warm" in the rehabilitation setting and more "comfortable with the nurses" . HCPs themselves also described the rehabilitation environment as one with "less patients and so we had more time to spend with them" and thus were able to do "the most healthy nursing I've done in years" . --- THEME 2: CARE TRANSITIONS WERE ESPECIALLY DISTRESSING Acute care HCPs felt forced to 'triage' patients by quickly moving them across the care continuum to "get [them] home as quickly as possible to make room for the expected surge of COVID patients" . HCPs recognized that this problematically involved "taking patients who maybe weren't totally ready for rehab from [HOSPITAL] to make room for new patients coming in" . Despite the fact that some HCPs "got some assistance" from redeployed clinicians to better-support patients during transitions, patients and caregivers still felt "like I was just rushed out […] I just felt I wasn't ready to leave there" . One patient further explained that it would have been helpful to have a rehabilitation HCP "come [to acute care] and say 'I'd like to introduce myself, I'm from [REHAB]', and I could ask my questions and get some answers, I would have felt completely different" . The sentiments of feeling unready and hurried from acute care to rehabilitation were echoed as patients prepared to be discharged from inpatient rehabilitation to home. Once patients started displaying functional gains, they were told "I'm doing well, so then [DOCTOR] said we're going to discharge you tomorrow. I was thinking I'd be there longer" . Caregivers shared the sentiments of wishing their loved ones had more inpatient rehabilitation and highlighted how "more physio would've been great" and that "whatever she got there, it just wasn't enough" . Patients described that they felt unready to go home for a number of reasons including worrying "when I go home, who's going to cook for me, bathe me, stuff like that?" and also feeling "not quite steady enough to go home" . Once home, patients continued to feel unprepared as they still experienced limitations, such as a "lack of confidence in my walking at home" . Caregivers also highlighted their worries about their loved one transitioning home during a period where COVID conditions limited home care, voicing concerns about "what type of care she'd get at home" . While HCPs agreed that patients and caregivers were distressed about the transition to home, they attributed a portion of those sentiments to a fear of "infecting other members of the family when they're home. [Patients and caregivers] asked…do they need to isolate? Or what sorts of things do they need to protect themselves?" . Despite the challenging environments and difficulties associated with transitions, patients still described a strong feeling of "excitement to go home" and eagerness to "be with my family" . Some patients went as far as to decline additional therapy in order to speed up the transition to home as they were longing to be reunited with their families. --- THEME 3: RECOVERY FROM COVID STAGNATED IN THE COMMUNITY Despite the excitement to return home and a strong urge to "get back to normal life" , patients and caregivers found that once they were discharged, there was nowhere for them to go to continue receiving care that would enable them to progress in their recovery journey. Without adequate community-based support, patients' recovery was described as being "limited in a way" . This translated into feelings of stagnant recovery at home and in the community. Participants explained that COVID infectivity and related public health guidelines led to the discontinuation of outpatient and community-based supports that are typically provided to enable ongoing recovery at home following injury or illness. HCPs shed light on the lack of community based supports for patients, including how "a lot of the homecare services were declining patient service at this time. If you had a diagnosis of COVID positive, we weren't able to send these people home because they wouldn't get their homecare services" . This meant that COVID patients struggled to find physiotherapists, occupational therapists, and personal support workers to "come into the home and help me, or bathe me, or even shopping, things like that" . Even when patients were no longer believed to be infectious, there were still tremendous difficulties with accessing home-based care because "[community workers] didn't want to get COVID, plain and simple […] [community service] called us back saying they didn't want to go into people's homes, regardless of illness status" . Not only were patients struggling to access home-based care that would help them accomplish their activities of daily living, but there was "a complete loss of outpatient services" , meaning that patients were unable to go to healthcare organizations to receive the services they knew would enable their continued physical recovery. Without home and community-based supports, there was an additional element of stress and worry because "patients and caregivers feared that we would send them home with no help" . In order to accommodate for COVID circumstances and limited home-based supports, rehabilitation HCPs adapted discharge planning to include "workout sheets that I was told to do at home from my [in patient] physiotherapist" , and "phone numbers of physios that I called" . Patients quickly realized, however, that these resources were not sufficient to facilitate ongoing recovery as patients were rarely able to get into contact with community-based healthcare services. If patients did reach these organizations, the wait to receive the services was extremely long, with some individuals being "placed on a months-long wait list" . Conversely, when services could be obtained, participants felt that they were offered far too infrequently, with some patients highlighting how "coming once a week [to do my sponge bath] isn't enough" . Given the delays and decreased frequency of at-home services, many patient participants took elements of their recovery into their own hands, explaining that they "couldn't wait more than the three weeks, and at that point it was too late […] so I just did [rehab exercises] myself" , which sometimes entailed Internet searches for advice about 'deconditioning' and watching online videos of exercises. --- DISCUSSION Our study explored the experiences of patients, family caregivers, and HCPs with COVID care and recovery across the continuum of care. The crisis conditions evoked by the COVID pandemic challenged various aspects of patients' recovery across the continuum of care. Circumstances such as the fear surrounding COVID infectivity, HCPs receiving directives to minimize contact and exposure risk, restricted visitation policies, and a general paucity of information surrounding COVID all created heightened patient needs for information, transparency, communication, and support. However, these same circumstances that precipitated greater patient need also rendered the healthcare system pragmatically and logistically unable to adequately meet those needs. Our findings highlight that the COVID pandemic exacerbated existing challenges within the healthcare system, which complicated recovery across the care continuum. Three themes were identified and elucidated that: 1) the inpatient rehabilitation setting, compared to acute care, was slower-paced and led to care that was perceived as higher quality by patients; 2) care transitions were stressful, with patients and caregivers feeling unprepared to transition from acute care to inpatient rehabilitation and then to home; and 3) depleted resources and COVID restrictions made community-based recovery difficult. --- THE IMPORTANCE OF THE INPATIENT REHABILITATION SETTING IN THE COVID CARE PATHWAY Our study demonstrates the important role that inpatient rehabilitation plays in the continuum of COVID care. From the perspective of enhancing patient flow throughout the continuum of care, inpatient rehabilitation served as a 'pressure release valve' for the acute setting by creating additional care opportunities for COVID patients who were no longer in the most acute stages of illness but could not yet return home unsupported. Our findings suggest that while patients felt 'rushed' out of acute care, they viewed inpatient rehabilitation as far less 'fast-paced', which translated into perceptions of care being higher quality. Notably, this was in spite of the fact that HCPs themselves felt that the extent and quality of rehabilitation care provided was not as good as it may typically be outside of pandemic conditions. By capturing experiences from multiple stakeholders' perspectives, we were able to identify and reflect on this important dichotomy in views. It is possible that while HCPs measure the success and impact of their care through the content and quality of therapies provided, patients themselves place greater importance on the relational aspects of that care. It is known that the relationship between rehabilitation HCPs and patients is a key enabler of both positive experiences and improved patient outcomes, where positive relationships are supported by caring, empathic, and respectful behaviors from HCPs [16]. These were the types of behaviors patients in our study witnessed from their HCPs and left the most prominent and positive impact on patient and caregiver perceptions of care, lending support to research that has demonstrated HCPs' skills and attitudes to be highly linked with patient satisfaction [17]. Our study underscores that especially during a crisis such as the COVID pandemic, ensuring high quality interactions between patients and HCPs is imperative to enhancing the patient experience and promoting patient recoveryboth within the inpatient rehabilitation setting and across the continuum of care. As has been suggested by other studies [16] and echoed by our findings, important aspects of relational care include caring and empathic behaviors from HCPs and a willingness on the part of HCPs to engage with patients with interest, to understand their needs, and address their concerns. --- OPTIMIZING TRANSITIONS ACROSS THE COVID CARE CONTINUUM Most studies investigating the ways that care transitions were impacted by the COVID pandemic have centered on non-COVID populations [18][19][20]. Studies that have focused on the COVID care continuum have disproportionately considered decision-making pathways, screening, and care processes [21,22]. In turn, this body of evidence has yet to consider care transitions from the perspective of COVID patients, family caregivers, and HCPs. Presently, the overarching trend in healthcare is to reduce costs by reducing LOS for patients [23,24]. Our data suggests that participants felt that LOS was shorter than desired during acute COVD care and perceived this to be due to the need to free beds for additional patients. However, this shortened LOS was not adequately coupled with enhanced patient preparation for earlier discharge. As reported in other studies, patients and caregivers in the current study felt unprepared to transition from acute care to inpatient rehabilitation and lacked the understanding and education that might ease this transition [23]. The COVID pandemic generated an unprecedented demand for high quality transitional care while simultaneously precipitating conditions that undermined the core components of transitional care: engaging patients and family caregivers; educating patients and their caregivers; managing complex health and social needs; promoting well-being; and assuring continuity and accountability for care [25]. Our findings point to several ways that these components can be enhanced in order to optimize COVID care transitions: 1. Enhance integration between acute and rehabilitation care settings: Many patients in our study felt unprepared to transition between environments and much of this was due to a lack of information about what the next steps of recovery entail. Other research has noted that this is a common issue beyond COVID, with patients not being educated about what to expect from the inpatient rehabilitation environment [26,27]. As one patient in our study suggested, it may be beneficial to have a representative from the inpatient rehabilitation hospital meet the patient and family prior to transfer. This has the potential to enhance continuity of both information and relationships and advance an integrated care approach that promotes the inclusion of rehabilitation professionals early on in the continuum of care and recovery. Previous research has suggested that early physical medicine and rehabilitation consultations can decrease LOS in acute care, improve patients' post-discharge function, and help guide patients to the most appropriate care for their needs [23,28]. Given the rapid and widespread use of telehealth at the outset of the pandemic, this modality may represent an opportune avenue to initiate early linkages with rehabilitation HCPs to better prepare patients and families for the next step in the recovery journey. --- 2. Address multi-faceted health and social care needs: Our findings demonstrated that the COVID pandemic exacerbated common challenges with transitioning home after inpatient rehabilitation. Many of the challenges that emerged in participant narratives highlighted the importance of not only addressing patients' functional recovery and physical safety, but also considering the complexity of patient and families' health and social needs. One aspect unique to COVID care was the challenge faced by patients and caregivers to ensure infection prevention and safety upon return to home. This was recognized by HCPs in our study to be an added source of stress for patients and families at the time of discharge and emphasizes the importance of addressing both the physical and psychological aspects of patient and caregiver safety [24]. Research with other rehabilitation populations has noted that traditional discharge planning over-emphasizes functional status with little attention paid to the psychosocial aspects of recovery, which is detrimental to patient care since discharge readiness's hinges not only on physical ability but psychological ability as well as availability of family and community support [24]. In turn, clinical pathways for COVID patients would benefit from added planning and considerations for 'psychological safety' in order to enhance discharge readiness-especially back to the community. --- RECOVERY BEYOND THE WALLS OF THE HOSPITAL As others have pointed out, while discharge to home is often an optimal outcome after hospitalization, home health care was not able to provide the necessary support for those recovering from COVID-19 [11]. Coupled with widespread closures of outpatient rehabilitation services, patients were not able to access rehabilitation services outside of the inpatient setting [11]. This was certainly the experience of patients in the current study where the prevailing sentiment amongst participants was that this lack of access hindered ongoing recovery once patients returned to home. This appears to confirm existing concerns that the closure of rehabilitation clinics and lack of home care support may lead patients to recover more slowly [7] and thus render this a population with unique post-discharge needs [1]. One avenue for augmenting rehabilitation support and recovery for patients outside of the walls of the hospital is through telerehabilitation . Despite the widespread use of telerehab in the wake of the COVID pandemic [29][30][31], its application for COVID patients themselves has been comparatively limited. One of the few studies that has explored telerehab for COVID patients focused on the inpatient rehabilitation setting [32], further highlighting that telerehab's potential for supporting community-based recovery has yet to be realized. Although telerehab is an ideal way to provide post-discharge assessments of patient needs and to deliver key interventions [1,33], none of the participants in our study made mention of any virtual care options post-discharge, underscoring a significant gap in care and area for future research. --- STRENGTHS AND LIMITATIONS A notable strength of this study is the exploration of patients, caregivers, and HCPs' lived experiences across the continuum of care. We were successful in achieving robust sample sizes for patient and HCP stakeholder groups; however, family caregivers could have been betterrepresented in the sample. We achieved diversity in patient ethnicity and HCPs' clinical roles. However, we were not able to include HCPs from the community setting and all participants in our study were English-speaking, thus, our findings are limited in their transferability to community care practitioners and linguistically diverse individuals. Our study is reflective of one hospital network and clinical pathway . Thus, findings may not be transferable to other pathways that patients and families may take for COVID care. While we were able to access information about patients' rehabilitation care through a rehabilitation database, we did not have access to patients' acute care charts and thus could not report on acute care LOS, patients' acute health status and acute care interventions received. In turn, our study is limited in contextualizing participant experiences and patient-provider interactions based on acute care circumstances. Finally, our study represents a 'snapshot' of a specific period during the pandemic, and thus the perspectives of stakeholders may change or evolve as policies and procedures are modified based on emerging knowledge of COVID-19 and as the pandemic evolves with new variants, treatments, and preventive measures . --- CONCLUSION The COVID pandemic exacerbated existing challenges within the healthcare system, thereby complicating recovery across the care continuum. Inpatient rehabilitation was viewed as higher quality due to the slower pace and more relational care received compared to the acute setting. Care transitions across the continuum were distressing for patients and caregivers. Upon return to the community, a lack of rehabilitation access led to recovery stagnating. Our findings highlight that inpatient rehabilitation plays an important role in the COVID care continuum by providing patients with a period of slower paced care to support psychosocial recovery. Greater integration of acute and inpatient rehabilitation settings can ameliorate care transitions, while telerehab has the potential to improve the transition to home and ensure that patients and caregivers have access to adequate rehabilitation and support in the community. --- REVIEWERS --- FUNDING FINFORMATION The study was supported by the Sunnybrook Research Institute COVID-19 Research Initiative and the Sunnybrook Foundation 407 ETR COVID-19 Research Fund. --- COMPETING INTERESTS The authors have no competing interests to declare. --- AUTHOR AFFILIATIONS

Introduction: During the COVID-19 pandemic, discharge timelines were accelerated and patients were moved across the continuum of care, from acute to post-acute care, to relieve the strain in health system capacity. This study aimed to investigate the COVID-19 care pathway from the perspective of patients, caregivers, and healthcare providers to understand their experiences with care and recovery within and across care settings.A qualitative descriptive study. Patients and their families from an inpatient COVID-19 unit and healthcare providers from an acute or rehabilitation COVID-19 unit were interviewed. Results: A total of 27 participants were interviewed. Three major themes were identified: 1) The perceived quality and pace of COVID-19 care improved from acute care to inpatient rehabilitation; 2) Care transitions were especially distressing; and 3) Recovery from COVID-19 stagnated in the community.Inpatient rehabilitation was viewed as higher quality due to the slower paced care. Care transitions were distressing for stakeholders and enhanced integration between acute and rehabilitation care were suggested to improve patient handover. A lack of rehabilitation access led to recovery stagnating for patients discharged to the community. Telerehab may improve the transition to home and ensure access to adequate rehabilitation and support in the community.

Introduction --- Background The population of Europe is aging. Life expectancy is estimated to increase by more than a full year between 2016 and 2021-from 73 to 74.1 years-bringing the number of people aged over 65 years to more than 656 million or 11.5% of the total population [1]. Coupled with the increased incidence of chronic disease, this illustrates the challenges being faced by the health care system. Currently, hospital admissions consume more than 37 million bed days each year across the European Union . However, the digital transformation of health and care, a key component of the EU's Digital Single Market, offers tremendous potential for improving the prevention, detection, and management of chronic diseases as well as improving health system management and research [2]. New and innovative ways to maintain and enhance health are required. Connected health describes the use of technology to provide health care services in a more flexible and cost-effective way for both citizens and health care practitioners. CH refers to [3]: A conceptual model for health management where devices, services or interventions are designed around the person's needs, and health-related data is shared, in such a way that the person can receive care in the most proactive and efficient manner possible. All stakeholders in the process are "connected" by means of timely sharing and presentation of accurate and pertinent information regarding patient status through smarter use of data, devices, communication platforms and people. CH can be used by both clinicians and citizens to enable better and more efficient use of scarce health care resources. It promises a paradigm shift with novel technologies being used to create and develop links between individuals and communities, health and disease, and different health actors , thereby enabling citizens and health care practitioners to make better decisions about health care. CH interventions such as home-based exercise programs can contribute to CH impact via improvement in patient adherence [4], but they require reshaping of health care. Therefore, motivating stakeholder involvement to embrace such change requires some existing evidence on CH effectiveness and advantages. Unfortunately, there is still some distance to go in terms of proving the effectiveness of such programs [5]. The challenges in achieving such evidence-based proof are both technological and medical. The role of digital health education and the resulting literacy of CH-involved stakeholders have been highlighted [6], especially with regard to quality and safety concerns in health data as well as the fear of unintended consequences of technology use. A comprehensive set of evidence-based guidelines for CH might allow it to achieve its full potential [7]. Working toward the necessary evidence and medical guidelines will, however, require the development of a new CH culture that is actively embraced by CH stakeholders across multiple domains and disciplines. Adopting a CH approach to health care could enhance the delivery of a more integrated health care system [8]. For health care to be integrated, it must connect "inputs, delivery, management and organization of services related to diagnosis, treatment, care, rehabilitation and health promotion" [9]. Such coordination of care requires, however, a corresponding coordination of multiple professional camps, such as clinicians, medical device engineers, health care managers, and policy makers. CH can offer a key building block in this regard, offering the tools to coordinate consistent care across settings and over time and bringing together the various groups involved in patient care to decide, organize, and deliver services [8]. Concepts central to both the connectedness and integration aspects of the CH approach are sharing of information, involvement and collaboration of multiple professions, redesign of care models, temporal and organizational continuum, new care and business models, and leveraging of services via technology. The development of CH technologies, therefore, requires that professionals from across both the health care and technology disciplines work together in a more integrated and cohesive way. This implies a good understanding of the skills each discipline brings to the team and the health needs they intend to address [9]. Furthermore, these new services and care models involve innovation, which, in turn, involves teamwork and synthesis, including also a closer integration between health and biomedical sciences, as well as information and communications technology sciences [10]. A natural driver for such developments is education. Some work has already been undertaken in this area, and the European Network for the Joint Evaluation of Connected Health Technologies report [11] refers to education programs across Europe and the extent to which they are creating the conditions and skills necessary for the widespread adoption of CH. It is essential to educate the next generation of researchers, clinicians, scientists, and decision makers about the importance of CH so that they, in turn, will be able to empower citizens to engage with CH as fully as possible through their own professional lives. Medical students are envisioned as the frontline of digital natives, and telemedicine education is proposed for their preclinical and clinical curricula [12]. Recognizing that telemedicine and telehealth will play an increasingly essential role in the delivery of health care, the American Medical Association has called for telehealth to become a core competency of medical students. They do so in the knowledge that studies have demonstrated that a principal reason why physicians do not practice telehealth is lack of education despite patients' interest in telehealth [10]. Slovensky et al [13] proposed a set of mobile health skills for health professionals as a necessary enhancement for clinical training programs that ultimately would benefit both providers and patients. These included digital communication skills, technology literacy and usage skills, mHealth products and services, regulatory and compliance issues, and the technology business case. In the CH context, two key areas of education have been identified for future nursing graduates: the actual use of new technologies and managing and making sense of the data produced [14]. These are clear indicators of the need to consider CH education in different health care professions. However, CH involves a broad spectrum of disciplines extending beyond those directly associated with traditional health care and health care delivery. Recent studies and research programs have begun to recognize that engineers, computer scientists, information technology designers, and policy makers must together engage in interdisciplinary research to deliver on the promise of CH. Xu et al [10] emphasize the need for the discovery of new diagnostic tools and treatments by using a multidisciplinary and highly collaborative approach. Mountford et al [15] extend this to the education of CH researchers, presenting the need for comprehensive training and research program by embracing all key elements-technical, social, and economic sciences-required to produce researchers and project outcomes that are capable of meeting existing and future needs in cancer rehabilitation. We argue that relevant professionals outside of the health care field also need to understand the nuances and requirements of CH within the domain of modern medicine. For all disciplines to participate in the development of CH and to ensure that innovations are fit for purpose, it is imperative that all disciplines work together to enable a more informed and potentially creative future. It is, therefore, apparent that CH interdisciplinary team working needs to be established both in day-to-day practice and in the education programs that prepare professionals for such practice. --- The Research Question The main premise underpinning this research is that modeling interdisciplinary team working behaviors during the education process is a prerequisite for productive interdisciplinary cooperation in CH research and development as well as practice. Clear understanding of benefits, potential, and relevance of interdisciplinary collaboration must be learned and practiced to yield its full potential in the field. Education of health care professionals should embrace the technological innovation that is empowering the field of medicine today. Engineering curricula, being far more flexible in continuous adaptations to the exponential progress in the field, have already encompassed enabling technology for health. However, only bringing the interdisciplinary teamwork into the classroom will ensure broader acceptance and understanding of the fundamental CH concepts. Investment at the education level will eventually facilitate faster adaptation and implementation of CH technologies. The ENJECT Cooperation in Science and Technology action [16] initiative to summarize the existing readiness of European countries to adopt CH included an investigation into CH education curricula and revealed disappointingly modest efforts toward CH throughout third-level education [10]. The survey presents responses across 15 European countries to questions that assessed the prevalence of university-based programs that educate and equip health care professionals or future health care professionals to engage with CH. The results showed a reliance on biomedical informatics courses, with less than half of the sample programs offered by respondents having a CH or electronic health dimension. More than half of the programs cited had health care informatics as a major component. The majority of these 22 programs included the phrase health informatics or information management in their titles. This snapshot of health professional education indicated a lack of progress in the incorporation of CH into their program content, leading us to question the broader interdisciplinary context around CH education. If health care professional educators were struggling to span the CH interdisciplinary divide, then how might other relevant disciplines be faring in this regard? Given the inherently interdisciplinary nature of CH, we set out to qualitatively develop deeper understandings of the challenges that might underpin the ENJECT findings. Although core elements of an interdisciplinary program at the fourth level have been proposed based on the experience of Marie Curie Actions for funding early-stage researcher programs [17], such context-specific methods for interdisciplinary education cannot simply be transferred to all levels and contexts of academic education without more research and adaptation. This paper addresses that deficit by exploring how third-level IDE in the domain of CH might be leveraged to secure future development and practice of CH. Important questions concerning CH education are raised in relation to the disciplines involved, professional boundaries, crossing boundaries, and the optimum ways in which to deliver interdisciplinary CH education. With some notable exceptions, previously presented, existing literature offers few guidelines as to the design of IDE modules for CH teams, no advice on how much interprofessional education or IDE is adequate, and no indication of how its objectives should be defined. The aim of this study was to examine the perceptions of researchers engaged in interdisciplinary research regarding the design and development of CH education modules. --- Related Work --- Interprofessional Versus Interdisciplinary Education: Fundamental Concepts IPE and multiprofessional education are examined in the literature [18]. There is some discrepancy in the literature regarding the terminology used to describe bringing various disciplines or professions together to learn. IPE is defined as occasions when students of two or more professions learn with, from, and about each other to improve collaboration and the quality of care and services, according to the Centre for the Advancement of Interprofessional Education [19]. IPE is well established in health care education. The learning objectives, as expressed in the study by L'Ecuyer [20], are to communicate the professional roles and responsibilities of all team members clearly to others, to understand the relationship between effective team communication and improved patient safety and health outcomes, and to demonstrate skills of effective interprofessional team and patient-centered communications that integrate the knowledge and experience of other health professionals and patients to provide appropriate care. Although well established in the health professional sphere, IPE does not often encompass key nonclinical members of the contemporary health care team, such as medical engineers and informaticians or medical data analysts. Although the term has traditionally been defined solely in the context of health care professions, we propose that IPE now needs to be seen in a broader context. If CH research is to achieve its full potential, then there is a need for IPE to embrace professionals beyond health care-in particular engineers, computer scientists, physicists, and mathematicians who have a crucial role in designing the technologies required for CH. IDE, on the other hand, is defined as [21]: An interaction involving collaborations between students from differing subject areas in pooling their disciplinary knowledge in addressing complex and significant, real-world problems [leading to] the ability to understand and be understood by a diverse group of specialists. [22] explored the similarities and differences between interprofessional and IDE. As mentioned, definitions of interprofessional learning tend to link more directly to practice and the workplace than definitions of interdisciplinary learning. However, both explanations stress the centrality of collaboration and integration toward addressing complex problems. Emphasizing the synthetic procedure in the study of Aboelela et al [23], interdisciplinary research integrates the analytical strengths of two or more often disparate scientific disciplines to solve a given biological problem. While engaging in this mission, the terminologies, approaches, and methodologies may be gradually merged, and the scope of investigation may broaden and may even lead to new hybrid disciplines. --- Smith and Clouder Overall, within an interdisciplinary team, each team member builds on each other's expertise to achieve common, shared goals, for example, toward integrated care. In this paper, between IPE and IDE, the latter term is adopted. --- Challenges, Barriers, and Descriptors of Interdisciplinary Work Indicatively, IPE barriers have been identified in a study by Hall [24]: each health care profession has a different culture, which includes values, beliefs, attitudes, customs, and behaviors that contribute to the challenges of effective interprofessional teamwork. In this work, a clear and recognizable idea or goal, serving as the focus for team members, is suggested as an opportunity for addressing such barriers for teamwork to succeed. This idea dominance allows each member to shift from their specific professional focus to one requiring an understanding of another's observations and interpretations. Problem-based learning for IDE and IPE can support this idea and can be a vector of success in the context of CH. Beyond IPE among health professionals, CH training involving all relevant disciplines is not well explored. Attitudes toward interdisciplinary training have been studied where staff and students have been drawn from medical and engineering backgrounds. In a study by Spoelstra et al [25], medical and engineering students and staff attitudes were examined, and important differences were reported for staff and students between the disciplines regarding attitudes toward and perceptions of the relevance of interdisciplinary learning opportunities and the role of creativity and innovation. There was agreement across groups concerning preferred learning, instructional styles, and module content. Medical students showed greater resistance to the use of structured creativity tools and interdisciplinary teams. Such attitudes could be dealt with early in an educational program. As mentioned in the study by Feyerabend [26], viewing science too ideologically and rigidly, similar to a religion, and becoming dogmatic impair the overall progress of science. Mountford et al [27] comment on the increase of interdisciplinary research networks at the doctoral research level to increase innovation, creativity, and knowledge and focus on three such CH doctoral research networks that have been funded by the EU. They raise concerns as to the structuring of these networks to accomplish both deep disciplinary goals and broader interdisciplinary objectives at the same time. On the basis of 28 semistructured interviews with the doctoral students on these programs, they outline three key elements to enhance the development of interdisciplinary social capital within such networks: structuring the program to facilitate the extraction of value for each student from the interdisciplinary process, motivating students throughout the interdisciplinary program journey, and facilitating students to relate to others both within and external to the program. From another perspective, the value of interdisciplinarity in research has been critically examined [28]. Various researchers have explored the value of interdisciplinarity in terms of citation and funding. In a study by Bromham et al [29], it was found that the greater the degree of interdisciplinarity, the lower the probability of being funded, whereas in the study by Larivière et al [30], it was found that distance in interdisciplinarity increases scientific impact of publications. These studies introduce descriptors of interdisciplinary research [31], having as a basis the work of Stirling [32,33]. In that work, variety, balance, and disparity were introduced as indicators of disciplinary diversity. Variety refers to the number of disciplinary categories, balance is related to the evenness of the distribution of disciplines, and disparity measures the extent to which these disciplines are different or similar from a cognitive point of view. Such descriptors may be useful in describing necessary or typical interdisciplinarity in CH education and research. --- Paradigms of Interdisciplinary Education IDE assumes innovative teaching methodologies, as it should foster active students' involvement, exchange of opinions, and cooperation. The most widely used paradigms for IDE include competency-based learning, PBL, project-based learning, and design-based learning. Competency-based learning builds students' knowledge, one competency at a time. In that sense, it is a natural way to introduce different disciplines from along the continuum of learning into the students' body of knowledge. The formative method of assessment used in competency-based learning places an emphasis on the application of knowledge in a certain situation , focusing this educational paradigm on the skills acquired by the students [34]. As specific individual skills might be more challenging to obtain for different students, the collaborative learning approaches can be used to provide more flexible learning environment. The work done by Hall Barber et al [35] presents the results of the introduction of competency-based learning approach in medical studies. To enable students from different disciplines to work together, PBL has been used in IPE for health care professional students [36]. It has been considered as a means of encouraging self-directed learning, critical thinking, lifelong learning, and self-evolution among students. Project-based learning [37] involves the solution of a problem set by the student or instructor. This question or problem in focus serves to organize and drive activities toward a solution that addresses the driving question. It involves initiative by the student or group of students, and a variety of educational activities constitute parts. It usually results in a product delivered after a considerable length of time and investment of work effort. Teaching staff only play a facilitatory role in the learning process. When considering project-based learning versus PBL, the starting point in both approaches is a problem; however, in PBL, students' activity is directed to studying, whereas in project-based learning, students' activity is directed to constructing the solution or product [37]. Design-based learning has recently been proposed [38] as a means to help to bridge the gap between research and practice in medical education because it contributes toward both theory testing and refinement on the one hand and improvement of educational practice on the other hand. This genuinely introduces interdisciplinarity [39]. Its main aspects are iterative cycles of design, evaluation, and redesign; authentic real-life learning settings; testing and refining theories as well as advancing practice; mixed methods studies; and interaction among designers, researchers, and practitioners with different expertise. Project-based learning and design-based learning methods seem to present differences, as discussed in the study by Stokholm [40], not only in the procedure of learning but also in the foreseen competence creation. The former leans more toward discursive thinking and an analytical-oriented working mode, whereas the latter toward design and innovation theories, methods, and tools as well as a culture of systemic thinking and a synthetic-oriented working mode. --- Methods --- Overall Methodology To address the aim of this work and explore academic IDE toward the evolution of CH, a cross-institutional , multistep qualitative approach was defined. Although these institutions are geographically distant, they are similar in many respects. Both universities are state funded, and they both have highly competitive, long-standing, and sought-after professional health education programs and computer science and engineering programs. They also have well-developed collaborative interdisciplinary postgraduate research education programs, which have a CH ethos at their core. The AUTH Lab of Computing and Medical Informatics and Biomedical Imaging Technologies and the UCD Insight Centre for Data Analytics are international leaders in CH research and have collaborated in several EU-funded CH projects, for example, the initial training network "Connected Health Early Stage Researcher Support System" and the project "Championing a Multi-Sectoral Education and Learning Experience to Open New Pathways for Doctoral Students." The data collection was conducted in two stages: --- Stage 1 Interviews were undertaken with researchers in the health informatics sector collaborating with the AUTH MI-LAB, Greece. The purpose of the interviews was to gain insight regarding the views of researchers about the needs for CH education and the ways in which CH education could be best delivered. Ethical review was not required as this study was the evaluation of standard educational practices. All participants consented to participate and were assured of confidentiality and anonymity. The interviews were undertaken by an experienced qualitative researcher who has published several papers that have employed similar research methodologies [27,[41][42][43]. All staff and postdoctoral and doctoral researchers employed in or closely collaborating with AUTH MI-LAB in health informatics research or education were invited to participate in the study. A total of 9 individuals agreed to be interviewed, comprising 2 staff and 7 early-stage researchers . The majority of those interviewed were engineers or computer scientists, who had specialized in health informatics. All those interviewed had undertaken their research in an interdisciplinary context and had experience of communicating with a broad range of disciplines. All researchers had contributed to the health informatics module delivered to the undergraduate medical students at Aristotle University. The interview schedule is presented in Multimedia Appendix 1. All interviews were audio recorded, transcribed verbatim, and examined for emergent themes according to the method described by Braun and Clarke [44]. The technique of thematic analysis, as described in the study by Braun and Clarke, was used to analyze the interview data. Thematic analysis enables the identification, analysis, and reporting of patterns or themes that occur within a qualitative dataset while also offering a robust method of organizing, describing, exploring, and analyzing the data [45]. The interview transcripts were initially examined through the process of reading and rereading . The transcripts were read independently to enable the researchers to become familiar with the data. Each person then made individual observations in relation to the interview content while developing preliminary inductive codes. Working together, the authors developed a coding framework, which was subsequently used to examine the data. To ensure consistency, the authors discussed agreements and disagreements to reach a consensus regarding the emergent themes. The themes were aligned with the codes, thereby enabling the development of a narrative. Through the analysis process, the perceptions regarding how interdisciplinary could be designed and delivered were examined. Qualitative data analysis software was not used in this study. --- Stage 2 This stage included workshops to gain further knowledge and insight. These workshops took place at the Insight Centre for Data Analytics, UCD, Ireland. The method used in both workshops was based on the structured group feedback approach [46]. This method was selected to garner participant responses in relation to the themes that emerged in stage 1. In all cases, the participants were informed and consented to the use of their data for research purposes, and no personal data were collected. Workshop 1 was entitled "Finding our way for interprofessional connected health education" and followed a 3-phase procedure. In phase 1, participants were split into education and teamwork groups. Those participating in the education group had to individually reflect on four questions and answer in written form: regarding interdisciplinary educational examples; the education level for a CH course; benefits, challenges, and objectives for a CH course in an interprofessional class; and potential project setups for a CH class. Similarly, the CH teamwork group had to reflect on and write answers on interdisciplinary teamwork examples, potential concept and terminology or language barriers in interdisciplinary work, interdisciplinary teamwork barriers in CH research, and potential beliefs and attitudes to be addressed in CH teamwork. The questions are listed in Multimedia Appendix 2. In phase 2, the group members came together to discuss their answers and reach a fusion of ideas as well as a consensus or a ranking and prioritization within group. In phase 3, a plenary discussion took place. Each group rapporteur presented their results to the whole group of participants, and a final consensus was reached. This workshop had 10 participants, all of them researchers in CH, including postdoctoral researchers , PhD students , and professors , from medicine, physiotherapy, business, social sciences, and ICT backgrounds. The duration of the workshop was 2 hours. Workshop 2 took place during a full group meeting of CH researchers at the Insight Centre and included 16 participants, including postdoctoral researchers , PhD students , and professors . The disciplines represented were the same as those of the first workshop. The duration of this second workshop was less than 2 hours. Building on the outcomes of workshop 1, the purpose of this workshop was to refine and elaborate on specific points. Therefore, the previous procedure was followed, but with the addition of two new questions that focused on preconceptions in an interdisciplinary team that could be addressed through education and the focus of an interdisciplinary CH course , and again, the participants were split in two groups that answered and discussed the two questions before coming back to a full group discussion. --- Results --- General Findings The analysis of the interviews revealed a number of key themes as follows: challenges concerning IDE, recommendations in relation to developing IDE, and positioning of IDE within a curriculum . Quotes were chosen that were illustrative of the subthemes and themes emerging, with due regard to representation across institutions, disciplines, and career stages. The interviews were complemented by the workshop results on CH education and interdisciplinary teamworking. --- Interview Results From the Lab of Computing and Medical Informatics and Biomedical Imaging Technologies, Aristotle University --- Challenges Identified to Interdisciplinary Learning The researchers interviewed in health informatics domain at the Aristotle University identified several key themes in relation to CH and CH education. They identified several challenges that centered on working across and between disciplines. The challenges were frequently associated with communication and the difficulty experienced in communicating their own key disciplinary concepts while also understanding those of an individual from another discipline in an interdisciplinary context. They identified that each discipline perceives ideas and concepts differently and that it can take time to convey these concepts to an individual beyond their own discipline. One researcher commented as follows: The fast pace of technological advancement is beyond doubt; however, some concern was expressed regarding the up-to-date understanding of members of other professions within the team. --- Difficult because we cannot communicate properly our needs both of us...I ask something my own words because I have something on my mind and I say because it is a different way of thinking so we have --- One participant commented: The problem is with the older doctors who think technology is not for them and try to put the burden on you...they too must understand things so that they can help me and their selves. [AUTH 6] The interview participants frequently referred to their links with health care staff, their need to work together, and the importance of being able to communicate and collaborate as being an essential element of their work: --- ...constantly in communication with the health care professionals in order to explain to them how to explain to the patients how to use our devices and our applications. [AUTH 5] A number of participants raised the possibility of resistance from other disciplines to engage in an interdisciplinary context: --- I don't know the level of willing that's let's just say from different departments to join forces. [AUTH 1] --- Recommendations for an Interdisciplinary Learning Environment The staff who were interviewed had considerable experience in terms of education delivery, many of whom had delivered lectures and supported the laboratory lessons for the undergraduate medical program and curriculum. When they were asked to describe how best they thought IDE could be delivered, several critical recommendations for learning emerged. A number of participants recommended that students should learn to work as part of a multidisciplinary team from early in their education, as they believed this would prepare them to collaborate and communicate with disciplines beyond their own from early in their careers: ...laboratory sessions for students...team orientated.. --- .multidisciplinary projects for the students in order to learn from early on how they can collaborate and how they can speak the same language. [AUTH 1] A number of participants identified the importance of learning in an enjoyable environment because they believed that this promotes better engagement and an opportunity for students to extend their learning beyond their own disciplinary limits: --- ...have a little bit of fun a play…play that will turn on your imagination not for hard work…that you are doing daily…let's have fun and be out of the box you know... [AUTH 3] One person identified the value of interdisciplinary work as a means of empowering students to link research and clinical outcome: --- More practical things how to link the research with the clinical outcome. [AUTH 4] Another indicated that interdisciplinary work is an opportunity to innovate in terms of education and enable the introduction of contemporary topics with a view to stimulating student interest in engagement and learning: ...cutting edge and innovations which are currently hot in the science field. [AUTH 5] --- Position of the Interdisciplinary Module Within the Study Program The interview participants made some recommendations in terms of the position of an interdisciplinary module within a program. A number of participants commented that owing to the wide variety of career pathways that can be chosen by electrical engineers and computer scientists, many of which do not involve engagements with health care, it was thought that offering such an opportunity late in an undergraduate program or as part of a master's degree program would be most appropriate One participant commented as follows: ...only at the last years when you have chosen your faculty...because electrical engineering is versatile.. --- .its only one tenth of what engineering can do. [AUTH 6] Another participant indicated that introducing such innovations at an early stage within the formalized education cycle might be difficult; however, it could be developed initially as an extracurricular activity: ...in order to include this seminars this lesson in the everyday curriculum of high school or the first semester of college or university I think this is a little bit difficult all this could be in extracurricular. --- [AUTH 5] --- Workshop Results From the Insight Centre for Data Analytics, University College Dublin With respect to existing or potential cases of IDE, quite a few education examples emerged-"Patient care in the long term" or a "CH design project" . These cases were distinguished from other more clearly multiprofessional education examples such as biotechnology programs, patient care in case discussions within medical training, and training in rehabilitation programs. In these multiprofessional education examples, the role of multiple health professionals appears, but rather as forming parallel and not fusing or interacting paths. Overall, it was more challenging to find interprofessional courses. With respect to positioning of the module within the program, two levels were identified for CH education with two different aims: at undergraduate level for awareness-raising purposes, not necessarily focusing on interdisciplinarity, and at postgraduate level for actual interdisciplinary research. An alternative idea was to embed elements within different courses at the undergraduate level. At the undergraduate level, it was found essential to inform students about the roles of different actors and to address misconceptions, perhaps by presenting examples of how interprofessional projects worked. To build a common language within an interdisciplinary PBL team, participants believed that some time has to be invested, and each member has to have at least an undergraduate level of proficiency at their discipline. This indicates the master's level as an appropriate time for achieving the second aim of CH education. At later stages, it was felt that the lack of time, professional duties, and professional bias might hinder the potential involvement in interdisciplinary research teams. Project-based and problem-based courses were discussed as a means to involve young researchers, with fresh eyes in interdisciplinary experience. Course setup examples were mentioned. For project-based learning, such course examples included health and well-being solutions or CH projects, whereas PBL examples included patient care at large as a topic and a hackathon as the instrument. Learning should take place based on real-life scenarios and solutions or actual clinical studies and authentic problems that have not been accommodated under traditional care scenarios. Participants suggested learning in a practical way, using real products where clinicians can see outcomes and by locating real problem-based situations and investigating how technology can solve these problems. Participants were adamant that the PBL experience should include learning to map the problem, as designers do. In general, teamwork learning was placed as the central concept toward better understanding the domain and the team and meeting patient care needs. Learning from experience is important; therefore, an idea offered was to swap hats to reflect on and understand roles, for example, by encouraging the engineer to take the patient's history and the clinician to be aware of the evolution of technology. With regard to teamwork research, a series of interesting ideas emerged. Discovering and highlighting the value of participating and working in an interprofessional or interdisciplinary team was identified as an essential process. To alleviate barriers, it is crucial to build interprofessional or interdisciplinary empathy skills as well as to understand and communicate one's own skills to strengthen the team. Each discipline may have a different view ; therefore, an iterative procedure is needed. Participants emphasized the importance of remaining open to new ideas, understanding the gaps, and highlighting both success and failure stories. The teamwork qualities mentioned most frequently were curiosity, attitude, confidence within the team, and acceptance of complementary personality types. --- Discussion --- Overview Our research suggests two areas where improvements can be made in the synthesis and design of new CH education concepts: overcoming disciplinary boundaries and designing for disciplinary interaction. These build into a model for IDE for CH as illustrated in Figure 1. --- Overcoming Disciplinary Boundaries Our research identifies three challenges that must be overcome in the design of new CH education programs to ensure cross-disciplinary engagement: communication challenges, state-of-the-art knowledge, and resistance to interdisciplinarity. We have combined insights from both the literature and the data gathered to develop suggested responses to the challenges identified as outlined below. --- Challenge 1: Communication In the first instance, our data indicated that difficulties regarding the different perceptions of ideas and concepts were hindering interdisciplinary endeavors. Participants also highlighted the difficulties posed by multiple disciplinary jargons. --- Proposed Solution On the basis of participants' insistence that understanding alternate perspectives is key, we borrow from design thinking literature to suggest the use of empathy interviews to gain an understanding of multiple viewpoints. Sarasvarthy [47] presents it in the context of entrepreneurial thinking, "the point of exploring contrasting perspectives...is not to prove one superior to the other, but to learn to understand and use both". Addressing the disciplinary language difficulty, we combine interview and workshop data to suggest the investment of time at the master's level to develop a common language directed at CH activities that span disciplinary boundaries. --- Challenge 2: State-of-the-Art Knowledge The second major challenge raised throughout our research was the divergence in knowledge across disciplinary boundaries as to the availability of state-of-the-art technologies. --- Proposed Solution We accept participants' recommendations from our workshops that students be encouraged to swap hats throughout their training to develop an understanding of the different roles of different disciplines. This may increase understanding on all sides of the disciplinary divide that their interdisciplinary colleagues are only like to be at the cutting edge of their own discipline. Just as computer scientists are unaware of the latest medical techniques, clinicians are unlikely to know of the latest software developments. This will, in turn, lead to patience and a willingness to invest time to bring interdisciplinary colleagues up to speed. --- Challenge 3: Resistance to Interdisciplinarity Our data indicate an unwillingness among some students, researchers, and practitioners to reach across the disciplinary divide. --- Proposed Solution We recommend iterative processes in the education modules as per the principles of design-based learning discussed in the Introduction section [39,40]. Social constructivist learning theory, whereby learners work together, sharing their learning and constructing a new understanding for themselves through their experiences, underpins the concept of design-based learning [48]. Our data indicate that this is required to ensure that different views are accommodated and that interdisciplinary skeptics are given time and repeated opportunities to come on board. --- Designing for Disciplinary Interaction Our research indicates two major factors that lead to the successful design of interdisciplinary CH education: the nature of the education module and the positioning of the module within the education program. --- The Nature of the Education Module Overall, two key issues arose as to the nature of the education experience when seeking to integrate disciplines that may assist in the design of successful CH education going forward. The first is the creation of an enjoyable and challenging educational environment. Our data suggest that innovation and interest are key to the design of such an environment. The second is the necessity to link research and education together with its corresponding outcome, as our study confirms that education recipients wish to map their educational and research activities onto real-world practice. We recommend the use of both problem and project-based learning approaches to address both environment and application needs. Our workshop results suggest that although project-based activities are more suited to health-and well-being-focused challenges and educational outcomes, problem-based learning is more likely to address those that focus on patient care. --- The Positioning of the Module Within the Education Program Our data suggested a divergence of opinion as to whether these modules and the learning associated should be delivered early or late in the educational life cycle. Arguments for early delivery center on the advantages of early integration and the embedding of interdisciplinary attitudes. Those who advocated later delivery were concerned that the lack of developed skills and knowledge at that point might hinder useful interdisciplinarity. In response to both sets of concerns, we recommend a dual approach suggested by our workshop participants, which sees early awareness-raising activities followed by later problem-and project-based learning activities . Introducing interdisciplinary CH learning in this way is supported by Schön's work in relation to the role of reflection in professional learning discussed by Atkins and Murphy [49], who maintain that reflective professional learning occurs in three stages: first, creating awareness and feelings of discomfort; second, critically analyzing knowledge and feelings; and finally, developing a new perspective. In a similar vein, the spiral curriculum [50], an education design whereby topics are visited and revisited at increasing levels of complexity, allows the development of deep learning. Theory, therefore, supports our participants' suggestion of an early introduction coupled with a later development of learning. --- Conclusions and Future Work The CH ecosystem sets the basis for the investigation and deployment of new care models, leveraged by technology [51,52]. CH offers new opportunities for redesign and improvement of health and care, but its implementation and acceptance necessitate reorganization at multiple levels. IDE in CH is the cornerstone for broader adoption and impact of the CH paradigm and a prerequisite for research advancements in the CH field. However, such educational activities are not widely developed [11], serving as motivation for this study that focuses on identification and understanding of barriers and challenges in CH IDE. This study relied on surveyed opinions and views across multiple disciplines, attempting to provide some insights on the existing challenges and to indicate potential directions for implementation of CH education. It mainly focused on the inherent interdisciplinarity in the field, explored the interdisciplinary-related barriers, and offered solutions for overcoming interdisciplinary boundaries and designing CH curriculum. We consider this work as a first step in investigating pathways to successful CH education. Although this work might be limited in terms of number of organizations involved in the workshops used to define the themes and challenges of interdisciplinary education, the number of identified disciplines mentioned in the obtained themes and challenges reassures the quality of achieved results. A wider multicountry mapping of needs and ideas would further contribute in terms of context-related barriers and enablers as well as in the formation of multicultural CH educational networks. To create solid evidence in this area, the work of Car [53], which proposes a methodology for systematic reviews in digital health education, can be expanded in this direction, encompassing the interdisciplinary aspects of CH education. In addition, recent evidence that new digital education tools such as virtual reality can improve knowledge and skills of health professionals [54] indicates that the challenges of interdisciplinary CH educations could be further explored via virtual reality and similar innovative means. This work contributes useful inputs for CH curricula design with a focus on interdisciplinarity, both with regard to the alleviation of barriers and the design of interaction between different stakeholders in CH. --- Authors' Contributions IC and TC designed the study. IC conducted the workshops at UCD, with the support of TC, and principally edited the manuscript. NM contributed toward the consolidation of results, synthesis of concepts, and editing of the manuscript. VT and TLT contributed with ideas for the CH education paper, literature enhancement, and editing of the manuscript. TC coordinated the whole study, conducted the interviews at AUTH with the support of IC, and edited the manuscript. --- Conflicts of Interest None declared. --- Multimedia Appendix 1 Interview schedule. [PDF File , 45 KB-Multimedia Appendix 1] 13.11.2019. 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 the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included. --- Multimedia Appendix 2

Background: Connected health (CH) technologies have resulted in a paradigm shift, moving health care steadily toward a more patient-centered delivery approach. CH requires a broad range of disciplinary expertise from across the spectrum to work in a cohesive and productive way. Building this interdisciplinary relationship at an earlier stage of career development may nurture and accelerate the CH developments and innovations required for future health care. Objective: This study aimed to explore the perceptions of interdisciplinary CH researchers regarding the design and delivery of an interdisciplinary education (IDE) module for disciplines currently engaged in CH research (engineers, computer scientists, health care practitioners, and policy makers). This study also investigated whether this module should be delivered as a taught component of an undergraduate, master's, or doctoral program to facilitate the development of interdisciplinary learning. Methods: A qualitative, cross-institutional, multistage research approach was adopted, which involved a background study of fundamental concepts, individual interviews with CH researchers in Greece (n=9), and two structured group feedback sessions with CH researchers in Ireland (n=10/16). Thematic analysis was used to identify the themes emerging from the interviews and structured group feedback sessions. Results: A total of two sets of findings emerged from the data. In the first instance, challenges to interdisciplinary work were identified, including communication challenges, divergent awareness of state-of-the-art CH technologies across disciplines, and cultural resistance to interdisciplinarity. The second set of findings were related to the design for interdisciplinarity. In this regard, the need to link research and education with real-world practice emerged as a key design concern. Positioning within the program context was also considered to be important with a need to balance early intervention to embed integration with later repeat interventions that maximize opportunities to share skills and experiences.The authors raise and address challenges to interdisciplinary program design for CH based on an abductive approach combining interdisciplinary and interprofessional education literature and the collection of qualitative data. This recipe approach for interdisciplinary design offers guidelines for policy makers, educators, and innovators in the CH space. Gaining insight from CH researchers regarding the development of an IDE module has offered the designers a novel insight regarding the curriculum, timing, delivery, and potential challenges that may be encountered.

Introduction Humanity faces a daunting challenge in the 21st century: to improve human wellbeing and reduce economic inequality globally whilst remaining within ecological 'planetary boundaries'. The past two centuries have seen dramatic changes in how humans interact both with each other and with the Earth's ecosystems that are relied upon for survival and prosperity. In essence, this increase in what we have come to describe as human wellbeing has largely been achieved through the technological progress spearheaded by the industrial revolution, which coincided with the large-scale conversion of land to agriculture, the appropriation of natural resources and the settlement of burgeoning populations in urban areas. At the same time, progress around innovations in public health medicines and measures to reduce mortality and morbidity rates have also accelerated under the capitalist-industrialist paradigm. The extent and cumulative impact of the world's current development pathway now substantially affects the sustainability of ecosystems and potentially threatens human societies [1]. Under what has been termed the 'Great Acceleration', the impact of the human enterprise on the Earth system from the start of the industrial revolution onwards has been unprecedented [2]. The scale of human changes to the Earth have come to rival native ecological factors and have inadvertently forced us into a new planetary era-defined as the Anthropocene [3,4]. With this in mind, there is a growing recognition that dramatic socio-cultural, political and technological changes are required to transform human societies towards a 'Good Anthropocene' paradigm-a future that meets the deeply intertwined development and environmental challenges society faces, in a world profoundly shaped by human actions [5]. These fundamental shifts in human-environmental relationships are referred to as 'socialecological transformations' and aim to create opportunities for societal wellbeing today and in the future, while strengthening the Earth's life support systems [6]. Understanding how the Earth system and human society function as a complex adaptive system requires us to use different language, referring to emerging and navigating transformations over managing, steering, or controlling transitions [7]. The implications are potentially vast. Maintaining human development within planetary boundaries [1] while improving societal wellbeing will invariably require both disruptive innovations and systemic transformations that address the root causes of these issues in the dominant social norms, behaviours and practices [8]. At the same time it requires us to think more critically and with greater rigor about "What will such radical and systemic SETs to sustainability look like? How can research become re-aligned and co-developed by academic communities, civil society, policy and business so as to inform and inspire solutions to real-world problems?" Addressing these types of questions necessitates far greater experimentation and the development of deeper engagement with questions of sustainability, where cognitive and experiential diversity as well as a deliberate environment for knowledge exchange is crucial [9]. We draw our main insights from focusing on key trends and developments in two important interdisciplinary research strands that have come of age in transformations research-these are sustainability transitions and resilience approaches. We will leverage these two perspectives as examples of research approaches that are engaging with the issue of transformations to explore how a safe space could become a vehicle for inspiring new research ideas and collaborations. Studies on knowledge creation have emphasized how cognitive diversity-the extent to which differences in knowledge, beliefs, preferences and perspectives are held-is critical to the emergence of new knowledge whether it be amongst different disciplines or different sectors, such as academics and practitioners [10]. This is what we refer to as a form of "bridging" of topic areas to harness a new trans-paradigmatic way of knowledge production similar to that emphasized by transdisciplinarity, but that goes beyond an emphasis on methodologies that integrate multiple perspectives towards a more emergent co-production. Such an endeavour has to be societally relevant, impact orientated and go beyond merely a simple exercise of combining different conceptual perspectives. However, the interaction and integration process that facilitates this knowledge co-production requires communication that reflects open-mindedness norms, which not only encourage the expression of different views but also values and utilizes others' knowledge and ideas [11]. These norms are the driving principles behind a safe space. We further wish to highlight the critical need for engaging with the role of emerging economies in enacting social-ecological transformations, specifically the BRICS countries , in facilitating a safe space as thus far much of the work in the sustainability space has occurred in Western contexts, driven by Western research programmes. The paper structure is as follows: In the first part of the article we describe the contributions of resilience and transitions research to the understanding of sustainability transformations. We highlight particular project initiatives that have been developed within these research communities as well as explore some of the main differences in terms of epistemological and ontological starting points. We also describe challenges and opportunities for sustainability transformations research in emerging economies. In the second section of the article, we elaborate what we mean by a safe space and expand on a set of guiding principles that can guide and broaden multi-stakeholder learning and collaboration in the safe space. We further argue why deepening engagement with contexts of inequality is relevant so that the safe space becomes relevant for addressing real life problems across a broader set of stakeholders in both Northern and Southern settings. We conclude by providing a summary of key insights of the article as well as direct attention to potential areas of caution in the enactment of the proposed safe space. --- Emerging Perspectives on Sustainability Transformations --- Resilience Perspectives on Transformations For the past two decades, a growing group of resilience scholars have been studying transformations toward improved ecosystem stewardship and global sustainability [6,12]. Most of these studies have been carried out at local to national levels, but in light of the recent work in Earth system science and on planetary boundaries [13], the need for radical transformations in humanenvironmental interactions and feedbacks to reverse current trends of crossing critical thresholds and tipping points in the whole Earth system have also been discussed [14]. This literature underpins the need for social-ecological transformations , which are described as 'untried beginnings from which to evolve a fundamentally new way of living when existing ecological, economic and social conditions make the current system untenable' [6]. Resilience scholars note the important aspect of transformability, understood as the capacity to cross thresholds into new development trajectories, in smaller social-ecological systems, so as to maintain the resilience of the Earth system as a whole [15]. The capacity of a system to transform at smaller scales draws on resilience from multiple scales, making use of crises as windows of opportunity for novelty and innovation, and recombining sources of experience and knowledge to navigate these social-ecological transitions [15]. In their work, resilience scholars draw on a range of community-led solutions, business innovations and governance experiments that aim to foster largescale sustainability transformations, which they refer to as social-ecological innovations [16]. Examples of such innovations include clean energy financing mechanisms , Resilience Innovation Labs addressing community health issues, food sovereignty movements using agroecological farming practices , and more. This strand of resilience research is in part inspired from the work of the University of Waterloo's Institute for Social Innovation and Resilience. It is in this school of thought that the links between socio-ecological innovation and transformation have been put forward more explicitly [18][19][20][21]. Within this emerging research field particular attention is placed on 'processes' of social learning, innovation scaling-up that addresses systemic barriers and scaling-out to increase adoption, and the particular importance of human agency traced down to individuals and social groups within organisations [20]. Innovation in particular is understood to have a crucial role in enabling SETs since it provides leverage and opportunity for steering away from potentially critical thresholds in the earth system and opens up new trajectories of sustainability [16,22]. --- Transitions: An Experimentation Lens for Enabling Transformations Transition governance has been developed as an approach to create and understand the conditions and context under which co-evolutionary processes are more likely to lead to sustainable outcomes. Almost in parallel to the development of transformations scholarship under resilience thinking, transition management and socio-technological transitions studies have been pioneered by European researchers [23][24][25][26][27]. A growing community of science, technology and society scholars characterise sustainability transitions as non-linear, co-evolutionary processes of structural systemic change between technologies , institutions, and networks of producers, consumers, intermediaries, and regulators [28]. Transition governance is developed as an approach to create conditions and context under which such co-evolutionary processes are more likely to lead to sustainable outcomes and might be triggered and supported [29]. In transition studies and especially in transition management, experimentation has been conceptualized and empirically proven to be a driving force for supporting and enabling larger and long-term transformations. In all the different schools of transition studies, experimentation has been examined: how historically it creates co-evolving transformation pathways [26], how alternative practices can be nurtured in experimental settings to be shielded from competitive dominant regimes [29,30], and how experiments can be formulated and realized as stepping stones for the more radical transformative agendas' actualisation [31][32][33][34][35][36]. A series of productive research collaborations are now underway within Europe that signify a coming of age of a new type of systemic integrated approach to researching global sustainability challenges initiative, the Accelerating and Rescaling Transitions to Sustainability initiative and the Highend climate change and integrative solutions programme). All these research programmes have moved beyond the technological lens of previous transitions work to bring new theoretical and empirical grounds to the sustainability transitions field by addressing issues like the politics of sustainability transitions, multi-actor governance and cross-scale dynamics of sustainability transitions from an agency perspective. This turn to a relational approach, see [37] to examine contemporary sustainability transitions and their dynamics comes from a need to understand politics and multi-level governance patterns and possibilities better; characteristics of sustainability transitions have so far only been researched to a limited extent [38][39][40][41]. --- Grey Areas of Epistemological and Ontological Nature Ontological and epistemological differences can have a profound effect on the framing and boundary-setting of sustainability paradigms [42]. Arguably epistemological and ontological differences can also be a source of tension and dispute. For example, transitions thinkers have often criticised resilience thinkers for not adequately taking into account issues of power and inequality [25]. The role of power is more pronounced in innovation and transition management to analyze both the structural power of regimes to sustain their position as well as innovative power to transform regimes [43,44]. Equally, the resilience school of thought has raised some concerns about transitions not taking into account environmental limits. This area of divergence perhaps also marks an area of future opportunity where stronger links between the two approaches become both possible and desirable. According to Olsson et al. [7], one of the important challenges for enacting sustainability transformations is to focus more on emerging technologies and social innovations, and the exploration of the features of institutional settings that allow for novelty, fail-safe experimentation, and continuous learning, but also equally account for innovations that may carry social-ecological risk [45]. For example, the NeWater project, has combined insights from resilience thinking and transition management to understand large-scale water management transitions [35]. Insights have included a wide range of focal areas, including adaptive management [46], policy change [47], the role of pilot projects [48], experimentation [49] and strategy [50]. As we look to scale-up certain test cases of sustainability innovations, a need for an evidence base of which innovations can be successful at scale and have the most impact is needed and this includes a need to look holistically at the enabling environment for these innovations to thrive. The fields of development economics and impact evaluation have produced various rigorous experimental and non-experimental methods that aggregate quantitative and qualitative data to determine causal inference of a specific innovation and its impact on the socialecological system [51]. In order to provide real-life impact, it will be necessary to draw learning from these areas into the resilience and transitions approaches so as to be able to provide a language of rigour in fields that are often quite nebulous. Olsson et al. [7] argue that an integration of the social-ecological and socio-technological systems' perspectives could help in addressing human-environmental interactions more broadly and that further analysis would benefit from closer collaboration between the fields of resilience and transition management . Nevertheless, as we later elaborate, this necessitates a safe space that would allow for reflexive, transparent and inclusive deliberation on current tensions and grey areas as well as to allow researchers to draw from other relevant studies to fill in intellectual gaps. For example, there is still a form of unresolved tension of an ontological nature despite the obvious convergence of the conceptual paradigms in their interpretation of transformation. Where social-ecological systems research is concerned with maintaining a particular flow of services in a given context to achieve a desired outcome, and technology is seen to act on this process, the transitions approach puts technology and social practices at the centre of the analysis, explicitly assuming the existence of interdependent heterogeneous power relationships [42]. However, both appreciate that building transformative capacity and enabling shifts to new trajectories requires systemic experimentation and innovation [7]. The intellectual and experimental potential of combining these two perspectives into a new, emergent way of seeing how sustainability transformations occur could provide a powerful tool for addressing pressing environment and development challenges from the local to the global level. --- Emerging Economies: Critiques and Challenges Many of the largest social-ecological changes are currently happening in emerging economies, which also contain some of the fastest growing populations on the planet with a relatively young age on average. They therefore have a major role to play in addressing global challenges that will also usher in a new 21st century workforce for a meaningful and equitable approach to sustainable development. However, without a good understanding of how these countries are tackling complex sustainability issues across different sectoral domains, it is difficult to imagine how the future will play out globally as well as what pathways to a sustainable future or Good Anthropocene are possible. Until now, this relatively recent topic of social-ecological transformations has largely been formulated and debated by Northern academics working in European and North American universities, including the NeWater project mentioned earlier . Critical theoretical questions and applied experiments of SETs for emerging economies undergoing rapid social-ecological change are still relatively limited with most work in this area having a development lens, such as the pivotal research coming out of the STEPS Centre and Institute for Development Studies at the University of Sussex, E.g. [54]. An important challenge for emerging economies is to identify what are the enabling conditions required for social-ecological innovations to contribute to systemic social-ecological transformations in these countries. How do these enabling conditions vary across different world regions and social contexts? And how can research and innovation be leveraged through Global South-North as well as South-South collaboration? New constellations of actors and social network configurations are influencing change and guiding processes of innovation and transformation in emerging economies in ways that are often beyond the reach of the state and can be surprising. For example through new kinds of development assistance paradigms such as the use of mobile money platforms to perform cash transfers, or locally based development programmes that are managed directly by citizens [55]. Such initiatives tend to be mobilised by groups of actors that can potentially catalyse and enhance success of SETs in emerging economies through both their collective and individual roles as change agents with capacity to bring together different stakeholders, changing existing power structures or re-directing the flow of resources [20,55]. Countries such as the BRICS nations are currently undergoing processes of democratisation and decentralisation that are creating avenues for innovation both within [56] and outside traditional areas of state influence in particular through the growing relevance of civil society organisations [57]. Ignoring the dynamism and potential of these processes in the global South would severely inhibit the sustainability transformations agenda and yet very little research is seen from this angle. --- Emerging Economies: Initiatives that Address Sustainability Transformations The understanding of social innovations and multi-scale public-private partnerships and investments that support the scalability of high impact sustainability solutions is particularly relevant in emerging country contexts. Including impact investing, crowd-funding, legislative practices and accelerators, incubators and "change-lab" training programs, which borrow from the tech-oriented business sector [58][59][60]. But a critical gap still exists between private sector activity and academic research into the efficacy and impact of these initiatives and the role they might play in fundamentally changing humanenvironment interactions. These are challenges that are not insurmountable yet do require deeper engagement across emergent perspectives and new theories on transformations. They further necessitate inclusive dialogues and better emphasis on the role of interactive innovation spaces within which stakeholders can co-produce solutions together with transformation scholars, decision makers and private sector stakeholders [61]. There are a series of current initiatives that are relevant to sustainability transformations in emerging economies. Indian academics have been researching the ability of grassroots movements to develop social-ecological innovations for sustainable development, which is being led by Anil Gupta's Honeybee Network and others in the Inclusive Innovation arena [62][63][64]. This research documents how marginalized villages and urban slums have developed products and services to meet their unmet needs around food, water, energy, education and health systems. In Brazil, policy-focused social innovation initiatives and state support often amalgamate around the notion of a Solidarity Economy [65], which is a value driven conception of the economy. Other scholars have used the national systems of innovation concept to challenge Western interpretations of innovation for development [66], extending the language of innovation to include notions like 'scarcity-induced innovation' [67]. In South Africa, the work being done at the University of Cape Town on social innovation that arises from both the private and civil society sectors and that extends to the environmental arena [58] shows a maturing appreciation of new forms of innovation that can deal with the complex challenges facing the country. As an example, there is currently interesting work taking place in Cape Town, such as the R-Labs 'social revolution' that aims to empower poor communities through innovation and has spread from South Africa to 22 countries [68]. Many of these initiatives are examples of what has been defined as a Good Anthropocene, and part of scoping plausible "good" futures. The Future Earth fast-track initiative entitled 'Bright Spots: Seeds of a Good Anthropocene' project documenting positive experiments /projects/ideas is one such initiative . The critical aspect of these types of projects is that they 'open up' spaces for trans-and inter-disciplinary research that does not close down around specific theoretical approaches as is the case with most other comparative studies. Engaging in theoretical experimentation is difficult in the current academic environment and so it is of vital importance to add legitimacy to this type of research by creating a safe space within which these interactions can take place [69]. --- Guiding Principles for Safe Space Experimentation --- What is a Safe Space? A safe space concerns the interdisciplinary development of theories, models, instruments, strategies and impacts that build upon different bodies of knowledge and experience. We find that the research agenda on SETs for sustainability is challenging, but highly societally relevant and thus provides a point of attraction for different theoretical models and disciplines. To this point the notion of safe space has been initially proposed and further developed largely by German sociologist and philosopher Jürgen Habermas. He was one of the first scholars to articulate the notion of the safe space as part of his theory of communicative action. In his account, the safe space, relates to how in the public sphere it is necessary to create conditions for diverse citizens to freely express their views, opinions and beliefs [70]. The idea of a safe space has further gained relevance as part of debates on re-positioning the role of science in society [71] as well as fostering transdisciplinary processes of engagement in sustainability research [72][73][74]. It is in particular in these debates to which we have turned in order to gain deeper insights around its conceptual utility. --- Safe Space Principles for Real World Problem-Solving The safe space lends itself to different interpretations partly depending on the disciplinary domain of use, such as for example sociology, philosophy of science and knowledge as well as the particular problem that a safe space is envisaged to address. In Table 2 we provide a summary account of a range of perspectives that inform our own account of the safe space. Habermas' account of a safe space is as an emancipatory space in knowledge co-production where a variety of social actors can freely express different views; this is a particularly relevant precondition for other forms of safe space interaction to become subsequently realised. Foremost, we have argued that fostering greater debate between theoretical models such as the ones described under the broad categories of resilience and transitions are relevant to safe space interaction. In these approaches, safe space has also the function of a nurturing space for diverse experimental ideas, transformative innovations and adaptive piloting to be shielded and grow. A safe space is overall a space to freely think without the weight of a disciplinary history or institutional commitments to a given approach that may constrain dialogue, co-create and prepare innovative ideas and interventions. Furthermore, this open space empowers those that have previously not inhabited the sustainability transformations space, especially researchers and practitioners from emerging economies, to be able to engage with, learn from and share their experience with others. That is why, in a safe space we believe that there is a need to foster reflexivity particularly about how sustainability problems are defined, who is doing the defining, and what are ultimately the main prescriptions for action [42]. Reflexivity is also an underlying principle to ensure that those that operate in the safe space can overcome the innovators' blindness . If this is achieved early on in the process, there will be higher chances for the safe space to succeed as both a platform for knowledge co-production and for fostering transformative learning as well as for invigorating how to democratize inclusive innovation for sustainability [11,75]. Finally we align with Klay et al. [76] who propose that safe space formation is likely to proceed in different phases. Starting from a strategically managed safe space for multi-stakeholder dialogue that can gain momentum to become gradually a broader thought collective capable of initiating paradigm transformation. Transformative learning: Enable learning on how to alter thinking, practicing and organising towards new practice sets and paradigms that can better connect individual action with social change and broader slow and fast social dynamics. Lange 2004 [75] Nurturing innovations: Niche creation and management for harnessing ideas and capabilities for the transformation of science Kläy et al. 2014 [76] These principles are in part informed by our own review of how the safe space is articulated in other disciplines and problem domains and in part by our own experience as researchers working at the interface of transitions and resilience research in both North and South contexts. Therefore the principles are particularly tailored to trigger and accelerate dialogues and interactions across these two perspectives specifically. While of course recognising that accelerating transformations is not a transitions or resilience task per se, and that it also involves insights and learning from other disciplines and practice orientated learning environments. Finally, we aim to remain critical and further reflect on which type of epistemological pathways we can envision from the 'safe space' perspective we have outlined in this section. --- Deepening Engagement with Contexts of Inequality and Exclusion Current debates and scholarship on transformations for sustainability still miss substantive insights on the complex interactions of both formal and informal interventions within contexts of inequality, poverty and social discontent. In order to move forward with a sustainability agenda, the safe space can be envisaged as a platform to provide direction on how to confront directly the complexities of inclusion and exclusion and to address current power asymmetries when co-designing transformational pathways. Specific issues of culture, class-based discrimination and national identity formation may have a major role to play in the formulation of sustainable transformations. Who decides to initiate transformations? Can transformations be carried out in a deliberative, participatory manner that is both ethical and sustainable? How can power, politics, and interests present barriers, or pathways, to transformation? These are questions raised by O'Brien [8] that have received only limited attention in existing transformations scholarship, but are particularly relevant in developing country contexts not least because of growing concern about inequality along various indicators [78][79][80][81]. The emergence of the Digital Divide is a relevant case study. In trying to expand market accessibility to impoverished and isolated communities, Mobile Network Operators have extended digital connectivity to many remote areas [82]. However, instead of opening up the information economy to all within reach, the majority of usage is by wealthier and privileged populations due to cultural, language, literacy and financial barriers as well as limited access to information and communication technologies . These populations then use these new information and social network resources to further their own prosperity and exacerbate existing social inequalities, thus developing a Digital Divide. Recent work focusing on new technologies for information generation in the environmental management field, identifies significant scope and potential for making science and data more transparent and accessible to citizens while new technologies can also serve as platforms for facilitating deep multi-actor collaboration and learning [83]. Such examples of power dynamics, often around gender, have been raised mainly by political economy researchers who have critiqued resilience thinking as being an insufficient means of engaging in the sustainability debate in developing country contexts [25,84]. Researchers working on agricultural adaptation to climate change in Tanzania, have proposed a middle-ground, arguing for a combinations of 'resilience thinking', 'political ecology', and environmental anthropology as a way of embedding analysis of power struggles and cultural norms in the context of the overall socioecological system [85]. However, it is not simply a theoretical argument, but fundamental methodological challenges arise in bringing these approaches together, as well as difficulties in how findings can be applied to contexts where practitioners are not experienced with these theoretical approaches [86]. The safe space advocated for in this paper would provide a legitimate home for experimentation between these different theoretical approaches, with the ultimate aim of developing a coherent set of approaches that would be relevant to the specific challenges in developing world contexts. --- Discussion and Conclusions In this article we have drawn on the notion of a safe space to elucidate possibilities for multi-stakeholder learning and collaboration. Specifically, we have drawn the main insights from two important inter-disciplinary research strands that have come of age in understanding transformations to sustainability: sustainability transitions and resilience. We have illustrated the potential for synergy that can emerge by focusing on greater collaboration between these topic areas, but other disciplinary perspectives, despite not explicitly dealing with transformations, can play an important role in the future design of safe spaces. A particularly important strength of resilience and transitions, is that they can support a better understanding of how ideas and innovations spread in society, placing particular emphasis on those ideas and innovations that can help tackle complex real-world problems from economic development to healthcare [6,22]. We find that there is tremendous scope for enhancing a more collaborative research environment that can bridge impact-oriented action researchers and reflexive practitioners who are currently engaged in facilitating SETs in different contexts, in the global North and South. It should be noted that there is a need to recognize the subjectivity that researchers bring along with their epistemological frameworks and scholarships, and to aid a deep reflection on the way these frameworks are applied or enforced through empirical research in the South. This paper argues for a more open and transparent way of doing research and co-producing solutions where assumptions and research hypotheses remain open to change and open to dialogue not only between academics but also between research practitioners and stakeholders from vastly different backgrounds. Without comparative research being seen as a treatment to this problem, more careful research design that will also enable researchers to break free from epistemological subjectivities and move towards research experimentation will further the 'safe space' to be embedded in practice globally. The safe space is essentially a collaborative environment and therefore more than just a 'marriage' of resilience and transitions research. It is more fundamentally about recognising the opportunities associated with pluralising knowledge systems [87] as a stepping stone towards enacting SETs. We have further argued that perhaps the most exciting arena for the safe space to flourish is in emerging economies where the issue of transformation is likely to be more fundamentally not only about the deliberation and enactment of 'sustainable' transformations, but also equally about 'just' transformations based on greater community understanding, equality and justice [88]. Acknowledging the opportunity context that the need for systemic transformations offer, while also allowing for reflexivity and transparency in collective processes of imagining and enacting sustainability pathways, is a key aspect of the 'safe space' approach advocated in this paper. This is why the paradoxes, tensions and 'grey areas' that are shaping debates on transformative change and how these are enacted differently across academia, civil society, public and private settings have to be made explicit in navigating the safe space-without them there would be no need to experiment beyond conventional approaches. We are also aware that there is a danger that the safe space could lead to consensus frames that are depoliticized and lack the necessary substance to allow for concrete action and provide direction for SETs [89]. It is essential to remain attentive to the issue of disparity, which is the manner and degree in which categories will tend to differ from one another [90,91]. Engaging with these disparities in a constructive manner will critically depend on the extent to which the safe space can allow for analytical communities to emerge that can balance between pluralism and concreteness in an effective and durable way [90]. There will always be aspects of each knowledge system that cannot be fully translated into each other, partly because of the different approaches that exist [92,93] and this is actually positive for the safe space because it is not designed to be a replacement for existing approaches. What we have set out in this paper is not a replacement viewpoint, but an alternative means through which to navigate the planet's need to transform both sustainably and justly. --- --- Conflicts of Interest The authors declare no conflict of interest.

The need for developing socially just living conditions for the world's growing population whilst keeping human societies within a 'safe operating space' has become a modern imperative. This requires transformative changes in the dominant social norms, behaviours, governance and management regimes that guide human responses in areas such as urban ecology, public health, resource security (e.g., food, water, energy access), economic development and biodiversity conservation. However, such systemic transformations necessitate experimentation in public arenas of exchange and a deepening of processes that can widen multi-stakeholder learning. We argue that there is an emergent potential in bridging the sustainability transitions and resilience approaches to create new scientific capacity that can support large-scale social-ecological transformations (SETs) to sustainability globally, not just in the West. In this article, we elucidate a set of guiding principles for the design of a 'safe space' to encourage stronger interactions between these

INTRODUCTION The coronavirus disease 2019 pandemic has rapidly changed countries' lifestyles. Numerous concerns about the long-term consequences of COVID-19 on the public health, economy, and sociality of the global human population have been sharply highlighted . Italy was the first European country to experience the unpredictable consequences of the pandemic . Between March 1 and April 30, 2020, the average number of daily deaths recorded in Italy was 2,564. The majority of deaths occurred in the northern region, that is, Lombardy. To limit the rapid spread of the virus, a quarantine period was induced in Italy on March 9 . Despite limiting the spread of infectious diseases, the state of quarantine may lead to the social isolation of families and individuals, causing or exacerbating psychological distress among the population . COVID-19, like other pandemic respiratory outbreaks , may be extremely pervasive and unforeseeable and may have a significant negative impact on mental health . Among studies on early behavioral changes in adults during COVID-19 quarantine, protective factors against psychological distress seem include older age, male gender, and physical health condition . Moreover, it has been discussed that the confinement condition can lead to forced inactivity and increase in sedentary behavior, which are known to expose to increased risk for psycho-physical adverse conditions such as premature aging, obesity, cardiovascular vulnerability, muscle atrophy and bone loss but also anxiety and depressive symptoms . Leading the quarantine to this change of habits, the importance of movement during the forced rest period of quarantine in the entire populations as a non-pharmacological and preventive treatment for the psychophysical well-being is very relevant . A few studies have recently demonstrated the positive impact of home-based physical activity on adults in Italy . Moreover, sleeping regularly, eating healthy reducing the boredom and improve the communication by talking with friends and family members by either phone or socials have been considered good preventive coping strategy to mitigate consequences of quarantine . The World Health Organization, further suggested to minimize the exposure to news about the topic . The focus so far has been on the adult population, shedding light on the psychological impact among high-risk categories, such as healthcare and public workers . However, less attention has been given to the effects of this pandemic on children and adolescents . Our institute, the Gaslini Children's Hospital, created the "Families and Children cope with COVID-19" project during the early stages of the lockdown in Italy in early March. The purpose of this project was to support families and children during the critical phase of confinement. This was conducted through a dedicated anonymous phone and mail service that was managed by specialists in children and adolescents' psychopathology and trauma. Furthermore, the project also aimed to conduct an exploratory overview of behaviors and coping strategies during early phases of COVID-19 related quarantine among Italian families. The Local Ethics committee approved this study, according with the Declaration of Helsinki. The participating subjects provided online informed consent to collect data anonymously. --- MATERIALS AND METHODS The questionnaire was officially released on the institutional website of the Gaslini Children's Hospital and disseminated through institutional and private social media, including Facebook, Instagram, WhatsApp, and Telegram. The online modality was chosen to respect social restrictions and confinement regulations. A temporal window of 14 days was considered appropriate for screening stress-related disturbances in adults and stress-related behavioral changes in children . Voluntary participation was stimulated through the network in a critical phase of the epidemic to collect data from a large and motivated sample. The inclusion criterion to participate in the survey was being of legal age, that is, over 18 years. Post-hoc analysis was focused on adults with children under 18 years, specifically those under 6 years and those between 6 and 18 years. The division in these two age groups follows criteria of American Psychiatry Association, described in the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, for correctly identifying behavioral dangerous changes in the context of life-threatening events or major life-stressors . These criteria were also adopted in other investigations on this topic . The Families and Children Cope With COVID-19 Questionnaire The Face-COVID-19 Questionnaire comprises 73 items. The focus of the first section is on adults: their pre-existing psychological fragilities, stress-related disturbances, and coping strategies are assessed. The second section is a parent-proxy report asking parents about their children and their behavioral changes. Furthermore, three questions examine a sense of loneliness, hopelessness, and a request for expert psychological aid. Geographical and demographic data are also collected. To address all socioeconomic categories, medical, and psychological terminology was avoided and simple and common terminology was used. The complete questionnaire can be found in Appendix 1. To afford an enhanced understanding of the data that were generated from the survey and to simplify them, a few referral scores were created . --- Effective COVID-19 Threats: The COVIDThreat Score A score derived from COVID-19 was attributed to each respondent who completed the survey by considering their answers to questions about family members' and/or close friends' involvement in the pandemic, including testing positive, hospitalization and/or death, and chronic diseases with specific weekly treatments. The COVIDThreat score ranged from 0 to 5, with higher scores indicating more severe conditions. --- Pre-existence of Psychological Weaknesses in Adults: The PsW Score Pre-existing PsWs from before the quarantine were assessed in questions 18, 19, and 20. The respondents were required to evaluate their pre-existing anxiety, depression, and sleep problems on a 4-point scale, ranging from 0 to 3. --- Sleep Habits During the Early Phases of the Quarantine in Adults: The SleepScore This was a sleep-difficulties score calculated in the early phase of the outbreak, ranging from 0 to 6, determined by assessing questions 25-30. --- Substance Use by Adults During the Early Phases of the Quarantine: The SubUse Score Substance use in larger quantities during the quarantine than before it or starting to use one or more of the substances because of the restrictive rules of confinement was explored in questions 48-51. The SubUse score ranges from 0 to 3. --- Symptoms Possibly Related to the COVID-19 Outbreak in Adults: The COVIDStress Score To assess stress due to COVID-19, we developed a COVIDStress score that ranged from 0 to 8, with higher scores indicating more severe impairment. Questions 24,38,39,41,46,71,72, and 73 that investigated difficulties in concentrating; exacerbations of known chronic diseases such as allergic rhinitis, asthma, atopic dermatitis, itching, gastroesophageal reflux, constipation, diarrhea, and migraines; inexplicable physical sensations; fear of contamination; irritability; sense of loneliness; need for psychological help; and sense of hopelessness were employed to obtain the COVIDStress score. --- Coping Strategies of Adults: The CopingScore Coping strategies, which are assessed in items 36, 37, and 44, comprise time spent engaged in sports, hobbies, and/or social interactions to obtain the CopingScore. As coping strategies are considered possible protective factors, the score ranges from 0 to -3. --- Children's and Adolescents' Behavioral Changes During Quarantine Behavioral changes of children are assessed in two age groups: <6 years and 6-18 years. The score is determined by summing the number of behavioral changes indicated by parents in questions 53 and 63, with a comprehensive score from 0 to 13 and from 0 to 9 in the respective age groups. Higher scores indicate more severe impairment. --- Statistical Analysis Statistical analyses were performed by employing SPSS Statistics software, v23 . Exploratory statistical analysis was performed, taking into consideration the non-probability nature of the sample, based on unrestricted, self-selected survey . In order to estimate and compare expected values for different categorical and continuous variables and their association, the multiple comparison problem was considered, and the statistical significance threshold was set at a p-value of 0.001. Target sample size was estimated for the different parameters at the desired level of significance and reasonably low effect size and a sample size > 2,500 was considered adequate . Categorical variables are represented either as numbers and percentages in brackets or as medians with interquartile ranges. Continuous variables are listed with means and standard deviations. The Shapiro-Wilk test was performed to evaluate the distribution of the variables. The chi-square test was employed to assess the association between categorical variables. Continuous variables were compared between groups by using unpaired t-test. Spearman's correlation coefficients were used to determine the relationships between the scores representing different sets of behavioral disorders in parents and children. Linear regression analysis was performed to investigate the reciprocal influences on the final result of psychic changes related to COVID-19 of the following specific categories: age, pre-existing PsWs, and presence of dependent children and/or of individuals older than 65 years of age. Cronbach's alpha analysis was used to verify the validity and reliability of the questionnaire. For the validity analyses we considered questions assessing the malaise of the respondents and divided them in 3 sets: those related to the adults' condition of discomfort and stress ; those related to the discomfort of children aged under 6 years; those related to the discomfort of children aged 6-18 years. We decided to not include the SubUse score and CopingScore questions as substance abuse and coping strategies can be considered as reaction to an adverse event and not only a feeling or a malaise . --- RESULTS The questionnaire was completed by 6,871 respondents. Individual responses were then checked within the validity range and cross-checking was done to verify the consistency of responses, and therefore 71 questionnaires were excluded from the analyses. All the variables had a skewed distribution. The geographical distribution and demographic features of the sample are presented in Figure 1 and Supplementary Table 1. Cronbach's alfa for questions regarding adults' malaise resulted 0.804. The ones regarding consistency of questions regarding behavioral changes in children aged under 6 years and over 6 years of age were, respectively 0.654 and 0.667. --- Effective COVIDThreat On average, the respondents' score for COVIDThreat was 0.52 ± 0.77. The average score of caregivers and non-caregivers with people aged over 65 years among the households was significantly higher compared to the ones without . Also, caregivers with children with age <6 years had a higher COVIDThreat scores compared to caregivers with children with age 6-18 years . --- Pre-existence of Psychological Weaknesses in Adults Various grades of pre-existing PsWs were recognizable in 62.5% of the sample, with a mean PsW of 1.35 ± 1.26. Caregivers showed lower PsW scores compared to noncaregivers respondents . Higher PsW scores were observed among caregivers with at least one person aged over 65 years of age among households . --- Sleep Habits During the Early Phases of the COVID-19 Quarantine in Adults The average SleepScore of the sample was 2.57 ± 1.38. Caregivers, especially those who cared for children under the age of 6 years, had higher scores . Of interest, among caregivers, presence of people aged over 65 years of age was associated to higher Sleepscores . --- Substance Use by Adults During the Early Phases of the Quarantine More smoking and/or use of other substances during quarantine were reported by 18.2% of the whole sample, with no differences among caregivers and non-caregivers. Both groups had similar SubUse scores . --- Symptoms Possibly Related to the COVID-19 Outbreak in Adults The majority of the respondents, specifically 95.6% of the entire sample, suffered stress related to the COVID-19 outbreak. The sample's mean COVIDStress score was 3.87 ± 1.81. Caregivers had higher COVIDStress Score compared to the non-caergivers , with parents of children aged under 6 years of age scoring worse than the ones of children and adolescents . --- Coping Strategies of Adults Coping strategies were employed by 76.4% of the whole sample. Caregivers employed less frequently coping strategies than non-caregivers , with poorer CopingScores . --- Impact of COVID-19 on Families in Italy An examination of the age groups revealed that older respondents were less likely to suffer from pre-existing PsWs and COVIDStress. However, those in their late twenties and in their sixties had a higher SleepScore . Spearman's correlation coefficient revealed that the respondents' COVIDStress correlated with PsW , COVIDThreat , SubUse , and SleepScore . The sample's COVIDThreat correlated with the subjective sensation related to difficulties in falling asleep and restorative sleep, expressed on Likert scales . The results of linear regression of the COVIDStress score on the PsW score, age of the respondents, dependent children, and respondents with people aged over 65 years among households is displayed in Table 2. All the factors had a significant effect on COVIDStress. --- Impact of COVID-19 on Children and Adolescents Behavioral changes in children were reported in 64.3 and 72.5% of the <6 years group and 6-18 years group, respectively. The average scores of both groups were 1.21 ± 1.39 and 2.39 ± 1.83, respectively . Disorders that were frequently reported in the <6 years group included increased irritability , sleep disorders, which constituted difficulties in falling asleep and night awakenings , and stress symptoms, such as restlessness and separation anxiety . In the 6-18 years group, the main behavioral changes concerned somatic aspects, such as short breath as well as sleep problems, which comprised difficulties in falling asleep and waking up . Behavioral changes in both age groups were strongly associated with the degree of parental discomfort following the COVID-19 outbreak and also with pre-existing PsWs . Fewer behavioral changes in the children were associated with their caregivers' put in act of coping strategies in the <6 years group but not in the 6-18 years group . --- DISCUSSION Our results revealed that the COVID-19 pandemic outbreak affected people living in Italy early and dramatically in terms of unfavorable behavioral changes. The majority of the adult respondents were somewhat affected in face of the direct experience of COVID-19 . The latter was particularly prevalent among families with younger dependent children and among respondents with pre-existing PsWs. Moreover, our findings also highlighted the negative impact of the COVID-19 pandemic outbreak on children. Behavioral changes related to COVID-19 were found in almost two-thirds of the sample. A strong correlation was also revealed between caregivers' discomfort due to COVID-19 and their children's malaise. COVID-19 has altered countries' health policies and lifestyles rapidly. Furthermore, the pandemic has had a severe impact on the general population, especially on those in high-risk categories . Although children appeared to have been less affected than adults from a medical perspective , their well-being has been at high risk: first, they faced the possibility of losing or being separated from their parents; second, they suffered a lack of social interactions, which was due to the closure of schools and kindergartens; third, family incomes may have been reduced; and fourth, their risk to the exposure of direct and indirect domestic violence may have been exacerbated , with a major risk for child neglect and abuse . The role of families has been highlighted as either a protective or aggravating factor during pandemics . However, the latter has not been examined adequately in scientific reports on the COVID-19 outbreak . A parent-proxy survey conducted in China regarding children's discomforts during the second week of the COVID-19 quarantine revealed that children displayed high degrees of irritability. While children <6 years of age tended to manifest the fear of losing their caregivers, inattention was the most common manifestation in the 6-18 years group. They concluded that parents have a fundamental role in recognizing and managing their children's negative emotions timeously. However, relationships between children's and caregivers' well-being were not analyzed . The primary aim of our study was to investigate such a possible link. Most respondents were women in their early forties. This concurs with other surveys conducted on the psychological impact of the COVID-19 outbreak in Italy . This could be linked to the fact that women 30-50 years of age tend to use social media more, including Facebook and WhatsApp, through which the survey was disseminated. Furthermore, mothers were more involved in the stress related to the quarantine conditions, especially in relation to children younger than 6 years due to work and childcare issues . The adult respondents reported mild to moderate levels of COVIDStress on average, even though there was a wide range among the sample. Our results are similar to those of Wang et al. who conducted research at the start of the Chinese lockdown. Stress related to COVID-19 correlated significantly with pre-existing PsWs, which were present in more than half of the respondents. This concurs with Moccia et al. who revealed the high impact of the COVID-19 pandemic on individuals with PsWs, especially among those who are cyclothymic, depressive-anxious, and/or suffer insecure attachment. Furthermore, we found a greater state of malaise among respondents who had dependent children in the <6 years group. Moreover, they suffered higher discomfort related to COVID-19 , sleep problems related to COVID-19 , and fewer coping skills , thus revealing high levels of distress in this group. Children and adolescents appeared to be less affected by the COVID-19 outbreak than their parents, even though they experienced considerable discomfort. A recent review concerning the effects of COVID-19 related quarantine on mental health of children highlighted that young children have dealt with higher stress, showing higher levels of clinginess, sleep disturbances, nightmares, poor appetite, inattentiveness, and significant separation problems . More in detail, in a survey involving children and pre-adolescents in Hubei, Xie et al. revealed that 22.6 and 18.9% of the participants suffered depressive and anxiety symptoms, respectively, a month after the start of the Chinese quarantine. These results were not associated with demographic characteristics . In our study adolescents seem less affected than younger children category. Buzzi et al. revealed that 65.7% of teenagers were moderately-severely worried about the COVID-19 pandemic but less than their parents . Oosterhoff studied the psychosocial implications of the COVID-19 outbreak among adolescents who, even when engaged in preventing the spread of the virus, needed to share experiences and deal with their experience of quarantine and social isolation . By the way, an early literature review has pointed out the insufferable nature of the COVID-19 related quarantine for some adolescents, who, depending also on their familiar socio-economic and mental condition , can experience a so-called social craving, with neural craving responses similar to neurofunctional circuits of hunger and more discreet symptoms than the youngsters, such as sleep disturbances, problems with peers, isolation, and depression . In this study, behavioral problems were present in 65 and 71% of children under and over the age of 6 years, respectively. Children under the age of 6 years frequently displayed increased irritability, sleep disorders, and anxiety problems . This is in accordance with Jiao et al. . Those with children over the age of 6 years experienced somatic complaints, such as the feeling of shortness of breath. Furthermore, they suffered significant alterations in sleep, particularly the inability to fall asleep as well as increased emotional instability, irritability, and changes in mood. The questionnaire had not been previously validated as it was developed to catch behaviors and changes associated with the emergency situation without the adoption of previously standardized scales. This may limit comparisons with other studies but enables the evaluation of pandemic-related features, with an approach similar to that adopted in previous studies . In order to evaluate the reliability of the questionnaire and Our study demonstrated a strong relationship between the level of severity of children's dysfunctional behavior and the degree of the circumstantial malaise of their parents. This correlation was significantly accentuated in the case of prior psychological problems in caregivers . When applied, coping strategies among caregivers have acted as protective factors among the children . The data need a diachronic perspective so as to be interpreted correctly. The generalizability of our findings may be limited, as this study analyzes a non-probability sample, and the survey was open to participation of interested people. This can bring about a bias in the sample composition and consequently in the estimation of parameters not directly ascribable to the general population. The large and varied sample could however reveal remarkable trends and show differences between subgroups and associations between variables. Moreover, although the online survey allowed respondents throughout the country to respond, the number of respondents who had children under the age of 6 years was not the same as the number with children over the age of 6 years. A potential bias of selection may have resulted from the fact that those who suffer the most are more inclined to complete questionnaires. The results may have differed if children and adolescents had also answered the questionnaire. However, to avoid asking potentially overly emotional questions to them , we decided not to include respondents under the age of 18 years. Moreover, although we presented the socio-demographic characteristics of the sample in the Supplementary Material at Supplementary Table 1, we did not explore these characteristics in the final analysis, even though the sample was large and varied for the distribution of age, social position, region and other characteristics. By the way, these characteristics were not considered also in other similar studies on this topic or on other pandemics-related quarantine effects . Another possible limitation is the fact that in our survey we did not investigate if the respondents had themselves get infected by COVID-19. Indeed, we did not want to make people expose too much on the topic that could have been discriminating . For the same reason we did add the option "I prefer not to answer" at all questions regarding the COVIDThreat score. Finally, to ensure anonymity of the data, it was not possible to conduct a follow-up. To the best of our knowledge, we are the first to investigate the early impact of the COVID-19 quarantine in Italy. The high number of responses to our questionnaire in a brief timeframe of 14 days highlights the population's high interest in the challenges of the pandemic. The timeframe of the survey allowed for the onset of stress symptoms . Furthermore, the double perspective of the caregivers on themselves and their children stressed the importance of the parental dyad, which, although fundamental for the well-being of children, has not been formally explored in previous studies . --- CONCLUSIONS In conclusion, with our study, although limited by sample selection biases and the avoidance of standardized previously published scales, we have been able to show early malaise among people living in Italy due to COVID-19 related quarantine. The discomfort was highly accentuated in people suffering from mental fragilities but also among participants to the survey without previous declared antecedents of psychological weaknesses but caregivers of children under 6 years of age. Moreover, the level of severity of children's dysfunctional behavior and the degree of the circumstantial malaise of their parents were strongly associated. Efforts related to children's welfare strategies and addressing higher psychosocial risk categories should be implemented in the following months to maintain children's and adolescents' mental health. --- DATA AVAILABILITY STATEMENT The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation. --- ETHICS STATEMENT The studies involving human participants were reviewed and approved by Comitato Etico Regione Liguria. The patients/participants provided their written informed consent to participate in this study. --- --- SUPPLEMENTARY MATERIAL The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpubh. 2021.608358/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. Copyright © 2021 Uccella, De Grandis, De Carli, D'Apruzzo, Siri, Preiti, Di Profio, Rebora, Cimellaro, Biolcati Rinaldi, Venturino, Petralia, Ramenghi and Nobili. This is an open-access article distributed under the terms of the Creative Commons Attribution License . The use, distribution or reproduction in other forums is permitted, provided the original author and the copyright owner are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

The COVID-19 pandemic has changed individuals' lifestyles to a great extent, particularly in Italy. Although many concerns about it have been highlighted, its impact on children and adolescents has scarcely been examined. The purpose of this study was to explore behavioral consequences and coping strategies related to the pandemic among families in Italy, by focusing on developmental ages from the caregivers' perspective, 3 weeks into quarantine. An exploratory cross-sectional online survey was conducted over 14 days. Google Forms was employed to conduct the survey. Demographic variables and pre-existing Psychological Weaknesses (PsW) were asked. Adults' sleep difficulties (SleepScore) and coping strategies during quarantine were assessed. Behavioral changes related to quarantine of both subjects completing the form (COVIDStress) and their children (when present) were questioned. Of the 6,871 respondents, we selected 6,800 valid questionnaires; 3,245 declared children aged under 18 years of age (caregivers). PsWs were recognizable in 64.9% among non-caregivers and in 61.5% of caregivers, with a mean PsW score of 1.42 ± 1.26 and 1.30 ± 1.25 over 3 points, respectively. The 95.5% of the non-caregivers and the 96.5% of caregivers presented behavioral changes with a mean COVIDStress of 3.85 ± 1.82 and 4.09 ± 1.79 over 8, respectively (p < 0.001). Sleep difficulties were present in the 61.6% of the non-caregivers and in the 64.4% of the caregivers (p < 0.001), who showed higher SleepScores (2.41 ± 1.26 against 2.57 ± 1.38 points over 6, p < 0.001). COVIDStress (and SleepScore) strongly correlated with PsW (p < 0.001). Caregivers observed behavioral changes in their children in the 64.3% of the <6 years old and in 72.5% of 6-18 years old. Caregivers' discomfort related to quarantine (COVIDStress, SleepScore) was strongly associated to behavioral changes in both age groups of <6 and 6-18 (p < 0.001). Presence of caregivers' coping strategies was less associated to behavioral changes in the <6 sample (p = 0.001) but not in the 6-18 (p = 0.06). The COVID-19 pandemic Uccella et al.Outbreak: Impact on Families has adversely impacted families in Italy with regard to behavioral changes, especially in high-risk categories with PsWs and caregivers, especially the ones with children aged <6 years. While coping strategies functioned as protective factors, a wide array of stress symptoms had implications for children's and adolescents' behaviors. It is recommended that public children welfare strategies be implemented, especially for higher-psychosocial-risk categories.

Introduction The global COVID-19 pandemic has had a huge impact on the world . Indeed, many countries around the world took unprecedented steps to prevent and contain spread of the virus. UNICEF for instance, reported that physical distancing, shutting down of nonessential businesses, and suspension of community and recreation services and programmes took place in most countries. In addition, most countries also closed schools and early childhood education and care settings, playgrounds, businesses, restaurants, and recreational centres. Globally, the numbers of children affected by school closures alone was staggering, ranging between 1.4 billion children and 1.6 billion children in 190 countries . Indeed, the United Nations noted that while children were not the face of the pandemic, they risked being among its biggest victims in terms of the potential profound effects on their wellbeing. Much research to date has necessarily focused on the medical and physical health impacts of the coronavirus on adults and children. While previous research offers some general insights into the likely psychological impact of the restrictions on children, the nature of previous research, and the scale, extent, and length of the COVID-19 crisis, make it difficult to draw specific conclusions about effects of the pandemic on young children. Many researchers have highlighted that the crisis and restrictions are likely to have negative psychological effects on children , adolescents , and parents. For example, a recent rapid review examining evidence relating to the impact of quarantine and social isolation on psychological well-being and mental health in children, found mainly negative effects. However, none of the papers included in the review focused on young children. Another rapid review highlighted the negative psychological impact of loneliness and social isolation on healthy children and adolescents. However, the majority of the papers in this review related to children aged over 10, with none including children aged under 5 years. Prime et al. note the high levels of anxiety and stress reported by families in Canada, and based on previous literature on adversity , maintain that the consequences of these experiences may be longstanding. The impact on children's well-being when faced with such adversity depends largely on family relationships . Given the unprecedented nature of the COVID-19 pandemic and widespread lockdown, it is important to gather empirical evidence relating to the potential psychological effects of the current crisis on very young children and their families. Published empirical research of the effects on families is just beginning to emerge . For example, Spinelli et al. reported findings from data gathered during lockdown in Italy from parents, and found that parental stress and perceptions of quarantine were associated with children's behavioural and emotional problems. Surveys by Save the Children of over 6000 children and parents in the US, Germany, Finland, Spain, and the UK also suggest that many children struggled with boredom and feelings of isolation. The aim of the current study was to examine the evidence relating to the socio-emotional effects of the pandemic, gathered during a period of lockdown in Ireland, and to consider the impact of the closure of schools and ECEC settings on young children. --- Socio-Emotional Development and Early Childhood Education and Care Although socio-emotional development is defined in different ways, in general, it refers to the process through which children develop the ability to initiate and maintain trusting relationships with adults and peers; to understand and express emotions in appropriate ways; and to become independent, explore and engage with the environment and make responsible decisions . In short, socio-emotional development is concerned with how children think, feel, and act. As noted by Berk et al. , "the early childhood years are a crucial time for the development of self-regulation -an array of complex mental capacities that includes impulse and emotion control, self-guidance of thought and behaviour, planning, self-reliance, and socially responsible behaviour" . Furthermore, Kostelnik et al. assert that children's social and emotional development affects their overall development and learning. Ashdown and Bernard associate socio-emotional development with five core competencies: self-awareness, social awareness, self-management, relationship skills, and responsible decision-making. Moreover, social and emotional skills include self-confidence, empathy, concentration, persistence, attentiveness, effective communication, and problem-solving . All of these skills enable children to interact positively with others, have a positive attitude toward school, and have increased academic performance . According to Domitrovich et al. children with poor socio-emotional competence display more challenging behaviours, including aggression, delinquency, and substance abuse. Children learn about emotions and how they can be managed in the context of social interactions. While such learning begins in the home, high quality Early Childhood Education and Care settings are also considered to be an important locus for supporting children's social-emotional development . Early childhood educators can promote social and emotional skills in the classroom by providing children with a safe, nurturing, and predictable environment , 2009; Ho & Funk, 2018). In a nationally representative longitudinal study, parents of young children in Ireland rated children who attended centre-based care as having fewer emotional and peer problems and further analysis observed that non-parental childcare of any type at nine months was found to have a small positive effect on socioemotional outcomes at age five. Teachers, educators, and caregivers play key roles in helping children develop social and emotional competence . ECEC settings are especially rich in opportunities that support children to build and consolidate socio-emotional skills. Play-based learning is particularly relevant for young children, providing them with relevant and meaningful learning opportunities through which they learn to cooperate and display socially appropriate behaviour. UNICEF posits that "play sets the foundation for the development of critical social and emotional knowledge and skills. Through play, children learn to forge connections with others, and to share, negotiate and resolve conflicts, as well as learn self-advocacy skills. Play also teaches children leadership as well as group skills" . In addition, children use play as a tool to build resilience and coping skills, "as they learn to navigate relationships and deal with social challenges" . It is widely acknowledged that this increased social competence is associated with more considerate behaviour, friendliness, conflict resolution, and peer acceptance . As indicated, ECEC results in many benefits for young children's learning and development, and in particular, it supports their emerging socio-emotional development. From a bio-ecological perspective As mentioned earlier, millions of children have missed out on ECEC due to the closure of their settings during the COVID-19 pandemic. In the case of Ireland, these facilities closed with one day's notice in March 2020 and continued to be closed for months, causing major disruptions for children and parents. Little is known about how these closures affected children and families during this time. As the lockdown was an unprecedented experience, investigating the experiences of families and gaining parental insights into the impact of the closures on their young children was deemed valuable. This paper draws upon data gathered online from parents during the initial period of lockdown in Ireland, and provides insights into the socio-emotional impact of the COVID-19 crisis on young children. --- Method This section describes how the study was undertaken, providing details of the online parental-report Play and Learning in the Early Years Survey. The survey consisted of three sections and asked a wide range of questions about children's play, learning, and development, including questions related to children missing ECEC, school and other children, which are the focus of this paper, and described in more detail below. Many questions on the survey were drawn directly from the longitudinal Growing Up in Ireland Study , adapted from previous research, or developed specifically for the PLEY Survey . The survey was open to participants for two weeks from May 21 through June 3, 2020. At this time in Ireland, early childhood education and care settings and schools had been closed since March 13th, with the announcement of these closures made by the government on March 12th. Additional national restrictions were put in place in Ireland on March 27 th , when the Irish government directed that all citizens must stay at home except in specific circumstances and practice social distancing . Adults and children could leave their home for brief physical exercise, but only within 2 km of their home ). This limit was extended to 5 km on May 1st and to 20 km on June 8th. A Road Map for Reopening Ireland, published on May 18th, which proposed a phased re-opening of the country up to August, 2020 , with some ECEC settings reopening June 29th, and schools planning to reopen in late August or early September 2020 . --- Materials The first section of the survey, with which this paper is concerned, explored the impact of the COVID-19 restrictions on children's play, learning and activities . Parents were also presented with a series of statements relating to the impact of the restrictions on their child and asked to rate their agreement with each statement on a 5 point Likert scale . The following four statements related to their child missing ECEC, school, and friends: My child misses childcare, My child misses school, My child misses friends, and My child misses playing with other children. In addition to the quantitative data collected, the survey instrument included an open-ended question which allowed parents to provide information in response to a question asking them to describe the biggest change to their child's play or activities as a result of the COVID-19 crisis. These responses were important in gaining deeper insights into what Marshall and Rossman refer to as the individual lived experiences of study participants during this unprecedented 'lockdown' time. --- Procedure Parents with young children were recruited through newspaper advertisements and also through social media platforms, including Twitter and Facebook. Information about the study was shared with schools, parenting networks, early years' organisations and centres, and parents of young children who are active on social media. Those parents in turn shared this information with their contact networks by retweeting, posting, or forwarding information. Information about the survey and a link to it was also available on the Government of Ireland Parent's Centre webpage while the survey was open, and it was also shared on social media by the Government of Ireland's Department of Children and Youth Affairs . Participants completed the online survey via Qualtrics™ software , after expressing initial interest in the survey by clicking on the advertised link. Prior to giving their informed consent to participate, participants were provided with detailed information about the survey and what was involved in completing it. Parents completed most of the demographic questions first, followed by the questions about the impact of COVID-19 on play, learning, and development, in the three sections of the survey. The study, which was granted ethical approval by the institutional ethics board, took approximately 20 min to complete. --- --- Results Both the quantitative and qualitative data indicated that young children were missing many aspects of their lives during lockdown, including their ECEC setting, their school, their friends and playing with other children . The majority of parents agreed that their child missed their friends. Additional analyses indicated the gender and age of the children affected some aspects of missing out. For example, girls had higher scores than boys for missing school, U = 15,894, N = 385, p = 0.014, and for missing their friends, U = 26,986, N = 501, p = 0.003. There were no significant gender differences for missing playing with other children, U = 29,155, N = 503, p = 0.123, or for missing childcare, U = 9959, N = 287, p = 0.701. Younger children had significantly higher scores for missing ECEC than children aged 6 and over, U = 6850, N = 283, p < 0.001, although they had lower scores for missing friends, U = 23,339, N = 493, p < 0.001. The quantitative data were also analysed to compare the responses for children that had siblings to those that were an only child, but no significant differences in responses were found between the two groups, all p's > 0.05. The qualitative data were analysed through a process of thematic analysis. Given that these data were exploring a new phenomenon, predetermined themes were not identified. Instead, the data were analysed to gain the perspectives or multiple realities of the parents in this study . Through the thematic analysis process, key themes were identified by the researchers. Two researchers individually immersed themselves in the qualitative responses from parents. Each response was treated as a unit of analysis. Through an iterative process of reading and rereading responses, the coders identified key themes and sub-themes, independently of each other. There was a high level of inter-rater reliability between the two coders, prior to discussing the themes that emerged. Examples of each theme and sub-theme were reviewed and considered. Theme saturation was achieved through reading and rereading, and full agreement was reached through discussion. Both coders determined and agreed which parts of the data were key representations of the identified themes and these are presented below. These themes included: 'missing' from a structural perspective and 'missing' from a relational perspective, as a lack of interaction was another key theme. Another key theme to emerge from the data related to the socio-emotional impact that the lockdown had on children and their parents, with both negative and positive effects noted by parents. From a structural perspective, many parents mentioned how the children missed the routine and structure provided by the early childhood or school setting. Noting that her 3-year-old daughter "has gone to the childcare setting since she was 6 months", one parent articulated how her little girl "strongly misses the social aspect of it, the routine and all the activity". Although this parent had provided "paint, playdough etc.", and they "make things together at home", her daughter "has said she has more fun painting and creating with her friends. She is very sociable". Another parent stated that her 7-year-old daughter "definitely misses her school friends and the routine of school". Another noted her 5-year-old son was "[n]ot going out as much, usually he loved going to school as he needs routine". From a relational perspective, a lack of interaction prominently emerged across the qualitative data, with terms such as 'lonesomeness', 'alone', 'isolation', and lack of 'interaction' featuring regularly. One parent noted the difficulties for her 2-year-old daughter, and for herself. As indicated in the following commentary, these difficulties ranged from lack of family support and friends to overall absence of routine and structure for her daughter, "Not having other children to play with, which is especially challenging as I also have a baby who was just 7 weeks old when lockdown began. I'm breastfeeding him and have no family support during the day so my attention is torn between the two. She finds this very difficult. She misses her classes and regular playdates as well as all of the activities she would have been doing at crèche". This sense of missing out on activities and on interaction with other children was also reported by parents in relation to their school-going children. One parent noted in relation to their 4-year-old son that "The biggest change has been having no school and friends around to play with or come over to our house". This parent described the effect upon her son, describing how he repeatedly questioned returning to school, having friends to his house to play and when the virus would finish. In the words of the parent, he "is constantly asking when he can go back to school. When can he have friends over to play? When will the virus be over? He absolutely loves school and learning and I do worry about when he goes back, if things are crazy different it could put him off." The relationship between children missing ECEC, school, their friends, and/or the routine provided by their setting, and the socio-emotional and behavioural effects of missing out on these aspects of their lives was evident across the qualitative responses. Parental concerns about their child's social-emotional behaviour were noted in many of the responses. One parent whose 2-year-old daughter "was attending crèche" described her as "very out-going and loved seeing her friends" prior to lockdown. As a result of lockdown however, her daughter "has become very very attached to mum and is cautious at first when she sees some one out of the family home. Before the virus she used to be so outgoing." A parent of a 3-year-old girl said she was "more subdued and wants to go to bed more often". Another parent of a 3-year-old boy described him as "very spaced out, not the same child at all", while a parent of a 4-year-old boy stated "he's sad and less willing to share". Commenting on their 5-year-old son, another parent noted that while "they play more at home as they aren't in playschool…emotionally [he is] a lot more demanding and his behaviours have reverted to that of a younger child". This parent also alluded to how the closure of external services also affected the child, who "had speech issues which had much improved after speech therapy". During the lockdown however, the child's speech "has also regressed." These emotional and behavioural effects were also present in older children missing out on school, with one parent stating that her 7-year-old child was "Missing friends and school so tantrums are regular and bedtime is disrupted", while another parent described her 7-year-old son as suffering from "[i]solation and anxiety. He misses the routine of school. He misses meeting his friends". A parent of 6-yearold noted that "behavioural issues are magnified" while a parent of a 7-year-old girl mentioned her daughter's "[l]ack of energy, all the down time has brought her interest and mood down". Another parent of an 8-year-old boy said "He has become very moody and lazy". In addition to the impact on children, parents' responses pointed to how the closure of ECEC and school settings affected parents' own socio-emotional states. The difficulties in working from home while simultaneously providing care for their child were often noted. One parent, for example, noted that her 2-year-old son was "A bit more clingy to me and wanting me to be involved in the play especially at times I'm trying to balance working from home while providing care to him and his older sister". Another parent of a 3-year-old stated that "Being taken from friends in crèche/ playschool and staying away from cousins has been very difficult". For this parent, the fact that both parents were "working full time from home has been extremely hard and challenging with child constantly asking to be played with and not understanding the demands and stress of work. It is truly a desperate situation and I feel the pressure on working parents and impact on kids has been downplayed and not sufficiently acknowledged". Parents also highlighted how screens were being used as a 'digital babysitter' to replace the care and education usually provided in an ECEC setting. One parent of a 2-yearold stated, "We are working at home so we can't dedicate 100% of our time to her so she ends up watching a lot of TV. She used to go to crèche, so this was not a usual situation", while another said "She is in front of the TV for 5-6 h per day because I have to work. Before this she was in crèche with 9 other children". Although this parent of a 2-yearold girl takes "occasional short breaks to play" with her daughter, she claims that "she often looks bored and under stimulated". Some parents also felt "horrible" about using screens to keep their child occupied. For example, a parent of a 1-year-old stated, "We need to use the TV as entertainment while we work so he watches far more TV than we are comfortable with. And he does everything glued to the TV now which is a horrible feeling as a parent", while the parent of a 2-year-old noted, "Because both parents have to work from home her screen time had increased from about 1 h a day to about 4 h a day". While most parents commented on the negative effects of the lack of early education and care, several respondents commented on the positive impact of lockdown on young children and families. As such, these parents identified positive relationships among siblings and the lack of routine and structure as being particularly positive, with one parent of a 5-year-old, describing lockdown as "a break from the daily grind". A parent of a 1-year-old noted that their son had "[m]ore outdoor play as he has more freedom at home than at childminders", while another said her 3 year old had "[m] ore time to play at home, not having to run and race places and not being in crèche". This was also evident with older children. For instance, a parent of a 6-year-old stated her child had "[m]ore time to play with toys and play outside now compared to school/ activities pre Covid". Likewise, the parent of an 8-year-old noted their child had "[m]ore freedom-being allowed to just be. We have not placed a huge emphasis on structured learning allowing them to explore for themselves". One parent also noted benefits for their 4-year-old's child's language: "Lots of one-to-one time with parents and his younger sister at home. His language has improved noticeably, he has had no ill-health whatsoever and he has loads of adventures and treasure hunts/picnics in a local forest/hillfort". --- Discussion The findings of this study provide empirical evidence of the socio-emotional impact of the COVID-19 crisis on young children, demonstrating both positive and negative effects. Triangulation of the findings from the quantitative and qualitative data provided by parents suggested that most children were 'missing' their ECEC settings and schools. Findings from the qualitative parental responses for children indicates that children missed the routine, structure and activities provided by these early childhood settings and schools. As reported, parents also indicated that their children experienced a lack of interaction and missed peer relationships with friends and other children in the early childhood setting or school. These findings are consistent with the results of a global Save the Children survey, in which parents described how more than half of the children surveyed who were not in contact with their friends, reported that they were less happy and more worried than before . When children play freely with other children, they cooperate and learn to work together and they get to both express and listen to the opinions and ideas of their peers . Interaction with other children supports many aspects of socio-emotional development, and the imposed restrictions severely disrupted these opportunities for interaction. Parents also had concerns for their child's socio-emotional development now and in the future, with some parents describing anxiety, clinginess, isolation and low mood. These findings are consistent with the findings of further surveys conducted by Save the Children in the US and Europe. The results of these surveys indicated that children reported feeling "anxious, bored and fearful". Half of children interviewed in the US were worried, while a third felt scared, and a quarter of the children reported feeling anxious . The findings from the current study, and from others internationally, suggest that some young children may need additional support in overcoming some of the negative impacts of the COVID-19 crisis on their socio-emotional development. The findings from the quantitative data also indicate that certain individual factors such as the gender or age of the child may also be important in considering how the child was affected, and potentially what additional supports may be needed. Supporting consistent relationships is a key indicator of quality in early childhood education and care settings and is highlighted in Irish policy and legislation. In the guidelines for reopening of early childhood education and care settings in June 2020, the Irish government stressed the importance of a child-centred approach, effective communication with parents, and the use of play pods , 2020). The play pod model restricts interactions between closed groups of children and adults as an alternative to social distancing, which is not possible with young children. As such, play pods facilitate infection control by reducing excess contacts but also help to maintain effective relationships. According to the DCYA , "'Play-pods' develop a cohesive, consistent group of children who feel safe". The 'pod' system was also implemented in Irish schools both to keep the number of interactions to a reasonable number in an indoor setting, while also helping to support relationships after almost six months of school and ECEC closures. This national policy for the reopening of these care and education settings highlights the importance of wider macrosystem influences on supporting child development as restrictions ease around the world. While the findings show the varied negative impacts on young children, the current study also indicates the impact of the closure of schools and ECEC settings on parents as well. Some parents made reference to their own emotional state and the challenges of balancing work and home life during this period of lockdown. The majority of respondents in this study were mothers and the findings are consistent with those of Lagomarsino et al. who reported that Italian mothers had similar difficulties in reconciling work commitments, family, and domestic duties, particularly with children aged from birth to six. There appear to be greater impacts for mothers than fathers in terms of balancing work, domestic and caring responsibilities and this has highlighted gender inequalities in division of labour within the home in Italy . Furthermore, Balenzano et al. found that the experience of lockdown and working from home was stressful for many parents. These findings are consistent with previous research which shows that social factors have a role to play in psychological development and family functioning. For example, Belsky proposes that the social environment and social support influence the parent-child relationship. Parent characteristics such as mental health, anxiety, or depression, and a child's own characteristics are important too. For example, Giallo et al. found that parents had less parental involvement when they had health issues, were in high distress, lacked social support, had troubled relationships, or when their child had a difficult temperament. Any or a combination of these factors, such as those reported by parents in the current study, could limit parental interactions and involvement in supporting their child's play, learning, and development as they strive to meet the child's basic care needs, particularly while also juggling working from home. The COVID-19 crisis and resulting lockdown had a significant impact on the social environment of families and the typical supports available to parents to care for their children , emphasising the importance of wider societal and cultural influences on children's socioemotional development . However, our findings suggest that some parents viewed the lockdown period, and the associated lack of structure or routine, as having a positive effect in terms of the child's socio-emotional development. They noted the increased opportunities and time to play with siblings, to play alone, and to play outdoors. It may be the case that some of the parents that reported positive experiences had settled into a new routine after two months of lockdown and their young child had adapted well to the change in circumstances and lack of early childhood care or education. Balenzano et al. also observed some Italian families reported positive outcomes in terms of cohesion that resulted from spending increased time together indoors. These families demonstrated resilience and the capacity to cope with family stress and adjust to lifestyle changes. Prime et al. in their conceptual framework for resilience and well-being highlighted the importance of family processes which may act as a buffer against the emotional impact of COVID-19, as well as promoting resilience through close relationships and shared family beliefs. The findings from the current study highlight the non-homogenous nature of the experiences of families and how they were impacted by lockdown. As governments globally provide additional supports for children, parents, and families to support the socio-emotional development and mental health of children, it is important to consider individual differences in experiences, and the many other factors that influence perceptions of those experiences. We recommend that each child's unique experience of the pandemic be taken into account in tailoring supports to the areas in which they faced the greatest challenges . --- Implications of the Findings It is also important to consider the implications of the findings reported in this paper relating to how the COVID restrictions affected young children's social-emotional development in ECEC. In this regard, schools and early childhood settings can provide a secure safe base for young children, enabling them to re-establish relationships with their teachers and their peers. As the discourse of 'learning loss' gathers momentum, in the context of early childhood education specifically, teachers must prioritise children's mental health and social-emotional development through relational pedagogy. Opportunities for play are paramount so that young children can develop critical social and emotional skills, build resilience, and develop coping skills to deal with adverse situations . The role and response of early childhood educators is, therefore, critical. We recommend that early childhood teachers and policy makers embrace 'slow pedagogy' and 'slow knowledge', within a system which should be characterised by listening ; the antithesis of the 'hurried child' . We urge early childhood teachers to find the rhythm of the children they are working with, to listen deeply, observe deeply, and connect deeply with children. We recommend reading slowly; playing slowly, snacking slowly, and walking slowly as a means of facilitating the natural rhythms of the child's physiology. As noted by Clark , slow has become the new urgent. --- Limitations, Strengths, and Future Research The findings from this study provide insights into the experiences of children and their parents during the initial COVID-19 crisis lockdown in Ireland, when early childhood care and education settings were closed. However, it is important to note the limitations of the study when considering the findings, including the generalisability of the findings. For example, the sample is a volunteer sample of mainly welleducated and employed Irish parents. It may be the case that families with other characteristics, living in more challenging and adverse circumstances, or based in other countries, had quite different experiences of the period of lockdown. Additionally, different countries around the world implemented COVID-19 restrictions in different ways, in terms of the closure of schools, crèches, and workplaces, which may affect family experiences. For example, some countries had shorter periods of complete school closures or fewer restrictions on citizens , while others had more restrictions . Furthermore, future research should also explore the experiences of all family members directly. During lockdown it was not feasible to gather data in person, due to the restrictions in place. Mothers were the main respondents to the PLEY survey, and thus it is important that the perspectives of fathers, and of young children themselves, are ascertained in subsequent studies, and through multiple means, such as interviews and observations, as well as through surveys. However, a strength of the current study is that parents responded in real-time, while they were in lockdown, while future studies may have to rely on recall of the experience. The combination of both quantitative and qualitative data on this topic also provide rich insights into family experiences during this time. Future research might further explore children's experiences of missing ECEC, the socio-emotional impact of their return to ECEC, the impact of 'play pods,' and the perceptions of ECEC professionals regarding the effect of the lockdown and the restrictions on young children. --- Conclusion The changes parents described as a result of the COVID-19 lockdown are reflective of their own individual experiences but many commonalities were found in these experiences too, relating to the importance of schools and ECEC settings for young children and their families. These commonalities include children missing their activities, routines, and friends at school and childcare, as well as the parental stress of juggling working from home along with increased childcare and education responsibilities. The findings from the PLEY study give insights into the socio-emotional impact of the COVID-19 lockdown on young children and their parents, and provide a foundation for future research on this topic. --- Data Availability Data is available on request from the corresponding author. --- --- Ethical Approval The research reported in the manuscript adhered to the ethical standards of the Psychological Society of Ireland Code of Professional Ethics, , and ethical approval was granted by the Mary Immaculate College Research Ethics Committee. The procedures used in this study adhere to the tenets of the Declaration of Helsinki. Informed Consent Informed consent was given by all individual participants included in the study. Consent to Publish Consent publish and present findings from the data in the study was given by all individual participants. Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Worldwide, millions of children have missed out on early childhood education and care (ECEC) due to the closure of their settings during the COVID-19 pandemic. However, little is known about the socio-emotional impact of these closures on young children. This paper draws upon a study of 506 parents of children aged 1-10 years in Ireland who completed the online Play and Learning in the Early Years (PLEY) Survey during lockdown in May and June 2020. Parents responded to a series of questions about their child's play, learning and development during lockdown, and described the impact of the restrictions on their children's lives. The study was approved by the institutional ethics committee. Findings indicate that most children missed their friends, playing with other children, and the routine and structure of ECEC and school settings. Parents described the negative impact of the closure of these settings on their children's social and emotional well-being, which they suggested, resulted in tantrums, anxiety, clinginess, boredom, and under-stimulation. However, some parents did report positive aspects of lockdown for their children and the family, including more time to play with siblings and a break from the usual routine. While the findings of the PLEY study indicate that children's socio-emotional development was severely disrupted during lockdown, with a variety of negative impacts, this experience was not universal. Moreover, the findings suggest that families missed the nurturing environment provided by ECEC programs that supported their children's socio-emotional development, as well as the structure and routine afforded by their children's participation in early childhood programs.

INTRODUCTION The emergence of new media in the 20th century changed people's communication patterns, McQuail defines "new media is a variety of communication technology devices that share various characteristics which, apart from being new, are made possible by digitization and their wide availability for personal use as a communication tool" . The use of social media is growing rapidly along with the development of the user community in communication technology . The emergence and development of the internet brought new ways of communication in society . Social media is present and changes the paradigm of communication in today's society. Communication is not limited by distance, time, space. It can happen anywhere, anytime, without having to be face to face. With the presence of Instagram, Twitter, Facebook, and the like. Social media is online media, a means that enables its users to communicate and interact, irrespective of physical distance, geographical distance and time . Social media offers the dream of being able to show self-existence, getting great attention from the public, because psychologically, humans have a need to be able to socialize and get appreciation for what has been done, including respect. This is well realized by social media users in content identity play, so in fact they are competing to show an identity that even seems manipulated, just to increase personal attractiveness to other fellow social media users . The same thing was also revealed by Bell that the existence of the internet as a "cyberspace" is essential for society, especially for those who need a space for expression for things that cannot be done in the real world. In the virtual world one can freely play their role or identity. This is done as a form of expression for things that cannot be done in the real world. Through Instagram social media, users can upload all kinds of activities, complaints, personal photos and short videos to be conveyed to other users through Instagram social media accounts in shaping their self-identity. Identity, is an important thing in a society that has many members. Identity creates an image of a person, through; physical appearance, racial characteristics, skin color, language used, self-assessment, and other perceptual factors, all of which are used in constructing cultural identity . Identity according to Klap includes everything in a person that can legitimately and reliably state about himself -his status, name, personality, and past. Instagram is a social media that has many features that can be used for various things such as stories, filters, captions, feeds, highlights, hastags and various other features that can support users to express themselves, one of which is Outfit of The Day fashion style. This is corroborated by an official statement from www.instagram.com which defines Instagram as "take a picture or video, choose a filter to transform its look and feel, then post to Instagram it's that easy", which can be interpreted as "take a photo or video then choose a filter to transform the way you want and feel, then upload to Instagram it's that easy." When looking at the historical context of the trend phenomenon, the term OOTD was born at the beginning of the emergence of Instagram. Outfit of The Day is used as an action to show off the form of their identity that is always up to date and contains certain symbolic meanings. Through the OOTD trend phenomenon displayed by fashionistas, which is then embedded with various images and certain impressions, it creates a desire for people to build their identity and reproduce this identity within themselves. The positive impact of advances in information technology on society can be in the form of easy access for a person to produce, consume, and distribute all forms of information which can be in the form of messages, images, and exchanges of meaning. Regarding the OOTD phenomenon, the role of the media is very large in bridging the spread of the development of existing fashion items, especially on Instagram media. This has an impact on people who will always have a choice reference for their fashion style. In addition, there are also negative impacts that indirectly affect people's behavior. The negative impact felt by technological advances is the increasing number of fashion products offered freely on Instagram. This makes everyone able to see the product without having to go to a fashion store. So, this has the potential to lead to the emergence of motivation for the act of consumption of these fashion products. The phenomenon of OOTD fashion styles that are openly and freely accessed on Instagram social media makes Instagram a place of inspiration for young people to dress similarly as a form of representation of an up to-date lifestyle and as a pattern of forming their new identity that is influenced by trendsetters . Mass advertising of fashion products on Instagram has revolutionized the way people view fashion items. People will be easily tempted by the fashion products offered by looking at the OOTD style on the Instagram media. In today's digital society, the perspective regarding the OOTD trend phenomenon has shifted from seeing an item based on "used value" to "symbolic value". There is a strong motivation in consumers to carry out acts of consumption, so they consider OOTD products as an important characteristic that must be implemented through fashion styles, attitudes, and symbolic meanings carried out through the construction of new identities that are trendy and up to date to keep up with the mobility of the times . On Instagram social media, many accounts offer products through OOTD packaging that dominates. So that this results in people experiencing symptoms in purchasing each product not based on "infatuation" or a conscious choice, but because of the "trendsetter" or because it is owned by someone else. In addition, the use of excess goods can trigger people towards a consumptive lifestyle. The use of OOTD fashion style indirectly encourages people to always follow the development of products that change from time to time. The existence of a public compulsion to always follow the developing trend causes people now to flock to always display the latest form of their identity in order to always be up to date with the conditions of the developing fashion trend. This is in line with the concept of "Fear Of Missing Out" . The concept of FOMO is a psychosocial disorder of a person who is described as having an excessive fear of being left behind by something that has recently happened . The fear of a trend that is developing in society causes people to experience a fear disorder towards themselves, including the development of fashion styles. An individual will be considered unable to keep up with the times if he/she does not follow the development of existing fashion trends. A constant anxiety that lingers in this individual gives the effect of a desire for an individual to always be connected to everything that is up to date. So this causes him to always be motivated in social media to be connected all the time with a trend that is happening . From this background, researchers are interested in seeing and exploring a process of community identity construction in seeing the OOTD fashion phenomenon and its implications for FOMO. In addition, how is the form of identity change that occurs in society through Peter Burke's identity theory. Society as a collection of individuals who have needs and interests to carry out a process of interaction with other individuals often also leads them to social ties which are the main conditions for the formation of social groups. During the process of social intertwining or bonding, an individual will face the concepts of interests between other individuals that are attached and inseparable to their concept of "self". This concept of self takes an important part in the process of identity formation. Chris Barker explains that the construction of identity concerns the similarities and differences between a person and their social. Webster & Castells explain that identity is a collection or source of meaning and experience of an individual. Identity is a reference for others to see themselves as social actors where the process of identity construction can include cultural meanings that are woven into themselves. --- LITERATURE REVIEW Outfit of the day or OOTD is an individual's concept of dressing related to the way they wear an outfit on that day. OOTD can also be seen as a new phenomenon on social media, especially Instagram, among fashionistas to show the concept of dressing on that day. An OOTD concept can be done by anyone by mixing clothes simply and not too contrived . In seeing the phenomenon of outfit of the day that has sprung up, it cannot be separated from the role of a social media Instagram which is a bridge to introduce the concept of OOTD to the public, especially students. The student himself is an individual who is taking the learning process in a higher education institution within a certain period of time. According to Hartaji a student is someone who is in the process of learning and deepening knowledge in an education in the form of a college consisting of academics, high schools, institutes, universities, and polytechnics. This statement is reinforced by Siswoyo who defines a student as an individual who is in the process of gaining knowledge at the university level, both public and private. Students have distinctive characteristics and personalities that can think critically, have a high level of intelligence, and have a high level of planning. intelligence, and have a fairly mature level of planning. --- METHOD This research uses a qualitative approach and has descriptive characteristics. The data collected is first directly from the source, the researcher becomes part of the main instrument of analysis, secondly the data is in the form of words in sentences or pictures that have meaning . The type of research used in this study is phenomenology. Phenomenology explains the structure of consciousness in human experience. The phenomenological approach seeks to let reality reveal itself naturally. Through "stimulating questions", the research subject is allowed to tell all kinds of dimensions of his experience related to a phenomenon/event . Data collection techniques were carried out by observation and interview. Interviews are used as a data collection technique if the researcher wants to conduct a preliminary study to find problems that must be researched, but also if the researcher wants to know things from respondents that are more in-depth . The criteria for informants that have been determined by researchers related to the objectives of the research conducted are as follows: 1. Is a student who lives in Surakarta and Jakarta 2. Have an Instagram social media account 3. Know about the concept of Outfit of The Day --- RESULTS Based on the results of data collection that has been carried out by researchers, three points of information forming elements are obtained, namely information as a process, information as an individual supporter, and information as a supporter of interaction. These three points of input forming elements were found by researchers in the data collection process whose task was to see before a perception itself was formed. The first point in the input aspect which is the element that forms perception is information as a process. Information as a process is a set of information attached to a physical object that will be manipulated by an actor into the form of perception of fashion outfit of the day . In this aspect of observation, researchers see how a person's perception of the OOTD fashion phenomenon can be built. The observation process carried out by an actor in interpreting information attached to an object is divided into two main aspects, namely the virtual environment and the social environment. In the aspect of observing the virtual environment, researchers grouped several contents on Instagram as forming perceptions about OOTD, namely outfit inspiration content, fashion mix and match content, outfit spill content, outfit tips and tricks content, and hastags . Through the Instagram platform, content about OOTD is produced to create a widespread existence in the community, especially students. This causes the choice of filters and features offered by Instagram to make the exchange of perceptual meanings for students even more widespread. Apart from the process of observing the virtual environment, researchers also found how a student's perception is built about OOTD fashion through the social environment. The process of forming perceptions can be seen from how social interactions are established between students both when in formal activities such as on campus or informal activities such as hanging out with friends. Through the process of observing the social environment, an actor can see firsthand how an OOTD phenomenon is implemented by others. Thus, the process of manipulating physical objects into a form of perception will be easily formed. Furthermore, when an actor has carried out the observation process in both the virtual and social environments, the next factor that researchers find is the process of understanding and selecting information. With the amount of information obtained by actors when viewing information originating from virtual and social environments, the next step is to carry out the selection and selection process. This process is an actor's step to see the suitability and compatibility between the information circulating and the personality that exists in the individual. Regarding OOTD style, the process of understanding and selecting information is a very important aspect considering that there are so many choices and styles of clothing offered and not all styles or styles used by others match the personality of an actor. The next point that becomes an input-forming aspect is information as an individual supporter. Information as an individual supporter is an aspect that researchers find about how information attached to OOTD fashion can shape a person's perception. Based on the results of data collection that has been carried out by researchers, it shows that information as an individual supporter is information attached to the OOTD object. This information is attached to an object that will be manipulated by an actor to become a perception. Individual supporting information is an aspect that is internal to an actor, where when someone uses it, the actor will get supporting aspects in himself such as: confidence, satisfaction, and authority. In addition to aspects of information as individual supporters, in the process of forming perceptual input, researchers found the last factor, namely interaction support information. Information supporting interaction is an inherent aspect of OOTD fashion objects that can shape a person's perception. This inherent information that researchers categorize into interaction supporters because it is an external aspect that can support an actor in carrying out the interaction process. In this factor, the interaction support information that researchers found included praise, reputation, and social status. The next aspect in Peter Burke's identity model is perception. After an emerging information is manipulated by an actor, a subjective perspective will arise. This is what is referred to as perception. Perception is a key point in the process of forming one's identity. Perception means a person's subjective perspective on the information circulating in their environment. In other words, perception is the process of giving meaning to the stimulus stimuli obtained based on one's own experience. Related to the growing OOTD phenomenon, researchers found several perceptions arising from students such as: up to date, elegant, aesthetic, fashionable, graceful, simple, collorfull, prestige. The next aspect related to Peter Burke's identity model that researchers use in seeing the identity construction process is identity standards. Identity standards are a set of perceptions of a person that have been classified and form characteristics that can define an actor's identity. This is as expressed by Burke , "Each identity contains a set of meanings, which may be viewed as defi ning the character of the identity...." . In this case, the researcher uses masculine or feminine identity standards related to the shape and style of clothing styles. Next, the comparator aspect is the next aspect in Peter Burke's identity model which is tasked with comparing the perceptions that enter the environment with the identity standards held by an actor. This is in line with what is expressed by Burke "The third component of the identity system is the comparator, which does nothing more than compare the input perceptions of meanings relevant to the identity with the memory meanings of the identity standard." Based on the results of data collection that researchers have described earlier, it can be seen that the comparator component is a person's main point in seeing a fashion object, especially OOTD. In the perception point, it can be seen how an actor sees the OOTD fashion object that is currently developing into a form of "the language of fashion". This can be seen from the various perceptions generated by an actor in assessing a fashion object. Meanwhile, it can be said that OOTD is a fashion object that is considered to express certain meanings and intentions for its users. OOTD clothing products provide values, perceptions and images that try to be used for nonverbal communication. When a perception reaches a comparator point that seeks to compare identity standards with various incoming perceptions, it generates an error signal. This error signal is caused by a mismatch between the two components being compared, namely the identity standard and the incoming perceptions. Then when this error signal appears, it will cause a fear of missing out attitude. This FOMO attitude is an implication of the error signal arising from the comparator process. Based on the research results, FOMO attitudes occur due to several things such as social, economic, and fashion involvement. Some of the things that cause a person's FOMO based on the first error signal are social. An actor will experience a lagging attitude due to intensive interaction with other people who have an attractive appearance and are up to date regarding clothing styles. Then the next factor causing FOMO is related to economic factors. Through this factor, an actor experiences backwardness due to limited access to consuming fashion products. The limited money owned by students causes them not to be able to consume various OOTD fashion products that are developing, so this causes a person to experience a fear of being left behind or FOMO. --- CONCLUSION According to the results of the research that has been conducted, it can be concluded that there is an identity construction process that occurs regarding the outfit of the day phenomenon that develops on Instagram social media for students. The construction process begins with perceptual input which is the first step for an actor in building his identity. There are three points that form input elements such as information as a process, individual supporting information, and interaction supporting information. These three elements are the categorization that researchers find before the process of perception or meaning of something is formed. After going through the three points of input formation, the next stage is perception. Through the OOTD phenomenon, researchers found several perceptions that emerged such as: up to date, elegant, aesthetic, fashionable, graceful, simple, colorful, and prestige. The next stage in the identity construction process is the comparator or the process of comparing the perception input with the identity standards held by an actor. Existing identity standards related to student dressing styles include: polite, neat, comfortable, simple, elegant, aesthetic, universal. Through the comparator process that occurs, an error signal is found that arises, namely the feeling of fear of missing out which is motivated by several things such as economic, social, and fashion involvement so that this has implications for the impulsive buying process of OOTD products. The final stage in the student identity construction process is output in the form of a re-representation of their dressing style through their virtual identity in order to reconfirm their dressing style or as a reflected appraisals process.

In today's digital society, the perspective regarding fashion objects, especially Outfit of the Day (OOTD), has shifted from seeing an item based on used value to symbolic value. There is a strong motivation in consumers to carry out consumption actions, so they consider OOTD products as characteristics that must be implemented through style, clothing, and symbolic meanings that are constructed through new identities. This research aims to find out the construction of adolescent identity and the implications of the identity formed related to the OOTD phenomenon. The theory used in this research is Peter Burke's Identity Theory. This research uses a qualitative method with a phenomenological approach, and uses purposive sampling data collection through observation, interviews, and documentation. The results of this study show that the process of student identity construction begins when a perception of OOTD such as up to date, fashionable, prestige, elegant is obtained through virtual and social environments which are then compared with previously inherent identity standards. Furthermore, the comparator sends a signal of incompatibility between the incoming perceptions and the identity standards held, so this has implications for impulse buying activities.

Humans enjoy a private, mental life that is richer and more vivid than that of any other animal . Yet as central as the conscious experience is to human life, numerous disciplines have long struggled to explain it . The present paper reviews the latest theories and evidence from psychology that addresses what conscious thought is and how it affects human behavior. Our focus is on the type of conscious experience that is unique to humans. A common practice in discussions of consciousness is to distinguish between two levels . The first level, phenomenal awareness, is shared by humans with most other animals. It comprises the experience of sensations, feelings, or qualia. The second level, conscious thought, is largely unique to humans and includes self-awareness, inner reflections, and deliberations. This paper reviews the latest research on the link between this second level of consciousness and human action. Earlier and more extensive treatment of these issues is available in Baumeister and Masicampo and Baumeister et al. . We suggest that conscious thought adapts human behavior to life in complex society and culture. First, we review research challenging the common notion that conscious thought directly controls action. Second, we present an alternative view-that conscious thought processes actions and events that are typically removed from the here and now, and that it indirectly shapes action to favor culturally adaptive responses. Third, we summarize recent empirical work on conscious thought, which generally supports this alternative view. --- QUESTIONING CONSCIOUS THOUGHT AS THE CONTROLLER OF ACTION A commonly held view assumes that conscious thought is in charge of behavior . However, several decades of psychology research have challenged this notion. The findings have shown that conscious thought has limited access to the mind's inner workings, while revealing that the unconscious is capable of initiating and guiding behavior without help from conscious thought. --- THE LIMITATIONS OF CONSCIOUS THOUGHT If conscious thought were in charge of behavior, then people could presumably report and explain their actions accurately. To the contrary, Nisbett and Wilson showed repeatedly that people who were asked to explain their actions would overlook factors that had demonstrably large influences on their behavior. People even denied those influences when asked about them directly. Thus, when people introspect about their behaviors, they seem incapable of retrieving accurate accounts of what they did and why. Gazzaniga has suggested that people explain their behaviors by fabricating stories. In his research, brain damaged patients who could not explain their behaviors accurately were nevertheless quick to provide plausible, though obviously false, explanations for their actions. More recent research has demonstrated a similar phenomenon in normally functioning adults . This work employed sleight of hand to dupe participants into explaining decisions they did not make. Most participants failed to notice that these were not their decisions. Furthermore, they had no problem providing quick and elaborate explanations for why they made them, even though the explanations could not have possibly been true. The general pattern thus seems to be that people are unaware of their own behaviors. If the conscious self cannot recognize its own actions, it is unlikely that it controls them. A further limitation of conscious thought is that it is too slow to initiate behavior. Libet observed people as they decided to initiate simple motor movements. His data revealed that conscious choices were too delayed to be the true source of behavior. Unconscious processes, on the other hand, were much earlier indicators of action . Even for more complex decisions, such as how to vote in an upcoming election, conscious decisions appear days after the unconscious has made up its mind . According to these findings, the conscious self receives its information too late in the chain of events to be the initiator of behavior. --- THE DYNAMIC UNCONSCIOUS Other work has revealed that unconscious processes are capable of initiating and guiding action, including for complex behaviors once thought to require conscious control. Bargh and his colleagues have argued that most human behaviors are initiated automatically and unconsciously in response to environmental cues. Many social motives and goals have been shown to operate in this way. The mere exposure to words related to achievement can trigger a range of motivated behaviors aimed at attaining mastery over later tasks . Crucially, participants are typically unaware of these environmental influences on their behavior. Thus, the initiation and subsequent regulation of behavior occurs despite the person having no conscious awareness of the process, including for complex sets of actions. Thus, the emerging view in recent decades has been that conscious thought is not the all-powerful controller of behavior that many perceive it to be . The conscious self is often mistaken about what it does and why. Furthermore, the unconscious seems capable of guiding much of what people do. If conscious thought affects human action, it is not in the manner of controlling moment-to-moment actions. Its influence on behavior must lie elsewhere. --- CONSCIOUS THOUGHT SERVES SOCIAL AND CULTURAL FUNCTIONS The above empirical work has prompted a revised understanding of how conscious thought relates to action . Some have speculated that there is no role for conscious thought in determining behavior . In our more positive view, nature would not have equipped humankind with such a complex capacity as conscious thought if it did not serve an adaptive function. We propose that conscious thought may have powerful indirect effects on behavior even if it does not directly control it. Furthermore, given the uniquely human nature of conscious thought, we suggest it likely serves uniquely human needs-particularly, social and cultural ones. --- SOCIAL COORDINATION AND COMMUNICATION We propose that conscious thought enables coordination with the social and cultural environment . Our thinking follows other perspectives that emphasize social pressures as the driver of uniquely human mental capacities. These have argued that primate intelligence evolved for the purpose of adapting to social life , with humans further evolving the motivation to understand others' mental states and to communicate their own mental states with others . We propose that this pressure to communicate with others transformed thinking from an individual capacity to a social one. James famously asserted that "thinking is for doing." We suggest that much of conscious thinking might instead be for talking. Consistent with that view, conscious thought and speech seem to emerge in complementary ways both in phylogeny and in development . The link between conscious thought and speech is also observable among adults, in whom the full processing of language requires conscious thought , and conscious thinking suffers if inner speech is suppressed . We suggest that conscious thought and communication afford numerous advantages. People who share their thoughts within a group can correct one another's mistakes, and so talking enables drawing on others' wisdom. People who communicate can also reach agreements with one another, taking into account others' intentions, knowledge, and resources. Thus, talking also allows for coordination and collaborative planning. --- WHY COMMUNICATION REQUIRES CONSCIOUS THOUGHT The proposition that conscious thoughts are largely for communicating does not by itself explain how conscious thoughts influence action or why they need be conscious in the first place. One answer to these questions was provided by Morsella to explain phenomenal awareness, and his answer applies to conscious thought as well. He argued that consciousness allows for communication across disparate parts of the mind, so that inner conflicts can be resolved. For organisms with few motivations, responses to sensory input can be supplied with relatively little information processing. For humans and most animals, however, motivations co-occur and conflict. In these situations, different parts of the mind offer diverging prescriptions for behavior. One part urges the body to flee while another calls on it to stay put. A major function of consciousness is to broadcast incoming sensory input to the disparate parts of the mind so that multiple needs may be negotiated and an optimal course of action taken. Phenomenal consciousness allows conflicts originating from the physical environment to be resolved. In humans, we propose that conscious thought enables conflicts originating from society and culture to be resolved as well. A second answer to the questions about the utility of consciousness is that conscious thought makes possible certain kinds of information processing that the unconscious cannot perform. Specifically, we see conscious thought as the place where the unconscious creates meaningful sequences of events or ideas. Language is one important example. The unconscious can process only single words, but conscious thought can combine words into meaningful sentences . Furthermore, the amount of information that can be communicated in sentences is infinitely more than the amount that can be captured in single words. It is only through the integrative serial processing afforded by conscious thought that the mind can combine simple concepts to produce novel conclusions. Indeed, we argue that a key function of conscious thought is to enable the unconscious to derive new insights from the information it already has. Many types of thinking are made possible by conscious thought, and each provides a means for the unconscious to reach new conclusions without acquiring additional outside information. These include logical reasoning, quantification, and causal understanding . As with language, each of these thought processes involves combining simple ideas in accordance with shared rules. Furthermore, we propose that each produces novel conclusions that can be communicated to others or incorporated into one's own decisions and behaviors. These categories of sequential thought may seem non-social, but we argue that each is a cultural process. Each type of thought employs rules communicated within culture. And each allows individuals to operate successfully within the culture, whether it is used to cooperate with others, justify one's actions , or argue . --- TRANSLATING CONSCIOUS THOUGHT INTO ACTION Conscious thought influences action via mental simulation . Much of conscious thinking involves simulating non-present events , as when people relive past experiences, anticipate desired futures, consume fiction, or daydream. Thus, conscious thought focuses frequently on non-present information rather than on current actions. Furthermore, mental simulations incorporate both of the features of conscious thought discussed above. They comprise meaningful sequences of events, at times incorporating the types of thinking already mentioned . And they allow for inner crosstalk and conflict resolution . A person can imagine the outcome of engaging in a certain behavior, and the various parts of the mind can access the simulation, objecting as problems arise. By mentally simulating positive and negative behaviors and outcomes, individuals can learn to perform or avoid them . We suggest the power of conscious thought is not in the direct control of action, as common views assume. Rather, its power lies in processing information from society and culture. It takes in information, and it combines it into meaningful mental simulations constructed according to cultural rules. These simulations can be used to determine optimal outcomes or to rehearse optimal ways of behaving. Thus, conscious thought allows individuals to translate information from culture into socially adaptive responses. --- THE EXPERIMENTAL EVIDENCE FOR EFFECTS OF CONSCIOUS THOUGHT ON BEHAVIOR We recently reviewed the literature for evidence of conscious causation of behavior . Our review surveyed experiments in which conscious thoughts were manipulated by random assignment and effects on outward behavior were measured. By the logic of experimental design, such findings indicate that the conscious thought caused behavior. We identified many such phenomena, which had the following three themes. --- INTEGRATION OF BEHAVIOR ACROSS TIME There are numerous influences of past and future reflections on behavior. People who reflect on and analyze the past can benefit. Some reflect on prior traumas to gain useful insights about them, thereby facilitating healthy recoveries . Others analyze past actions to explore how they might have behaved differently, inviting lessons for achieving more desired outcomes later . Alternatively, people who imagine or mentally relive the past can prolong prior mindsets rather than move beyond them . Imagining the past preserves and even amplifies prior emotions and motivations, thereby affecting later behavior. For example, ruminating about a prior, anger-provoking event can amplify anger and incite aggression . Thoughts of the future are also influential and have selfregulatory benefits . Conscious thoughts facilitate goal attainment by allowing people to set plans for their goals and energizing people toward desired, future outcomes ). Thoughts of the future can also sway behavior by exposing people to the potential consequences of their actions. For example, anticipation of regret can sway decisions . --- CONSIDERATION OF SOCIAL AND CULTURAL FACTORS Conscious thought also enables people to connect with others. It enables perspective taking, which enhances social coordination and negotiation outcomes . It also allows people to communicate effectively with others , which promotes cooperation in groups . Conscious thought likewise allows people to modify their behaviors to adhere to group expectations, norms, and laws, usually to the benefit of both the individual and the group. When people think about and explain their actions, group decisions and joint negotiation outcomes improve , and interaction partners become more cooperative, less hostile, and more trusting . Even absent any specific interaction partners, conscious thought generally promotes doing what is morally right . --- SELECTION FROM AMONG MULTIPLE ALTERNATIVE OPTIONS We propose that conscious thought is particularly useful for allowing people to consider multiple possible actions or outcomes. This is evident in counterfactual thinking. People often cannot help but reflect on how they might have behaved differently in the past. Such thinking can inspire new, improved strategies for later behavior . Consideration of alternative actions is also apparent in selfregulation and decision making. Hofmann et al. noted that explicit preferences and automatic impulses are often in conflict, and that explicit preferences are likely to guide behavior when people are free to reflect. In contrast, when conscious reflection is hindered, people are more impulsive and more likely to yield to external influences . Conscious thought thus promotes adopting non-automatic forms of responding. Pursuit of alternative responses is evident as well in sports. In almost every popular sport, researchers have found that the mental rehearsal of motor skills is nearly as beneficial for performance as physical practice . Thus, conscious mental practice improves skilled performance. Each of the above patterns suggests that conscious thought does indeed help cause behavior. In each case, the influence of conscious thought on action is mostly indirect. Conscious thought is generally not found to guide moment-to-moment actions. However, reflections on the past enable people to improve later behaviors, considerations of social or cultural information sway decisions in favor of more cooperative responses, and mental simulations of plans and skills can be used to reshape habits. These findings support the notion that conscious thought is slightly removed from present actions, but that it nevertheless provides influential input into behavior. --- CONCLUSION The past several decades of research in psychology have revealed some important limitations of conscious thought. Specifically, the findings suggest that conscious thought is not the direct controller of behavior that many assume it to be. We have argued nonetheless that it plays a crucial role in shaping human behavior. Our approach assumes that uniquely human capacities evolved to solve uniquely human challenges . Other animals interact with the physical environment without needing the capacity for conscious thought . Humans, however, face the unique challenge of striving in society and culture . We think that it is precisely for that purpose that conscious thought developed. In our review of the empirical research on conscious thought, we found numerous kinds of evidence in support of this view . The findings suggest that conscious thought affects behavior indirectly, by integrating information across time and from culture, so that multiple alternative behaviors-particularly socially adaptive ones-can be considered and an optimal action selected. We conclude that most or all of human behavior is likely a product of conscious and unconscious processes working together. The private daydreams, fantasies, and counterfactual thoughts that pervade everyday life are far from being a feckless epiphenomenon. We see these processes as the place where the unconscious mind assembles ideas so as to reach new conclusions about how best to behave, or what outcomes to pursue or avoid. Rather than directly controlling action, conscious thought provides the input from these kinds of mental simulations to the executive. Conscious thought offers insights about the past and future, socially shared information, and cultural rules. Without it, the complex forms of social and cultural coordination that define human life would not be possible. --- Conflict of Interest Statement: 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.

Humans enjoy a private, mental life that is richer and more vivid than that of any other animal. Yet as central as the conscious experience is to human life, numerous disciplines have long struggled to explain it. The present paper reviews the latest theories and evidence from psychology that addresses what conscious thought is and how it affects human behavior. We suggest that conscious thought adapts human behavior to life in complex society and culture. First, we review research challenging the common notion that conscious thought directly guides and controls action. Second, we present an alternative view-that conscious thought processes actions and events that are typically removed from the here and now, and that it indirectly shapes action to favor culturally adaptive responses. Third, we summarize recent empirical work on conscious thought, which generally supports this alternative view. We see conscious thought as the place where the unconscious mind assembles ideas so as to reach new conclusions about how best to behave, or what outcomes to pursue or avoid. Rather than directly controlling action, conscious thought provides the input from these kinds of mental simulations to the executive. Conscious thought offers insights about the past and future, socially shared information, and cultural rules. Without it, the complex forms of social and cultural coordination that define human life would not be possible.

I. INTRODUCTION The emergence of the Internet has changed the way of communication radically and, especially, the development of Web 2.0 applications has led to some extremely popular online social sites, such as Facebook [1], Flickr [2], YouTube [3], Twitter [4], LiveJournal [5], Orkut [6] and Xiaonei [7]. These sites provide a powerful means of sharing information, finding content and organizing contacts [8] for ordinary people. Users can consolidate their existing relationships in the real world through publishing blogs, photos, messages and even states. They also have a chance to communicate with strangers that they have never met on the other end of the world. Based on the development and prevalence of the Internet, online social sites have reformed the structure of the traditional social network to a new complex system, called the online social network, which attracts a lot of research interests recently as a new social media. Recent works about online social networks mainly focus on probing and collecting network topologies [8,9], structural analysis [8][9][10][11], user interactions [12][13][14] and content generating patterns [13,15]. At the same time, some concepts and methods of traditional social networks have also been introduced into current researches: The strength of ties is one of them. The strength of ties was first proposed by Granovetter in his landmark paper [16] in 1973, in which he thought the strength of ties could be measured by the relative overlap of the neighborhood of two nodes in the network. It was interesting that different from the common sense, he found that loose acquaintances, known as weak ties, were helpful in finding a new job [17]. This novel finding has become a hot topic of research for decades. In [18], a predictive model was proposed to map social media data to the tie strength. In [19], Onnela et al. gave a simple but quantified definition to the overlap of neighbors of nodes i and j as follows: w ij = c ij k i -1 + k j -1 -c ij , where c ij is the number of common acquaintances, k i and k j are the degrees of i and j, respectively. In this paper, we define w ij as the strength of the tie between i and j. The lower w ij is, the weaker the strength of tie between i and j is. As a social media, the core feature of online social networks is the information diffusion. However, the mechanism of the diffusion is different from traditional models, such as Susceptible-Infected-Susceptible , Susceptible-Infected-Recovered [20,21] and random walk [22][23][24]. At the same time, few works have been done to reveal the coupled dynamics of both the structure and the diffusion of online social networks [25,26]. To meet this critical challenge, in this paper, we aim to investigate the role of weak ties in the information diffusion in online social networks. By monitoring the dynamics of S = S<Smax nS 2 N , where n is the number of connected clusters with S nodes, and N is the size of the network, a phase transition was found in the mobile communication network during the removal of weak ties first [19]. We find that this phase transition is pervasive in online social networks, which implies that weak ties play a special role in the structure of the network. This interesting finding inspires us to investigate the role of weak ties in the information diffusion. To this end, we propose a model ID to characterize the mechanism of the information diffusion in online social networks and associate the strength of ties with the process of spread. Through the simulations on large-scale real-world data sets, we find that selecting weak ties preferentially to republish cannot make the information diffuse quickly, while the random selection can. Nevertheless, further analysis and experiments show that the coverage of the information will drop substantially during the removal of weak ties even for the random diffusion case. So we conclude that weak ties play a subtle role in the information diffusion in online social networks. We also discuss their potential use for the information diffusion control practices. The rest of this paper is organized as follows. Section II introduces the data sets used in this paper. In Section III, we study the structural role of weak ties. The model ID is proposed in Section IV, and the role of weak ties in the information diffusion is then investigated. Section V discusses the possible uses of weak ties in the control of the virus spread and the private information diffusion. Finally, we give a brief summary in Section VI. --- II. DATA SETS We use two data sets in this paper, i.e., YouTube and Facebook in New Orleans. YouTube is a famous video sharing site, and Facebook is the most popular online social site which allows users to create friendships with other users, publish blogs, upload photos, send messages, and update their current states on their profile pages. All these sites have some privacy control schemes which control the access to the shared contents. The data set of YouTube includes user-to-user links crawled from YouTube in 2007 [8]. The data set of Facebook contains a list of all the user-to-user links crawled from the New Orleans regional network in Facebook during December 29th, 2008 and January 3rd, 2009 [14]. In both two data sets, we treat the links as undirected. In these data sets, each node represents a user, while a tie between two nodes means there is a friendship between two users. In general, creating a friendship between two users always needs mutual permission. So we can formalize each data set as an undirected graph G, where V is the set of nodes and E is the set of ties. We use |V | to denote the size of the network, and |E| to denote the size of ties. Some characteristics of the data sets are shown in Table I. The Cumulative Distribution F unction of the strength of ties is shown in Fig. 1. As we know, online social networks are divided into two types: knowledge-sharing oriented and networking oriented [15]. For the data sets we use, YouTube belongs to the former, while Facebook belongs to the latter, both of which are scale-free networks. --- III. STRUCTURAL ROLE OF WEAK TIES In this section, we study the structural role of weak ties. As shown in Fig. 2a and Fig. 2c, we find a phase transition similar to the one in [19] in online social networks during the removal of weak ties first. This phase transition, however, disappears if we remove the strong ties first. Furthermore, it is also found in Fig. 2b and Fig. 2d that the relative size of giant con- respectively. f r is the fraction of removed ties. nected cluster , denoted by f GCC , shows different dynamics between the removals of weak ties first and strong ties first. We denote the critical fractions of the removed ties at the phase transition point by f c . It is interesting to note that f c = 0.753 for YouTube and f c = 0.890 for Facebook when S reaches the submit, which are very close to the case when f GCC ≈ 0. In the percolation theory, the existence of the above phase transition means that the network is collapsed, while the network is just shrinking if there is no phase transition when removing the ties [19]. So the above experiments tell us that weak ties play a special role in the structure of online social networks, which is different from the one strong ties play. In fact, they act as the important bridges that connect isolated communities. In what follows, we build a model that associates the weak ties with the information diffusion, to discuss the coupled dynamics of the structure and the information diffusion. --- IV. DIFFUSING ROLE OF WEAK TIES The information diffusing in online social networks includes blogs, photos, messages, comments, multimedia files, states, etc. Because of the privacy control and other features of online social sites, the mechanism of the in-formation diffusion in online social networks is different from traditional models, such as SIS, SIR and random walk. We start by discussing the procedure of information diffusion in online social networks. --- A. The Procedure of Information Diffusion The procedure of the diffusion in online social networks can be briefly described as follows: • The user i publishes the information I, which may be a photo, a blog, etc. • Friends of i will know I when they access the profile page of i or get some direct notifications from the online social site. We call this scheme as push. • Some friends of i, may be one, many or none, will comment, cite or reprint I, because they think that it is interesting, funny or important. We call this behavior as republish. • The above steps will be repeated with i replaced by each of those who have republished I. It is easy to find that the key feature of the information diffusion in online social networks is that the information is pushed actively by the site and only part of friends will republish it. Take Facebook as an example, in which News Feed and Live Feed are two significant and popular features. News Feed constantly updates a user's profile page to list all his or her friends' news in Facebook. The news includes conversations taking place between the walls of the user's friends, changes of profile pages, events, and so on [27]. Live Feed facilitates the users to access the details of the contents updated by News Feed. It is updated in a real-time manner after the user's login to the web [28]. In fact, News Feed aggregates the most interesting contents that a user's friends are posting, while Live Feed shows to the user all the actions his or her friends are taking in Facebook [29]. The feature of pushing and republishing we have discussed above is indeed more obvious in Twitter, in which all the words you post will be pushed immediately to your followers' terminals, including a PC or even a mobile phone, and then they can republish it if they like. However, in real-world situations, the trace of the information is hard to collect [25], especially for large-scale networks. So it is quite reasonable to build a model to characterize the mechanism and simulate the diffusion. --- B. The Model for Information Diffusion Based on the procedure described above, we propose a simple model ID, where α is the navigating factor and β represents the strength of the information. In this model, α determines how to select neighbors to republish the information, while β ∈ [0, 1] is a physical character of the information, which describes how interesting, novel, important, funny or resounding it is. The model is defined as follows: • Step 1: Suppose there comes information I. Set the state of all the nodes in V to σ 0 . The state σ 0 of a node means I is not known to it, otherwise the state is σ 1 . • Step 2: Randomly select a seed node i from the network. The degree of i is k i . Set i to σ 1 . It publishes the information I with strength equal to β at time T = 0. • Step 3: Increase the time by one unit, i.e., T = T + 1. Set each node in the neighborhood of i to σ 1 . Add i to the set of nodes that have published I, denoted by P . So P = P ∪ {i}. • Step 4: Calculate the number of nodes that will republish I in the next round: R i = k i β. • Step 5: Select one node j from the neighborhood of i with the probability [30] p ij = w α ij ki m=1 w α im . (4 ) If j is not in P , then add it to the set of nodes that will republish I in the next round, denoted by W . So W = W ∪ {j}. Repeat this step for R i times. • Step 6: For each node in W , execute from Step 3 to Step 5 recursively until W is null or all the nodes in V have known I. It is easy to find from Eq. that during the diffusion, the number of republishing nodes selected from the neighborhood of i is decided by k i and β. It is consistent with the real situation that the user with more friends tends to attract more other users to visit and republish the information. The more interesting or important the information is, the higher the chance that it will be republished. We use parameter α in Eq. to associate the diffusion with the strength of the ties, which means different values of α will lead to different selections of ties as paths for republishing information in the next round. In fact, when α = -1, weak ties are to be selected preferentially as paths for republishing. The selection is random when α = 0, and the strong ties will be selected with higher priority when α = 1. --- C. Results and Analysis We define the fraction of nodes with the state σ 1 as the coverage of I, denoted by C. Since it is found that only 1-2% friends will republish the information in Flickr [25], we let β = 0.01 in the simulations. Fig. 3 shows the numeric experimental results on Facebook and YouTube networks. As can be seen, C reaches the maximum when α = 0. In other words, compared with weak or strong ties, selecting the republishing nodes randomly from the neighborhood will make the information spread faster and wider. This is indeed out of our expectation, since previous studies show that weak ties can facilitate the information diffusion in social networks. To understand this, we further explore the process of the information diffusion in details. By Eq. , we can easily have 1/w ij = /c ij + k j /c ij -1. Assume that as k j increases, c ij increases proportionately, i.e., k j /c ij = const. Then given a node i and its neighbor node j, we have k j ↑⇒ c ij ↑⇒ 1/w ij ↓⇒ w ij ↑, and vice versa. This implies that a neighbor node of i tends to have a higher degree if it has a stronger strength of ties with i. Therefore, when selecting the republishing nodes for the next round from the neighborhood, different α will select nodes with different degrees preferentially. For example, when α = -1, the weak ties will be selected with higher priority, which means that the nodes with lower degrees will be selected preferentially. However, it is easy to learn from Eq. that, for the node with lower degree, the republishing nodes selected from its neighborhood will be less, which will eventually reduce the total number of republishing nodes and impede the information from further spreading in the network. As to the case of selecting strong ties preferentially, although it will tend to select the nodes with higher degrees to republish, the local trapping [19] will limit the scope of selected nodes into some local areas and make it harder to propagate the information further in the network. To validate the analysis above, we also observe the fraction of the nodes that have published I during the diffusion, denoted by f pub . As shown in Fig. 4, f pub increases more slowly when α = -1, and the time-varying properties of f pub are similar to those of C in Fig. 3 for different α values, respectively. We also monitor the fraction of the nodes that have published I in each hop away from the source node, denoted by f local . As shown in Fig. 5, when α = -1, f local decreases faster than other cases, in particular the α = 0 case. It means when α = -1, the number of republishing nodes selected from the neighborhood decreases sharply as the information spreading far away from the source, which agrees with our former analysis. As for the case of α = 1, f pub increases more and more slowly during the diffusion, because the nodes selected to republish are trapped in some local clusters. In other words, it is hard to find some new nodes to republish the information to the outer space. Based on the above results, we can conclude that selecting weak ties preferentially as the path to republish information cannot make it diffuse faster. However, this does not mean that weak ties play a trivial role in the information diffusion in online social networks, especially when we recall its special role in the network structure in Section III. Let α = 0 in ID, we compare the variation of C under the situation of removing weak ties first with that of removing strong ties first. As shown in Fig. 6, for the case of removing weak ties first, the coverage of the information decreases rapidly, e.g., from 0.8 to 0.4 in Facebook when the fraction of removed weak ties reaches about 0.4. This implies that weak ties are indeed crucial for the coverage of information diffusion in online social networks. To further study the effect of β, we conduct experiments with different β values, as shown in Fig. 7. As can be seen, no matter what the β value is, random selection is still the fastest mode for the information diffusion, although the gap tends to shrink with higher β values. It is also shown that when β grows, C will also rise for all α values. That is, the greater the strength of the information is, the more nodes will be attracted to republish it, and the wider it will spread in the network. Until now we can conclude that weak ties play a subtle role in the information diffusion in online social networks. On one hand, they are bridges that connect isolated communities and break through the trapping of information in local areas [19]. On the other hand, selecting weak ties preferentially as the path of republishing cannot make the information diffuse faster and wider. --- V. DIFFUSION CONTROL The growing popularity of the online social networks does not mean that it is safe and reliable. On the contrary, the virus spread and the private information diffusion have made it become a massive headache for IT administrators and users [31,32]. For example, "KooFace" is a Trojan Worm on Facebook, which spreads by leaving a comment on profile pages of the victim's friends to trap a click on the malicious link [33]. About 63% of system administrators worry that their employees will share too much private information online [34]. So as time goes by, it becomes more and more important and urgent to control the virus spread and the private information diffusion in online social networks. In the light of this, we can make use of the weak ties for the information diffusion control. That is, in the realworld practices, we can assume that the behavior of republishing information is random, i.e., α = 0. Then according to the results in Fig. 6, we can make the virus or the private information trapped in local communities by removing weak ties and stop them from diffusing further in the network. --- VI. SUMMARY Online social sites have become one of the most popular Web 2.0 applications in the Internet. As a new social media, the core feature of online social networks is the information diffusion. We investigate the coupled dynamics of the structure and the information diffusion in the view of weak ties. Different from the recent work [25], we do not focus on the trace collection and analysis of the real data flowing in the network. Instead, inspired by [19], we propose a model for online social networks and take a closer look at the role of weak ties in the diffusion. We find that the phase transition found in the mobile communication network exists pervasively in online social networks, which means that the weak ties play a special role in the network structure. Then we propose a new model ID, which associates the strength of ties with the diffusion, to simulate how the information spreads in online social networks. Contrary to our ex-pectation, selecting weak ties preferentially to republish cannot facilitate the information diffusion in the network, while the random selection can. Through extra analysis and experiments, we find that when α = -1, the nodes with lower degrees are preferentially selected for republishing, which will limit the scope of the distribution of republishing nodes in the following rounds. However, even for the random selection case, removal of the weak tie can make the coverage of the information decreases sharply, which is consistent with its special role in the structure. So we conclude that weak ties play a subtle role in the information diffusion in online social networks. On one hand, they play a role of bridges, which connect isolated communities and break through the trapping of information in local areas. On the other hand, selecting weak ties preferentially to republish cannot make the information diffuse faster in the network. For potential applications, we think that the weak ties might be of use in the control of the virus spread and the private information diffusion. --- I. INTRODUCTION The emergence of the Internet has changed the way of communication radically and, especially, the development of Web 2.0 applications has led to some extremely popular online social sites, such as Facebook [1], Flickr [2], YouTube [3], Twitter [4], LiveJournal [5], Orkut [6] and Xiaonei [7]. These sites provide a powerful means of sharing information, finding content and organizing contacts [8] for ordinary people. Users can consolidate their existing relationships in the real world through publishing blogs, photos, messages and even states. They also have a chance to communicate with strangers that they have never met on the other end of the world. Based on the development and prevalence of the Internet, online social sites have reformed the structure of the traditional social network to a new complex system, called the online social network, which attracts a lot of research interests recently as a new social media. Recent works about online social networks mainly focus on probing and collecting network topologies [8,9], structural analysis [8][9][10][11], user interactions [12][13][14] and * Electronic address: [email protected] content generating patterns [13,15]. At the same time, some concepts and methods of traditional social networks have also been introduced into current researches: The strength of ties is one of them. The strength of ties was first proposed by Granovetter in his landmark paper [16] in 1973, in which he thought the strength of ties could be measured by the relative overlap of the neighborhood of two nodes in the network. It was interesting that different from the common sense, he found that loose acquaintances, known as weak ties, were helpful in finding a new job [17]. This novel finding has become a hot topic of research for decades. In [18], a predictive model was proposed to map social media data to the tie strength. In [19], Onnela et al. gave a simple but quantified definition to the overlap of neighbors of nodes i and j as follows: w ij = c ij k i -1 + k j -1 -c ij , where c ij is the number of common acquaintances, k i and k j are the degrees of i and j, respectively. In this paper, we define w ij as the strength of the tie between i and j. The lower w ij is, the weaker the strength of tie between i and j is. As a social media, the core feature of online social networks is the information diffusion. However, the mechanism of the diffusion is different from traditional models, such as Susceptible-Infected-Susceptible , Susceptible-Infected-Recovered [20,21] and random walk [22][23][24]. At the same time, few works have been done to reveal the coupled dynamics of both the structure and the diffusion of online social networks [25,26]. To meet this critical challenge, in this paper, we aim to investigate the role of weak ties in the information diffusion in online social networks. By monitoring the dynamics of S = S<Smax nS 2 N , where n is the number of connected clusters with S nodes, and N is the size of the network, a phase transition was found in the mobile communication network during the removal of weak ties first [19]. We find that this phase transition is pervasive in online social networks, which implies that weak ties play a special role in the structure of the network. This interesting finding inspires us to investigate the role of weak ties in the information diffusion. To this end, we propose a model ID to characterize the mechanism of the information diffusion in online social networks and associate the strength of ties with the process of spread. Through the simulations on large-scale real-world data sets, we find that selecting weak ties preferentially to republish cannot make the information diffuse quickly, while the random selection can. Nevertheless, further analysis and experiments show that the coverage of the information will drop substantially during the removal of weak ties even for the random diffusion case. So we conclude that weak ties play a subtle role in the information diffusion in online social networks. We also discuss their potential use for the information diffusion control practices. The rest of this paper is organized as follows. Section II introduces the data sets used in this paper. In Section III, we study the structural role of weak ties. The model ID is proposed in Section IV, and the role of weak ties in the information diffusion is then investigated. Section V discusses the possible uses of weak ties in the control of the virus spread and the private information diffusion. Finally, we give a brief summary in Section VI. --- II. DATA SETS We use two data sets in this paper, i.e., YouTube and Facebook in New Orleans. YouTube is a famous video sharing site, and Facebook is the most popular online social site which allows users to create friendships with other users, publish blogs, upload photos, send messages, and update their current states on their profile pages. All these sites have some privacy control schemes which control the access to the shared contents. The data set of YouTube includes user-to-user links crawled from YouTube in 2007 [8]. The data set of Facebook contains a list of all the user-to-user links crawled from the New Orleans regional network in Facebook during December 29th, 2008 and January 3rd, 2009 [14]. In both two data sets, we treat the links as undirected. In these data sets, each node represents a user, while a tie between two nodes means there is a friendship between two users. In general, creating a friendship between two users always needs mutual permission. So we can formalize each data set as an undirected graph G, where V is the set of nodes and E is the set of ties. We use |V | to denote the size of the network, and |E| to denote the size of ties. Some characteristics of the data sets are shown in Table I. The Cumulative Distribution F unction of the strength of ties is shown in Fig. 1. As we know, online social networks are divided into two types: knowledge-sharing oriented and networking oriented [15]. For the data sets we use, YouTube belongs to the former, while Facebook belongs to the latter, both of which are scale-free networks. --- III. STRUCTURAL ROLE OF WEAK TIES In this section, we study the structural role of weak ties. As shown in Fig. 2a and Fig. 2c, we find a phase transition similar to the one in [19] in online social networks during the removal of weak ties first. This phase transition, however, disappears if we remove the strong ties first. Furthermore, it is also found in Fig. 2b and Fig. 2d that the relative size of giant con- respectively. f r is the fraction of removed ties. nected cluster , denoted by f GCC , shows different dynamics between the removals of weak ties first and strong ties first. We denote the critical fractions of the removed ties at the phase transition point by f c . It is interesting to note that f c = 0.753 for YouTube and f c = 0.890 for Facebook when S reaches the submit, which are very close to the case when f GCC ≈ 0. In the percolation theory, the existence of the above phase transition means that the network is collapsed, while the network is just shrinking if there is no phase transition when removing the ties [19]. So the above experiments tell us that weak ties play a special role in the structure of online social networks, which is different from the one strong ties play. In fact, they act as the important bridges that connect isolated communities. In what follows, we build a model that associates the weak ties with the information diffusion, to discuss the coupled dynamics of the structure and the information diffusion. --- IV. DIFFUSING ROLE OF WEAK TIES The information diffusing in online social networks includes blogs, photos, messages, comments, multimedia files, states, etc. Because of the privacy control and other features of online social sites, the mechanism of the in-formation diffusion in online social networks is different from traditional models, such as SIS, SIR and random walk. We start by discussing the procedure of information diffusion in online social networks. --- A. The Procedure of Information Diffusion The procedure of the diffusion in online social networks can be briefly described as follows: • The user i publishes the information I, which may be a photo, a blog, etc. • Friends of i will know I when they access the profile page of i or get some direct notifications from the online social site. We call this scheme as push. • Some friends of i, may be one, many or none, will comment, cite or reprint I, because they think that it is interesting, funny or important. We call this behavior as republish. • The above steps will be repeated with i replaced by each of those who have republished I. It is easy to find that the key feature of the information diffusion in online social networks is that the information is pushed actively by the site and only part of friends will republish it. Take Facebook as an example, in which News Feed and Live Feed are two significant and popular features. News Feed constantly updates a user's profile page to list all his or her friends' news in Facebook. The news includes conversations taking place between the walls of the user's friends, changes of profile pages, events, and so on [27]. Live Feed facilitates the users to access the details of the contents updated by News Feed. It is updated in a real-time manner after the user's login to the web [28]. In fact, News Feed aggregates the most interesting contents that a user's friends are posting, while Live Feed shows to the user all the actions his or her friends are taking in Facebook [29]. The feature of pushing and republishing we have discussed above is indeed more obvious in Twitter, in which all the words you post will be pushed immediately to your followers' terminals, including a PC or even a mobile phone, and then they can republish it if they like. However, in real-world situations, the trace of the information is hard to collect [25], especially for large-scale networks. So it is quite reasonable to build a model to characterize the mechanism and simulate the diffusion. --- B. The Model for Information Diffusion Based on the procedure described above, we propose a simple model ID, where α is the navigating factor and β represents the strength of the information. In this model, α determines how to select neighbors to republish the information, while β ∈ [0, 1] is a physical character of the information, which describes how interesting, novel, important, funny or resounding it is. The model is defined as follows: • Step 1: Suppose there comes information I. Set the state of all the nodes in V to σ 0 . The state σ 0 of a node means I is not known to it, otherwise the state is σ 1 . • Step 2: Randomly select a seed node i from the network. The degree of i is k i . Set i to σ 1 . It publishes the information I with strength equal to β at time T = 0. • Step 3: Increase the time by one unit, i.e., T = T + 1. Set each node in the neighborhood of i to σ 1 . Add i to the set of nodes that have published I, denoted by P . So P = P ∪ {i}. • Step 4: Calculate the number of nodes that will republish I in the next round: R i = k i β. • Step 5: Select one node j from the neighborhood of i with the probability [30] p ij = w α ij ki m=1 w α im . (4 ) If j is not in P , then add it to the set of nodes that will republish I in the next round, denoted by W . So W = W ∪ {j}. Repeat this step for R i times. • Step 6: For each node in W , execute from Step 3 to Step 5 recursively until W is null or all the nodes in V have known I. It is easy to find from Eq. that during the diffusion, the number of republishing nodes selected from the neighborhood of i is decided by k i and β. It is consistent with the real situation that the user with more friends tends to attract more other users to visit and republish the information. The more interesting or important the information is, the higher the chance that it will be republished. We use parameter α in Eq. to associate the diffusion with the strength of the ties, which means different values of α will lead to different selections of ties as paths for republishing information in the next round. In fact, when α = -1, weak ties are to be selected preferentially as paths for republishing. The selection is random when α = 0, and the strong ties will be selected with higher priority when α = 1. --- C. Results and Analysis We define the fraction of nodes with the state σ 1 as the coverage of I, denoted by C. Since it is found that only 1-2% friends will republish the information in Flickr [25], we let β = 0.01 in the simulations. Fig. 3 shows the numeric experimental results on Facebook and YouTube networks. As can be seen, C reaches the maximum when α = 0. In other words, compared with weak or strong ties, selecting the republishing nodes randomly from the neighborhood will make the information spread faster and wider. This is indeed out of our expectation, since previous studies show that weak ties can facilitate the information diffusion in social networks. To understand this, we further explore the process of the information diffusion in details. By Eq. , we can easily have 1/w ij = /c ij + k j /c ij -1. Assume that as k j increases, c ij increases proportionately, i.e., k j /c ij = const. Then given a node i and its neighbor node j, we have k j ↑⇒ c ij ↑⇒ 1/w ij ↓⇒ w ij ↑, and vice versa. This implies that a neighbor node of i tends to have a higher degree if it has a stronger strength of ties with i. Therefore, when selecting the republishing nodes for the next round from the neighborhood, different α will select nodes with different degrees preferentially. For example, when α = -1, the weak ties will be selected with higher priority, which means that the nodes with lower degrees will be selected preferentially. However, it is easy to learn from Eq. that, for the node with lower degree, the republishing nodes selected from its neighborhood will be less, which will eventually reduce the total number of republishing nodes and impede the information from further spreading in the network. As to the case of selecting strong ties preferentially, although it will tend to select the nodes with higher degrees to republish, the local trapping [19] will limit the scope of selected nodes into some local areas and make it harder to propagate the information further in the network. To validate the analysis above, we also observe the fraction of the nodes that have published I during the diffusion, denoted by f pub . As shown in Fig. 4, f pub increases more slowly when α = -1, and the time-varying properties of f pub are similar to those of C in Fig. 3 for different α values, respectively. We also monitor the fraction of the nodes that have published I in each hop away from the source node, denoted by f local . As shown in Fig. 5, when α = -1, f local decreases faster than other cases, in particular the α = 0 case. It means when α = -1, the number of republishing nodes selected from the neighborhood decreases sharply as the information spreading far away from the source, which agrees with our former analysis. As for the case of α = 1, f pub increases more and more slowly during the diffusion, because the nodes selected to republish are trapped in some local clusters. In other words, it is hard to find some new nodes to republish the information to the outer space. Based on the above results, we can conclude that selecting weak ties preferentially as the path to republish information cannot make it diffuse faster. However, this does not mean that weak ties play a trivial role in the information diffusion in online social networks, especially when we recall its special role in the network structure in Section III. Let α = 0 in ID, we compare the variation of C under the situation of removing weak ties first with that of removing strong ties first. As shown in Fig. 6, for the case of removing weak ties first, the coverage of the information decreases rapidly, e.g., from 0.8 to 0.4 in Facebook when the fraction of removed weak ties reaches about 0.4. This implies that weak ties are indeed crucial for the coverage of information diffusion in online social networks. To further study the effect of β, we conduct experiments with different β values, as shown in Fig. 7. As can be seen, no matter what the β value is, random selection is still the fastest mode for the information diffusion, although the gap tends to shrink with higher β values. It is also shown that when β grows, C will also rise for all α values. That is, the greater the strength of the information is, the more nodes will be attracted to republish it, and the wider it will spread in the network. Until now we can conclude that weak ties play a subtle role in the information diffusion in online social networks. On one hand, they are bridges that connect isolated communities and break through the trapping of information in local areas [19]. On the other hand, selecting weak ties preferentially as the path of republishing cannot make the information diffuse faster and wider. --- V. DIFFUSION CONTROL The growing popularity of the online social networks does not mean that it is safe and reliable. On the contrary, the virus spread and the private information diffusion have made it become a massive headache for IT administrators and users [31,32]. For example, "KooFace" is a Trojan Worm on Facebook, which spreads by leaving a comment on profile pages of the victim's friends to trap a click on the malicious link [33]. About 63% of system administrators worry that their employees will share too much private information online [34]. So as time goes by, it becomes more and more important and urgent to control the virus spread and the private information diffusion in online social networks. In the light of this, we can make use of the weak ties for the information diffusion control. That is, in the realworld practices, we can assume that the behavior of republishing information is random, i.e., α = 0. Then according to the results in Fig. 6, we can make the virus or the private information trapped in local communities by removing weak ties and stop them from diffusing further in the network. --- VI. SUMMARY Online social sites have become one of the most popular Web 2.0 applications in the Internet. As a new social media, the core feature of online social networks is the information diffusion. We investigate the coupled dynamics of the structure and the information diffusion in the view of weak ties. Different from the recent work [25], we do not focus on the trace collection and analysis of the real data flowing in the network. Instead, inspired by [19], we propose a model for online social networks and take a closer look at the role of weak ties in the diffusion. We find that the phase transition found in the mobile communication network exists pervasively in online social networks, which means that the weak ties play a special role in the network structure. Then we propose a new model ID, which associates the strength of ties with the diffusion, to simulate how the information spreads in online social networks. Contrary to our ex-pectation, selecting weak ties preferentially to republish cannot facilitate the information diffusion in the network, while the random selection can. Through extra analysis and experiments, we find that when α = -1, the nodes with lower degrees are preferentially selected for republishing, which will limit the scope of the distribution of republishing nodes in the following rounds. However, even for the random selection case, removal of the weak tie can make the coverage of the information decreases sharply, which is consistent with its special role in the structure. So we conclude that weak ties play a subtle role in the information diffusion in online social networks. On one hand, they play a role of bridges, which connect isolated communities and break through the trapping of information in local areas. On the other hand, selecting weak ties preferentially to republish cannot make the information diffuse faster in the network. For potential applications, we think that the weak ties might be of use in the control of the virus spread and the private information diffusion.

As a social media, online social networks play a vital role in the social information diffusion. However, due to its unique complexity, the mechanism of the diffusion in online social networks is different from the ones in other types of networks and remains unclear to us. Meanwhile, few works have been done to reveal the coupled dynamics of both the structure and the diffusion of online social networks. To this end, in this paper, we propose a model to investigate how the structure is coupled with the diffusion in online social networks from the view of weak ties. Through numerical experiments on large-scale online social networks, we find that in contrast to some previous research results, selecting weak ties preferentially to republish cannot make the information diffuse quickly, while random selection can achieve this goal. However, when we remove the weak ties gradually, the coverage of the information will drop sharply even in the case of random selection. We also give a reasonable explanation for this by extra analysis and experiments. Finally, we conclude that weak ties play a subtle role in the information diffusion in online social networks. On one hand, they act as bridges to connect isolated local communities together and break through the local trapping of the information. On the other hand, selecting them as preferential paths to republish cannot help the information spread further in the network. As a result, weak ties might be of use in the control of the virus spread and the private information diffusion in real-world applications.

Introduction Internalized Homonegativity is defined by Ross and colleagues as the internalization of negative attitudes and assumptions about homosexual people by homosexual people themselves . More general definitions such as negative attitudes and assumptions about sexual minority individuals by sexual minorities themselves may be used, but it is unclear whether there is sufficient common ground in measurement dimensions between IH in gay men and lesbians, or trans individuals, or even between gay/homosexual and bisexual men, to allow for broader definitions to be psychometrically useful. Previous research has shown the relationships of IH with distrust and loneliness , the use of illegal substance and alcohol consumption , defense mechanisms such as rationalization, denial, and identification with the aggressor , avoidance of HIV testing , decrease of condom use , and commercial sex . As Ross and Rosser and Currie et al. affirmed, IH has a central role in working with health related risk factors of nonheterosexual populations, especially men . Given increasing cross-cultural research on IH, and the rise in use of Internet platforms which often require shorter measures to retain participants, it is important to establish the stability of short IH measures across cultural and demographic parameters in gay and bisexual men. This paper reports on a study investigating the structure and structural invariance by age, education, state of residence, legal climate, and gay versus bisexual orientation, of a short IH measure. In this paper, we use the term "homosexual" as a gender-neutral adjective to describe identity or behavior, or discrimination against these, but in some of the 38 countries we surveyed in Europe, many men describe their identity as homosexual men . The term "gay" may be taken to refer to the western lifestyle of the same name but not anything that would resemble their existence or identity. "Homosexual" man and its translations were terms also used in the EMIS questionnaire , and rather than impose what may be considered an alien or Americo-colonial term, not necessarily synonymous with homosexual, and characterized by an English-language loan-word, we used a term that was understood and spoken by many of the men themselves. In this paper we also use the term LGBQ+ to describe sexual orientation, and the term MSM to describe homosexual behavior. Multiple investigators have attempted to develop IH scales to capture the dimensions of Internalized Homonegativity . The Nungesser Homosexual Attitudes Inventory was the most widely used scale to measure IH. This 34-item instrument consists of three subscales: Self, Other, and Disclosure. The psychometric properties of NHAI were evaluated as good with a coefficient alpha of 0.94 for the entire scale . However, as this scale was constructed 30 years ago, its validity has been questioned given large societal changes and the increasing acceptance of LGBQ+ individuals in the Western world. In addition, some of items were measures of antecedents or consequences of IH, such as the items "I do not think I will be able to have a long-term relationship with another man" and "If others knew of my homosexuality, I would not be afraid that they would see me as being effeminate" . Mayfield developed the Internalized Homonegativity Inventory instrument which consisted of 23 items comprising three factors, namely, Personal Homonegativity, Gay Affirmation, and Morality of Homosexuality. Although the scale obtained a good internal consistency with a Cronbach's alpha of 0.91 for the entire scale, some items such as "Sometimes I feel that I might be better off dead than gay" appeared extreme and overt in their assessment . Extreme items were possibly the reason for the skewed distribution of scores reported in the original study . Among the IH scales, the Reaction to Homosexuality Scale with 26 items loading on four factors was considered as a more sensitive measure of IH . However, several items of RHS only measured the constructs conceptually relating to IH. For example, the items "I worry about becoming unattractive," "Discrimination against gay people is still common," and "Most of my friends are homosexual" did not directly address IH. In addition, the scale was relatively long, making it difficult to include in surveys and possibly leading to missing data . In 2004, Currie and coworkers revised the RHS to overcome some of its limitations. This revised measure consisted of 12 items with three factors: "public identification as gay," "sexual comfort with gay men," and "social comfort with gay men" . Although this scale greatly decreased the number of items, the same problems were present as in the original RHS scale, that some items only indirectly measured IH through conceptually related factors . In addition, Currie et al. did not analyze the invariance of IH structure across population strata, which left the questions about the external validity of this measure open. These issues inhibited the application of this revised measurement in IH research. In 2010, another revised version of the RHS developed by Smolenski et al., overcame these two problems . This revised IH measure consisted of eight items loading on three factors: "social comfort with gay men," "public identification as gay," and "personal comfort with a gay identity" . This short form of the IH scale showed a good reliability score and good fit indices in both training and validation datasets. This latent IH structure was also validated to be consistent in the goodness of fit across population strata of race/ethnicity and languages in a U.S. selfidentified Latino MSM population. Its validity also was also confirmed in a Ugandan MSM population . In these psychometric analyses, Smolenski and Smolenski et al. argued that there was limited psychometric benefit of including one item, "Obviously effeminate homosexual men make me feel uncomfortable." Comparing comparability of the English and Spanish versions, Smolenski et al. removed this item for having a cross-loading with the Personal Comfort with a Gay Identity factor, which suggested low discriminatory ability of the item, reducing the 8-item scale to 7 items. With an urgent need of IH research in developing a standard IH scale that is relevant internationally, SIHS should be further confirmed in MSM populations of multiple countries. SIHS was used in the European MSM Internet Survey , the largest MSM survey to date. EMIS covered 38 countries, was disseminated in 25 languages, and included 174,209 participants . This study thus provides an opportunity to confirm the SIHS in a very large and diverse sample of MSM. In addition to validating the SIHS in pan-European data, it was necessary to explore whether this measure captured the same latent variables across population strata. Without achieving the minimum requirements of measurement invariance, the IH study needed to perform under specific circumstances of IH structure for each subsample . Given the wide differences in social norms and prejudice against gay/homosexual people in European countries, researchers wanted to explore the measurement non-invariance across "homosexual discrimination" country clusters which were derived using clustering analysis . This will determine if IH is dimensionally similar in high, medium and low homonegative cultures and thus whether it is valid to compare IH scores between settings which range from liberal to reactionary in their response to gay/homosexual people. Assessment of measurement invariance of age strata was also the researchers' interest. Ross and colleagues reported an association between IH and age in EMIS data . Lingiardi, Biocco, and Nardelli also found that IH decreased significantly with age. The exploration of differences of IH measure in age strata was considered one important demographic dimension to explore as gay men probably increasingly accepted their sexual orientation after time. We additionally investigated measurement non-invariance as a function of education due to cultural attitudes about gay men. Higher educated homosexual men were more likely to live in environments and communities in which LGBQ+ people were less stigmatized. They themselves probably had less internalized homophobia due to more exposure to information on homosexuality and supportive social and legal contexts. Because of the need to confirm the appropriateness of SIHS in an international MSM sample such as EMIS, and the necessity to evaluate the measurement equality by "homosexual discrimination" country groups, and by age and education strata, we proposed a study with three aims: confirm the structure of the SIHS developed by Smolenski, 2009; assess the measurement invariance by country clusters defined by level of homosexual discrimination , age, and education strata; and compare the 8-item version with the 7-item version proposed by Smolenski and Smolenski et al. , extending that comparison from the Spanish-English comparison of Smolenski to the other demographic variables of age, education, and liberal-moderate-conservative state residence. The overall goal of this study was to demonstrate the validity of SIHS scale in a very large MSM data set. --- Methods The European MSM Internet Survey was carried out by a large network of European organizations, led by Robert-Koch-Institute and Sigma Research , with institutional review board approval through the University of Portsmouth, England. From June through August 2010, the study was promoted via non-governmental organizations in each participating country, and through invitations in gay social media and a wide variety of over 235 national websites for MSM. Five large dating sites sent instant messages: PlanetRomeo®, Manhunt/Manhunt Cares®, and Gaydar®, each of which has membership across Europe; Qguys® for countries within the Commonwealth of Independent States and the Baltic countries; and Qruiser® for Scandinavia. A core slogan was used to promote the survey, the English language version of which was "Be part of something huge!" The study's welcome webpage gave potential participants an option of 25 languages. Upon selection of language, the study website described the research in the chosen language, and eligible volunteers were routed to the survey questions. Eligible participants were men who were legally of age to have consensual sex with men in their country of residence and who were attracted to men and/or had sex with men. This included men who self-identified as homosexual, gay, bisexual, or heterosexual. Additionally, the men needed to live in Europe and declare that they had read and understood the aim of the study. Respondents were not compensated for their participation; no IP address was recorded. The EMIS methods are described in detail elsewhere . The sample selection for this analysis is based on 3 exclusion criteria: Due to a translation error, the Spanish language questionnaire was missing the first IH item "Obviously effeminate homosexual men make me feel uncomfortable" ; therefore all respondents who answered the questionnaire in Spanish were excluded . Answers from Spain are thus based solely on respondents living in Spain but using a different language than Spanish. Respondents with missing answers to this first item or any of the other 7 IH items were also excluded. In contrast to previous implementations of the SIHS, respondents' missing answers include the additional answer option "does not apply to me," which was added because the EMIS network thought it would be odd to ask men if they felt comfortable in gay bars when living in a country where gay bars do not exist, based on the EMIS piloting phase. The proportion of missing answers ranged from 12.6% in English to 38.1% in Polish; and from 12.5% in West Europe to 27.8% in the Eastern part of Central Europe Trans respondents as well as men with no evidence of sexual attraction to men were also excluded. The final analytic sample was 130,718. Selected demographics are provided in Table 1. --- Measures Internalized Homonegativity -All eight items were measured by a 7-point Likert-type scale from "strongly disagree" to "strongly agree." Item 1 and item 3 were reverse-coded. All items were scaled to show an increase in IH with an increased manifest score. "Homosexual Discrimination" country clusters -38 countries were divided into three groups: 12 "conservative" countries, 17 "moderate" countries, and 9 "liberal" countries by clustering analysis. This clustering analysis was performed and reported by Ross, Berg, et al., 2013, based These three country clusters were then used to test whether SIHS had the same measurement characteristics across the three politically disparate country clusters. The list of countries in each group is displayed in Table 1. --- Education was measured by using the 1997 version of the International Standardized Classification of Educational Degrees levels. The median ISCED level was 5 , which was used to divide the analytic sample into two groups based on education level in multi-group invariance analysis. --- Analyses The analyses were conducted by using Mplus 7.11 and SPSS V.19 on the 38-country dataset with 130,718 observations. We randomly divided the sample into halves: a training sample and a validation sample. Confirmatory factor analysis was used for training dataset to confirm the validity of the SIHS developed by Smolenski . Maximum Likelihood with the robust standard errors and chi square estimators was used because of the non-normality of the eight scale items. We assessed the goodness of fit by using fit indices Comparative Fit Index , Tucker-Lewis Index , and the Root Mean Square Error of Approximation . We considered that a model had a good fit or acceptable fit where CFI and TLI are larger than 0.95 or 0.90, respectively, and RMSEA is less than 0.08 or 0.05 . Because the chi-square goodness of fit tests are prone to a high type 1 error rate when sample size is large, these tests were not considered in fit assessment of measurement models . We estimated a series of nested multi-group models to test for measurement and structural invariance across subgroups of respondents defined by "Homosexual Discrimination" country clusters, age, and education. The procedure of the measurement invariance tests has been described in several reports elsewhere . In brief, the first level of invariance, configural invariance, required only the same number of factors and the same loading patterns across groups. The second level of invariance, metric invariance, constrained the equality of factor loadings in all groups. To assess the third level, scalar invariance, the item intercepts were constrained to the equality of intercepts across all groups. We also tested strict invariance by constraining the invariance of residuals and residual covariance. Lastly, we assessed the invariance of second order factor loadings following the recommendation of Byrne & Stewart . This latter approach is important because measurement equivalence is of particular concern in cross-cultural research whereby assessment may be based on a translated version of the original instrument. For this reason, we did not want to prejudge whether differences were due to true attitudinal differences or, rather, to psychometric differences related to the item responses . We repeated all analyses for the 7-item version of the SIHS suggested by Smolenski et al. . Due to the sensitivity of the large sample size to the likelihood ratio test, we did not use this test to identify whether the more restricted model has worse fit than the less restricted model. We applied the recommendations of Cheung & Rensvold on the change of CFI and RMSEA estimates between nested and comparison models. --- Results Table 1 depicts the demographic characteristics of the EMIS sample, as well as the mean IH score per country. Using a convenience sampling method, the analytic sample data from 38 countries was different across promoted countries in sample size , in median age , and in percent with tertiary education . The mean IH score also varied from 1.21 in the Netherlands to 2.57 in Bulgaria. Table 2 presents the means, standard deviations, standardized coefficients, and standard errors of standardized coefficients of the eight scale items. As noted earlier, item 1 and item 3 were reverse coded to be on a consistent scale with the other items. The means of the eight items range from 1.50 to 4.29 . These eight items loaded into three factors "Social comfort with gay men" , "Public identification as gay" , and "Personal comfort with a gay identity" . The indicators loaded strongly on the common factors, with the lowest pattern coefficient 0.36 , and the highest pattern coefficient 0.84 . The standardized loading factors of three common factors SC, PUBID, and PC on the second-factor variable IH are also high . The correlations between items were from low to moderate. Figure 2 describes the confirmatory factor model estimated using the training dataset. This model had a good fit, with CFI=0.96, TLI=0.93, and RMSEA=0.06. This model had a coefficient of internal consistency of 0.77, which indicated acceptable reliability of this scale. This factor model also had an acceptably good fit in the validation sample . Cross-validation of this final model was confirmed by testing for measurement invariance across the training and validation samples . All of measurement invariance tests including configural invariance, metric invariance, scalar invariance, residual invariance, and second factor loading invariance between the training sample and validation sample were satisfied when the ΔCFI and ΔRMSEA were under the cutoff points . As we employed the estimator MLM, not ML, for factor analysis, the chi-square value of the configural model was obtained as the approximation, instead of the accuracy, of the sum of the subgroups' chi-square values. The final factor model was also tested for invariance across the three country clusters . The factor model had a reasonable fit in both "liberal" country clusters" and "moderate" country cluster . However, this model had a somewhat poorer fit in the "conservative" country cluster, with CFI=0.94, TLI=0.88, and RMSEA=0.07. In the subsample "conservative" country cluster, adding the correlation between I1 and I3 greatly improves the goodness of fit of this model . Once acceptable models were developed for each of the country clusters, measurement invariance was assessed. The models imposing configural invariance and metric invariance showed acceptable fit . However, scalar invariance was not confirmed. According to the CFI difference, the model in which all items' intercepts were constrained to equality across groups showed worse fit compared with the less restricted metric invariance model . Freeing the intercepts to vary across groups for items 1, 2, and 3 resulted in acceptable fit for the model based on absolute fit indices as well as difference in indices. Constraining all residuals except the one for item 3 resulted in acceptable fit across country clusters. As the CFA model had a second ordered structure, we also constrained the second order factor loadings which were shown to be invariant across subpopulations. Using the 7-item model did not alter the finding, with the exception of in the 7-item structure; it was found that factor PC is correlated with PUBID . The confirmatory factor model was also applied to the various age and education groups . Except for the variance of the intercepts of item 4 and item 8 between two groups of age , the measurement invariance tests result in adequate to good fit. This result showed that the intercepts of item 4 and item 8 vary between younger MSM and older MSM, indicating partial measurement invariance. Between the subgroups determined by the education variable, the factor model was confirmed to be invariant between the lower educated MSM population and the higher educated MSM population. Table 6 describes the confirmatory factor model's application to the gay versus bisexual samples. When the measurement invariance tests for both 8-item and 7-item structures were performed across two groups of gay and bisexual men, the intercepts of most items were non-invariant. Between gay and bisexual groups, there were differences in the levels of comfort in being at gay bars, being seen in public with an obviously gay person, and discussing homosexuality in a public situation. The levels of the two group's views that homosexuality was morally acceptable, and wishes to change their own sexual orientations, were also different. --- Discussion In this research, we confirmed the validity of the second order factor model developed by Smolenski et al. , andRoss, Rosser, et al. . The SIHS contained eight items which loaded on three first order factors "Social comfort with gay man" , "Public identification as gay" , and "Personal comfort with a gay identity" . There was a second order general factor, suggesting a single higher-order dimension we have labelled "Internalized Homonegativity". This psychometric scale was used in the EMIS dataset, which contains data from 38 European countries. Comparison of the 8-item scale and the 7-item scale indicated that the 7-item scale performed as well as the 8-item scale, confirming the removal of one item as suggested by Smolenski et al. . We recommend using the 7-item scale and treating it as a continuous variable. While we anticipated some differences in the factorial structure of IH across three "Homosexual Discrimination" country clusters, we only identified non-invariance in the intercepts of three items of the factor "Social comfort with gay men" and these differences were fairly small. On the basis of difference in homosexual discrimination levels of country clusters, the inequalities in the baseline conditions of items "Obviously effeminate homosexual men make me feel uncomfortable," "I feel comfortable in gay bars," and "Social situations with gay men make me feel uncomfortable" were plausible. In some of the European countries, especially in Eastern ones, the gay bars might not even exist, or even publicly appearing as gay men might lead to arrest, possibly leading to the difference in gay men's comfort to expose their sexual interests. Regarding the strict inequality, as the residual invariance is considered too strict in most situations, we considered that the partial measurement invariance in the residuals of item 3 was very minor. As noted previously, the only non-invariance between two populations of younger and older populations were two intercepts of item 4, "I feel comfortable being seen in public with an obviously gay person" and item 8 "Even if I could change my sexual orientation, I wouldn't." These differences are explainable as after a number of years, the gay men probably become more self-accepting about their sexuality as they met more gay men and received more social support. Therefore, older MSM might be more comfortable being seen in public and less desirous of changing their sexual attraction. In addition, while we expected that different gay men's education resulted in differences in internal and external discrimination against homosexual identity or behavior, we identified the complete measurement invariance in IH latent between lower educated and higher educated MSM. Findings comparing the gay with the bisexual group, however, were less clear, and suggest that the SIHS may not adequately cover differences in sexual minority status between homosexually/gay and bisexually-identified men in terms of internalization of sexual minority status. Five of the seven items in the scale reflected non-invariance between the groups, and these data strongly suggest that internalization of a bisexual minority status is conceptually different from a gay man's minority status, at least in terms of the items that might capture this, and their psychometric properties. Qualitative research with bisexual men to describe the internalized stigma associated with bisexuality is needed to better understand the nature of internalized biphobia. As in the recommendations by Byrne, Shavelson, and Muthén , full scalar invariance was not required for further tests of invariance and substantive analysis. They indicated that full scalar invariance was not necessary for further assessment of latent mean invariance. As in this study we did not aim to conduct tests to compare latent means across subsamples, the full invariance of intercepts was not required. Therefore, although some non-invariances in IH's CFA model appeared, either across country clusters or across population strata of age, we suggest that this scale could be used in pluralistic populations without introducing bias. This research had some advantages. First, the self-completion internet-based survey was the most appropriate design for this study for several reasons: this study design recruited a large sample of a "hidden" population of MSM over a large geographic area; this study design was convenient for respondents as they were able to answer the questions on their own schedule and privately. The subjects could start the survey at one time, then stop and continue later; this study design greatly reduced the cost and time for data collection . EMIS recruited 174,209 subjects in little more than two months with a limited cost. Second, the study analytic applied the latent variable analysis with multi-group models which had the capacity to demonstrate the appropriateness of this scale in pluralistic populations. Beside advantages, there were several limitations in this investigation. Some of disadvantages came from the survey design: the study population was clearly restricted to those with access to a computer and the internet. This population tends to be younger, more educated, and urban , as has been previously shown by Ross, Månsson, Daneback, Cooper, & Tikkanen, 2005; despite its size, the study population is not representative of MSM in Europe. Besides the study design, the study analytic sample included some disadvantages. First, a part of study population contained missing values in IH items and we had to rely on the available valid data. While the results were in agreement with our hypotheses and in previous researches, we could not draw on whole population study, but only on a large subsample. Second, one factor included only two indicators, which might lead to a lower reliability in the "Public identification as gay" factor. The data were collected in 2010 and it is likely that many Western societies have moved forward since then and become more accepting of gay/homosexual or bisexual men, perhaps limiting generalizability. Finally, the exclusion of the Spanish language sample may have reduced the heterogeneity of the sample. This is the first time multi-group models were adopted to investigate whether the factorial structure of IH was invariant across different populations of MSM, using the large EMIS sample. This study confirmed the validity of the SIHS in 38 European countries, with only minor differences across the three "homosexual discrimination" country clusters or across subgroups of age and education. In addition to conclusions in studies in the U.S. and in Uganda, the SIHS was shown to be appropriately stable in multi-populations in Europe. While this scale can be further investigated in other populations to identify the extent to which the SIHS is a standard measure for Internalized Homonegativity, it shows promise as a stable and psychometrically valid 7-item measure across homosexual discrimination levels, age and education. Item 1: Obviously effeminate homosexual men make me feel uncomfortable ; Item 2: I feel comfortable in gay bars; Item 3: Social situations with gay men make me feel uncomfortable; Item 4: I feel comfortable being seen in public with an obviously gay person; Item 5: I feel comfortable discussing homosexuality in a public situation; Item 6: I feel comfortable being a homosexual man; Item 7: homosexuality is morally acceptable to me; Item 8: even if I could change my sexual orientation, I wouldn't; SC: Social comfort with gay men; PUBID: Public identification as gay; PC: Personal comfort with a gay identity; IH: Internalized Homonegativity --- Formatted: --- Williamson, I. R. . Internalized homophobia and health issues affecting lesbians and gay men. Health Education Research, 97-107. doi:10.1093 : change in the Satorra-Bentler corrected chi-square; Δdf: change in the degree of freedom; p: p-value for the likelihood ratio test between nested models; CFI: comparative fit index; TLI: Tucker-Lewis index; RMSEA: root mean squared error of approximation; Accept: the nested model doesn't have lesser fit than the comparison model; Reject: the nested model has lesser fit than the comparison model; ISCED: the International Standardised Classification of Educational Degrees (0: Pre-primary education; 1: Primary education or first stage of basic education; 2: Lower secondary education or second stage of basic education; 3: Upper secondary education; 4: Post-secondary non-tertiary education; 5: First stage of tertiary education; 6: Second stage of tertiary education.

Internalized Homonegativity (IH) is the internalization of negative attitudes and assumptions about homosexual people by homosexual people themselves. To measure IH, Smolenski, Diamond, Ross, and Rosser (2010), and Ross, Rosser, and Smolenski (2010), revised The Reactions to Homosexuality Scale (RHS) to develop the Short Internalized Homonegativity Scale (SIHS) with 8 items. Using the European Men-who-have-sex-with-men Internet Survey (EMIS) data with an analytic sample of 130,718 gay and bisexual men in 38 European countries, we confirmed the validity of SIHS scale in both training and validation data, in strata of Ross et al. ( 2013)'s three "homosexual discrimination" country clusters, of age, and of education level. However, the performance was less adequate in comparison of gay versus bisexually-identified individuals. The latent SIHS structure contained only minor variations across these three strata. The 7-item scale performed as well as the 8-item scale. SIHS is a promising candidate for standard IH measures, which is invariant across cultural, age, and educational strata.

outside of marriage, both parents experience a nonmarital birth. But if that relationship ends, mothers and fathers may take very different paths, and these differences may result in differential patterns of subsequent childbearing and childrearing. In this paper, we take advantage of newly available data on men's family formation from the 2002 National Survey of Family Growth to compare men's and women's family formation after a first nonmarital birth, focusing on fertility outcomes. Describing the contexts in which subsequent children are born is necessary to understand the long-term consequences of nonmarital fertility. Recent policy initiatives have focused on marriage as an important step toward improving parent and child outcomes for children conceived outside of marriage. Married-couple households are economically better off than households headed by single parents, and marriage is more stable than either cohabiting or noncoresidential relationships, though the benefits of marriage are less clear-cut when parents marry someone other than the child's biological parent. Not only is there evidence suggesting that people with children from a prior relationship are less likely to repartner , but the stability of subsequent unions may also be affected. Existing ties with the previous partner can destabilize marriage with a current partner; conversely, a parent's marriage may disrupt children's relationship with the nonresidential parent. Still, existing evidence suggests that children fare better in married stepfamilies than cohabiting stepfamilies . Thus, having multiple children outside of marriage may amount to a compounding of disadvantage among already disadvantaged unmarried parents and their children. In addition, comparing men's and women's outcomes can shed light on the degree to which family formation outcomes reflect the causal influence of unmarried parenthood versus the process of selection into nonmarital fertility. Men and women may be subject to different forces of selection into nonmarital parenthood: these potential differences can be assessed through descriptive analysis of unmarried first-time parents to ascertain whether they share a general socioeconomic and demographic profile or if there are differences by gender. The experience of unmarried parenthood is also different for men and women. Since mothers generally retain physical custody of children, and nonresidential father involvement declines over time , mothers disproportionately bear the social burdens of unmarried parenting. Differences between mothers' and fathers' experience after a nonmarital birth that can be attributed to characteristics predating the birth suggest important influences of selection, while differences that persist after these characteristics are accounted for would highlight the importance of the experience of nonmarital parenthood for subsequent outcomes. In this paper, we study the occurrence and relationship context of second births following a nonmarital first birth. We use partnership formation to explain fertility differences because previous research points to the centrality of relationship status as a determinant of fertility after a nonmarital birth . Our analysis proceeds in two stages. We first examine parents' characteristics at birth and their subsequent fertility and family structure. This largely descriptive analysis fills a gap in the study of men's fertility by comparing unwed fathers to unwed mothers and allows us to assess the degree to which selection into nonmarital fertility operates in the same way for men and women. Next, to assess whether men and women appear to face different family formation conditions after the first birth, we examine subsequent births and their relationship context. We study the likelihood of having a second birth and analyze the link between relationship status at a nonmarital first birth and at subsequent births . We focus on fertility as an outcome because it is relatively easy to measure and is directly comparable across men and women. Although earlier survey research suggested that nonresidential and unmarried fathers tended to underreport children, the innovative design of the survey used in the present analysis situates men's fertility within relationships. This approach has been shown to increase reporting of male fertility, and a comparison of births reported in the NSFG with births from the vital statistics system suggests high quality male fertility data . We discuss the quality of male fertility data in more detail in the data and limitations sections of the paper. --- Characteristics of Single Mothers and Single Fathers An extensive literature is dedicated to describing the characteristics of women who bear their first child outside of marriage . For instance, we know that nonmarital births disproportionately occur to women who are younger , racial/ethnic minorities , and those from less advantaged backgrounds . Less is known about unmarried fathers. This knowledge gap is part of a larger neglect of men's family formation patterns, due primarily to the difficulties in collecting accurate information on men's union and especially fertility behaviors . Prior research has shown, for instance, that men tend to underreport their children, especially for nonmarital births and nonresidential children, when asked standard questions about past fertility . The few studies that do examine men reveal some clues about men who have children outside of marriage. Landry and Darroch Forrest find that fathers of children born outside of marriage are older than the mothers of these children, but it is not clear whether this age gap is significantly different from the age gap between married parents . A study of early fatherhood finds that African American and Hispanic men are more likely than non-Hispanic white men to have children by age 25, and men from disadvantaged family backgrounds also have elevated rates of early fatherhood . These patterns are similar to findings for early motherhood. However, young, unmarried, and childless women often partner with men who are older or who have prior family experiences, so research on young fathers may not fully capture the heterogeneity of unmarried fathers. Differences in the composition of unmarried parents may influence subsequent fertility and relationship formation. However, given high levels of homogamy in the United States, we hypothesize that unmarried first-time mothers and fathers will be largely similar in terms of educational attainment, race and ethnicity, and family background. We expect that unmarried first-time fathers will be slightly older than unmarried first-time mothers, but that this age difference will not contribute to differences between men and women in second birth rates. --- Relationship Formation after a Nonmarital Birth For women, having a nonmarital first birth has been found to depress subsequent fertility relative to having a first birth inside marriage . This negative relationship appears to be largely a result of the relationship between early nonmarital fertility and subsequent marriage formation. Women who have a first birth outside of marriage are less likely to ever marry than childless women , and birth rates are lower on average for unmarried women than for married women . Previous research suggests that men's relationship formation is less affected by prior family experience than women's. As noted above, women with children from previous partners are less likely to form a subsequent union; numerous studies have documented reduced odds of first marriage, remarriage, and cohabitation among mothers . The evidence for men is mixed, with some studies finding that nonresident children encourage cohabitation , others finding a negative influence on union formation ), and still others finding no association . Men and women's subsequent childbearing after a nonmarital first birth likely differs because mothers and fathers have different constraints, opportunities, and preferences when dating and forming subsequent relationships. Differences in partnership formation between unmarried mothers and unmarried fathers may be explained by economic search models of marriage and relationship formation. According to these models, men and women who are trying to find a partner search for the person with the most desirable characteristics and compete with others for these desirable mates . Children reduce parents' attractiveness as partners and their ability to search and compete for partners, lowering their rate of partnership formation and pushing them toward less committed relationships. Children are labor-intensive and expensive, limiting parents' time and resources available for relationship formation. Moreover, the existence of a child is a clear signifier of a partner's past sexual relationship, often one in which there is still some contact with the ex-partner. Jealousy over ongoing contact with a prior sexual partner, even if the sexual relationship is over, can damage the stability of new unions . Parents may also be disadvantaged on the relationship market if individuals looking for new mates are reluctant to take on a stepparent role or unclear about the expectations for their relationship with the children. As Cherlin noted, stepfamilies are ambiguous institutions, where roles are not clearly defined. If this is true of married stepfamilies, it is even more likely to be the case for unmarried stepfamilies, since relationships between various members are informal . Because of their weaker bargaining position due to their lower "attractiveness" relative to nonparents and decreased availability for committed relationships, parents may be less likely to form long-term unions like marriage and instead form more temporary relationships such as cohabitation and noncoresidential romantic unions. And because mothers are much more likely than fathers to have physical custody of children, and as a consequence carry more of the burden of care and financial support for children, mothers are disproportionately affected by the presence of children in the formation of relationships. In addition to limiting opportunities for partnership, children may also reduce parents' motivation to find a new partner. Here, too, mothers and fathers are likely to experience these effects differently. Some parents may be reluctant to date at all --having experienced the demise of one relationship, they may be unwilling to enter new relationships if they perceive the risks or consequences of another union dissolution to be too high . Even parents who would like to have a new relationship may be cautious in introducing new partners to their children, lest their children get attached to partners who may be around for only a short time or become exposed to undesirable characteristics of new partners. The potential effects of children on the type of union formed vary. On the one hand, parents may have a preference for nonmarital unions if they are reluctant to legally bind themselves and their children to a new partner who is not biologically related to the children. Fathers, especially, may not want to take on additional financial responsibilities for nonbiological children from new relationships or for additional biological children. On the other hand, given that most people want to marry and believe marriage is the best situation in which to raise children and that marriage promotion programs emphasize the benefits of marriage over other union types, parents might prefer marriage to other types of relationships. Because unmarried mothers are more likely to have custody of children than unmarried fathers, their relationship decisions may be more strongly influenced by concerns for children. Based on the existing body of research, we argue that men and women who have children while unmarried fare differently when searching for mates. These differences will affect both the formation of subsequent sexual unions and the type of union formed, which in turn shape the rates of having additional children. Compared to unmarried mothers, unmarried fathers face fewer constraints on the formation of new unions and are less likely to avoid new partnerships because of concerns about existing children. Since we hypothesize differential treatment of mothers and fathers in the relationship market, we expect that the effect of a nonmarital birth on the occurrence and relationship context of second births will be stronger for women than for men. Specifically, we hypothesize that women will be less likely than men to have a second child after a nonmarital first birth. Among those that do have subsequent children, we expect that women will be more likely than men to give births in less stable unions than in marriage. --- Method This analysis uses data from the 2002 National Survey of Family Growth . The NSFG is a nationally representative, household-based cross-sectional survey of Americans aged 15-44, with a sample of 7,643 women and 4,928 men. Racial and ethnic minorities and individuals age 25 and under were oversampled; all descriptive statistics are weighted to reflect oversampling. Past cycles of the survey interviewed only women, but the most recent cycle included men. The inclusion of men presents a major advance for the study of men's fertility and family formation and allows comparisons between men and women with what appears to be the most accurate source of men's fertility data collected to date. The primary advantage of using the NSFG over other sources that contain both male and female fertility data ) is that fertility data in the NSFG is collected in the context of relationships . In addition, the sample is more representative of the current population than panel surveys such as the NLSY, which were representative when initiated but become less representative over time due to attrition and immigration. Our analytical sample is restricted to men and women with a nonmarital first birth . Missing information on relationship status at second birth excluded 14 cases, and an additional 2 cases were excluded because they were missing information on one of the covariates discussed below. This leaves a final analytic sample of 3,250 individuals . Women's fertility histories were collected in the traditional manner, in a separate module by dates. The collection of men's fertility data in the NSFG used a different, and arguably better, approach, indexing men's childbearing to specific relationships . A list of partners is compiled for each male respondent ; for each partner, men are asked whether they had any children with that partner. Men are also asked if there are any additional children by partners not discussed. If a man reports a child, standard information on the child is collected . The quality of the male fertility data in the NSFG appears to be high and comparable to that in other surveys. In comparing the weighted estimates of births among men 15-44 in the NSFG from 1997-2001 to vital statistics data for the same period, the vital statistics figures are within the 95% confidence interval of the NSFG estimates for both the total period and single years, with the exception of those aged 15-19 . For 15-19 year-olds, the NSFG estimates are lower than those in vital statistics, largely because the sampling frame surveyed men who were 15-19 in 2002 . In using the five-year period prior to survey for a comparison, vital statistics data refer to men who were age 15-19 during 1997-2001 whereas many of the NSFG's 15-19 year-olds were actually younger than 15 during this time . Another study comparing early male fertility across different surveys found that estimates of the prevalence of early male fertility were relatively consistent across the NSFG and the 1979 and 1997 NLSY . The restriction to men aged 44 or younger does miss some fertility among older men. The birth rate for men aged 40-44 was 22.6 births per 1,000 men in 2002, but it quickly declines as age increases, with the birth rate only 7.4 for men 45-49, 2.4 for men 50-54, and 0.3 for men 55 and older . Among women aged 15-49 who had a child in 1988, less than 6% of the fathers of their children were 40 or over, and men who were unmarried, Black, or partnered with lowerincome women tended to be younger than other fathers . Thus, the restriction to men aged 44 or younger is unlikely to exclude a substantial amount of nonmarital fertility. Together, previous research suggests that the overall quality of the fertility data in the NSFG is relatively good and comparable to that of other data sources. Some underestimation of men's fertility, particularly nonmarital fertility, may occur due to the under-sampling and under-representation of at-risk populations that is common in household-based surveys , but we are fairly confident that the data capture the vast majority of children born to the men included in the survey. We return to the issue of potential underreporting of male fertility in discussion of the results. Our analysis has two components. First, we begin with a brief overview of the characteristics of mothers and fathers with nonmarital first births. This descriptive analysis includes characteristics of parents both at the time of birth and at the time of the survey, as well as subsequent family formation events experienced by unmarried parents. Second, to better understand the relationship between sociodemographic characteristics and subsequent fertility, we proceed to model the likelihood of having a second birth using event history methods. Men and women enter the analysis the year of a nonmarital first birth and are censored at the next birth, the time of interview, or 10 years after the first birth, whichever comes first. . We use a Cox proportional hazard model to first estimate the relative hazard of a second birth for men and women with a first nonmarital birth. Next, we run discrete-time multinomial logistic models, examining both the occurrence and the relationship context of second births. The dependent variable in these analyses is a four-category variable indicating no birth, a noncoresidential birth, a cohabiting birth, or a marital birth in the month. Both sets of models include both fixed and timevarying characteristics. In the Cox model, we include time-varying measures of relationship status after the first birth in order to assess the degree to which relationship formation affects the hazard of having a second birth. The multinomial models do not include relationship status as a covariate since relationship status is incorporated in the outcome variable. Because exploratory models suggested a crossover between male and female fertility rates around three years after the first birth, we add a dummy variable for duration distinguishing the first three years after the first birth as well as an interaction between gender and this duration variable, thus relaxing the proportional hazards assumption of the Cox regression model. --- Variables and measures The key variables of interest concern relationship status at the second birth. For women, this information is taken from dates of cohabitation and marriage and dates of births. For men, this information comes from the union type in which they reported the birth. We also include an indicator of whether the individual was cohabiting at first birth. Based on the well-documented relationship between social disadvantage and the risk of nonmarital fertility, we include several socioeconomic and demographic characteristics. These covariates include age at first birth, race/ethnicity, and nativity, as well as several measures indicating socioeconomic status: family structure at age 14, respondent's mother's education and age at first birth, and whether the respondent had a high school degree at first birth. We also incorporate time-varying measures of relationship status and whether the respondent has a high school degree or GED. --- Results We begin with a description of socioeconomic characteristics of unmarried first-time fathers and mothers . Unmarried parents, especially fathers, are disproportionately minority, with fewer unwed mothers than fathers Hispanic or foreign born. There is some suggestion that mothers may be more disadvantaged than fathers; they are less likely to have lived with both biological parents at age 14 and tend to begin childbearing sooner than firsttime unmarried fathers. In addition, women whose first birth was nonmarital are less likely than men whose first birth was nonmarital to have had this birth in a cohabiting relationship. This difference in relationship status implies heterogamy with respect to parity among unmarried parents since first-time mothers and fathers are not necessarily partnered with each other. That is, first births to unmarried mothers may not be first births for the fathers of these children, and vice versa. In addition to background characteristics, Table 1 includes measures of current socioeconomic status . These characteristics are likely jointly determined with subsequent fertility, so they are not used in multivariate models. We describe them here to help sketch a profile of men and women who began childbearing outside of marriage. Women who were unmarried at their first birth were more educated at the time of the survey than men, although at the time of their first birth, roughly equal proportions had at least a high school education. This pattern is somewhat surprising in the context of our general hypothesis that nonmarital fertility is more disruptive for women's lives than for men's lives, as well as with the indicators of greater disadvantaged background among unmarried mothers. At the time of survey, both mothers and fathers were about 32 years old, with no significant differences by gender , so their greater education does not reflect more time available to complete a degree. Their higher achievement is consistent with generally higher educational attainment among low-income women than low-income men and may reflect greater formal and informal support directed at mothers' continued schooling compared to fathers'. Fathers were more likely than mothers to be currently employed full-time, which also mirrors more general trends between mothers and fathers. Fathers may feel more pressure than mothers to work to support children whereas mothers may have the availability of welfare or a male partner to provide support; both social expectations and child support laws emphasize the importance of fathers' financial contributions. Table 1 shows the proportion of unmarried parents who have a second child and the proportion of these children who are born in coresidential unions. Men are less likely than women to have another child after a nonmarital first birth, but the difference is small. Differences in the relationship status of second births are larger. Half of women's second births occur outside of a coresidential union compared to less than one-fifth of men's ; over 40% of men's second births are in marriage but less than a third of women's are in marriage . It is possible that some of the differences between men and women stem from underreporting of higher-parity births by men, but we do not believe that underreporting fully explains the observed differences in subsequent fertility. In particular, it seems unlikely that men are underreporting higherparity births after reporting an initial birth, given that men are most likely to report children born at older ages and children they are involved with, and men tend to be more involved with younger children and with children born in more recent relationships If men failed to report second births, we would expect to see that men were much less likely than women to have a second child. Instead, the largest differences are in the distribution of second births across unions, not the occurrence of second births. Finally, differences in the distribution of second births by relationship status match differences in current relationship status, which is less likely to be subject to misreporting. About 45% of both men and women who began childbearing nonmaritally were married at the time of interview, but far more women were separated, divorced, widowed, or never-married than men whereas men were more likely than women to be cohabiting . --- Multivariate results These descriptive statistics show that women are more likely than men to have second births outside of coresidential unions. It is not clear whether this difference comes from differences in relationship formation, as we hypothesize, or from differences in men's and women's fertility behavior outside of relationships. To disentangle these possibilities and to assess the effects of characteristics at first birth, we estimated nested event history models. The first of these models includes only gender, duration, and a gender-duration interaction; the second adds both time-invariant characteristics at the time of the first birth and time-varying measures of education and relationship status. Results are shown in Table 2. Model 1 shows the hazard ratios from the baseline Cox proportional model. The hazard ratio for "female" represents the difference in birth rates at durations more than three years after the first birth, and the interaction between female and duration allows for variations in gender differences over time. Contrary to our initial expectations, women have higher second birth rates than men at long durations = 1.43). In the first three years after the first birth, women have lower fertility rates than men, but this difference is very small . It is possible that these unexpected findings may result from compositional differences between fathers and mothers who had their first child while unmarried. For example, Table 1 showed that unmarried mothers are younger on average than unmarried fathers; this age difference might explain women's higher birth rates at longer durations since first birth. However, Model 2 suggests that compositional differences do not account for gender differences in fertility. Socioeconomic and demographic variables account for a minimal amount of women's higher second birth rates in the 10 years following a first birth. Several of the socioeconomic and demographic variables are significantly correlated with subsequent fertility. As expected, age at first birth is negatively associated with the hazard of a second birth. Black men and women are more likely to have a second birth than their white counterparts. Men and women without a high school degree at the time of the survey had second birth hazards 1.27 times those of parents with a degree, and maternal education is also inversely related to the risk of having a second birth. Because differences between unmarried fathers and mothers in these characteristics are small , however, these relationships do not explain gender differences in fertility. As expected, relationship status is strongly related to second birth hazards. Individuals who were cohabiting and especially those who were married during the year are much more likely to have a second birth than those who were not in a coresidential relationship. In contrast, cohabiting at first birth significantly decreases the hazard of having a second birth, net of current relationship status . This finding is unexpected but may be related to the instability of cohabiting unions in which children are born; research based on the Fragile Families studies shows that cohabitations among unmarried parents are often unstable . The demise of these relationships may delay subsequent childbearing. Controlling for relationship status does not reduce the coefficients for gender differences in birth hazards. That is, gender differences in relationship formation do not appear to explain male-female differences in second births. In separate models , we tested for differences between men and women in the association between relationship status and birth hazards. We found no statistically or substantively significant interactions and concluded that relationship formation has similar effects on men's and women's fertility. Our initial hypothesis that women would be less likely than men to have a second birth following a nonmarital first birth is not supported. Although unmarried mothers have slightly lower birth rates than unmarried fathers at short durations after the first birth, at longer durations women are significantly more likely than men to have a second birth. These differences are not explained by differences in relationship formation, and sociodemographic characteristics at the time of birth do not account for the correlation between gender and second birth rates. However, descriptive results showed substantial differences between men and women in the distribution of births across relationships; examining these differences may provide further insight into men's and women's status in relationship markets. We turn to competing risk event history models to jointly examine the likelihood of having a birth and of the relationship context of the birth. Table 3 shows results from a multinomial model analyzing the relative likelihood of having a birth outside a coresidential union, a cohabiting birth, and a marital birth relative to no birth in a given person month. We present these three contrasts along with two additional comparisons generated by the same model, the contrasts between a cohabiting and a marital birth relative to a noncoresidential birth. From these results, it is clear that the higher risk of a second birth among women is due to the higher risk of having a noncoresidential second birth in particular. Compared to men, women with a nonmarital first birth are almost 3 times as likely to have a noncoresidential birth than no birth and about a third as likely to have a cohabiting or marital birth than a noncoresidential birth, while there are no statistically significant differences in the risks of having a cohabiting or married birth relative to no birth. There are no differences by gender in the risk of a cohabiting birth relative to a marital birth . These results are consistent with our hypothesis that women who have nonmarital first births are more disadvantaged than men in terms of the relationship context of subsequent births. Cohabitation at the first birth is associated with having subsequent births in a coresidential union. Individuals who were cohabiting at their first birth are 5.2 times as likely to have a cohabiting birth than a noncoresidential birth and 2.2 times as likely to have a marital birth than a noncoresidential birth. Combined with results from Table 2, which showed lower birth hazards for parents cohabiting at the first birth, this association suggests heterogeneity among those cohabiting at first birth. It may be that cohabitors whose unions dissolve have lower second birth rates than average, but those whose relationships survive go on to have a second birth. Other differences by socioeconomic and demographic characteristics emerge when examining the risk and type of a second birth. Although Hispanics did not exhibit overall birth hazards that were significantly different from non-Hispanic whites , competing risk models show that Hispanics are more likely to have a noncoresidential or cohabiting birth rather than no birth. Blacks are also more likely to have a second birth in a noncoresidential or cohabiting relationship rather than no birth, though they have a lower risk of a marital birth relative to no birth, or relative to a noncoresidential birth . Together, this suggests that nonmarital first births among minorities are more likely to be followed by higher-parity nonmarital births than first births among whites. Low educational attainment is also associated with births in less stable relationships. Individuals who had not yet graduated from high school at their first birth and did not return to school are about 40% more likely than high school graduates to have a noncoresidential or cohabiting birth relative to no birth , and have lower odds of having a marital birth rather than no birth . Finally, the older men and women were at their first birth, the less likely they are to have a noncoresidential or cohabiting birth than no birth. An earlier age at birth also increases the risk that a subsequent birth will be marital rather than noncoresidential. --- Discussion and conclusion --- Discussion Given high rates of union instability for both marital and nonmarital unions, researchers can no longer assume that men's patterns of fertility and family formation are identical to women's . In particular, having a child outside of marriage has different implications for men's and women's subsequent family formation, including both childbearing and union formation behaviors. As such, it is increasingly necessary to study both men's and women's family behaviors. In this article, we compare men and women who have nonmarital first births and their subsequent fertility, using a new data source that is well-equipped to study both men's and women's fertility and union histories. We find few significant differences between the characteristics of unmarried first-time fathers and mothers. Unmarried fathers and mothers come from similar family backgrounds, as measured by maternal education and maternal age at first birth. Men are older on average at their first birth, more likely to be Hispanic and foreign born, and slightly more likely to come from a two-parent family. More interestingly, they are also more likely to be in a cohabiting relationship at the time of a first nonmarital birth. This difference is important because it suggests that men's and women's relationship markets differ even prior to a nonmarital first birth. Although cohabiting relationships are less stable than marriages, they are more stable than noncoresidential relationships and so may lead to differences in subsequent patterns of childbearing and union formation. We find that characteristics at first birth -notably age, education, and relationship statusare associated with second birth rates. However, gender differences in second birth hazards persist even after these characteristics are accounted for. Our initial hypothesis was that nonmarital births would depress women's status on the relationship market more than men's, and that women would therefore be less likely to have a second birth. Our results do not fully support this hypothesis. On the one hand, among individuals with a nonmarital first birth, women are less likely than men to go on to have additional children in coresidential relationships. This difference is consistent with our hypotheses that different patterns of child coresidence translate into greater ease for men of both attracting and dating potential mates. The difference could also reflect a double-standard in which unwed fathers are seen as admirable or at least relatively unstigmatized compared to unwed mothers, who must combat an image of promiscuity and oftentimes are grouped together as welfare recipients, with all the accompanying negative stereotypes . It is also possible that a positive experience with single motherhood might encourage women to have additional children outside of marriage or that a negative experience with the father of their first child may discourage women from marrying or cohabiting if they become pregnant again . On the other hand, and contrary to our expectations, women have higher second birth rates than men at long durations after the first birth and only slightly lower rates in the first three years after the first birth. Women's higher subsequent fertility in the long-term may reflect the greater social importance of biological parenthood in women's lives . Higher second birth rates for women may also reflect a desire to provide first-born children with siblings. Men, on the other hand, are far less likely to have custody of any or all of their children and thus less likely to be concerned about sibling relationships. In addition, men may be more likely to fulfill parenthood norms by taking on social father responsibilities toward children of subsequent partners. Men may also avoid subsequent childbearing if they do not see their first child often but are forced to pay child support --in essence, getting few of the rewards but much of the cost of parenthood. More generally, the characteristics of partners may affect subsequent fertility in ways not accounted for in this analysis. Unfortunately, the NSFG does not contain complete information for partners in noncoresidential unions. It is worth nothing that there is some reason to expect that unmarried first-time mothers might be somewhat more heterogenous in respect to age and education than first-time fathers. Because there are more biological constraints on women's childbearing, combined with greater social pressures to have children, some nonmarital fertility among women may be occurring to older, well-educated childless women, the so-called "Murphy Brown" mothers. There is a burgeoning literature on "choice" moms: women who choose to have children outside of marriage, often using sperm banks so that they do not have a partner population of unmarried fathers . As such, unmarried mothers include both young poor women and older, college-educated women. However, recent research indicates that these "Murphy Brown"-type unmarried mothers make up a relatively small proportion of unmarried mothers . While we were unable to examine education status at birth due to data constraints, we found very little evidence of these mothers in the current analysis when just looking at age; there were only 258 individuals 30 or older and 55 people 35 or older in our analytical sample. Removing these individuals from the analysis did not change the results substantively. --- Limitations There are several limitations to this work. First, despite the innovative approach to measuring men's childbearing, where fertility is indexed to men's relationships, it is still likely that some men did not report their nonresidential children, either purposely or because they did not know of them . Comparisons with vital statistics suggest that births to men are not particularly underestimated in the NSFG , but Rendall and colleagues' 2006 work suggests that births to young, unmarried and African American men are most likely to be underreported in the NSFG. Our analysis is limited to men who have reported at least one nonmarital birth --presumably the men most inclined to know about and be involved with their children. To the extent that we miss the most disadvantaged men and those who have the weakest relationship with their children, our results underestimate differences between men and women due to the experience of parenthood, and in fact men who under-report nonmarital fertility may be most likely to have subsequent nonmarital children since they face virtually no costs to parenthood. Moreover, because standard household-based surveys tend to miss disadvantaged men , the NSFG may be missing the men most likely to experience nonmarital fertility, thus capturing a fairly select group of unmarried fathers. For instance, men who report a nonmarital birth in the NSFG may be disproportionately likely to be in coresidential unions at either their first or second births compared to a more representative group of unwed fathers or compared to the unwed mothers in the NSFG , which could bias our results toward showing fewer negative effects of nonmarital childbearing on subsequent childbearing for men than women. It is likely that some of the gender differences in subsequent fertility may arise because the men least likely to report a nonmarital birth or least likely to be sampled are those most likely to have subsequent births, particularly outside of marriage. Fertility rates tend to be higher among young men and African Americans, for instance. Thus, it might be more accurate to conclude that women who report a nonmarital first birth are more likely to go on to have a subsequent birth, particularly one outside of a coresidential union, than men who report a nonmarital first birth, which is consistent with our theoretical argument about differences in the relationship market after a nonmarital first birth. Unfortunately, while it is sometimes possible to estimate the absolute magnitudes of male fertility using other fertility data sources, methodologies to estimate the relative magnitude of associations between socioeconomic and demographic characteristics and fertility behaviors have not yet been developed . Like other researchers who are studying gender and fertility with the NSFG , we believe we should continue to make use of available data sources --taking pains to be aware of the potential limitations --rather than abandon the pursuit completely. Another set of concerns regards limitations in the contents of the NSFG. A major disadvantage of the NSFG is that we know little about the partners of men and women's nonmarital births. The NSFG collects a detailed marital and cohabiting history but does not collect information on noncohabiting relationships, so we are unable to examine whether men and women had their second birth with the same partner as the first birth for children born outside of coresidential unions. However, we are able to examine whether those whose first birth was in a cohabiting relationship had their second birth in the same relationship : this was the case for only 342 of the 1,128 cohabiting first births. Since cohabiting relationships tend to be stronger than noncoresidential relationships, it seems relatively unlikely that most of the higherparity births are with the same partner. Moreover, we are unable to examine whether the quality of partners differs for men and women, either at the time of their nonmarital first birth or at subsequent births. It is also worth noting that we are focusing on relationship status at birth, rather than conception; about 118 of the 573 marital second births appear to be premaritally conceived . As such, even fewer individuals with a nonmarital first birth actually have a second birth conceived within marriage, underscoring the rarity of marital births after a nonmarital birth. In addition, the NSFG does not contain complete retrospective histories of education or employment, which prevents us from indexing specific births to specific socioeconomic conditions. We are thus unable to determine causality between current socioeconomic status and nonmarital childbearing. Given that women generally have physical custody of their children and do the bulk of parenting, especially in the early years, it is reasonable to suspect that the effects of childbearing on subsequent educational attainment and employment would be greater for women than men. If this is true, then the higher current levels of education among women than men in our sample of individuals with a nonmarital first birth is even more remarkable. On the whole, while we believe that the NSFG is a valuable source of new data and this research provides an important first step in understanding the potential repercussions of nonmarital fertility among men and women, replication of our analyses using different data sources that sample or collect fertility information differently would serve to strengthen our conclusions. --- Conclusion Sociodemographic factors related to the occurrence of a nonmarital first birth are similar for men and women. However, men and women face different relationship markets after a first nonmarital birth. As a result, women who have nonmarital first births are more likely than unmarried fathers to have subsequent children outside of coresidential unions. Repeated childbearing outside of marriage, especially with different partners, poses problems for both men and women. Multipartnered fertility has been negatively linked to union stability and child-parent contact . Thus, understanding the relationship between out-of-wedlock childbearing and subsequent patterns of union formation, childbearing, and childrearing for mothers and fathers is an important component of understanding the full effects of a nonmarital birth. Fathers and especially mothers of children born outside of marriage often go on to have additional children, but women are more likely than men to have subsequent children in noncoresidential relationships. This finding suggests that the costs of nonmarital childbearing in terms of future family formation are disproportionately paid by unmarried mothers and less so by unmarried fathers. Further research is necessary to determine whether and how these costs are distributed to children.

Research on nonmarital fertility has focused almost exclusively on unmarried mothers, due in part to a lack of fertility information for men. Cycle 6 of the National Survey of Family Growth allows exploration of nonmarital fertility for both genders. We compare the characteristics of unmarried first-time mothers (n = 2,455) and fathers (n = 797), use event history techniques to model second birth hazards, and examine the distribution of men's and women's second births across types of relationships. Our analysis is motivated by questions about how selection into nonmarital fertility relates to subsequent fertility behavior and by theories of mate selection and the "relationship" market. We find that unmarried mothers are more likely to have a second birth than unmarried fathers, driven largely by a higher hazard of having a noncoresidential second birth.

Introduction Hispanic Americans are a diverse group, comprised of many countries of origin and multiple races . Several studies demonstrate that diversity within the Hispanic population in the United States has important implications for public health research and prevention of adverse outcomes . In particular, health outcome patterns observed for all Hispanic Americans do not fully describe the experiences of Hispanic population sub-groups. Overall, infants born to Hispanic women experience a paradoxical infant health advantage in that the rates of infant mortality, low birth weight and preterm birth for Hispanic women are similar to non-Hispanic white women and much better than non-Hispanic black women , despite their relative socioeconomic vulnerability . A closer look at these infant health indicators among Hispanic women reveals that rates of infant mortality, low birth weight and preterm birth are relatively low among Central American, South American, Cuban, and Mexican mothers, whereas Puerto Rican and Dominican mothers experience much higher rates compared to NHWs . Although there is considerable research literature examining differences in health outcomes of infants born to Hispanic women by country or region of origin , to our knowledge, few published and peer reviewed studies have examined the implications of racial differences within the Hispanic population for infant health outcomes. Contrastingly, racial disparities in birth outcomes among the non-Hispanic population are of frequent discourse within public health, public policy, and medical journals. Black-white perinatal health differentials are perhaps most commonly discussed within the literature, and certainly the most glaring. Infants born to NHB women have persistently higher rates of infant mortality, LBW and prematurity , compared to NHW women. Studies show that black-white disparities in infant health remain even among women with advantaged social positions, and when behavioral factors are accounted for . These findings in conjunction with evidence that disproves the "genetic theory of race" have informed suggestions that racial variation in other factors, such as environmental exposures, chronic stress and discrimination , may contribute to these birth outcome trends through effects on epigenetic and inflammatory processes , and support the idea that race as a social construct matters for infant health outcomes. Most of the existing literature on infant health disparities in the U.S. has identified Hispanic ethnicity, black and white race as mutually exclusive categories, as the federal government categorizes them, despite the fact that a sizeable population classifies themselves as Hispanic black and Hispanic white . Few studies have explored infant health outcomes among Hispanic women by race or among black women by Hispanic ethnicity. In one study, Henry-Sanchez and Geronimus reported that black Hispanic women had significantly higher odds of infant mortality than Hispanic white women in adjusted analyses using data from 1995-1999. More recent studies found that Hispanic black women experience more advantaged birth weight outcomes than NHBs , and are less likely to be born preterm or small for gestational age . Taken together and consistent with the infant health disadvantage observed for NHB women compared to NHW women, it may be possible that black race is associated with infant health disadvantage regardless of ethnic background. The presence or absence of racial differences in infant health within the Hispanic population could have important social implications for infant mortality and birth weight that may be masked by current categorizations. The current study is intended to contribute a more recent and more comprehensive exploration of the implications of black and white race for infant mortality among the Hispanic population within the United States, compared to the non-Hispanic population. Specifically, we conducted a cross-sectional study to investigate differentials in the risk of infant mortality to determine whether the racial disparity in infant mortality commonly observed for the non-Hispanic women also follows for Hispanics. Such an assessment is especially important because Hispanic Americans are the fastest growing population in the U.S. , and given that rates of infant mortality are indicative of population well-being and social position . Our findings will be of interest to public health practitioners, clinicians, policymakers, and especially social science researchers interested in understanding the unique roles of race and ethnicity as they pertain to infant health outcomes. --- Methods We utilized data on infant health outcomes from the Linked Live Birth -Infant Death Cohort Files for the period 2007 -2008 for the 50 U.S. states and Washington, D.C. The data files were requested from NAPHSIS, as the public use files did not include maternal nativity for the given years. These files include data ascertained from birth records from all states in the included years . We restricted the analyses only to include infants born to NHW, Hispanic white, Hispanic black, and NHB mothers , defined using the existing variables for self-reported race and ethnicity, thus excluding roughly 7 percent of the total population in these birth years. Additionally, we excluded records with missing data and bivariate inconsistency for gestational age and birth weight. Almost 99 percent of records were included in the analyses, whereas we excluded 0.4 percent for inconsistent birth weight and gestational age and 0.9 percent for out of range birth weight or gestational age. These specific types of observations and categories of data are excluded to prevent bias and measurement error. Procedures for determining birth weight and gestational age inconsistency have been described in detail elsewhere . The primary health outcomes variables examined were categorized as dichotomous variables indicating the presence or absence of first-week , neonatal , postneonatal and overall infant mortality . The focal independent variables incorporated in the analyses were binary maternal race and ethnic group variables for black and white race among Hispanic and non-Hispanic mothers. The descriptive variables and covariates were comprised of maternal sociodemographic and health characteristics. Age , education , marital status, and maternal nativity comprised the sociodemographic variables. Health characteristics were parity , smoking, hypertensive disorders , and diabetes. The proportions of maternal characteristics and infant health outcomes were calculated by maternal race and ethnicity. Chi-square tests were performed to test whether significant racial and ethnic differences in these variables existed. We then calculated rates of firstweek, neonatal, postneonatal, and infant mortality rates for the four racial and ethnic categories. Using logistic regression, we calculated odds ratios and adjusted odds ratios of each infant mortality category for each racial and ethnic group with 95% confidence intervals, using NHW as the reference group. Because mortality outcomes are rare events, the odds ratios served as estimates of risk ratios . All analyses were performed in SAS Version 9.3. The Institutional Review Board at the first author's institution designated the current research protocol as "not human subjects research", and thus exempt from review or approval. --- Results The distribution of live births to Hispanic mothers revealed that roughly 4% of Hispanic births from 2007-2008 were to black mothers. Among the live births to non-Hispanic mothers during the study period, about 21% were to black mothers. Table 1 provides maternal characteristics and infant mortality outcomes by race and ethnicity group. Women identifying as Hispanic were significantly more likely to be foreign born compared to non-Hispanic women . Hispanic white mothers constituted the largest percentage of foreign-born followed by Hispanic black , NHB , and NHW mothers . The highest proportion of unmarried and teen mothers was among NHW and Hispanic black women, respectively. Hispanic women had the highest proportion of less than high school education . The highest proportion of mothers who were high parity for age was among NHB . NHW women had the highest proportion of maternal smoking behavior . Additionally, non-Hispanic mothers were more likely than Hispanic mothers to have a hypertensive disorder. NHB women experienced the highest burden of hypertensive disorders followed by NHW women while rates of hypertensive disorders in Hispanic black and Hispanic white women were markedly lower, 4.6% and 3.3% respectively. Conversely, the prevalence of diabetes was relatively constant across racial and ethnic groups, with Hispanic women experiencing a slightly greater burden of disease than non-Hispanic women. Hispanic black women had the highest prevalence of diabetes while NHB women had the lowest prevalence . The proportions of mortality outcomes were consistently highest among the NHB group, followed by the Hispanic black group. Across all outcomes, the NHW or Hispanic white groups had the lowest rates of mortality. When infant mortality was further broken down into subcategories, the racial and ethnic disparities in mortality became even more profound. For all groups, neonatal mortality rates were between 1.5 and 2 times higher than postneontal mortality rates. However, neonatal mortality rates of NHB women were more than double that of NHW and HW and approximately two times that of Hispanic black women. Crude odds ratios indicate that the risk of infant mortality overall and postneonatal mortality was lower for Hispanic white compared to NHW mothers. When adjusted for maternal characteristics and risks, this protective effect disappeared and there was a slight increased risk for death prior to one year . There was no difference for postneonatal mortality when adjusted. For Hispanic black women, the risk for mortality in each category was roughly 20-30% greater than NHW women. The risks increased when adjusted for maternal characteristics. NHB mothers had a more than two-fold risk of mortality compared to NHW mothers with the exception of postneonatal mortality. When adjusted for maternal characteristics, the risk was not as marked with an aOR of 1.74 . --- Discussion In this study, we investigated the relationship between race and infant mortality within the Hispanic and non-Hispanic population in the U.S. We find that the association between race and infant mortality operates similarly within the Hispanic population to that previously observed within the non-Hispanic population, in that modestly higher odds of infant mortality were observed among infants of black women. Furthermore, Hispanic ethnicity appears to have a protective effect on infant mortality regardless of race, given that Hispanic black women experience less disadvantaged odds of infant mortality than NHB women despite sharing several risk factors for adverse health outcomes. Furthermore, Hispanic white women experience better or similar odds of infant mortality to NHW women despite similar sociodemographic characteristics to Hispanic black women. Our finding that Hispanic infants have similar risk of infant mortality compared to NHWs, and lower risk compared to NHBs has been reported previously . Extant literature commonly hypothesizes that this "Hispanic paradox" may be explained by protective cultural behaviors at the individual, interpersonal, and community-level, diminished over time by acculturative processes . Given that this phenomenon is evident for some Hispanic subgroups and not others , social science researchers have taken interest in potential explanations for this variation. One explanation suggests that differences in racial identification and related social stratification translate into health outcomes . The World Health Organization considers the social construct of race to be a determinant of health which underlies the inequitable distribution of resources critical to health, and whereby identifying with a marginalized racial group is associated with poorer health outcomes . Existing research evidence supports that the social disadvantages associated with being a of black race cumulatively contribute to poor birth outcomes through mediating inflammatory and epigenetic processes . For example, black women in the U.S. experience greater exposure to environmental toxicants than white women. Chronic exposures to these toxicants can affect inflammatory processes and gene expression, which are associated with length of gestation . Additionally, repeated stress over time due to racial discrimination and other social frustrations can lead to physiological responses among women during pregnancy such as norepinephrine and cortisol output, and subsequent increased corticotrophin-releasing hormone gene expression, which can contribute to preterm birth . The current study also adds to the literature that racial diversity within the Hispanic population corresponds with differential odds of infant mortality; mirroring disparity within the non-Hispanic population, though smaller in magnitude. This pattern of black disadvantage in health among Hispanics has been found in prior studies of other birth outcomes , as well as adolescent and adult health outcomes . The consistency of this finding across the current and previous studies, which were conducted within different age groups, in different time periods, and for different outcomes, may speak to the systemic impact of the construct of race on population health in the U.S. regardless of ethnicity. These findings may be considered within the context of the large and growing body of literature suggesting that racism and related race-related social discrimination may manifest in differences in the life opportunities, exposures, and stresses which contribute to these underlying differences in health status . Targeted approaches to reducing these social and structural barriers at the local level have shown promise in increasing education and building community capacity, with the long-term goal of improved infant health status . For example, the Racial and Ethnic Approaches to Community Health program implemented community-engaged observational and educational activities to mobilize the community to address systemic determinants of health disparities, with the aim to strengthen the maternal-infant health care system in Genesee County, Michigan. Published evaluations of REACH indicate enhanced understanding of structural determinants of health and their impact among health, professionals, and community audiences , and improved cultural sensitivity and understanding of patient circumstances among health workers . In another exemplary initiative, public health and medical leaders in Wisconsin developed a regional funding initiative with community partners to address racial gaps in birth outcomes , using the Life Course perspective . To date, Wisconsin Partnership Program grantee projects have provided mental health support to pregnant women, strengthened paternal involvement during the prenatal period, and improved understanding of racism and its impact among stakeholders in the legal, health, education, and social services sectors. Continued evaluation of these programs will be needed to determine whether these approaches improve infant health outcomes, and whether they should be replicated in other locations or on a larger scale. Findings from this study should be considered in the context of advantages and disadvantages in our approach to analysis. First, studies that use vital records data for births and infant deaths from all U.S. states allows for a representative study population, limited selection bias, and examination of health outcomes among relatively small racial and ethnic subpopulations . Nonetheless, the use of administrative data has intrinsic limitations. These include the potential for missing values, out of range data, bivariate inconsistencies, and miscoding. To address this limitation, we attempted to minimize potential bias due through selection criteria designed to filter records with out-ofrange birthweight or gestational age measurements or inconsistent birthweight/gestational age pairs. Although these selection criteria eliminated a very small portion of the total sample there remains the possibility that these measurements were not incorrect at random but in a more systematic manner. These data are also subject to possible underreporting of clinically relevant information. Despite these limitations, vital records data are well suited for examination of the relationship between demographic factors and pregnancy outcomes, as well as inequities in those outcomes . Another limitation of this study, inherent in our use of vital records data, is the lack of a measure of maternal economic status as an independent variable in this analysis. However, we did have access to and include maternal education in our analysis, as a measure of socioeconomic status that other research has found to be significantly associated with racial and ethnic disparities in infant health outcomes . Furthermore, while prior scientific literature has suggested that disparities by race/ethnicity are attributed to economic status, contrasting research has indicated that economic status doesn't fully explain racial and ethnic disparity . Thus, the disparities observed in our study may be explained by other social factors as well. The current study also did not utilize information on healthseeking behaviors, such as prenatal care utilization , which may account for some of the disparities found in these populations. Future studies should examine the impact of racial heterogeneity on these behaviors, given that previous literature has found significant PNCU differences by maternal nativity and presence of a chronic condition . In summary, our analyses show patterns of white advantage and black disadvantage regardless of ethnicity in rates of infant mortality outcomes . Our findings suggest implications of racial heterogeneity within the Hispanic population on infant health outcomes, and provide insight into the role of race as a social construct. --- Significance Previous research has examined infant health outcomes by race and ethnicity but few studies have explored the role of race within ethnic categories. This study explores the racial heterogeneity in health outcomes within the Hispanic population compared to the non-Hispanic population in the U.S. Racial differences in mortality highlight the implications of race for adverse infant outcomes and provide insight into the role of race for the health of Hispanics in the U.S., mirroring disparities in the non-Hispanic population. These findings lend support to extant literature on the role of race as a social construct in infant health.

Objectives-U.S.-born Hispanic infants have a well-documented health advantage relative to other minority groups. However, little published research has examined racial heterogeneity within the Hispanic population, in relation to health outcomes. The current study aims to explore possible implications of racial identification for the health of U.S. born Hispanic compared to non-Hispanic infants. Methods-Data were drawn from 2007 to 2008 NCHS Cohort Linked Live Birth-Infant Death Files, restricted to deliveries of Hispanic black, Hispanic white, non-Hispanic black (NHB) and non-Hispanic white mothers (NHW) (n=7,901,858). Adjusted odds ratios for first week mortality, neonatal, postneonatal, and overall infant mortality were calculated for each group, using NHW as the reference group. Results-A distinct health gradient was observed in which NHB infants (n=1,250,222) had the highest risk of first week (aOR=2.29 (2.21-2.37), neonatal (aOR=2.23, CI=2.17-2.30), postneonatal (aOR=1.74, CI=1.68-1.81), and infant mortality (aOR=2.05, CI=2.00-2.10) compared to NHW infants (n=4,578,150). Hispanic black infants (n=84,377) also experienced higher risk of neonatal (aOR=1.27, postneonatal (aOR=1.34,, and infant mortality (aOR=1.30, CI=1.18-1.43) compared to both NHW and Hispanic white infants (n=1,989,109).

Reduced levels of physical activity, increased levels of physical inactivity associated with a sedentary lifestyle, higher prevalence of overweight and obesity, and reduced levels of fitness and motor coordination are increasingly common in children from developed countries . According to the World Health Organization , almost two-thirds of the children are insufficiently active with serious implications for their fitness and their future health. These trends have implications for the presence of risk factors associated with cardiovascular and metabolic health in adulthood . Consequently, it is regularly recommended that programs of regular physical activity be implemented for the purpose of improving health status during childhood which may reduce chronic diseases at adult ages . More recently, the interactions of motor competence and physical activity beginning in early childhood have been noted . Children who are more proficient in movement skills tend to be more physically active. The results emphasize the potential influence of environmental factors, e.g., living conditions, SES, parental activity, among others, on opportunities for physical activity and practice of movement skills . Emphasis on movement skills per se is relatively recent and highlights the need to better understand the development of motor proficiency among children . SES is a confounding factor in the relationship between physical activity and health outcomes , but results are not necessarily consistent across studies and the dimension of physical activity that is considered. Among Taiwanese youth, for example, SES was not related to estimated total daily energy expenditure and energy expenditure in moderate-to-vigorous activities . On the other hand, SES was related to the intention to exercise among Canadian youth , while lower SES groups in Flanders tended to show a more sedentary lifestyle compared with groups from middle and high SES . Studies of parental income and extracurricular use of sport facilities indicated significantly less participation among children from low income compared with children from high income families . However, total physical activity was not related to parental income, suggesting that families from low SES may compensate for the lack of organized forms of leisure time activities by being active in nonorganized forms of physical activity. The latter was confirmed among elementary school children in the Bristol areas . Parents of children attending schools in low SES neighborhoods indicated that their encouragement of sport participation of their children was largely restricted to verbal recommendation due to the high cost of organized sport-based activity participation. Although sport participation is only one component of total physical activity, it has been postulated that sport participants have higher current estimated energy expenditure and that sport participation may enhance health benefits of physical activity . Moreover, boys and girls involved in organized youth sports tend to expend, on average, more overall energy and energy in moderate-to-vigorous activities than nonparticipants . In a more recent study which included accelerometry with boys , participation in youth sport accounted for about one-fourth of 110 min of moderate-to-vigorous physical activity in the day . It is suggested that individuals living under conditions of limited economic, social and cultural capital are less likely to participate in sports and are more likely to be excluded from this active form of physical activity due to their unfavorable situation . Children from low SES groups are also under threat of social exclusion as evident in the backgrounds of participants in high-performance youth sport; the majority was from middle class and relatively affluent households . Indicators of SES vary among studies as do measures of physical fitness and contexts of physical activity. Several studies have considered the relationship between SES and physical fitness and performance, but results vary among studies. Results for American children are inconclusive and confounded in part by variation associated with ethnicity . Among Polish youth, parental education and family living conditions had only a weak influence on a variety of motor performance tests . Among Portuguese youth resident on Madeira Island, SES significantly influenced body size and fatness , but showed no clear pattern of association with tests of fitness . Results focusing on SES and motor coordination assessed with the Körper-Koordinationstest für Kinder in German children were equivocal. One study noted no significant association between motor coordination and SES , while another noted lower levels of motor coordination among children from low SES families . This study considers variation in body size, fitness, motor coordination and sport participation by level of SES in a representative sample of Flemish elementary school children 6-11 years of age. It was hypothesized that children from low SES would show lower values for sport participation compared with peers from middle and high SES, and that children from low SES would perform less well on tests of fitness and motor coordination given their lack of experience in sport participation. --- Methods --- Study Design and Participants The study design was cross-sectional. Children were recruited from primary schools randomly selected throughout the Flemish region of Belgium. Twenty-nine schools were randomly selected resulting in a sample of 2183 children. The schools were representative of geographic region and school system . The study was approved by the educational authorities and by the Ethics Committee of the Ghent University Hospital. The participants without informed consent of their parents or guardians participated in the test assessment to guarantee their daily physical activity, but were not included in the analysis. From the 2183 participants, 228 were excluded due to missing values resulting in a final sample of 1955 children of whom 52% were boys. --- Measurements SES, Physical Activity, Sport Participation. SES was assessed from current occupational status of both parents/legal guardians. Occupational status was defined using following categories from low to high: unemployed, housekeeping, skilled worker, clerk, education and teaching, self-employed, management, executive position, and profession . The variability of occupations establishes a range of SES characteristic of the lifestyle of the parents, especially in Western societies where individual wealth is less decisive when it comes to personal welfare . Two other categories were not represented in sample. Consequently, subjects were categorized into three levels: low, middle and high SES . The questionnaire used to assess level of physical activity and sport participation included sociodemographic questions, including parental occupation . The questionnaire was completed at home with the assistance of parents. Sport participation was measured by asking respondents to select their three most practiced and actual sports during the last 12 months. Frequencies and durations were noted for each of the sports. A sport participation index was computed by summing hours per week spent in the three sports. Participants also noted whether they were a member of an official sports club . Morphology. Height and sitting height were measured with a Harpenden stadiometer according the guidelines of Lohman et al. by the same test leader. Body weight and estimated percentage fat were measured with a Tanita bioelectrical impedance scale . According to the manufacturers' guidelines, the scale was approved for medical research in subjects from 5 to 99 years of age. Fitness. Fitness was assessed with several items of the Eurofit test battery : hand grip , sit and reach , standing broad jump , 10 × 5m shuttle-run and 20m endurance shuttle-run . Knee push-ups and sit-ups from the BOT-SF2 , the counter movement jump with hands fixed on hips using OptoJump , and shoulder flexibility ) were also included. The selection of tests was based on practical considerations regarding age-appropriateness, userfriendliness and discriminating power among children 6-11 years. Motor Coordination. Motor coordination was assessed with the Körper-Koordinationstest für Kinder . The test is reliable and valid with children 5-15 years and was recently tested for suitability in Flanders . The battery included four test items: jumping sideways across a wooden slat , moving sideways on boxes , hopping for height on one leg and walking backward on balance beams . The raw performance scores of each subtest were transformed into age-and gender-specific motor quotients, together resulting in a general Motor Quotient . --- Test Procedures The fitness and motor coordination tests were performed in the gymnasium during physical education classes at the respective schools. Test sessions lasted approximately 85 min. Subjects wore suitable sports clothes and performed the tests barefoot, except for the ESR. Qualified examiners provided standardized instructions and demonstrations according to the test guidelines. Children were encouraged to perform at their best. --- Statistical Analyses All analyses were gender-specific. Two-way ANOVAs were used to evaluate sport participation by age group and SES. The other dependent variables were grouped into three clusters for analysis: morphology, fitness and motor coordination. Second, multivariate analyses of covariance with hours of sport participation as a covariate were used to examine the effect of SES. Three age groups were considered . Bonferroni adjustments for multiple comparisons were used throughout. Main effects of SES and age and the SES x age interaction effect were reported, and effect sizes for these main effects were added. A significance level of p < .05 was accepted. SPSS 16.0 for Windows was used. --- Results --- SES Variation in Sport Participation and Sports Club Membership Descriptive statistics for hours of sport participation and sports club membership by gender, age and SES are presented in Table 1. Percentage of sports club membership represents children actually participating in a sport or several sports who are enrolled in at least one official sports club. The effects of SES, age and SES x age interaction effect are significant in girls. High SES girls had significantly greater sport participation than low and middle SES peers. Percentage of sports club membership increases with higher SES. Among boys, the effect of SES and age for hours of sport participation are significant. High SES boys indicate greater sport participation than lower SES boys. Descriptive statistics for sports club membership follows the same pattern as in girls. Low SES boys have lower percentages compared with middle and high SES boys who do not differ from each other. --- SES Variation in Morphology, Fitness and Motor Coordination in Girls Descriptive statistics and results of the MANCOVAs for morphology, fitness and motor coordination among girls are presented in Table 2. Height does not differ by SES whereas body weight, BMI and percentage fat differ significantly. High SES children have, on average, lower weight, BMI and percentage fat than low and middle SES children who do not significantly differ from each other. As expected, height, weight and BMI show a significant age effect while percentage fat varies significantly with age. The SES x age interaction is not significant for morphologic dimensions and estimated fatness. Except for HGR, hours of sport participation is a significant covariate for all fitness variables. Four fitness items differ significantly by SES. SFL, SHR, SUP and ESR are better in high compared with low SES children, but differences with middle SES children are not consistent for the four fitness tests. As expected, fitness tests show a significant age effect. The interaction SES x age is not significant for all tests. Hours of sport participation is also a significant covariate for the motor coordination tests. The three tests of motor coordination and MQ KTK differ significantly by SES among girls. Scores are better for high SES compared with low and middle SES girls, while the latter do not differ. The motor coordination variables vary significantly with age, except for MQ KTK, which is already adjusted for chronological age. --- SES Variation in Morphology, Fitness and Motor Coordination in Boys Descriptive statistics and results of the MANCOVAs for morphology, fitness and motor coordination among boys are presented in Table 3. Except for height and weight, hours of sport participation is a significant covariate for all variables. BMI significantly differs among boys by SES group. Low SES boys have higher BMIs than middle and high SES boys who do not differ. Height, weight, BMI and percentage fat are significantly influenced by age, and there are no interactions between SES and age for the four morphological variables. Hours of sport participation is a significant covariate for all fitness items. Only one fitness test differs significantly by SES. High SES boys perform better than low SES boys in SUP. All other comparisons are not significant. Fitness scores, except for flexibility, increase significantly with age, and SES x age interactions are not significant. Hours of sport participation are a significant covariate for all motor coordination variables. In contrast to girls, the four tests of motor coordination and MQ KTK do not differ significantly by SES among boys. Age significantly influences all motor coordination variables, and there are no significant interactions for SES and age. --- Discussion The present study considered differences in sport participation, morphology, fitness and motor coordination among children of low, middle and high SES. SES was significantly related to sport participation and sports club membership; both As a significant main effect in both boys and girls, high SES children participated about one hour per week more in sports compared with low SES children. The influence of the SES x age interaction in girls suggested that the differences in hours of sport participation were more pronounced at younger ages . The observations were generally consistent with previous studies which suggested that lower SES children participated less in organized forms of extracurricular activities compared with higher SES peers . It should also be noted that many low and middle SES neighborhoods had fewer physical activity resources available compared with high SES neighborhoods . Limited physical activity resources in a community may influence active transport and unstructured physical activities. An additional confounder in evaluating SES variation in sport participation, fitness and motor coordination is nutrition, perhaps energy availability or an unhealthy diet. Unfortunately, nutritional information was not included in the current study. Other factors may be related to child and/or parental readiness and lack of basic movement skills for participation in organized sport. Consistent with the preceding, low SES children reported lower club membership compared with high SES children in all age groups, while middle SES children reported club membership intermediate between low and high SES groups. It has been suggested that high costs of youth sports program or sport clubs were an impediment for parents from low SES households . In addition to registration fees, costs associated with equipment and transport, and constraints on parental time are additional factors for low SES households. Based on a survey in the mid-1990s, the average Flemish family spent $1,809 on sport which is a substantial amount especially for people with low incomes . The authors concluded with a call for government funding to finance the construction and maintenance of a variety of sport facilities and to lower the price thresholds for low income families. Observations in the current study also suggested that low and middle SES children lag behind high SES children on several morphological indicators . Also in girls, many fitness and motor coordination variables differed between children by SES, although results were not consistent. Among Portuguese children on the island of Madeira, high SES children had better performances in abdominal muscle strength and speed and agility , lower SES Madeira children outperformed their higher SES peers in several tests . The contrasting observations were not apparent in the current study and might reflect differences in criteria for SES and perhaps differences in urbanization, economic prosperity and access to public transport. Few previous studies have considered motor coordination relative to SES. Results for Flemish children were consistent with observations on German children . The MQ KTK varied with SES in both girls and boys and suggested that children from low SES had a higher probability of impaired motor coordination. The potential role of sports club membership in motor coordination needs further study. It appears reasonable to assume that children who are enrolled in a sports club are physically active on a regular basis and receive regular instruction and practice under the supervision of qualified and experienced coaches. Participants in a sports club are also more likely to be surrounded by equally interested and perhaps talented peers who likely contribute to enhanced motivation. The influence of peers in providing social support is evident in social , emotional and instrumental aspects of sport participation . Structured sport participation is also associated with higher levels of physical activity and motor competence during childhood and adolescence and with higher probability of participation in physical activity in adulthood . However, as lower SES children typically tend to engage more in street play, this group must have more access to unstructured physical activity which perhaps has a more permanent influence on motor competence. Physical activity also has weak to strong positive influences on anxiety and depression symptoms , aerobic fitness and even on academic competence . The latter is of great interest since children from low SES generally have an unfavorable position concerning academic competence compared with peers from higher SES groups . The present study considered morphologic, fitness and motor coordination variables in relation to SES, statistically controlling for sport participation in a representative sample of Flemish primary school children. Nevertheless, the study has some limitations. Its cross-sectional design precludes causal statements of potential effects of SES on growth, fitness and coordination. Information on physically active transport, unstructured physical activities and energy intake was not obtained. Although several studies have shown a significant influence of parental sport participation on the sport participation of offspring, the current study did not include an assessment of parental sport participation. In summary, low SES was associated with reduced sport participation and sports club membership. Low and middle SES was also associated with elevated body mass, BMI and percentage fat and with generally poorer motor coordination compared with high SES in girls. Corresponding comparisons among boys were not consistent. SES differences were inconsistent among physical fitness tests, although several of the comparisons were significant. The results suggested a greater vulnerability of girls compared with boys under conditions associated with low SES. Given the potential importance of involvement in sport, the results also suggested a potentially important role for improving sport opportunities for lower SES children and girls in particular.

Socioeconomic status (SES) is often indicated as a factor that influences physical activity and associated health outcomes. This study examined the relationship between SES and sport participation, morphology, fitness and motor coordination in a sample of 1955 Flemish children 6-11 years of age. Gender, age and SESspecific values for morphologic dimensions, amount and type of sport participation and fitness and motor coordination tests were compared. SES was positively and significantly associated with sport participation and sports club membership in both sexes. Although differences were not consistently significant, morphologic dimensions and tests of fitness and motor coordination showed a trend in favor of children from higher SES. The results suggest that public and local authorities should consider providing equal opportunities for children in all social strata and especially those in the lower SES to experience the beneficial effects of sport participation through which they can enhance levels of physical fitness and motor coordination.

Introduction --- Background Globally, it is estimated that 101 million older adults require care from a friend or family caregiver , with women providing most of the support [1]. The support provided by these informal caregivers is often crucial for enabling older adults to safely remain in their home environment [2][3][4]. Caregiving support, such as assistance with activities of daily living, attending appointments, and health management, is associated with positive outcomes for both caregivers [5,6] and care recipients [7]. Although caregivers often willingly engage in caring, their role can negatively affect their psychological well-being, particularly when care is provided over a prolonged period [8][9][10]. --- The Social Determinants of Health and Inequities Among Caregivers The social determinants of health can influence entry into the caregiving role and the subsequent experience of being a caregiver. For example, factors such as being a woman, lower educational attainment, and living in a rural setting can bias caregiving toward individuals who may perceive that they have little agency in their choice to become a caregiver [11]. Furthermore, a greater intensity of caregiving has been identified among caregivers who are female, people of color, and of lower socioeconomic status [12]. These inequities highlight the need for interventions with both scope and accessibility to support caregivers with varied demographic characteristics. Although some programs and community initiatives are available to support caregivers, the literature suggests that caregivers struggle to access these supportive services [13][14][15]. Challenges in system navigation, accessing support, geographic location, and scheduling factors can impede the successful use of services [16,17]. Recent research indicates that supportive services provided or augmented through mobile health technologies have the potential to make services more accessible to caregivers [18][19][20]. --- mHealth Interventions as a Potential Solution for Caregiver Support The term mobile health was first coined in 2003 in response to the rapid development and expansion of mobile communication technologies being used within the health care industry [21]. The World Health Organization defines mHealth as a "medical and public health practice supported by mobile devices, such as mobile phones, patient monitoring devices, personal digital assistants, and other wireless devices" [22]. The use of health information technology to access health records or locate health information on the web has become commonplace among caregivers as a means of informing their caregiving role [23]. Research suggests that mobile apps have the potential to have a greater positive impact on caregivers by providing support, communication, and facilitation of care, thereby reducing the burden and positively affecting caregiver health outcomes [24]. However, to the best of our knowledge, a systematic review of the impact of mHealth support on caregivers of older adults does not currently exist. Furthermore, to date, reviews on standard caregiver interventions suggest that limited work has been conducted to determine the suitability of these interventions for caregivers from backgrounds representing diverse social determinants of health characteristics [25]. Individual characteristics, such as sociodemographic characteristics and the ability to engage with technology, should be considered in the design of mHealth interventions [26]. Therefore, the objectives of this systematic review were to determine how health equity is considered in the design, implementation, and evaluation of mHealth interventions aimed at caregivers of older adults using the Cochrane Equity PROGRESS-Plus framework [27] and synthesize the evidence on the impacts of caregiver-focused mHealth interventions, subsequently discussed through a health equity lens. --- Methods A systematic review was conducted in accordance with the PRISMA statement guidelines [28]. The protocol for this systematic review was registered on PROSPERO and is available for electronic access [29]. --- Research Questions The research questions guiding this systematic review were as follows: • To what extent is health and social equity considered in the design, implementation, and evaluation of mHealth interventions for caregivers of older adults? • What are the impacts of the examined mHealth interventions on caregivers of older adults based on the following outcomes: caregiver mental and physical health, caregivers' ability to provide care, usability or feasibility of the mHealth intervention for caregivers, and caregivers' experiences and perspectives of engaging in an mHealth intervention intended to support them? --- Eligibility Criteria Eligible articles were available in full text in the English language and were published from 2010 onward to reflect the recent surge in mHealth interventions, concurrent with the rapid increase in mobile device ownership within the past decade [30,31]. This review included both quantitative and qualitative study designs, which evaluated or explored the impacts of mHealth interventions aimed at improving the health of, or providing support to, informal caregivers of older adults. Mixed methods studies were also included. mHealth interventions were defined as those that the caregivers of older adults accessed via mobile or wireless devices . Interventions not accessed by mobile or wireless devices were excluded, as were mHealth interventions that targeted the recipient of care only or only assessed outcomes focused on the recipient of care. Studies that exclusively included formal caregivers of older adults or caregivers of individuals who were not identified as older adults were also excluded. Eligible studies were also required to report at least one caregiver-specific outcome or finding, including those relating to caregiver mental and physical health, caregivers' ability to provide care, usability or feasibility of the mHealth intervention by caregivers, and caregivers' experiences and perspectives of engaging in mHealth interventions intended to support them. Research protocols, dissertations, reviews, commentaries, and abstracts were also excluded. --- Search Strategy and Study Selection A systematic search was conducted on five databases: PubMed, PsycINFO , CINAHL, Scopus, and Cochrane Library. An academic librarian was consulted during database search strategy development. Database searches combined a comprehensive suite of similar and related terms for the key domains of caregivers, older adults, and mHealth interventions. Detailed search strategies for each database are provided in Multimedia Appendix 1. The search results were limited by the year of publication from 2010 to February 2021, when the search was initially conducted. The search strategy was repeated in June 2021 to capture newly published articles. Ancestry searches were also conducted using the reference lists of eligible studies, as well as related reviews [19,[32][33][34], to search for additional potential articles for inclusion. Eligible studies identified from the database and ancestry searches were independently assessed by a group of 4 reviewers . Each document was reviewed by 2 reviewers based on the title and abstract. The full texts of relevant studies were then obtained, and 2 reviewers independently examined the full texts of the selected studies to determine the final included articles in accordance with the eligibility criteria outlined previously. Covidence systematic review software was used to organize the search results and facilitate communication between the reviewers. Disagreements were resolved by consensus. In cases where consensus could not be reached, a third reviewer resolved the disagreement. The search strategy yielded an initial 1629 articles for screening of titles and abstracts. On the basis of the initial screening, the full texts of the 3.31% of articles were assessed. Of the 54 articles, 26 were subsequently excluded after a full-text review. The literature search and study selection processes are shown in Figure 1. A total of 28 articles met the inclusion criteria and were included in the review. --- Data Extraction The data were extracted using reviewer-designed data extraction forms in Covidence. A total of 2 reviewers independently performed the data extraction. Disagreements were resolved by consensus. In cases where consensus could not be achieved, a third reviewer was consulted. Data extracted from full-text articles included country of investigation; study design and methods; participant recruitment, demographics, and baseline characteristics; description of the mHealth intervention; and caregiver-specific outcomes or findings. In addition, the review team identified which social determinants of health and factors contributing to health inequities were addressed by study investigators, as described by the PROGRESS-Plus framework [27,35]. PROGRESS-Plus is a framework developed with evidence from working groups from the Campbell and Cochrane Collaborations, which can be applied to determine whether an equity lens has been used throughout the stages of study design, implementation, and reporting of research [27]. The framework includes the following equity factors: place of residence, race, ethnicity, language, culture, occupation , gender or sex, religion, education, socioeconomic status, and social capital, as well as age, disability, sexual orientation, features of relationships, and time-dependent relationships [27]. The manner in which investigators addressed these factors within the intervention itself and the study of the intervention was considered in their report of these factors within the following sections: mHealth intervention design, study participant recruitment, study results or findings, and discussion or limitations of the investigation. --- Risk of Bias Assessment Risk of bias assessments were performed for each study using standardized critical appraisal tools from the Joanna Briggs Institute Manual for Evidence Synthesis [36]. The Joanna Briggs Institute provides distinct critical appraisal checklists for experimental, quasi-experimental, observational, and qualitative study design. One of the reviewers performed the risk of bias assessments for each study, which was then checked by a second reviewer. Disagreements were resolved by discussion and consensus. No studies were excluded from the review based on quality assessments to achieve a comprehensive understanding of the quality of the available literature exploring the impacts of mHealth interventions for caregivers of older adults. The findings of the quality assessments and the limitations of the included articles are summarized in the results, and the summary scores of the quality assessments are presented in the Results section. --- Data Synthesis A narrative synthesis of findings was pursued because of the range of included mHealth interventions, caregiver characteristics, and caregiver-related outcome measures, as well as the inclusion of both quantitative and qualitative study designs. The narrative synthesis was organized under the following categories: --- Results A total of 28 articles were included in this review. A summary of the included articles is presented in Multimedia Appendix 2 . --- Characteristics of Included Studies Among the 28 included studies, 14 were quantitative [37][38][39][40][41][42][43][44][45][46][47][48]63,64], 7 were qualitative [49][50][51][52][53][54][55], and 7 used mixed methods [56][57][58][59][60][61][62]. Studies were most frequently conducted in the United States [38,41,[45][46][47][48]50,53,58,60], the Netherlands [37,55,57,59], the United Kingdom [54,62], and Australia [52,56]. Most studies targeted nonspecific informal caregivers of older adults; however, 25% targeted family or spousal caregivers specifically [38,44,51,52,54,60,64]. Approximately 7% of studies targeted caregivers who reported being isolated [56] or experiencing caregiving strain [38]. Caregivers most commonly provided care to older adults with dementia or other forms of cognitive impairment [37][38][39][41][42][43][44]46,47,[50][51][52][53][54][55][56][58][59][60]62,64]. Other studies recruited caregivers who provided care to older adults with urinary incontinence [63], older veterans who were medically complex [45], and older adults with functional loss or struggling to remain independent at home [49,57,61]. --- Risk of Bias Within Included Studies The full risk of bias assessments for the 28 included studies are presented in Multimedia Appendix 3 . The potential for bias within the 11% included randomized controlled trials [37,45,46] most commonly stemmed from a lack of blinding of participants and outcome assessors. Potential sources of bias within other quantitative studies include a lack of control groups [60,62,63] and limited consideration of potential confounders [41,56]. Most of the included quantitative studies recruited small convenience samples of caregivers or caregiver-care recipient dyads; for example, recruiting from single clinics [38,39] or from attendees of an Alzheimer's Association chapter event [50]. Included qualitative studies were most often limited by a lack of clear alignment between philosophical underpinnings, methodology, and research questions or objectives [49][50][51][52][53][55][56][57][58]60,62]. Although most studies provided sufficient information to demonstrate a logical flow from the analysis and interpretation of data to the overall conclusions, few studies addressed the potential influence of the researcher on the research [54,62]. In addition, only 7% of qualitative studies provided information on the location of the researcher's theoretical approach [53,54]. Although other studies may also have used a theoretical lens or framework to guide their intervention and analysis, they did not report this information. --- mHealth Intervention Characteristics The included studies' interventions were web-based or non-web-based applications, interventions, or videoconferencing software, which were delivered via mobile phones, tablets, and handheld computers. The intervention details, including intervention description, hardware, stakeholder input, and comparison groups, are outlined in Table 1. The aims of these interventions fell under three interrelated categories: making connections, facilitating caregiving, and promoting caregiver health and well-being . The included mHealth interventions facilitated various linkages and connections between caregivers and supportive services, such as connecting the care recipient's circle of care, including caregivers and health professionals [44,45,48,51,53,55,57,58,61]; connecting the caregiver to existing social support or facilitating new connections to peer support [40,43,46,56,59]; and connecting the caregiver to services and resources for both themselves and the recipient of care [37,43,47,50,51,53,58]. [64] that contained the same to families caring for patients with demeninformation as the mobile app tia by helping family caregivers manage behavior and psychological symptoms --- 9/9 Control group did not use the intervention No No A mobile app system based on the reminiscence therapy framework; the app was developed to promote the relationship between caregivers and people with demen-Watcharasarnsap et al [42] tia and better the mental well-being of both parties Quantitative s tudies -other 6/10 N/A b No Yes; handheld computer A self-administered cognitive training intervention using an adaptive, paced serial attention task, targeting the dorsolateral prefrontal cortex, which is implicated in regulating emotions, anxiety, and stress Callan et al [38] JMIR Aging 2022 | vol. CareIT, a multifunctional smartphone and web-based app designed to meet the education and support needs of caregivers; the app allowed caregivers to self-assess for depression and burden and linked caregivers to resources Ruggiano et al [53] 10/10 N/A Yes Yes; tablet InspireD-Individual Specific Reminiscence in Dementia, a personalized reminiscence program for family carers and people living with dementia Ryan et al [54] 5/10 N/A Yes Yes; tablet The DecideGuide, an interactive web tool that helps informal caregivers, people with dementia, and case managers make shared decisions Span et al [55] a Complete quality appraisal tools and scores are presented in Multimedia Appendix 3. b N/A: not applicable. [62], reminiscence therapy [42,54], cognitive training therapy [38], and mentalizing imagery therapy [60]). --- Consideration of Factors That Influence Health Inequities --- Reporting of PROGRESS-Plus Factors in Intervention Design When describing the design of their interventions, 36% of studies provided considerations for ≥1 PROGRESS-Plus factor [37,40,41,46,48,49,56,59,61,63]. Approximately 11% of studies considered the place of residence in their recruitment approaches as their interventions were designed specifically for geographically isolated caregivers [40,56,61]. Approximately 11% considered languages through the provision of alternative language options in the mobile app, readability , and accessibility options such as larger font or less text [37,46,49]. Approximately 11% described social capital as an element of the intervention itself [56,59,63]. Approximately 7% described considerations for caregivers' age in the design of their interventions by improving readability, comprehensibility, and clarity of the language used in the intervention; providing caregivers with assistance in completing web-based forms; and integrating opportunities for regular check-ins to support mHealth tool use [41,46]. One of the studies considered gender or sex, as the intervention was tailored to address the unique needs of caregivers of different genders [46]. Another study considered socioeconomic status by deliberately selecting inexpensive mobile apps and devices [61]. Features of relationships between caregivers and care recipients were considered in the study design such that the mHealth intervention was a collaborative tool whereby older adults and their caregivers worked together on their health management [48]. None of the studies mentioned considering participants' occupation, religion, education, disability, sexual orientation, or time-dependent relationships when describing the design of their mHealth interventions. --- Reporting of PROGRESS-Plus Factors in Participant Recruitment At the participant recruitment stage, 57% of studies considered ≥1 PROGRESS-Plus factor [38,40,42,[44][45][46]49,[51][52][53][56][57][58][59][60]64]. Approximately 32% considered features of relationships [38,40,44,46,51,52,58,60,64]. Approximately 18% of studies considered place of residence in participant recruitment [40,42,53,56,57]. Approximately 14% of studies reported that they used specific recruitment strategies to help ensure that various races, ethnicities, cultures, and languages were represented in their study samples [46,49,53,58]. Approximately 11% of studies considered age [38,45,60]. Approximately 7% of studies considered social capital [56,59] and 7% considered disability [38,46]. One of the studies considered time-dependent relationships [46], and another considered gender or sex [59] at the stage of participant recruitment. No studies mentioned occupation, religion, education, socioeconomic status, or sexual orientation during participant recruitment. --- Reporting of PROGRESS-Plus Factors in Results or Findings All but 1 study [54] described ≥1 PROGRESS-Plus factor within their results or findings. These factors were typically reported as part of the sample demographics. The key demographic characteristics of the caregivers in the included studies are presented in Table 2. The most commonly reported PROGRESS-Plus factors within the included articles' results or findings were age and gender or sex [37][38][39][40][41][42][43][44][45][46][47][48][49][50]52,53,[55][56][57][58][59][60][61][62][63][64]; features of relationships [37,39,40,42,43,45,46,48,49,51-53, 55-59,61,63]; education [37][38][39]44,[46][47][48][49][50]52,55,56,58,61,63,64]; and race, ethnicity, culture, and language [38,41,43,[45][46][47][48][49]53,58,60,62,63]. Other factors reported in the results or findings included socioeconomic status [38,44,48,53,61,63,64], social capital [48,[55][56][57]59,61,64], place of residence [40,49,53,56,62,64], and occupation [50,52,56,61,63,64]. A small number of studies reported on caregivers' disabilities [49,61,63], time-dependent relationships [49,58], and religion [64]. No studies reported on sexual orientation in their results or findings. --- Reporting of PROGRESS-Plus Factors in Discussion or Limitations Approximately 79% of studies considered ≥1 PROGRESS-Plus factor in the discussion or limitations sections of their studies [37,38,40,41,43,44,[47][48][49][50][51][52][53][54][55][56][58][59][60][61][62][63]. The most frequently discussed PROGRESS-Plus factors in the included articles' discussion or limitations were age [37,38,40,41,43,48,50,51,53,54,60,62,63], such as challenges faced by older caregivers in using mobile devices; race, ethnicity, culture, and language [40,41,43,47,49,52,53,55,58,60], such as a lack of diversity of the study sample; and place of residence [40,44,47,49,51,53,55,56,61], such as challenges related to the lack of access to stable internet in rural locations. Other PROGRESS-Plus factors described in the study discussions or limitations were gender or sex [38,41,52,54,55,63], education [37,38,49,52,56,63], and socioeconomic status [44,47,48,52,53,63]. To a lesser extent, caregivers' social capital [48,56,59], disabilities [38,49], features of relationships [54,55], and time-dependent relationships [37,49] were also discussed. No studies considered occupation, religion, or sexual orientation in their discussion or limitations sections. --- Quantitative Caregiver Outcomes --- Outcomes Relating to Caregiving Approximately 21% of studies assessed the impact of mHealth interventions on outcomes related to caregivers' capabilities or experiences in providing care. These outcomes included caregivers' self-efficacy [44,63], sense of competence [37] and confidence [46] in their caregiving role, knowledge related to the care recipient's condition [63], positive care experience [37], and caregiver burden [43,44,46,63,64]. Although some studies found that caregiving self-efficacy and knowledge improved after the implementation of an mHealth intervention [44,63], other studies observed no difference after the intervention in caregivers' sense of competence [37], confidence [46], or positive caregiving experience [37]. Approximately 14% of studies using the Zarit Burden Inventory [65] found that mHealth interventions led to improvements in caregiver burden [43,44,46,64]. However, one of the studies, which specifically assessed caregiver burden related to the management of urinary incontinence, found that burden was similar before and after the mHealth intervention [63]; however, study investigators noted that the intervention did not worsen caregiver burden [63]. --- Outcomes Relating to Caregivers' Health and Well-being Approximately 39% of studies assessed the impact of mHealth interventions on various aspects of caregivers' health and well-being [37,40,[42][43][44]46,47,[60][61][62]64]. Impacts on caregivers' mental and psychological health status were assessed in 25% of studies [42,44,46,[60][61][62]64], with generally positive results. Specifically, mental health status [44], psychological well-being [42], depression [46,60], mood [60], distress [46], and fatigue [64] were each noted to have improved after the implementation of an mHealth intervention. For example, the implementation of the WeCareAdvisor tool, designed to provide caregivers with peer navigation, information, and daily messaging, led to significant improvement in self-reported distress [46]. In this study, those in the control group demonstrated a significant decrease in their confidence in caregiving [46]. Conversely, a study that assessed caregiver stress by testing cortisol levels in saliva in a pretest-posttest design found no differences after the use of an mHealth intervention designed to manage the behavioral and psychological symptoms of dementia [64]. Caregivers' self-appraised happiness was also unchanged after the intervention in one of the studies [62]. Approximately 11% of studies assessed outcomes related to caregivers' physical health and well-being [44,47,64]. Caregivers self-reported improvements in their general physical health status following the use of an mHealth intervention to support the well-being and community living of older adults and their spousal caregiver dyads [44]. Ptomey et al [47], who implemented an mHealth app to encourage exercise, observed that caregivers' weekly moderate physical activity increased by 49 minutes per week over the 12-week intervention period, whereas light physical activity increased by 11.6 minutes per week. However, Park et al [64] found no difference in caregivers' sleep quality after the implementation of a supportive mHealth app. Approximately 14% of studies used caregivers' quality of life as an outcome measure for their respective interventions, with mixed findings. Ptomey et al [47] found nonsignificant trends toward improvement in quality of life after the implementation of an mHealth intervention. Beentjes et al [37] and Tyack et al [62] found no significant changes in quality of life following their interventions aimed at supporting caregivers in finding user-friendly apps and viewing art to encourage therapeutic reminiscence, respectively. Salin and Laaksonen [40] observed that some aspects of quality of life, in fact, worsened, albeit mildly . One of the studies assessed the impact of an mHealth intervention on caregivers' social engagement and found high positive responses using the Kaye Gain Through Involvement Scale [66], suggesting that the gains in well-being experienced while using the mHealth intervention may be applicable when tested in a larger sample [43]. However, the study investigators noted that their sample was meant only for determining intervention efficacy and warranted testing with a larger sample [43]. --- Outcomes Related to Usability, Feasibility, and Acceptability of mHealth Interventions Half of the reviewed studies assessed outcomes related to the usability, acceptability, or feasibility of mHealth interventions for caregivers of older adults [38][39][40][41]45,47,48,[57][58][59][60][61][62][63]. Approximately 32% of studies measured the usability or ease of use of mHealth interventions by caregivers [40,41,45,47,48,58,59,61,63]. Approximately 14% of articles used the System Usability Scale [67] to do so; usability scores varied across studies, ranging from marginally acceptable [45], moderate [48], and good to excellent [61]. Only 4% of studies compared the system usability scores across 2 phases of their mHealth app intervention. Sourbeer et al [41] found that usability did not significantly improve in a subsequent version of their mHealth app updated in response to participant feedback. The remaining 18% of studies assessed caregivers' ease of use or perceived user-friendliness of the mHealth intervention using descriptive statistics or averaged Likert scale scores. These studies generally reported positive results, suggesting that caregivers believed the interventions were easy or very easy to use [40,47,58,59,63]. Approximately 21% of studies examined caregivers' satisfaction or positive feelings toward the intervention [39,40,47,48,[58][59][60][61]. Most reported that caregivers were generally satisfied with the mHealth intervention, perceived the intervention as relevant and useful to their caregiving activities, and felt positive about their experiences with the intervention [39,40,47,48,[58][59][60][61]. However, greater technical difficulties were reported in a study of participants who lived rurally and reported lower levels of satisfaction [40]. Approximately 29% of studies explored the feasibility of an mHealth intervention by measuring the regularity, frequency, and extent of its use by caregivers over the intervention period [38,[57][58][59][60]62]. Use varied across the included studies, and investigators did not consistently establish expectations of use for their participants nor defined what constituted adequate use of the intervention. Tyack et al [62] reported that the participants used their app at least five times during the intervention period, as suggested by the study investigators. Callan et al [38] found that 22 out of 27 caregivers used the mHealth intervention regularly . Baseline caregiver stress, worry, and sleep quality did not adversely affect the use of the mHealth intervention, and caregivers with the highest self-reported stress and worry reported the highest levels of mHealth intervention use [38]. Sikder et al [60] reported that over half of their 17 study participants accessed ≥75% of the informational documents in their mHealth app. The remaining 11% of studies reported varying frequencies or hours of use per week during the intervention period [57][58][59]; however, these studies did not comment on whether these frequencies constituted low, medium, or high use of their mHealth interventions. Approximately 11% of studies assessed feasibility by measuring the intervention attendance and retention of caregivers during the intervention period [40,45,47]. The attendance rates for caregivers varied from 72% [40] to 97.1% [45]. Ptomey et al [47] and Hastings et al [45] reported similar figures for the caregiver-care recipient dyads completing their interventions. Other feasibility measures used by the reviewed studies included the extent to which caregivers followed or adhered to the mHealth intervention [38,63]. Callan et al [38] reported that caregivers' continued engagement in a cognitive training mHealth intervention program was evidenced by improvements in their ability to perform cognitive training tasks. Davis et al [63] reported that caregivers were capable of learning and implementing the prompted toileting strategies to support care recipients with the help of an mHealth intervention, as evidenced by a reduction in care recipient wetness in 2 out of 3 participant dyads. --- Qualitative Caregiver Findings --- Overview Of the 28 studies, 7 qualitative studies and 7 mixed methods studies presented findings relating to caregivers' experiences of engaging in mHealth interventions [49][50][51][52][53][54][55][56][57][58][59][60][61][62]. These qualitative findings included --- Positive Experiences With mHealth Interventions Most studies highlighted promising findings related to the positive impacts of caregivers' experiences with mHealth interventions. Participants across the included studies found mHealth interventions to be helpful, user-friendly, and easy to understand [49,50,54,55]. mHealth interventions were perceived to help caregivers connect with the care team and provide care for their loved ones [53,55,57,60,61]. The information provided through mHealth interventions was described as relevant to addressing participants' educational needs [49,52]. Caregivers also valued the role of mHealth interventions in detecting their stress levels [50] and facilitating timely connections to a diverse range of professional services and social support [49,52,54,56,62]. Participants in the included studies reported benefits to their emotional and cognitive well-being [60,62] and described reappraising and feeling closer to the care recipient [54,62]. The mobile delivery of the interventions also contributed to feelings of safety and security, as caregivers could participate from their homes [54,56]. Although some participants initially felt a lack of confidence in using technology, caregivers in 7% of studies reported becoming more engaged and comfortable over time by integrating the mHealth intervention into their lives [54,57]. --- Challenging Experiences With mHealth Interventions Several studies described the negative aspects of caregivers' experiences with using mHealth interventions, although these were often reported as being applicable to only a minority of participants. Approximately 11% of studies indicated that some participants felt that the mHealth intervention was too complex or difficult to understand [49,51,60]. In another study, participants felt that the intervention included questions that were overly obtrusive or confronting; for example, participants were not always comfortable answering questions they perceived as challenging [55]. Some studies highlighted caregivers' concerns regarding the potentially detrimental impacts of mHealth interventions; for example, interventions that facilitated reminiscence could trigger painful memories and lower mood [54,62]. Hughes et al [50] further described caregivers' concerns regarding the diversion of their time and attention toward the mHealth intervention and away from the care recipient. One of the studies highlighted the preference of some participants for in-person interventions, citing physical contact as an important element of care , which was not possible in a digital environment [56]. --- Barriers to Caregivers' Engagement With mHealth Interventions Caregivers relayed frustration with the usability of mHealth interventions, including difficulties navigating the intervention on their mobile devices [49,50,62]. Challenges included print that was too small [49,50], screens that were overly sensitive or had too much glare [62], and language that was too complex [49]. Several studies highlighted a lack of familiarity or experience with technology as a key barrier to the use of mHealth interventions, particularly for older caregivers [51][52][53]55]. The busy schedules of caregivers for older adults were also identified as a barrier to regular mHealth intervention use, particularly if caregivers were often pulled away from their devices by care recipients or if they were experiencing health issues themselves [50,52,58,60]. In other cases, participants felt that the intervention's content was not relevant to their immediate needs [49,51] or lacked realism and up-to-date links to relevant resources [49]. Other barriers included the prohibitive cost of mobile devices and internet or data plans [52] and the availability of a stable internet connection in rural regions [56]. --- Caregivers' Perspectives Regarding Next Steps Qualitative findings frequently incorporated participants' suggestions to make mHealth interventions more user-friendly and accessible to caregivers. Suggestions included simplifying the intervention's interface or instructions, enlarging text and images, and including subtitles on video resources for individuals with hearing impairment [49,52,61,62]. Participants voiced the need for ongoing technical support, particularly for caregivers who were unfamiliar with using mobile devices [51,56]. The participants also made suggestions to develop more relevant and up-to-date content for mHealth interventions. Several studies highlighted the need to embed local and national services for caregiver support, including interventionists and respite care [58][59][60]. For interventions that targeted the caregiver-care recipient dyad, participants highlighted the need for more information specifically related to their own health, such as healthy coping [49,52,58,61]. Participants also called for greater emphasis on topics that caregivers often find difficult, including information about deciding to move to a care home, managing activities of daily living and aggressive behaviors, and resources for individuals experiencing abuse [49,52,58]. Other findings suggested to improve mHealth engagement among caregivers included greater ethnic diversity portrayed within the mHealth intervention [49], establishing a reward system to encourage regular use [50], and creating a component for the care recipient to be included when the caregiver uses the mHealth intervention [50]. --- Discussion --- Principal Findings This systematic review examined how health and social equity are considered in the design, implementation, and evaluation of mHealth interventions developed for caregivers of older adults using the PROGRESS-Plus framework. The interventions described in the included studies were designed to create linkages between caregivers and external supports, streamline and optimize caregiving activities, and encourage a focus on caregiver health and well-being. As such, evidence on the impacts of caregiver-focused mHealth interventions was synthesized across a range of outcomes. The findings indicate that health and social factors are not consistently taken into consideration when designing research studies . Furthermore, participant characteristics are most often only reported within study results when summarizing participant characteristics or when identifying limits to the generalizability of the findings. However, this review highlights how mHealth interventions are well-positioned to improve caregivers' self-efficacy and knowledge, their perceived mental and physical wellness, and their relationships with care recipients. The usability and acceptability of mHealth interventions were characterized by ease of use, ease of navigating technical challenges, and relevance of intervention content to the caregivers' individual roles and context. --- Consideration of PROGRESS-Plus Factors in Studies on mHealth Interventions for Caregivers of Older Adults --- Overview Most studies in this systematic review on mHealth interventions for caregivers of older adults considered some PROGRESS-Plus factors, particularly when describing their study samples. However, such demographic reporting reflects standardized Garnett et al JMIR AGING --- XSL • FO RenderX reporting practices of participant composition rather than deliberate and targeted approaches to recruiting caregivers across sociodemographic characteristics to determine whether an intervention is suitable for a diversity of participants. The factors described in the following sections were considered critical in the intervention design. --- Gender Sex or Sexual Orientation Importantly, few studies considered actively recruiting caregivers of different self-reported genders or considered the relevance of gender in intervention design or implementation. Research suggests that biological and gender differences affect health across a range of parameters such as risk, disease incidence, and the need for health services [27]. Furthermore, sexual orientation was, in fact, eclipsed across all studies, particularly when many studies focused on caregiver health and well-being, which includes the relationship they have with care recipients. Recent evidence indicates that sexual and gender minority caregivers, such as those identifying as queer and transgender, report higher depressive symptoms than the overall population of caregivers of people with dementia [68]. This finding highlights the importance of diversifying samples across genders and sexual orientations to reliably assess and address caregivers' mental health. The importance of considering the intersections among gender, sexual orientation, and other sociodemographic factors was also highlighted in the survey of a cross-sectional sample of members of the National Alliance for Caregiving. Caregivers who identified as lesbian, gay, bisexual, and transgender were more likely to be racially and ethnically diverse and represent lower socioeconomic classes than those who did not [69]. --- Education Education, although frequently reported in demographics, was also rarely considered as an important factor in informing intervention design and recruitment. Women with lower education are more likely to assume caregiving roles than those who have had additional educational opportunities [11]. Lower literacy levels among caregivers can affect their ability to navigate the health system and locate appropriate support for themselves and their care recipient [70], factors that can directly influence the design and usability of mHealth interventions. For example, lower literacy can affect comprehension of text-based content in mHealth apps, the ability to correctly enter spelled words in search functions, and the ability to navigate app menus [71]. The importance of designing mHealth interventions that account for varying levels of educational background is underscored by the association of literacy with health and digital literacy [72]. The findings of the included studies suggest that experience with technology can be a key barrier to the use of mHealth interventions, particularly among older caregivers [51][52][53]55]. A survey of a broad age range of caregivers suggests that younger caregivers are more than twice as likely than older caregivers to be receptive to using mHealth apps to support them in their caregiving roles [24]. For older adults, trust in technology as it relates to privacy and access to information can be an important factor in the use of mHealth interventions, especially given the heterogeneity of this population [24,73]. These findings suggest that exploring barriers and facilitators, as identified by the included qualitative studies, aimed at educating older adults on how to use mHealth interventions is essential to facilitate perceived trust, comfort, and usability of technology. Thus, beyond education as a social determinant of health, wide disparities exist across caregivers in comfort with using various technologies, such as tablets, iPads, and mobile phones [73]. --- Socioeconomic Status Socioeconomic status was minimally considered in the intervention design and was most often addressed when describing sample characteristics. Multiple studies reported providing participants with devices to support the use of mHealth apps [37][38][39][40][41]43,[45][46][47]51,[53][54][55][56][57][61][62][63]. In some cases, participants were allowed to keep the devices; however, especially in those instances in which they were not, the feasibility of such interventions for caregivers across income levels needs to be explored. Some interventions were designed to facilitate communication access to health professionals and other individuals , highlighting the need for access to a reliable internet connection. This lack of access may be due in part to financial constraints, as a survey of caregivers in the United States found that cost was a commonly reported barrier to the use of technology [74]. Furthermore, older adults living on fixed incomes may be reticent to spend money on devices they do not value or find overly complicated [75]. Importantly, older caregivers tend to have fewer technological devices than their younger peers, and these technologies are often used for communication purposes rather than health management purposes [18]. Although most caregivers report valuing technology, those that use it for health-related activities tend to use it for targeted caregiving activities such as medication tracking or safety [18]. Therefore, additional support or education may be required to increase caregiver uptake of mHealth interventions as a tool for addressing broader caregiver needs such as communication with health teams or liaising with other caregivers. Computers and smartphones are increasingly being owned by people with higher income and education, and the provision of caregiver support through mHealth apps could increase inequalities if economic resources are not considered in the design and implementation of these interventions [71]. --- Culture, Language, and Race The nature of caregiver-care recipient relationships can be an important factor in the design of mHealth tools, particularly when it comes to cultural expectations of family members, gender roles, and other caregiver demographics. The included studies had samples primarily made up of women, validating the literature that suggests women are most likely to provide caregiving support, corroborating cultural norms across a range of identities [76]. However, these studies did not address how intersecting identities might shape expectations and responsibilities within a caregiving role [11,12,68]. Research suggests that culture strongly affects caregiving but that cultural influences on the caregiver role must be understood within the context of race and gender socialization [77]. For example, individualistic or Western notions of strategies to address caregiver burdens, such as spending time alone or sharing caregiving responsibilities with friends or family, might not resonate with caregivers from other cultures, particularly those with a strong sense of filial responsibility or immigrant caregivers without local support [78]. Furthermore, mHealth apps not provided in caregivers' first languages decrease accessibility and would require careful translation and cultural adaptation to remain meaningful [79]. The impact of these factors on caregiver-specific outcomes, such as caregiving self-efficacy, health and well-being, and technology usability, is yet to be explored. Intersecting identities are increasingly important to consider when tailoring web-based caregiver interventions to participants' individual needs [19]. --- mHealth Interventions Developed for Caregivers of Older Adults --- Impacts of mHealth Interventions on Caregiver Health and Wellness Studies evaluating mobile technology interventions aiming to promote caregivers' perceived mental and psychological health reported benefits to their emotional and cognitive well-being [60,62]. Some of these interventions, such as the videoconferencing platform developed by Lai et al [44], were designed in lieu of in-person community services, following shelter-in-place orders during the COVID-19 pandemic. Connecting caregivers to professional and peer support using web-based technologies has been shown to improve mental health outcomes and can help caregivers overcome common access-related barriers related to PROGRESS-Plus factors, such as geographical and time constraints or community mobility limitations related to physical or mental health [18][19][20]. However, findings from the included studies suggest that caregivers still require opportunities for in-person interaction , suggesting that the impact of hybrid models of interventions to improve caregiver health and wellness is not well understood [20]. Furthermore, a review of these interventions using the PROGRESS-Plus factors suggests that, although caregivers stand to benefit from mHealth interventions and many older adults report being comfortable with smartphone use, uptake may continue to be constrained if support is not provided to help caregivers learn and familiarize themselves with mHealth apps at the outset [80]. Hybrid approaches have the potential to increase caregiver self-efficacy, as opposed to overwhelming caregivers with new tools and technology, which warrants further research. --- Supporting the Caregiver Role Through mHealth Interventions Caregivers' ability to perform their roles was a key focus of the examined mHealth interventions and outcomes of interest within the included studies. Although some interventions focused on creating external structures that facilitated responsibilities of providing care , the use of these tools had the potential to complicate caregiving responsibilities. For example, in one case, caregivers described that the increased screen time to engage in the intervention was taking away from the time they had to complete other caregiving tasks [58]. The impact of such detrimental experiences, as they relate to, for example, PROGRESS-Plus factors of gender-informed cultural caregiving roles, features of relationships, or caregiver disability, is not well understood. Wasilewski et al [34] found that caregivers' decline in web-based intervention use may be attributed to a malalignment with their specific needs and capabilities across the caregiving trajectory. In such cases, it is important for those recommending mHealth interventions to caregivers to consider whether a particular intervention itself might increase the caregiver burden [81]. Furthermore, research suggests that if older adults perceive an mHealth app to be beneficial to their health and well-being, their likelihood of ongoing and increased engagement with other apps increases [82]. Individualized tailoring of mHealth apps and providing the necessary access and universal design can foster equitable uptake and increase the potential benefits of mHealth interventions. --- Usability, Feasibility, and Acceptability of mHealth Interventions Overall, caregivers in the included studies were generally comfortable using mHealth interventions and reported positive impacts on their caregiving role [49,50,54,55]. However, findings such as the prohibitive costs associated with mobile devices and internet and data plans, in combination with the quality of internet provision to those living in rural settings, highlight the importance of equitable service provision across the PROGRESS-Plus factors [52,56]. The findings of this review also showed that 64% of studies [37][38][39][40][41]43,[45][46][47]51,[53][54][55][56][57][61][62][63] provided participants with the devices required to engage in the interventions, suggesting that the economic feasibility of these interventions needs to be better understood. Technical features such as app use data may provide valuable insights into the frequency and applicability of interventions to caregiver needs and their unique lifestyles. Furthermore, researchers have been urged to include older adults and their caregivers in the design and development of mobile app technologies [48]. However, a minority of the studies included in this review described stakeholder input as a component of their intervention design or implementation [40,50,[53][54][55]58,61]. Co-design approaches present important opportunities for engaging diverse populations to help ensure that mHealth interventions are inclusive and accessible. --- Implications Moving forward, an important reminder is that social determinants of health should be consciously considered in all aspects of mHealth intervention design and implementation to avoid perpetuating inequities experienced by historically and currently systemically disadvantaged caregivers of older adults living with chronic conditions [25,83]. Purposeful efforts to include a diverse range of participants in research, such as evidence-based recruitment strategies, can help redress these potential inequities and inform the development of more inclusive interventions [84,85]. The PROGRESS-Plus framework is an appropriate tool to help ensure that a health and social equity lens is applied in research design and reporting, the use of which should be widely endorsed [27,86]. This review highlights the need for high-quality mHealth studies. Particular attention must be paid to improving the design of mHealth interventions and ensuring equality in access and adoption of mHealth interventions [71]. Participatory action approaches to research, such as co-design, are ideal for ensuring that mHealth interventions meet the needs of diverse caregivers. Furthermore, inclusive design principles can be used in more traditional research methodologies to ensure that mHealth interventions do not amplify health disparities. This could be achieved by accommodating low literacy by including audio narration and visual depictions or by directing funding to increase access to human resource infrastructures that promote mHealth interventions in remote or low-income regions [71]. --- Strengths and Limitations The studies included in this systematic review represent the diversity of mHealth interventions that have been conceptualized and created to address caregiver needs. Unfortunately, many studies were found to be poorly designed and executed. Although half of the included studies assessed usability, feasibility, and acceptability of mHealth interventions, which are all important aspects of technology use, many of these used qualitative approaches and lacked overall methodological rigor. Given the variety of mHealth apps, technological devices, and implementation protocols, equivalent comparisons could not be made across studies. A small number of studies were identified evaluating the impact of caregiver-focused interventions on caregiver-specific outcomes, limiting the ability to make conclusive recommendations to guide practice. Encouragingly, some of the included quantitative studies that used valid and reliable standardized tools thoroughly described their approach to statistical analysis and generally addressed fidelity of intervention delivery. In this review, multiple steps were taken to achieve methodological rigor. The review was conceptualized and designed using an equity framework and the best evidence on interventions for caregivers of older adults. The search strategy was developed in consultation with a health research librarian, and database searches, screening, data extraction, and risk of bias evaluations were conducted in duplicate, with a strong agreement between reviewers. The review protocol was also made publicly available a priori and was adhered to without any deviations. In addition, the PRISMA and PRISMA-Equity guidelines guided each phase of this study [28,87]. Inevitably, this study has some limitations. Although these searches were conducted by health and rehabilitation investigators across 3 large academic institutions in the Global North, these institutions use similar health research databases and search algorithms, which can affect future reproducibility . The identification of potentially eligible literature from the Global South, other disciplines beyond health research , or those that are categorized in other ways is another limitation of this review. However, this study highlights that research on mHealth interventions for caregivers of older adults primarily occurs within applied health settings. As such, future reviews should examine non-peer-reviewed evidence such as reports and program evaluations produced by the government and health authorities that trial mHealth interventions. This study could have been further strengthened by involving additional team members, such as administrators of clinical settings who would implement mHealth interventions and, most importantly, caregivers of older adults themselves. By selecting the PROGRESS-Plus framework as a theoretical guide, this study did not examine the included interventions and investigations in light of compounding factors that disadvantaged caregivers or capture other health and social factors beyond the framework . However, using the framework as an approach to name and identify how key individual factors have been considered in intervention design and evaluation, this study has set the stage for future investigations that examine the confluence of multiple social determinants of health. --- Conclusions mHealth supports are well-positioned to support caregivers of older adults by providing them with information, communication, and assistance in their caregiving role. However, access, uptake, and the ability to benefit from this technology can be affected by the social determinants of health and inequities among caregivers. This systematic review of mHealth interventions to support caregivers of older adults suggests that these tools are well-received by caregivers and have the potential to support caregivers across a variety of parameters by facilitating education, communication, and a sense of security for caregivers. The social determinants of health and equity factors are not widely considered in the design and implementation of mHealth interventions, although these parameters are frequently collected for demographic reporting. Recognizing that there are many challenges in designing and implementing mHealth interventions that are equitable, going forward, it will be important to strive for greater inclusion of the social determinants of health at all stages of mHealth development and implementation if there is to be widespread successful uptake of this supportive technology. --- Conflicts of Interest None declared. --- Multimedia Appendix 1 Search strategies for all databases. ©Anna Garnett, Melissa Northwood, Justine Ting, Ruheena Sangrar. Originally published in JMIR Aging , 08.07.2022. 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 Aging, is properly cited. The complete bibliographic information, a link to the original publication on https://aging.jmir.org, as well as this copyright and license information must be included.

Background: Informal caregivers, hereafter referred to as caregivers, provide support to older adults so that they can age safely at home. The decision to become a caregiver can be influenced by individual factors, such as personal choice, or societal factors such as social determinants of health, including household income, employment status, and culture-specific gender roles. Over time, caregivers' health can be negatively affected by their caregiving roles. Although programs exist to support caregivers, the availability and appropriateness of services do not match caregivers' expressed needs. Research suggests that supportive interventions offered through mobile health (mHealth) technologies have the potential to increase caregivers' access to supportive services. However, a knowledge gap remains regarding the extent to which social determinants of health are considered in the design, implementation, and evaluation of mHealth interventions intended to support the caregivers of older adults. Objective: This study aimed to conduct a systematic review to determine how health equity is considered in the design, implementation, and evaluation of mHealth interventions for caregivers of older adults using Cochrane Equity's PROGRESS-Plus (place of residence, race, ethnicity, culture, language, occupation, gender, religion, education, social capital, socioeconomic status-plus age, disability, and sexual orientation) framework and synthesize evidence of the impacts of the identified caregiver-focused mHealth interventions. Methods: A systematic review was conducted using 5 databases. Articles published between January 2010 and June 2021 were included if they evaluated or explored the impact of mHealth interventions on the health and well-being of informal caregivers of older adults. mHealth interventions were defined as supportive services, for example, education, that caregivers of older adults accessed via mobile or wireless devices.In total, 28 articles met the inclusion criteria and were included in the review. The interventions evaluated sought to connect caregivers with services, facilitate caregiving, and promote caregivers' health and well-being. The PROGRESS-Plus framework factors were mainly considered in the results, discussion, and limitations sections of the included studies. Some PROGRESS-Plus factors such as sexual orientation, religion, and occupation, received little to no consideration across any phase of the intervention design, implementation, or evaluation. Overall, the findings of this review suggest that mHealth interventions were positively received by study participants. Such interventions have the potential to reduce caregiver burden and positively affect caregivers' physical and mental health while supporting them as caregivers. The study findings highlight the importance of making support available to help facilitate caregivers' use of mHealth interventions, as well as in the use of appropriate language and text.The successful uptake and spread of mHealth interventions to support caregivers of older adults will depend on creating opportunities for the inclusive involvement of a broad range of stakeholders at all stages of design, implementation, and evaluation.

Introduction Obesity disproportionately affects rural communities, and Appalachia has some of the highest obesity rates in the nation. Successful policy, systems, and environmental interventions to reduce obesity must reflect the circumstances of the population. We used a health equity lens to identify barriers and facilitators for healthy food access in Martin County, Kentucky, to design interventions responsive to social, cultural, and historical contexts. --- Introduction Rural communities in the United States have disproportionately higher rates of preventable obesity-related illness and death compared with their urban counterparts . Characteristics of some rural regions, such as Appalachia, present challenges that exacerbate the high rates of obesity and related health conditions in certain populations . The lack of reliable food retailers in Ap-palachia reflects a malfunctioning food system unable to support healthy eating patterns . In addition, persistent poverty and unemployment are linked to a high prevalence of preventable mortality in Appalachia . Social, political, and historical contexts influence the effectiveness of programs and interventions aimed at promoting healthy food choices . These contexts are unique to each community, with distinctive regional characteristics among Appalachian communities . Policy, systems, and environmental interventions and strategies designed for communities with a disproportionately high prevalence of obesity, such as communities in Appalachia, are needed. However, established approaches have been largely ineffective in adult populations that have inequities ; therefore, new and novel frameworks for designing and implementing successful, equitable interventions are necessary. The Getting to Equity framework provides a guide for implementing obesity prevention activities that gives priority to health equity principles , an approach that is potentially important in Appalachia . Each quadrant in the framework represents a type of intervention approach. The upper 2 quadrants, which include increasing healthy options and reducing deterrents, focus on potential policy-change and systems-change interventions. The lower 2 quadrants, which include building on community capacity and improving social and economic resources, reflect individual and community resources and capacity. Each identified strategy in each quadrant has shown promise or relevance in the mitigation of health disparities. Kumayika argues that balance and synergy are needed among the strategies to be effective at producing sustainable, positive change . Our study, in Martin County, Kentucky, was part of the larger, multiyear High Obesity Program, which has the overall aim of reducing rural obesity and decreasing the risk of preventable mortality . Although the High Obesity Program is multifaceted, it emphasizes increasing geographic or financial access to healthy foods. In addition, the High Obesity Program requires use of existing infrastructure in rural communities, such as the Cooperative Extension Service and community coalitions. The aim of this study was to use the GTE framework to identify barriers to and solutions for increasing access to healthy foods in a rural, resource-poor environment. --- Methods We conducted our focus group study in September and October 2019 in Martin County, in eastern Kentucky, which is adjacent to West Virginia. Approximately 39% of residents live in poverty, and the county struggles with high unemployment and outmigration . According to the Food Access Research Atlas, more than 33% of county residents live 20 miles or more from the nearest supermarket, which would classify the entire community as a food desert . Approximately 1 in 5 Martin County households are considered food insecure . One of the few community assets to promote healthy eating in the county is the nonprofit organization Grow Appalachia. Established at Berea College in 2009, the mission of Grow Appalachia is to increase access to fresh fruits and vegetables by building capacity to successfully grow home gardens. Grow Appalachia is active in Martin County, supplying participants with assistance to grow food . In summer 2019, we purposively recruited adults from Martin County for participation in focus groups. The Martin County Extension agent recruited participants, as did community coalition members. We placed informational flyers in the Martin County Extension Office and posted information on its Facebook page. Eligibility criteria for participation were being 18 or older, speaking English, and residing in Martin County. Participants completed written informed consent and completed a brief sociodemographic survey. Participant assignment to focus groups was random with 1 exception: staff members of a local middle school were recruited to participate in a focus group held at that location. A trained moderator facilitated the focus groups using a written moderator guide , and 2 research team members took notes . All focus groups took place in September and October either in the Martin County Extension Office or in the local middle school and lasted approximately 1 hour. Participants received a $25 voucher for a local grocery store as an incentive to participate. The University of Kentucky Institutional Review Board approved this study. --- Box. Questions for Focus Groups on Healthy Eating in Appalachia Where are the places you can purchase food in your community? • How easy it is to get fruits and vegetables at these locations? • Do many people in your community purchase food at farmers markets? • Where can people go in your community to get food if they are unable to purchase it? Do you think your community is designed to promote healthy eating choices? Why or why not? • What factors in your community make it easier to eat healthy? • What factors in your community make it harder to eat healthy? • Would you consider transportation a barrier? What other resources do you think would be helpful to have in your community to allow people to purchase fruits and vegetables? What would be some ways to motivate or encourage people in your community to eat fruits and vegetables? We summarized the data from the brief sociodemographic survey, and we compared the sociodemographic composition of focus group participants with the composition of the Martin County population as reflected by data from the US Census Bureau . Focus groups discussions were audio recorded and transcribed verbatim. Multiple investigators reviewed focus group transcripts using a grounded theory approach . Investigators used an iterative inductive-deductive approach to identify themes on assets and barriers to healthy eating in the community. These themes formed the basis of codes that were analyzed in NVivo software version 12 . Investigators then used the GTE framework to categorize themes according to the 4 quadrants of intervention approaches and selected illustrative quotes for each theme. We conducted this analysis during January-March 2020. --- Results Thirty-four adults participated in 5 focus groups. The median age of participants was 46 years, and 27 were women . All participants were non-Hispanic White, and most participants had some college education or were college graduates. Compared with the Martin County general population, study participants were less racially/ethnically diverse, slightly older, and had higher levels of education. Investigators established several independent but interconnected themes related to healthy eating. Participants identified myriad barriers to healthy eating and a smaller number of assets in the community that promote healthy eating. These assets included Grow Appalachia and Cooperative Extension Service pro-gramming, both of which address barriers identified by participants to growing food, including knowledge of how to grow a garden and the ability to grow and sell food for a profit. Deeprooted community pride was also made evident as an asset. These assets collectively lie within the GTE quadrant of building community capacity. Several participants drew connections between Grow Appalachia and their capacity to grow and consume produce year-round. Where I was in the Grow Appalachia project, they paid for all my seeds and everything. . . . I bet there was between tools and everything, well over a $1,000 put into my garden. I was a participant in [Grow Appalachia], and I enjoyed it. . . I already knew a lot, but I have learned a lot more about canning and different things . . . we grew tomatoes, cucumbers, green beans, corn, zucchini, squash . . . peppers. [Referring to Grow Appalachia] What helped me most from that program was, um, my husband passed away 3 years ago, and since then it's been really hard to get it plowed. I have a plow, but it's big and I can't operate it. . . . That was so helpful to me, to get it plowed that first time. Because of community support from programs like Grow Appalachia, participants expressed the idea that residents could grow their own produce for consumption. Participants also described a distribution network that existed across the community in which residents shared produce with neighbors and family members, rather than selling it. I do share. I've not sold anything this year; it was the first year I had that big a garden. But yeah, my grandma, my parents, whoever, they want to drive out and help. I told them if they want to come help pick it, they can have some. Moreover, although a clear desire for homegrown produce was apparent among community members, the lack of interest in farming may result from the local view that cultivating homegrown produce is labor-intensive. Participants indicated that farming is not a lucrative endeavor in this region, further deterring interest among this population. Thus, the farmers market continues to dwindle in this county because of a lack of participating growers. Dad sells at the farmers market, and he has noticed it seems to be declining a little bit, especially as the year goes on. It starts out pretty strong, he says, but as the year goes on. . . . I don't know if they get burned out on produce, everyone gets used to eating fast food and stuff. There's no money in it. For the work and time and effort you put into it, if you don't just enjoy doing it, there is no money in it. You can't do it and make your car payment every month. You couldn't use it as a second income. There is no way to be profitable with it. Unless you are doing it on a mass scale. Participants described opportunities for encouraging homegrown produce, including enhanced knowledge of food preservation and opportunities to learn from those who have become experts through practice; however, most participants perceived opportunities as limited in their community. But it was, like, a couple in my church that does that stuff, and they kind of walked me though it and showed me. And I just wish we had more resources to show us how to do those things. Like our garden, I think I would plant a lot more, if I knew more about how to do the canning. Yeah, you know, he'll have, you know, lots of, you know, a lot of people have corn. Corn, you know, I'm pretty sure everybody has corn normally certain times of year, but green beans too quick. And you know, he always has lots of squash, and cucumber, tomatoes and stuff like that, and packs it up and takes it all home. We like a certain thing, we want cucumbers, and we want green beans, and we want tomatoes, and my kids don't really look at nothing else when we come. So, like you said, more green beans please. Although preferences were established, participants described being motivated to make healthy choices to set an example for younger generations. --- Discussion Using the GTE framework for obesity prevention, our study identified many barriers to, and a smaller number of solutions for, increasing access to healthy foods in the Appalachian region of Kentucky. Applying an equity-oriented lens to understanding rural food access requires recognition of fundamental conditions that shape individual experiences and the rejection of biases that blame individuals for circumstances beyond their control . Our findings reflect the decline of farming as an occupation in rural Appalachian communities, yet many participants spoke of home gardening as a self-sustaining food source for themselves or a network of people, such as family members or neighbors. Garden produce unused by the grower, we learned, is distributed to the community through an informal economy of food bartering and sharing. Food, in this fashion, acts as its fundamental purpose, a commodity valued at a worth woven into the fabric of Appalachian culture. This concept is important to consider when designing PSE interventions focused on food access in Appalachia. The declining fiscal contribution of farming, as well as the practice itself, has been gradual yet consistent in Appalachia . As our findings suggest, the decline in farming could be attributed to generational shifts in industry opportunities. In Appalachia, farming practices began to deteriorate in the late 19th century, when a new economic stimulus appeared in the form of timbering and coal mining . Since then, the region has continued to experience agrarian decline. The 2017 Census of Agriculture for Martin County showed 30 farms and 43 total producers ; the average age of producers was 47. Ten farmers reported being younger than 35; 17 reported farming as their primary occupation, and only 3 farmers sold directly to consumers . Furthermore, the Kentucky Appalachian region lost a disproportionate amount of farmland from 2007 through 2012: 9.2% compared with 0.8% across the United States . The effect of these declines in Appalachia has yet to be fully explored. However, it begs further investigation when considering factors that have led to the persistent poverty levels, poor health status, and dissolved food access points in this community. Health disparities in Appalachia, including those related to continued outmigration, have led to economic decline and increased poverty . From 2010 to 2019 alone, the population in Martin County decreased by an estimated 13.4% . The GTE framework further guides synergetic interventions and explores the intertwining realms that influence equity in the context of outmigration, economic decline, and increased poverty. Therefore, it is worth continuing to investigate the chasm between a community practice of food sharing and a farming decline as a mode to incor- porate GTE principles to improve healthy food access in rural Appalachian communities such as Martin County. --- PREVENTING CHRONIC DISEASE The shift from traditional farmers markets is increasingly evident, leaving communities and food systems to envision alternative modes in which to implement healthier lifestyle behaviors, including fruit and vegetable consumption . Small farms and home gardens are important assets in Appalachian heritage; they have numerous social and historical implications and reflect strong local values, such as self-sufficiency and esteemed locavore practices , bolstering their feasibility as effective interventions . The findings from our focus groups echo the role of small-scale home gardens in this Appalachian community as a mode of increasing access to fresh fruits and vegetables. Appalachian communities value these cultural customs, as evidenced by the rich history of heirloom vegetable seeds in the region . Future work should use culturally relevant tools and examine the existing food system infrastructure when developing novel strategies to increase access to fruits and vegetables outside traditional approaches. Although farmers markets have been viable interventions in some communities , they may not be suitable solutions for all, given the unique characteristics of Appalachian communities. For example, a qualitative study of 15 low-income Appalachian residents found that only 1 person regularly visited a farmers market, citing pricing and inconvenience as barriers . Although respondents reported generally positive attitudes toward farmers markets, the economic and cultural environmental landscapes and other barriers do not make them a plausible intervention for all Appalachian communities . The findings from our focus groups add to the growing body of research illuminating the health inequities Appalachian communities face. It is important to note the rapid decline of the socioeconomic landscape in rural communities compared with their urban counterparts . Although common barriers, such as affordability and access to healthy food, exist among low-income residents of both rural and urban communities, Appalachia has unique challenges, including low population density, geographic isolation, and persistent poverty, that amplify these barriers . An increase in poverty leads to less food affordability, particularly among rural low-income populations in the Appalachian region . Additionally, since the completion of our focus groups, 1 of only 3 grocery stores in this community closed. This further reinforced the food access barriers in this community. Inadequate access to healthy foods contributes to the declining health status of rural communities, including increased rates of obesity and chronic diseases . Inadequate access to healthy foods is challenging when coupled with aforementioned barriers and transportation access. Collectively, these factors make rural Appalachian communities distinctly different from impoverished urban communities when addressing improvements to food accessibility and, more broadly, the health status of populations. Despite probing feasible solutions for the multitude of barriers their food system presented, participants were not forthcoming with many solutions aside from suggested enhancement to current practices such as home gardening. For interventions to be successful, they must be tailored to unique community needs. For example, participants in our study deemed farmers markets impractical, although they are a common intervention to mitigate problems with food systems in rural communities. However, participants identified some community assets, particularly Grow Appalachia, an initiative established to address food insecurity by working with families to grow produce at home. Through training and technical assistance, Grow Appalachia enables communities to prepare, plant, and cultivate home gardens, improving access to nutritious foods and enhancing social enterprise to sustain an equitable food system . In 2019, the Martin County Cooperative Extension Office partnered with Grow Appalachia to enhance food security. The partnership enables Grow Appalachia to provide home gardeners with resources and services, such as equipment and seeds, while the Cooperative Extension Service provides ongoing support and training throughout the growing season. By supporting individual gardeners, the Grow Appalachia framework may be more effective in improving access to fruits and vegetables than sustaining the farmers market in this rural community. Furthermore, because of coronavirus disease 2019 , interest in the victory garden toolkit on how to grow gardens -distributed by Cooperative Extension offices -has increased. The increased interest lends support for continued interventions that focus on home gardening. Food preservation and cooking classes are additional services that support home gardeners and promote healthy eating and are services identified as desirable to this community. Future initiatives must consider the deeper roots of systemic issues to implement effective and equitable solutions. One issue influencing food choice in this community is basic food security. Martin County has historically faced high rates of food insecurity. Yet, because of the COVID-19 crisis, food insecurity is projected to increase by more than 5% to 26%; 1 in 4 households will experience food insecurity in the years to come . The repercussions of food insecurity will be numerous for an already vulnerable population. Moreover, Appalachia experiences persistent poverty , with Appalachian Kentucky having the highest poverty rate among all states in the Appalachian region . To address food access inequities, poverty and food security status must first be addressed. Addressing only 1 quadrant of the GTE framework is likely insufficient to imple- ment sustainable change in food access. The incorporation of additional strategies that support the 3 remaining quadrants of the GTE framework are needed to balance and enhance effectiveness and sustainability of future interventions. Furthermore, finding culturally relevant facilitators to promote healthy choices will be key to behavior change. PREVENTING CHRONIC DISEASE Our study has several limitations. We did not randomly select our sample; we used a purposive, community-engaged approach to recruiting. Participants reported higher levels of education than the general county population. Additionally, our sample included more women than men and older participants , limiting the external validity of our findings to other rural or Appalachian populations. In an equity perspective, this is an important limitation and suggests that the barriers identified in our study are likely not the only barriers that impede access to healthy food in the community. Finally, social desirability bias may have influenced respondents' comments. Despite these limitations, our study demonstrates the value of framing barriers to food access in a rural Appalachian population with an equity lens. Future PSE interventions to address food access in this and similar populations should consider using the GTE framework to envision new approaches that explicitly acknowledge social inequities that challenge healthy eating. Few macro-scale approaches, such as enhancing farmers markets, have shown broad success in rural Appalachia, which speaks to the heterogeneity of these communities . Designing food access interventions in rural Appalachia that explicitly acknowledge the social inequities in the region and actively engage community members are likely to be more successful than those that do not. This study revealed a novel overarching theme: enhancing community capacity through various channels that depend on the existing resources reported by community residents. Our findings validated the importance of having community buy-in to support the small grower through multiple avenues, including Grow Appalachia and Cooperative Extension Service programming. The COVID-19 pandemic has further affected the food system in Appalachian communities. Instead of enhancing farmers markets, future investigators focused on obesity prevention work in rural Appalachia must learn about the local food system and culture. This focus will enhance community capacity for growing personal gardens, increase food access availability, and improve equity. That whole generation of working people were worked their fingers to the bone. My grandpa had the garden, but then my dad's generation is the one quit gardening. a The Getting to Equity framework provides a guide for implementing obesity prevention activities that gives priority to health equity principles . b Selected qualifying quotes included; not all quotes included per GTE framework and qualitative methodology. c Assets identified by participants would be categorized into this quadrant, but they are not included here. --- PREVENTING CHRONIC DISEASE --- Author Information Corresponding Author: Kathryn Cardarelli, PhD, MPH, 635 S Limestone, Mandrell Hall 226, Lexington, KY 40506. Telephone: 859-257-2471. Email: [email protected]. Author Affiliations: 1 Department of Health, Behavior & Society, University of Kentucky, Lexington, Kentucky. 2 Family and Consumer Sciences Extension, University of Kentucky, Lexington, Kentucky. 3 --- Transportation barriers Transportation is a very big issue . . . it's getting out there and getting them to a grocery store that's a barrier for them. Transportation is the biggest issue for this community. . . . It is a big obstacle. . . . It is getting them to church, it is for getting them to school, it is for getting them to the grocery store, to the doctor, it is just a major issue. I have people that pay people to drive them out of the hollow basically. --- GTE quadrant: improve social and economic resources Persistent poverty I mean, we never knew we were poor until Johnson and Kennedy came and told us we were poor. Because they are not going to ask. I think it is just a pride thing for some people. Honestly, my biggest thing is that I can take an elderly woman who lives alone and is a widow and she gets $15 a month in food stamps. And I think that is insanity. She gets no food vouchers -she living off $771 a month. I mean, we're, like, the most unhealthy people in the country. This part, I mean that's just honest, central Appalachia it is. --- GTE quadrant: build community capacity c Lack of cooking skills There is a whole generation just like me . . . that is something that we didn't do, so we don't even know how to teach our kids to do that. There is a whole gap there of you know. They are some of the younger generation that asks, "Dad, well, how do you fix corn, how do you fix green beans?" They don't know how. They don't know to put it in a pot, put some water in it and put it on boil . . . they have no clue how to fix fresh vegetables. When

The prevalence of obesity is disproportionately high among people living in rural areas, yet many policy, systems, and environmental interventions designed to improve healthy food access in these environments have not been successful.An equity-oriented obesity prevention framework can guide investigators in identifying or tailoring acceptable interventions unique to a community's needs. What are the implications for public health practice? Community input to intervention development is crucial to the success of environmental changes to expand healthy food access in rural areas.

Introduction Social justice is commonly viewed as one of the social work profession's core values. Thus, social workers should challenge social injustice by working for and with oppressed individuals and groups and by addressing issues of poverty, unemployment and discrimination . Exploring social work students' views to understand how equipped they are to pursue the social justice mission of the profession should therefore be of central academic and practical interest. There are, however, surprisingly few empirical studies focussing on social work students' views on social justice-related issues from a comparative viewpoint. Such an approach is believed to help clarify whether future social workers are driven by common normative views that are important for social workers' readiness to challenge social injustice, or whether, instead, it seems as if variations in factors such as institutional, cultural and socioeconomic circumstances at a macro-level shape views of social work students. Thus, such knowledge is thought to be of a wider international interest from a number of perspectives, including social work education and student exchange and in a wider context, for the development of social work as a profession and for discussing the prerequisites for shared international notions of social work. Thus, this article explores the views of social work students studying in different socio-economic contexts and welfare regimes in relation to some key aspects assumed to be vital for the profession. Our specific research questions are as follows: Do social work students' motivations to study social work and their understandings of poverty seem to comply with the profession's goal of advancing social justice? Are there differences in social work students' views between the different jurisdictions as a result of varying institutional and structural conditions affecting social work education and practice? This article describes the social work profession as part of the broader welfare policy context of Finland, the Republic of Ireland and Northern Ireland, and reports findings from student surveys, with the aim of exploring the differences and similarities of social work students' views in Finland and across the island of Ireland. With reference to our aim of exploring possible commonalities in views, the jurisdictions chosen are taken to represent substantially different contexts, at least from a European perspective. Two different indicators related to social justice in a student context are also discussed and utilised: various general perceptions on poverty and various motivations for studying social work, respectively. --- The social work profession: a common purpose? Promoting social justice underpins the origins of social work, but, over the last century, the profession has struggled to effectively meet this challenge . According to the Global Definition of Social Work, social justice is a core principle of the profession and is recognised as one of the main professional values and a key aim and aspiration of the profession . Social justice is one of the main organising values for social work practice and education and is a 'shared ethical ground for social workers' across the world . A commitment to social justice specifically relating to addressing issues of poverty is outlined in the profession's ethical codes of the jurisdictions included in this study , in practice frameworks and standards , and social work scholarship . Rising levels of inequality and poverty globally mean the pursuit of social justice by the social work profession is particularly urgent and necessitates working in solidarity with those who are oppressed to alleviate poverty . According to the Department of Health of Northern Ireland , 'poverty is a social injustice' which needs to be tackled by the social work profession to enhance social wellbeing. This requires an understanding of the systemic nature of poverty and rejecting individualistic perceptions of the causes of poverty. --- Perceptions of poverty It has often been argued that attempts at alleviating social injustices are connected to a worldview in which poverty is caused by unjust structural features in society rather than individual flaws and shortcomings of people themselves. Theoretical discussions on the causes of poverty are traditionally divided into individual and structural categories or into three categories: individual, structural and fatalistic . Individualistic approaches refer to the importance of the behaviour of the poor, such as poor decision-making and poor work ethic. In the research literature, individual causes have also been linked to the concept of individual blame , attributing the causes of poverty to the individual, created by idleness and low morale. A structural approach to poverty relates to factors outside the individual's control . Here, poverty is seen as the result of low wages, high unemployment, lack of educational opportunities and other structural features which an individual is unable to influence. According to fatalistic explanations, poverty is the result of fate, such as illness or poor luck. In this article, we focus empirically on the attitudes of students on individual and structural causes, an approach common to previous attitude studies on poverty. Based on available research, social workers and social work students in various countries more often support structural rather than individual explanations for poverty , findings which have been explained by, for example, social work education, professional ethics and the exposure to various social problems, like poverty . Notwithstanding, within-group variations in views have not been uncommon . Assumptions regarding cross-national variation in views on the reasons for poverty have commonly been based on an 'institutional logic', assuming that values and attitudes of individuals are, on average, affected by those of the welfare state model of their country. From this point of departure , one might assume a higher support for individual poverty explanations on the island of Ireland than in Finland . However, findings so far have not provided any clear-cut support for such assumptions as regards the general public's views regarding the jurisdiction included in their study , whilst there have been national variations in views between Nordic countries . --- Commitment to social justice and other study motivations Another way of approaching students' commitment to social justice, is by investigating to what extent whether their Motivations for choice of career may be related to core values of social justice, human rights and equality . In previous research, motivations for studying social work have often been divided into intrinsic , extrinsic and those related to personal life experiences, such as childhood adversities , respectively. Intrinsic motivations, which emphasise different ways of helping people, especially those in vulnerable and disadvantaged positions, have been regarded as closely linked to social justice . Several previous studies have demonstrated that a majority of social workers and/or social work students embrace 'altruistic ', 'ideological' or 'intrinsic' values . Nevertheless, some studies have demonstrated that also more extrinsic, instrumental motivations, linked to questions of obtaining a secure position in the labour market, favourable career prospects, a good salary level or a respected status in society, might be of importance . This speaks in favour of also considering the prevalence of other than intrinsic motivations amongst students. In addition, difficult personal life experiences in particular, when relating to violence and psychological problems in the family as a child, have resulted in estimations by students that their family background had influenced their career choice . Further, positive experiences of being a social work client have been linked to the choice of the profession and have also been associated with a desire to influence and improve social work practice. It could be assumed that also all these types of motivations discussed could be affected by country context in general and/or the position of social work in the student's country . In addition to an impact of differences in welfare systems and underlying values, for example, on poverty and inequality , the relatively high status of social workers in the Nordics could lead to external motivations being ranked as fairly important in Finland. Contextual, socio-economic, country differences could also affect students' previous personal experiences of social problems and/or social work, and thus their study motivations. --- Welfare states of Finland, the Republic of Ireland and Northern Ireland The welfare states of Finland, the Republic of Ireland and Northern Ireland have often proven somewhat challenging to typologise. Esping-Andersen's revisit of his seminal Worlds of Welfare describes the Finnish welfare state as Social Democratic , characterised by the ideologies of universalism and equality, under which services and benefits are generous and accessible to all, taking on many aspects of traditional family responsibility, and social stratification is low. To achieve this, full employment and high taxes are essential . The UK is typically classified as a liberal welfare state , influenced by the thinking that higher levels of benefit will reduce incentives to work. Therefore, in this regime, sourcing of private welfare or insurance from the market is encouraged by the state, either actively through subsidisation of private welfare schemes, or passively by keeping social welfare benefits at a modest or residual level. Welfare spending in this regime is at the lowest end of the spectrum, with high-threshold, means-tested, targeted and time-limited benefits aiming only to ameliorate poverty. Consequently, taxation, redistribution of income and social rights are low, whilst income inequality and social stratification are high. Like Finland, the UK is not considered a pure example of its welfare regime. Rather it is modestly liberal with some universalistic provisions such as the National Health Service. Esping-Andersen originally classified the Republic of Ireland as a liberal welfare state and later failed to categorise it at all . Classification of the Irish welfare state has proven challenging, often situated between the Liberal and Christian Democratic paradigms . The Christian Democratic regime is characterised by intermediate levels of welfare spending arising from a balance between state and private provision of welfare. Taking up a midway position between Liberal and Social Democratic, Christian Democratic welfare states combine both social insurance and social assistance schemes. Lorentz has discussed the position of social work in relation to welfare state typologies, departing from a slightly different categorisation by Leibfried . According to this classification, Finland belongs to the Scandinavian welfare state model, whilst Ireland is placed within what is called the 'rudimentary welfare model' and the UK is placed within the residual welfare model, whilst Meuuwisse and Sw€ ard place both Ireland and the UK within the residual model regarding social work. In the Scandinavian model, social workers are mainly employed in the public sector as a part of a multidisciplinary network of services, aiming at minimising stigmatising effects of decisions and measures, giving social workers a relatively high social status. Social work within both the residual and the rudimentary model seems, in comparison with the Scandinavian model, to be more focused on measures directed at vulnerable population groups, whilst one difference between these latter models, at least historically, seems to have been related to differences in the scope of social work as part of the public sector in relation to other sectors . --- Welfare and social work in Finland Taking a closer look at the Finish welfare state, it has, like its Scandinavian neighbours, been characterised by a strong reliance on publicly organised and high-quality health and social services, covering the whole population . Also social work is performed as a part of these services, and thus, a vast majority of the social workers are employed as civil servants and are given a wide range of tasks . Social workers are required to have a master's degree from a university, with social work as the major subject or equivalent . This means that social work education in Finland is both extensive and strongly research-orientated both in intraand extra-Nordic perspective , and it is attracting a high number of applicants often with high grades from secondary education. Finland was hit more severely by economic crises in the early 1990s as compared to other Nordic and European countries, in part due to the cessation of trade after the collapse of the Soviet Union. As a result, the fairly comprehensive Finnish welfare system became subject to various reforms and retrenchments, resulting in rising income inequality amongst other things . Yet, as compared to the UK, welfare cuts in Finland have been rather subtle, gradually weakening social security benefits by not raising income transfers at the same rate as rising wages, combined with various tax cuts as well as by the introduction of stricter activation measures . Public responsibility for services had also been narrowed down and subjected to various New Public Management inspired changes and reforms , but the responsibility for a wide range of mandatory social services, including social work, has remained within the public sphere. --- Welfare and social work on the island of Ireland The social welfare systems of the Republic of Ireland and Northern Ireland, whilst different , have many commonalities. The Irish welfare system developed in close alignment with the UK following the 1922 partition of Ireland; however, comparable levels of protection were not offered to Irish citizens compared to residents in Northern Ireland . From 1979, the UK Conservative Thatcher government began a protracted shift away from welfare protection towards activation measures that required the unemployed to qualify for support . Politics of austerity following the financial crash in 2008 led to a suite of measures designed to reduce the welfare burden, dovetailing with the neo-liberal policies of the Conservative Party who has dominated government in one form or another since 2010. Activation policies for welfare entitlement aimed at enhancing employability and labour market participation for the unemployed did not become a feature of the Irish welfare system until the financial crash of 2008 . To the current day, social work practice principles and theories in both jurisdictions of Northern Ireland and Ireland continue to occupy and flow from a shared professional foundation, but simultaneously there are some clear examples of different approaches and emphases within specific fields of practice . Social work in Northern Ireland has, for example, distinct differences from the rest of the UK not least because of the thirty-year history of conflict . Differences in the political and social context are also reflected in the administration of social policy. In contrast to the rest of the UK, Northern Ireland has had an integrated health and social service for almost fifty years and this has contributed to increasing the numbers and prestige of social work as a profession . Despite differences in welfare provision to Finland, also most social work in the North and Republic of Ireland are today provided by statutory services and both jurisdictions require a minimum of a degree-level qualification to practice in the profession . In conclusion, whilst not always quite clear exactly what may be the possible effects related to various differences between Finland and the island of Ireland when it comes to social work students' views on social justice and their importance as part of their choice of profession, our assumption is that an effect of the structural and institutional differences between the respective jurisdictions would be reflected in the patterns of views revealed in our surveys, which will be of considerable interest. If differences were to be minor, however, the assumption of the dominance of common views amongst students in the social work profession would gain support. --- Materials and methods The present study is based on a common interest amongst a group of researchers from Finland and the island of Ireland in increasing the knowledge concerning the factors behind the thinking of social work students on issues of social justice. The analyses are based on two national surveys with similar ambitions as regards views on issues of social justice, which have been carried out in the respective jurisdictions. Through recurring discussions amongst the group of researchers involved on the interpretation of the questions to be included and their interpretation in their respective societal context, the ambition has been to guarantee sufficient conformity between the questions included to justify a comparison. The questions utilised are based on similar theoretical assumptions regarding study motives and perceptions of poverty and, whilst not identical, they are chosen to match each other as far as possible with the intention of capturing intrinsic, extrinsic and personal motivations, and general perceptions of poverty, respectively. In order to further strengthen our assumptions, principal component analyses were performed in order to determine whether the respective questions used to ensure study motivations load into three different components in both countries, as should be expected. This was found to clearly be the case. However, since the questions used are not identical, the analysis focuses on the respective patterns of motivations and perceptions amongst the students in Finland and the island of Ireland, and the comparison focuses on the relative importance of different types of motivations, and of different types of poverty perceptions. The Irish data are based on The Social Work Student Survey conducted in 2018 by The All-Ireland Social Work Research and Education Forum in order to establish the demographic characteristics of applicants and explore beliefs about politics, society and factors informing their motivation to become a social worker. All students in their first year of study 2018-2019 were invited to participate in an anonymised online survey. The studies received ethical approval from the research ethics committee in each participating institution, and students were provided with study information, so they could provide informed consent. Although there are some differences in the health and welfare system, there are close parallels between the two systems in the North and South of Ireland-the academic routes into social work, the role that religion plays in education, and welfare modelled on a centralised, insurancebased system, and the impact of austerity. Each year, a number of social work students educated in Northern Ireland will work in the Republic and vice versa. For these reasons, we chose to merge the student data and treat it as a single cohort of students across the island of Ireland. The Finnish national social work student survey data were collected in the autumn of 2019. The survey was sent by e-mail to the major social work students at the Universities of Helsinki, Jyv€ askyl€ a, Lapland, Eastern Finland, Tampere and Turku, who had registered as present during the autumn term of 2019 and who had given permission to the student registrar to provide their e-mail addresses for research purposes. According to Finnish practice, a separate ethical approval from a research ethics committee is not required in this type of study. Two reminder rounds were made for the students. Since the Finnish data included students at all levels, not only firstyear students as in Ireland, analyses were performed by study level . No major differences were detected when it comes to motivations and perceptions, with the exception of intrinsic study motivations: if the Finnish data would have consisted of first-year students, the importance of intrinsic motivations would have been even more similar to the Irish results. Motivation to study social work in Ireland was assessed using a nineitem, six-point Likert scale constructed from themes in the literature. Respondents were asked to rate the nine statements from one to six . Six of these items were considered to be similar to those asked of the Finland students . The Irish items were recoded as a three-point Likert scale to be more comparable with the Finnish data, which used a three-point Likert scale. Further, two of Delavega's items belonging to the 'Blame Index' were considered similar enough to be compared to the individual and structural poverty items developed by Van Oorschot and Halman included in the Finnish survey. All students were asked to rate statements concerning individual and structural causes of poverty on a five-point Likert scale. The methods used consisted of direct distributions and crosstabulations. For statistical testing, we used chi-squared analysis. Independent variables, that were comparable between Finland and Ireland, included cross-tabulations were age, current family structure and political party preference. --- Results The total sample of students in the Finnish study was 608 , of which the majority were female , whilst the largest age group consisted of those aged between twenty-three to thirty years . Sixteen per cent of students were 22 or under, with a further 25 per cent aged thirty-one to forty years, whilst 20 per cent were forty-one years or older. One-third of the students were living with their children . A total sample of students in the Ireland study was 279 . Also here, a majority of students were female and more likely to be mature students aged between twenty-three and thirty years or over thirty years old , reflecting the relevant graduate entry pathways that are available. Twenty-two per cent were aged twenty-two years or under, 20 per cent were aged thirty-one to forty years, 15 per cent were forty-one to fifty years, and only 2 per cent were fifty-one to sixty years old. One-third of students were parents . Figures 1 and2 show social work students' motivations to study social work in Finland and Ireland, respectively. The tables show that the intrinsic motivations to study social work were widely embraced both in Finland and in Ireland. In both countries, a majority of the students stated that helping people and working for social change were very important drivers for studying social work. Further, also extrinsic motivations are important for the students from Finland and Ireland, but not as important as intrinsic motivations. About half of the respondents in both countries stated that motivations related to good employment prospects/stable jobs and becoming a professional, respectively, were very important motivations for starting studying social work. Amongst Irish students, also personal experiences were nearly as important a motivation for entering a social work education as extrinsic motivations. In Finland, this motivation was, in contrast, far less common than extrinsic motivations. Having had personal experiences of social work was, in turn, the least important type of motivation both in Ireland and in Finland. The order of importance of the various motivations was the same in Finland and Ireland. Concerning perceptions of poverty, both students in Finland and Ireland supported structural explanations and disagreed with individual explanations . In both countries, only a very small share of the students endorsed individual explanations of poverty. Next, we focus on the cross-tabulations between motivations to study social work and some relevant background variables. Motivations related to personal experience of social work were excluded from the analysis because of a small number of observations. According to the results in Table 2, students with children in Finland were more motivated by extrinsic factors than other students . Furthermore, their choice of career was less motivated by first-hand personal experiences of social problems than it was amongst students without children . In Ireland, in turn, students without children were less driven to studying social work by personal experiences. Political party preference, in turn, was related to some study motivations in the Finnish data. Finnish students with a conservative party preference less often perceived that addressing societal grievances was a very important reason for studying social work compared to students with a nonconservative party preference . Conservative voters were also less motivated to study social work by first-hand experiences of social problems than other students . In Ireland, Finland Turning to students' perceptions of poverty, we excluded 'individual causes' from the cross-tabulations, since almost none of the students in either country were critical towards individual poverty explanations. According to results in Table 3, political party preference was connected to students' poverty perceptions in Finland, but not in Ireland. Those who had voted conservative were less likely to endorse structural explanations as compared to others . Age or current family structure was not connected to perceptions of poverty. % Ireland % Finland % Ireland % Finland % Ireland % Finland % Ireland % Finland % Ireland %( --- Discussion This article set out to study social work students' motivations-in the different socio-economic and welfare state contexts of the island of Ireland and Finland respectively-for becoming a social worker and their understanding of poverty, key aspects underpinning the central commitment of the social work profession to promote social justice. Our results suggest that social work students in different contexts are to a large extent committed to promoting social justice as a general goal; there are no clear indications of social work students' views on these matters being influenced considerably by the respective welfare regimes' varying prioritising of issues of equality, but appear instead to be influenced by issues of vulnerability and poverty per se, existing in all welfare regimes. However, the commitment to social justice shown by students is unlikely to diminish the potential challenges for future social workers emerging from a conflict between ideals and real-world conditions, such as financial constraints, undesired political contexts and/or institutional procedures and policy instruments. When sufficient structures and preconditions for helping clients are not in place, this might lead both to job-related moral distress and, in the long term, impact on job retention . When it comes to extrinsic motivations, respondents across jurisdictions were similarly motivated by the prospect of becoming a professional, by good job prospects and stability. This seems intelligible, considering that studying social work results in a degree including formal professional qualifications, it provides a comparatively favourable position in terms of working life attachment and job security, as compared to many 'generalist' university educations . In sum, and whilst remembering that some caution is advisable as our analyses are based on similar, but not entirely identical questions for the island of Ireland and Finland, the results from our international comparison support the general conclusion that there are important, similar patterns of intrinsic and extrinsic motivations for students' choices to become social work professionals, despite substantial differences in histories, welfare state developments, current policies and societal conditions in various jurisdictions, and despite international variation in political beliefs amongst students. Notwithstanding some effects of varying societal conditions, the results might indicate the persistent prevalence of some basic, general drivers behind students' wishes to become a social worker also in today's turbulent societies. As in most international comparisons, similarities are accompanied by variations, making straightforward conclusions more demanding. In our data, personal experiences stood out as an important driver for students in Ireland, but not in Finland. Also, this might reflect higher levels of economic inequality, poverty and more severe impact of austerity measures in the jurisdictions on the island of Ireland as compared to Finland. In addition, results might reflect that gaining admission to social work programmes in Finland is very difficult, with only some 10 per cent of the applicants being enrolled. Since school success correlates with parents' socio-economic status , it seems fair to assume that the differences in personal experience-related study motivations reflect a middle-class background of majority of Finnish social work students, thus differing compared to the students in the Irish jurisdictions. This is, however, an assumption we have not explicitly measured in the current study. Further, we also find some within-group differences, mainly in Finland. Overall, the different background variables are, however, not of any major importance for students' views. Some twenty years ago, Hackett et al. concluded in their comparative study of student motivations for choosing to study social work that there was little research comparing social work students in different European contexts. Up until today, that situation does not seem to have changed in any decisive way; also, our comparative study can only hope to contribute with some fairly general observations on the matter. At the same time, new challenges, many of which are of an international nature, seem to have only increased the need for comparative studies on social work students' motivations, perceptions and values and their development. --- Limitations and strengths The limitation of this article relates to the comparative contexts for students, whose geopolitical and socio-economic circumstances are both varied and complex, and comparisons are influenced by extraneous variables, outside of the measurements applied. However, the strength of this article tends to outweigh the limitation, as this is a beginning opportunity to compare and begin a wider discussion about the alignment of core social work values and principles and how these align with those who are attracted to work in this career. This will be an increasingly important international discussion for the profession in the decades ahead. --- Conclusion This article is an attempt at comparing social work students'-in different comparative settings-views on social justice, a central mission of their future profession, as measured by their motivations to study social work and their understandings of poverty. As a relatively uncharted topic, this work could be scaled up and replicated across other countries, to compare the same type of factors in a range of geopolitical contexts and test our results more broadly. Our findings point at similarities, rather than decisive differences, in students' views between clearly different social contexts and political systems. Thus, there seems to be an intrinsic drive for social justice and integrity with the espoused values of the social work profession amongst social work students. As we have argued elsewhere , better insights into social work students' backgrounds, motivations and values can provide educators with important knowledge for developing social work programmes and this article provides the potential for further international comparisons about these important areas. --- Conflict of interest statement. None declared.

Exploring social work students' views to understand how equipped they are to pursue the social justice mission of the profession should be of central academic and practical interest. There are, however, surprisingly few empirical studies focussing on social work students' views on social justice-related issues from a comparative viewpoint. Such knowledge is thought to be of a wider international interest from a number of perspectives, including social work education and student exchange and, in a wider context, for the development of social work as a profession and for discussing the prerequisites for shared international notions of social work. This article explores the views of social work students studying in different socio-economic contexts and welfare regimes in relation to some key aspects assumed to be vital for the profession. The results based on survey data from student cohorts in Finland (N ¼ 608) and the www.basw.co.uk

Background Malaria has received much attention over the years due to its impact on public health. There has been a significant increase in malaria cases worldwide, estimated at 225 million in 2009. Malaria is one of the leading causes of death in developing countries with 781,000 estimated annual deaths worldwide, 91% of which occur in Africa [1]. Many efforts have been put in place to control malaria. WHO recommends vector control, including individual personal protection against mosquito bites as a powerful primary public health intervention for reducing malaria transmission at community level, with reinforcement through behaviour change communication [2]. In Rwanda, impressive outcomes have been achieved in malaria control over recent years. Malaria mortality dropped to 16% of hospital deaths and 12% of outpatient consultations in 2008 compared to 41 and 37% of hospital deaths and outpatient consultations, respectively in 2006. The achievement is attributed firstly to widespread community participation of 90% in the national health insurance scheme, and secondly to the use of insecticide-treated bed nets, indoor residual spraying, as well as the goal of the national malaria programme to target the entire population with malaria prevention and control measures [3]. Successful disease control at community level needs to take human behavior, sociocultural and economic context into account in parallel with biomedical interventions [4]. Engagement and participation of communities in planning, implementing and evaluating a control programme helps to ensure that a programme resonates with issues important to them and that findings are locally relevant [5]. Community participation is defined as a method of people working together through community structures in order to raise awareness and identify local ideas, concerns, priorities, and opportunities so as to enable them to achieve sustained provision of appropriate services [6]. Two conceptual approaches to community participation have been identified: vertical and horizontal. Vertical participation implies a centralized development of research objectives by policymakers with responsibility to engage the community, whereas horizontal participation entails facilitating communities to identify and define problems from their perspective and subsequently to help tailor solutions to specific context and needs. The horizontal approach is known to engender sustainability of community-oriented programmes through self-efficacy, social identity and empowerment [6,7]. Various horizontal participatory methods are known and have been deployed differently. For instance, while the information in Rural Rapid Appraisal is driven more by outsiders as part of a process of data gathering, the locus of control in Participatory Rural Appraisal an advanced form of RRAis attributed more to the participants [8]. On the other hand, Participatory Action Research is mainly used in health related research and the method is based on reflection, data collection, and action that aim to improve health and reduce health inequities through involving the people who, in turn, take actions to improve their own health [9]. There is a large evidence-base where horizontal approaches have been successful due to a strong partnership between community and programme implementers. The key elements of these programmes are: 1) generation of a feeling of empowerment; 2) local ownership and responsibility; and, 3) the application of action-oriented and participatory approaches [10]. As part of multidisciplinary horizontal research, involving medical, entomological, economical as well as behavioural components with the aim to empower communities towards malaria elimination, the 'open space' as another participatory approach was deployed [11]. The method aims to explore and brainstorm community perceptions of the malaria problem in Rwanda-Ruhuha sector, their willingness to participate in a malaria elimination programme and to determine the key actions to be taken by various stakeholders. Similar to other horizontal participatory approaches, such as the participatory rural appraisal and participatory learning and action [12,13], the standard method of open space aims at facilitating participants to identify and explore issues that are important to them with regard to an identified problem, and to identify opportunities for change and set priorities among action steps to achieve desired goals in an innovative and productive way. Open Space engenders visualization through the use of cards on which participants write or draw illustrations. It also promotes an active participation process including facilitation and participation in small and large group sessions. Participants in open space are considered to be synergistic and self-motivated with an overarching assumption that those who respond to invitations are more concerned with the problem to be studied [14]. The method has not yet been applied in a public health context. Rather, it has been used in organizational change and is based on four principles: whoever comes is the right person; whatever happens is the only thing that could have; whenever it starts is the right time; and, when it is over, it is over. Uncommon in other participatory approaches, the law of mobility is a key element during open space. It allows participants to move to a more productive place if they are neither learning nor contributing to a certain group [15]. It is critical to explain to participants these principles, as well as the law of mobility, before group discussions are initiated. Two open space meetings were conducted at two different times among the Ruhuha community, focusing on two related calling questions: 1) as a community in what ways and how are you going to contribute to malaria reduction? and 2) what can we do as stakeholders to eliminate malaria in Ruhuha sector? --- Methods --- Study area, target population and sampling Ruhuha sector is located in the southern province of the Republic of Rwanda. It occupies an area of 54 square kilometres with a population of 19,606. Ruhuha sector has about 5,000 households living in five cells, with 35 small villages in total. The sector is bordered by lake Cyohoha and has numerous marshlands and water streams. Wetland agriculture and rice cultivation is common practice. Lake Cyohoha is a major corridor for uncontrolled population movements between Rwanda and Burundi. Due to the high malaria incidence previously reported in Ruhuha sector and the long term working relationship with the health centre, the site was chosen to host the main study aiming at malaria elimination in which open space is embedded as one of the community participatory approaches to be deployed. The study population comprised a crosssection of selected male and female community representatives, including community health workers, health care professionals, school teachers, local NGO representatives, religious and local administration leaders, as well as members of the lay community. The sample for participation was drawn from Ruhuha in collaboration with the Ruhuha health centre and the local administration of Ruhuha sector. Maximum variation sampling was used to enable identification of shared experiences across individuals representing a wide variation in dimensions of interest [16]. The majority of participants in the first open space also participated in the second open space as there were no changes in their roles as community representatives and also because the second open space was a follow-up of the previous one. --- Open space workshops Overview Open space, a way to constantly engage with, learn with and provide feedback to the community, is scheduled to be conducted each year in the project for a period of three years. This is prior to and after annual household surveys that are planned in the main study. Two open space sessions were conducted subsequently in year one and two. The first open space workshop was conducted in February 2010, followed by the second in June 2011 with 62 and 82 participants, respectively. The approach was primarily chosen to be used in this project due to the fact that it was seen as innovation to be used in public health settings while it was previously mainly used in organizational settings. Secondly, the approach adequately houses the critical qualities of participatory approaches without necessarily being resource intensive: problem identification, developing actions to remediate the problem, taking mutually agreed actions, evaluating the learning outcomes, and reflecting and replanning. In addition to that is the unique principle or power of mobility in open space. This enriches the diversity of contributions as members move around smaller group sessionssomething that may be somewhat limited during open feedback sessions when the group is larger and shy participants may become too self conscious and less inclined to speak up. Prior to the conduct of each open space, a planning meeting was held by the research team and selected community representatives to prepare the actual conduct of the discussions. At the same meeting, members discussed and agreed a calling question to be put on the community invitation letters. In collaboration with the Ruhuha health centre, a meeting room was made available to host the discussions. On the day of each open space workshop, team introductions and community representation were done. Explanations of open space technique and its principles were provided. Illiterate participants were explained that they may ask their group members to help write down their ideas. Free listing of participants' expectations of the meeting has been done. From these listings, emerging themes and subthemes were noted for data synthesis. The third step involved brainstorming among participants with regard to the designed calling questions, specifically setting an agenda on what should be discussed in light of the calling question. --- Calling questions Bugesera district, specifically Ruhuha sector is highly malaria endemic. With this in mind, the first calling question designed focused primarily on malaria prevention and required actions towards its reduction, "As a community in what ways and how are you going to contribute to malaria reduction?" A synthesis of this data, and a follow-up meeting two days later with the health centre leadership and local administration suggested community willingness to participate in malaria reduction. Based on this insight and the cognizance that Rwanda is shifting to pre-elimination phase by 2017, the next calling question "What can we do as stakeholders to eliminate malaria? was designed. This was a follow-up of the previous session and focused on exploring the specific role of various stakeholders in malaria elimination. --- Group work Calling questions previously sent to the participants on the invitation letters were again repeated in an open plenary session. Emerging topics from those opening questions were regrouped into major themes to be discussed in small groups . Break-out groups were formed based on individual interests in topics resulting from the plenary discussion of the calling question. Participants were asked to first take part in their group of interest. Each group nominated a group facilitator together with a note taker. The standard law of mobility in the open space was applied, allowing participants to move to other groups once they felt they were no longer contributing or learning from their current group discussion. The implication is that mobile members only partly contribute in any given group, however; they enrich the discussion in other groups as well as being enriched by their participation in diverse groups. Groups ran concurrently and each group discussion session lasted about 45 minutes. Groups recorded notes on cards and a flipchart and presented in the closing plenary of the open space at the end of the session. During feedback, an opportunity was given to the participants to further elaborate any of their ideas, or clarify any idea they felt had not been captured in perspective. The opening and closing plenary sessions each took 15-20 minutes. --- Data synthesis Data synthesis following each open space meeting was done in two phases. Initial synthesis of emerging information was done with the community in the closing plenary. Note takers first presented the outcome of their group discussions followed by brief feedback or further input from the wider group. Finally, after all group presentations and feedback, participants were asked to evaluate whether their expectations had been met. Participants were asked to anonymously list their feedback on small index cards. The data synthesis team, comprising senior researchers and community participation facilitators, went through the listings made by participants. Data were first translated into English from Kinyarwanda and then categorized under key themes and subthemes that emerged from participants' immediate expectations and feedback before and after open space, respectively. From group work, issues identified by participants in relation to malaria in the area, their proposed actions towards its elimination, the process towards achievement of the desired actions as well as the responsibility of stakeholders at each level were also qualitatively analyzed by category. Index cards bearing similar concerns/ideas were grouped together on board. This was followed with data interpretation meetings held with a small group of community opinion leaders a day after each workshop. --- Ethical considerations The Rwanda National Ethics Committee approved the study protocol. Health and administrative authorities were informed prior to both open space meetings. The overall open space process was done in accordance to its principles, which were also well defined in advance to the participants. All discussions were conducted in the national language, Kinyarwanda, moderated by four PhD students, all fluent in the language and who had undergone training for conducting an open space workshop. Participant notification was done at least two weeks ahead of the workshops. Sessions were designed for open and free discussion where respondents were not obliged to respond to any question. Participants were reimbursed for their transportation costs. --- Results --- Characteristics of participants Sixty-two versus 82 participants took part in the two open space discussions. More men than women took part into the two open space . The majority of participants in the first and second sessions were community health workers . There was a marginal increase in the number of local authorities who attended the sessions in the second open space compared to the first . There were fewer participants representing local NGOs who attended the second session compared to the first , mainly due to the end of activities for some NGOs in the area. A similar trend was noted among health care professionals who were present . --- Participants' expectations of open space meetings Themes resulting from participants' expectations before and after open space are listed in descending order of the frequency with which they were listed. It is apparent from data that in both open space meetings the sample size was lower than the total listings combined because each participant could list several expectations. --- Expectations before open space meetings Participants' expectations about the open space meeting are presented in Table 1. Many participants expressed a need for constant education and mobilization for malaria control in general, listed 57 and 55 times, respectively. This included understanding malaria transmission, prevention and treatment, and potential community roles for control and/or elimination. Participants further expressed their needs for specific education on the use of bed nets, indoor residual spraying and environmental management . The need for treatment literacy was emphasized by some participants, including education on when and where to seek health care, the prompt treatment of malaria and how malaria treatment works. Another element arising from participants' expectations was the definition of different stakeholders' roles. Participants emphasized that this was in order to make clear everyone's responsibilities and to engage in partnership with each other to accelerate malaria elimination. Difficulties in seeking health care were mentioned in the two sessions. Participants mentioned the challenge in accessing health services, specifically in terms of unavailability of drugs to treat adults at community level, the long distance to the health centre and the issue of patient adherence to treatment, including completing the full dose prescribed and as instructed by health personnel. --- Expectations after open space meetings Participants' evaluation of the extent to which the open space meetings had met their expectations are presented in Table 2. Thirty-six versus 77 participants responded to the expectations evaluation posed after the first and second open space, respectively. Participants generally felt they had learned much from discussions in terms of malaria transmission, prevention and treatment. They also expressed commitment to providing feedback to their communities on what they had learned. This was more frequently mentioned in the second open space discussion than the first. Discussions also highlighted the perceptions of a critical need for supply of aids, such as educational flipcharts and skills training for community health workers to enable them to transfer the knowledge they gained to their respective communities. Participants in the second open space meeting seemed to view malaria elimination more from a community-oriented approach, identifying initiatives, implying the recognition of the malaria problem as their own and the need for them to be active contributors to actions to eliminate malaria. In contrast, the first open space suggested a 'passive recipient' approach characterized by the absence of participant recognition of their own capabilities and resources that could be put towards identified initiatives. Specifically, while participants in the first open space felt they had learned from the session, they appeared not to recognize the information to have been generated wholly from their discussions, instead ascribing it to the proposal development team, while at the same suggesting an inevitable need for external support towards funding, training, implementation, and a rewards system. --- Emerging themes from group discussions Major themes emerging in the first open space included hygiene and cleanliness, self-protection against malaria either by using bed nets, indoor residual spraying and integrated efforts of stakeholders, including community, donors and government. Themes from the second open To have access to health services 5 To have access to health services 9 To ensure the follow-up of patients on treatment 2 To ensure the follow-up of patients on treatment 9 Indoor residual spraying 7 To distribute bed nets 5 To clear the environment 4 --- Community perceptions of malaria in Ruhuha Malaria was recognized as a burden for the Ruhuha community, although the health centre reported a significant decrease from 60 to 20% of malaria cases at health centre level in 2010. They associated the decrease with community awareness of individual protection against mosquito bites by correct and regular use of bed nets, in addition to community-wide environmental cleanliness, including clearing of bush and other breeding sites, such as stagnant water. However, participants in both sessions reported some misuse of mosquito nets, for instance, for fishing and/or fencing off kitchen gardens. They also reported that misconceptions about malaria and its preventive measures still existed among the community, i.e., malaria being perceived as caused by eating sugar cane or due to personal hygiene, such as not taking shower, etc. --- Poverty reduction It emerged that malaria is a problem of poverty, thus improving the livelihoods of poor families might help malaria elimination. Participants suggested this should be done through the promotion of agriculture and farming mechanisms that are best suited to the area, grouping the community into cooperatives to participate in sustainable, income-generating activities and thereby have access to savings. The latter was perceived to have the potential to contribute to the finances of those who were unable to pay for medical insurance, which resulted in delaying seeking health care or not seeking health care at all. --- Active diagnosis, prevention and treatment of malaria Participants stated that availability of medicine for malaria prevention and a vaccine especially for vulnerable groups, such as children under five years of age, pregnant women, the elderly, HIV and tuberculosis patients, are important for malaria elimination. They mentioned that early diagnosis and treatment of malaria cases as well as follow-up with regard to adherence to treatment is vital. The work done by community health workers in treating children below the age of five years suffering from malaria appeared to be much more appreciated by the participants in the second open space, most likely due to the increase of absolute number compared to the first one. Therefore, they suggested that community health workers should be trained to be able to provide malaria diagnosis and treatment for adults as well. They felt this might have a positive impact on malaria elimination, because patients would be treated early and this would solve the issue of long distances to the health centre, time spent at the health centres, and generally significantly reduce the number of malaria cases that are received at health centre level. With regard to vector control and environmental management, the emphasis was on prevention of mosquito bites by correct use of bed nets and on reducing mosquito reproduction through indoor residual spraying. However, participants raised concerns about the issue of fleas spreading in houses after spraying. This led them to suggest increasing the dose of sprays or making available sprays that can kill both mosquitoes and fleas. A few participants mentioned that sometimes spraying is done after the rice harvest which resulted in no efficacy because that it is the period when mosquito populations have reduced. They suggested that indoor residual spraying should be done on a regular basis, at the right season for optimum outcome. Several accounts stated that bed net coverage and their use is a major factor in malaria elimination, and the community participants suggested that they should be provided with enough bed nets to the number of beds in the house, that their distribution in boarding schools should be considered, and/or they should be available for retail at health centres or shops, at an affordable price. More effort in education focusing on correct bed net use was needed. --- Community mobilization, sensitization and education Misconceptions about malaria preventative measures still existed among the local community, thus providing them with correct knowledge through sensitization, mobilization, training and education for local authorities, community health workers and community itself seemed to be an appropriate focus for malaria elimination. Participants expressed the need for repeated intensive education with a focus on malaria prevention methods, malaria symptoms, early diagnosis and treatment preferably at the hospital, correct use of bed nets, the benefits of indoor residual spraying, hygiene and environmental cleaning as well as the importance of having health insurance. Participants considered the involvement of various stakeholders as key to success in malaria elimination, including stakeholders at national level, community grassroots level, and partnership between the national and local level as well as other community organizations. It was proposed that central government be in charge of making available drugs and ongoing training for health professionals in Ruhuha. The health centre level was expected to organize local leaders and health workers, undertake monitoring and evaluation activities as well as to report back to central level. The community health workers were proposed to organize community meetings and conduct education and sensitization at community level and lastly the community to put into practice the preventive strategies as needed. The NGOs, churches, schools, and cooperatives were identified as other channels that could be used for community sensitization. Further, creation of malaria clubs was recommended to be used as the forum in which all malaria activities at community level are organized, coordinated and communicated to the wider community. --- A rewards system Participants, particularly in the first open space meeting, highlighted a reward and incentive system as essential for maintaining motivation at different implementation levels because the reward system places attention on the importance of the health problem and participants recognized the community responsibility to contribute to the system. The rewards should assess firstly the village in which the level of engagement of its community members is excellent, secondly a community health worker who has done a lot in implementing and sensitizing others, and thirdly a household, which has significantly reduced malaria cases at their level. --- Discussion Open space was used as a technique to be incorporated in the main integrated programme with the goal of malaria elimination in the community of Ruhuha-sector. The approach was deemed to serve as a platform where various community members were engaged in identifying factors promoting or hindering malaria elimination and look for feasible local solutions. The approach served as a way to assess community willingness to participate in malaria elimination. The observation that it served as an intervention strategy whereby participants felt they learnt a lot from being part of the discussions was an unexpected outcome. However, this is common with participatory approaches, attributable to the inherent reflective pattern of engagement in group settings. The findings suggest that some misconceptions and misuse of preventive tools are still observed. This can hinder the achievement of malaria elimination and should be tackled to ensure there is no resurgence of malaria cases, reduced significantly at the level of health centre. This is in consistent with Roll Back Malaria [17], where community knowledge through constant mobilization, sensitization and education towards malaria preventative actions is a key factor to malaria elimination, as it enables the community to protect and sustain their own health. Similar to other settings, such as India [18], malaria transmission was associated with poverty. Encouraging the local community to take part in the existing economical structures such as cooperatives might have a positive impact on household income, improve economic conditions, improve houses and the ability to purchase a health insurance. Cooperatives mainly operate towards financial activities. Reaching out to the community in cooperatives by programme staff may also have positive health benefits in terms of malaria elimination because preventive strategies may be tailored to a large community group at once. Two innovative ideas came out of this research: the establishment of a rewards system and malaria clubs. A rewards system might motivate the community towards preventive behaviour but there is a need to further define the mechanisms of such system and the role of different stakeholders to be engaged. Moreover, it is deemed important to explore its implications for sustainability in the longer term. Malaria clubs have been effective in malaria elimination elsewhere through improvement in awareness on malaria among club members and the spread of information to the community. A school based program in Thailand showed success through provision of each school with teaching manuals and schoolchildren's textbooks and held teacher training. As a result of the program, schoolchildren changed their behavior positively towards malaria prevention [19]. The school population represents more than a quarter of the total population in Ruhuha sector. Formation of similar clubs in school settings might be a great boost to the current malaria elimination programme. It is also assumed that due to students' active engagement in malaria clubs, the knowledge and skills gained can be shared and sustained among their respective families. The open space approach similarly to some other participatory approaches, attributes the control of discussions to the participants rather than to the organizers. The methods do consider participants as agents rather than objects, able to analyze their own problems and look for their own solutions through ownership of the knowledge and empowerment towards taking actions [8]. Open space specifically, as a result of its law of mobility, offers more flexibility for participation and contribution to various subtopics identified as priorities by participants by moving to other subgroups. Moreover, the approach does not have a limited number of participants as observed for other participatory approaches, and can be conducted among small to large groups. --- Conclusion Results from the present research show that open space, newly deployed in health-related research, yields interesting findings as other participatory approaches and can serve as a platform to gather more information from various members of the community, to formulate measures to be taken towards elimination and create motivation for key stakeholders to be involved in such a programme, all within a short period of time. Future work will involve discussions on how agreed-upon actions will be effectively put into practice for malaria elimination in the area. Based on this, ongoing follow up to evaluate whether knowledge gained and skills learnt are shared and sustained among communities will be conducted. --- Consent Informed consent was obtained from the participants for the publication of this report and any accompanying images. --- Abbreviations HIV: Human immunodeficiency virus; NGOs: Non-governmental Organization; PAR: Participatory action research; PRA: Participatory rural appraisal; RRA: Rural rapid appraisal; WHO: World Health Organization. --- Competing interests The authors declare that they have no competing interests. Authors' contributions CMI, JA, EH, FK, DM, IN and KB participated in the conception of study design. CMI, JA, EH, FK, IN, KB, DM, NK, SR, CK, MVV and BVDB performed field activities. CMI, JA, and BVDB carried out data analysis. CMI drafted the manuscript and JA, CM, LM, MVV and BVDB reviewed the paper. All authors have read and approved the final manuscript.

Background: Despite the significant reduction of malaria transmission in Rwanda, Ruhuha sector is still a highly endemic area for malaria. The objective of this activity was to explore and brainstorm the potential roles of various community stakeholders in malaria elimination. Methods: Horizontal participatory approaches such as 'open space' have been deployed to explore local priorities, stimulate community contribution to project planning, and to promote local capacity to manage programmes. Two open space meetings were conducted with 62 and 82 participants in years 1 and 2, respectively. Participants included purposively selected community and local organizations' representatives. Results: Malaria was perceived as a health concern by the respondents despite the reported reduction in prevalence from 60 to 20% for cases at the local health centre. Some misconceptions of the cause of malaria and misuse of preventive strategies were noted. Poverty was deemed to be a contributing factor to malaria transmission, with suggestions that improvement of living conditions for poor families might help malaria reduction. Participants expressed willingness to contribute to malaria elimination and underscored the need for constant education, sensitization and mobilization towards malaria control in general. Active diagnosis, preventative strategies and prompt treatment of malaria cases were all mentioned by participants as ways to reduce malaria. Participants suggested that partnership of stakeholders at various levels could speed up programme activities. A community rewards system was deemed important to motivate engaged participants, i.e., community health workers and households. Establishment of malaria clubs in schools settings was also suggested as crucial to speed up community awareness and increase skills towards further malaria reduction. Conclusions: This bottom-up approach was found useful in engaging the local community, enabling them to explore issues related to malaria in the area and suggest solutions for sustainable malaria elimination gains.

I. INTRODUCTION The advent of the 20th century, with its quintessential 'modernity', has come to embody an intricate over-arching interconnectedness and interdependence among humans across all geographic, cultural and economic boundaries under a complex phenomenon called 'globalization'. Globalization, often deemed to have its roots in as early as the 15th century, with 'The Silk Road' serving as a route for international trade, further bolstered by the age of exploration , and the Industrial Revolution , wasn't conceptualized till the late 20th-century. It was in 1964, that the Canadian cultural critic Marshall McLuhan posited the foundational becoming of a technologically based "global village," effectuated by social "acceleration at all levels of human organization" , and in 1983, that the German-born American economist Theodore Levitt coined the term globalization in his article titled "The Globalization of Markets" . Ever since the technological dominance of the late 20th and early 21st century, reflected in the wide accessibility of the internet, the prevalence of social media, satellite television and cable networks, the world has consolidated itself into a global network, iterating McLuhan's conception of 'one global village', so much so that in the contemporary times, the technological revolution has accelerated the process of globalization . This prevalence has given rise to a novel phenomenon termed the --- Khan and Aazka The Casino Syndrome: Analysing the Detrimental Impact of AI-Driven Globalization on Human & Cultural Consciousness and its Effect on Social Disadvantages IJELS-2023, 8 , https://dx.doi.org/10.22161/ijels. 86.31 199 'Technosphere'. Credited to Arjun Appadurai, who considered technological globalization as one of the five spheres of globalization, technosphere implies a "global configuration" of boundaries, fostered by the flow and speed of technology . Thus, it can be found that technology and its manifested high-paced connectivity is indeed shouldering the cause of globalization. One of the paramount testimonies of technology driving globalization happens to be the introduction and proliferation of 'Artificial Intelligence', commonly referred to as AI. Gaining prominence and consequent advancement ever since the development of digital computers in 1940, AI refers to "the ability of a digital computer or computercontrolled robot to perform tasks commonly associated with intelligent beings" . In other words, AI is a branch of computer science that aims to create systems capable of performing tasks that typically require human intelligence, such as visual perception, speech recognition, decision-making, and problem-solving, by using algorithms, data, and computational power to simulate human-like intelligence in machines. Fortifying the maxims of globalization, artificial intelligence has seeped into the lives of people in modern society, becoming an indispensable part of it. Right from facilitating cross-cultural interactions by providing realtime language translation services to connecting employees located in different parts of the globe on platforms like Google Meet and Zoom, it can be affirmed that "Artificial intelligence, quantum computing, robotics, and advanced telecommunications have manifested the impact of globalization, making the world a global village" . Consequently, it also validates Theodore Levitt, the harbinger of theorizing globalization, who prophesied that "Computer-aided design and manufacturing , combined with robotics, will create a new equipment and process technology that will make small plants located close to their markets as efficient as large ones located distantly . Though the exposition of Artificial Intelligence has vindicated the principles of globalization, bringing the world closer with its provision, speed and reach, streamlining international business operations, and facilitating cross-border collaboration, this AI-driven globalization has its downfall too. While AI has made information and services accessible to many, it has simultaneously exacerbated the digital divide. In developing countries, people in rural areas lack access to computers, the internet and AI-driven platforms, putting them at a disadvantage compared to their urban counterparts within the nation and those residing across geographical borders. In lieu, those who possess the skills to develop and operate AI technologies often command high-paying jobs, while others face job displacement due to automation. For instance, automated customer service chatbots have reduced the demand for human customer service representatives, leading to job losses in the customer service industry, while robots are replacing manual labor in the manufacturing industries. Moreover, though connecting people, the simulation catalyzed by algorithms has triggered unpleasant psychological dispositions among its users. In essence, AIdriven globalization has created "complex relationships among money flows, political possibilities, and the availability of both un-and highly skilled labor" , all of which, with the unraveling of the digital divide, risks of unemployment for the unprivileged poor, and consequent mental dispositions only pins individuals against one another, and vests unrestrained power in the hands of the capitalists few, effectuating a disintegration of society at varied levels. The aforementioned underside of AI-driven globalization aligns with a phenomenon called 'The Casino Syndrome', coined by Anand Teltumbde in his seminal work, The Persistence of Caste, wherein he investigates the nexus between globalization and the caste system in India. Contextualizing the simulating nature of the casino, whereby everyone involved in the play is merely guided by their zeal for money-making, becoming indifferent towards others, potentially yielding to the concentration of money in the hands of a few, broken relationships and mental health problems, he holds globalization to be operating along the same divisive lines. Similarly, since Artificial Intelligence stands as the modern-day face of globalization, the same 'casino syndrome' can be applied to AI-driven globalization. To pursue this nexus, this paper intends to theorize Teltumbde's Casino syndrome and substantiate AI-driven globalization as the testimony of the tenets of the syndrome, by investigating its triggers of social transformation that furthers class divide, alters mental health and leads to the eventual disintegration of society. Consequently, it attempts to resolve the derailing impact of AI-driven globalization by propounding corrective measures for the same. --- II. THEORISING GLOBALIZATION-INDUCED CASINO SYNDROME The term 'Casino Syndrome' was propounded by an Indian scholar, journalist, and civil rights activist, Anand Teltumbde, who is renowned for his extensive writings on the caste system in India and for advocating rights for Dalits. One of his critical writings is The Persistence of Caste: The Khairlanji Murders and India's Hidden Apartheid , wherein he analyzes and interrogates the --- Khan and Aazka The Khirlanji Murders, or the public massacre of four scheduled caste citizens in the Indian village called Kherlanji, substantiating it within the larger Indian political context that has failed to protect its downtrodden citizens and the socio-religious context that has aggravated the marginalization of these groups. A novel perspective that he foregrounds is the critique of globalization, deconstructing it merely as a myth that furthers the subjugation of Dalits and those who lay at the fringes of society, in the reasoning of which he likens globalization to the 'Casino Syndrome'. Breaking down Teltumbde's terminology, a 'casino' refers to a commercial set-up where individuals engage in gambling, typically including games of chance like slot machines and table games such as poker and roulette, by betting money on possible random outcomes or combinations of outcomes. Initially physical, in the wake of digitalisation and globalization, online casinos like Spin Casino, Royal Panda, Genesis, Mr. Vegas, etc., have taken over. Simulating the inclinations of the players into an addiction, casinos are designed to generate revenue through the wagers and bets of their customers. Corroborating this money-making essentialization of casinos, the Statista Research Department holds that "in 2021, the market size of the global casinos and online gambling industry reached 262 billion U.S. dollars" , whereas "11% of adult internet users gamble actively online, generating a global revenue of over 119 billion GBP" . Online casinos, affirming the technology that spawned globalization, which seemingly brings the world together, thus denote its capitalistic attribute, which not only hooks the people to its system but also ensures that the flow of money gets concentrated in the hands of its privileged owners. A 2021 BBC report read that "Bet365 boss earns £469 million in a single year," while another report asserted, "The extremely successful casino company generated a total of 5.16 billion U.S. dollars in 2020" . Whereas, for the users, though casinos offer entertainment and the possibility of winning money, it can lead to addiction, selfishness, financial problems, debt, social and familial isolation, and so on. These culminations bring to the fore casino's correlation in the terminology,'syndrome', which refers to a "group of signs and symptoms that occur together and characterize a particular abnormality or condition" . The symptoms rooted in casino-induced simulation, often referred to as 'problem gambling', 'compulsive gambling', 'gambling disorder', and the like, are enlisted by the Mayo Clinic as preoccupation with gambling, restlessness, agitation, disposition to get more money by betting more, bankruptcy, broken relationships, etc. Thus, it can be discerned that casinos effectuate a syndrome whereby, on the one hand, money gets accumulated in the hands of the owners, and on the other hand, it streams from the pockets of the players, at the cost of their social and financial lives. This is iterated by a research finding that holds that "a typical player spends approximately $110 equivalent across a median of 6 bets in a single day, although heavily involved bettors spend approximately $100,000 equivalent over a median of 644 bets across 35 days" . Consequently, a review highlights the economic cost of suicide as being £619.2 million and provides an updated cost of homelessness associated with harmful gambling as being 62.8 million . Therefore, it can be deduced that casino syndrome, in the context of gambling, merely creates and furthers the economic divide by serving the ends of capitalism and subjecting its players to simulation, financial crises, social alienation, etc. In essence, it creates and intensifies inequality and disintegration among people. Foregrounding this penetrative inequality and associated disparity, Teltumbde speaks of free-market fundamentalism as making "globalization intrinsically elitist, creating extreme forms of inequality, economic as well as social. By pitting an individual against all others in the global marketplace, it essentially creates a 'casino syndrome', breaking down all familiar correlations and rendering everyone psychologically vulnerable; the more so, the more resourceless they are" . Applying the same deconstructionist approach, Teltumbde's conceptualisation foregrounds economic inequality as a background, based on which prominent contorting tents emerge, all of which are substantiated below in the context of globalization: --- Globalization pitches an individual against all others in the global marketplace Globalization, while fostering interconnectedness on a global scale, also inadvertently pitches individuals against each other. It opens up opportunities for offshoring and outsourcing, and through these options, it avails industry competitors . This is particularly evident in the context of job markets with the emergence of global outsourcing. Owing to global outsourcing, with the ease of communication and the ability to outsource labor to different parts of the world, workers often find themselves competing with peers from distant regions for employment opportunities. This underside of globalization is accurately pointed out by Gereffi and Sturgeon, who hold that "the rise of global outsourcing has triggered waves of consternation in advanced economies about job loss and the degradation of capabilities that could spell the disappearance of entire national industries . Thus, it can be acknowledged that globalization, yielding global outsourcing, creates global competition, which not only pits people against one another but also nations. --- Globalization breaks down all Familiar Correlations Having pointed out the pinning of nations against one another, globalization, in its zeal to disrupt boundaries, also breaks down the very nation by causing enmity among its social groups. Reiterating globalization's quintessential inequality, it can disintegrate national integrity by aggravating class and caste divisions along the lines of global opportunities. Illuminating this in the Indian context, Gopal Guru articulates that "many scholars who have managed to become a part of a globally operating academic network latch on to every new opportunity, thus pushing those who lack this connection to relatively less attractive institutions within India" . Hence, it can be substantiated that globalization, by opening up the world of opportunities, only does so for the economically efficient privileged, which in turn places the underprivileged at a situational loss and yields seeds of enmity amongst them, eventually breaking down the fabric of a united nation at a macrocosm. Whereas on a microcosm, owing to its operational characteristics, it also breaks down families and social structures, as accurately pointed out by Trask, who posits that globalization "as a growing global ideology that stresses entrepreneurship and self-reliance pervades even the most remote regions, the concept of social support services is quickly disintegrating" . Therefore, globalization, apart from its global unification, also affects breaking-downs or disintegrations at various subtle levels, as was held by Teltumbde. --- Globalization renders everyone psychologically vulnerable Globalization, instead of connecting individuals, can also isolate them, especially from themselves. Through its boundary-blurring phenomenon, it fuels cultural exchanges and diaspora, which culminate in individuals dealing with the psychological challenges of cultural displacement. Additionally, urbanization, driven by globalization, has led to a colossal increase in behavioral disturbance, especially associated with the breakdown of families, abandonment of, and violence to spouses, children, and the elderly, along with depressive and anxiety disorders . Moreover, under the unqualified and unstoppable spread of free trade rules, the economy is progressively exempt from political control; thus, this economic impotence of the state influences how individuals see their role, their self-esteem, and their value in the larger scheme of things . This constant fear of being on one's own in the global sphere has ushered in an age of people characterized by perpetual anxiety, identity, and existential crises, which is even more daunting to the underprivileged, as Kirby rightly posits that "poor people's fears derive from a lack of assets and from anxiety about their ability to survive in increasingly unpredictable and insecure environments" . Therefore, it can be substantiated that though globalization has hailed global connectivity, it has also rendered people psychologically vulnerable to a myriad of issues. In conclusion, globalization can indeed be seen unfolding its impact through the lens of Teltumbde's 'Casino Syndrome'. --- III. COMPREHENDING AI-DRIVEN GLOBALIZATION THROUGH THE TENETS OF CASINO SYNDROME As broached above, artificial intelligence, owing to its advanced technology, has come to represent a prominent facet of globalization. Thus, the tenets of globalizationinduced casino syndrome can be applied to artificial intelligence to bring to account the underside of AI-driven globalization that yields inequality and disintegration. 3.1 Creates inequality -Pitches an individual against others in the global marketplace : Since technology-driven globalization has global reach and impact, its competition-inducing trait can be seen at varied levels of intersections, whereby, apart from merely pinning individuals, it actually pins entities in opposition too. At a macro level, it can be seen pitching nations against each other in a global competition, as accurately posed by Russian President Vladimir Putin: "Whoever becomes the leader in this sphere will become the ruler of the world" . Thus, AI has inadvertently given rise to a global race of nations aspiring to become AI superpowers of the world. From heavy investments and the allocation of funds for research to the formulation of policies, nations are leaving a stone unturned to beat others in their zeal to dominate globally. It is to be noted that their spirit to compete does not come from a place of situational necessity, committed to resolving the ardent problems of citizens; rather, it is to flex their potency and accomplish a pedestal. Thus, AI-driven globalization embodies casino syndrome's elitist essence, as pointed out by Teltumbde. The most conspicuous conflict is between the US and China, as validated by Anthony Mullen, a director of research at analyst firm Gartner, who says, "Right now, AI is a two-horse race between China and the US" . It is very evident that the world is divided in the wake of AIdriven globalization, with nations pitching against each other to not only become supreme themselves but also to overtake the two AI superpowers, the US and China. Delving further, apart from existing at the level of research, policies, fund allocations, etc., this AI-driven global feud is discerned to unfold as a global AI warfare, as AI can be used for developing cyber weapons, controlling autonomous tools like drones, and for surveillance to attack opponents. Consequently, "already, China, Russia, and others are investing significantly in AI to increase their relative military capabilities with an eye towards reshaping the balance of power" . Hence, AIdriven competition is not merely implicit, holding the facade of advancement and global progress, as AI is being used by nations to quite literally compete, overpower, and destroy other countries in their quest for the top, giving rise to the anticipation of AI-warfare, the goriest prospect of World War, articulated overtly by Putin: "When one party's drones are destroyed by drones of another, it will have no other choice but to surrender" . Interrogating the flip side of this AI-driven global race and warfare, the entities that will actually receive the blow of its destruction would be the developing, third-world countries. In other terms, AI-driven globalization has also pitched the world into two spheres, whereby on the one hand, it "could benefit countries that are capital intensive" , or elite, whereas on the other hand, developing countries like Sub-Saharan Africa, the Caribbean, Latin America, and other South Asian countries, who are preoccupied with other urgent priorities like sanitation, education, healthcare, etc., would be found wanting . Likewise, AI will strengthen the already existing economic and digital divide between the first world and the third world, making the letter a soft target and putting them at an economic disadvantage. This can be seen as turning true as "major nations have already co-opted it for soft power and ideological competition" and have established it as a pillar of "economic differentiation for the rest of the century" . Aggravating the quintessential distinction between the haves and the have nots, AI-fostered economic inequality resonates with the casino syndrome, which too creates an economic divide between the owners and the players by directing the flow of money from the pockets of the latter to the former. Fortifying the same, it is to be noted that the developed countries investing heavily in AI do so by extracting hardearned money from the pockets of their taxpayers, the common citizens; thus, the economic inequality within a nation widens too, with the poor commoners at an economic disadvantage. Moving from macro to microcosm, globalization's essential competitiveness also pitches companies against each other. The haste of companies to catch up with AI's race was seen when Google launched its Google Bard right after Open AI launched ChatGPT. Subsequently, owing to Open AI becoming the superpower of the market, Snapchat launched its MyAI, and Microsoft launched Bing AI, though Microsoft and Open AI are partners. However, companies trying to overpower their competitors have been a common trait of globalization. A novel competition can be seen unfolding in AI-driven globalization, pitting AI and individuals against each other. In a historic chess match, Google's artificial intelligence AlphaGo defeated Korean expert Lee Sedol in four of the five series . It is not just an instance of AI playing against human intelligence and defeating it; at a larger level, it also signifies two countries, Google representing the US and Lee Sedol representing South Korea, pitched against each other, whereby the former defeated the latter due to its technology. This phenomenon is discernible in routine human activities too. Elon Musk, in an interview, claimed, "AI is already helping us basically diagnose diseases better [and] match up drugs with people depending [on their illness]" . AI, being more efficient than humans, has inevitably pitched a significant human race against itself. It brings to the fore a foretelling of a war between technologydriven AI and the human population, as rightly portrayed in numerous sci-fi movies. This futuristic war can be anticipated to be true with the amount of investments made for its proliferation, as a report read that "Today's leading information technology companies-including the faangs and bats -are betting their R&D budgets on the AI revolution , while another claimed, "In 2020, the 432,000 companies in the UK who have already adopted AI have already spent a total of £16.7 billion on AI technologies" . Thus, at the root level, AI and humans are pitched against each other by the cause of these MNCs. As a result, the AI industry and its elite stakeholders are witnessing an economic bloom with investments; however, it does so at the cost of working-class people losing their jobs. Due to the automation of work, AI can be seen replacing humans, especially in manual labor, and hence taking away the jobs of poor people who aren't educated enough to do anything but manual work. Studies report that "from 1990 to 2007, adding one additional robot per 1,000 workers reduced the national employment-to-population ratio by about 0.2 percent" , whereas by 2025 itself, "robots could replace as many as 2 million more workers in manufacturing alone" . Moreover, most recently introduced industrial robots like Rethink Robotics' Baxter are more flexible and far cheaper than their predecessors, which will perform simple jobs for small manufacturers in a variety of sectors . Hence, more human replacement. On the other hand, companies leading in AI, like Baidu and Tencent, are generating more revenue than ever. As reported by Statista, in 2023, the predicted revenue for Baidu generated within this market is over 196 billion yuan, whereas for Tencent, the revenue is approaching 150 billion yuan . It can therefore be fortified that this pinning of AI against humans by the hands of AI-leading companies has yielded a flow of money from the pockets of the poor laborers to the bank accounts of the privileged industries and their stakeholders, conforming to the income-inequality tenet of casino syndrome. Another aspect of AI impacting jobs involves reports claiming the emergence of new job opportunities. According to the World Economic Forum Future, 85 million jobs will be displaced by 2023, while 97 million new roles may emerge . Taking away certain categories of jobs, AI will consequently create jobs categorically, i.e., for the educated elite. Therefore, when middle-class workers lost their jobs, white-collar professionals and postgraduate degree holders saw their salaries rise . Moreover, it will peculiarly create jobs for people who are experts in AI. Subsequently, it can be rightly posited that "AI won't take your job, but a person knowing AI will" . By doing so, AI will inevitably pitch individuals who have promising jobs against those without any, as casino syndrome's original tenet foregrounds. It can be conclusively said that AI has created a global rat race between nations, companies, and people, pitting these entities against each other. As a consequence, it not only harbors global enmity, throwing open the possibility of global warfare, but also economic inequality, whereby money flows into the accounts of the elite 'Chosen Few', and gets emptied from the pockets of already underprivileged others, furthering the historical divide between the haves and the haves not. --- Disintegration of Familial Correlations: Erosion of interpersonal relationships The strain of AI-driven advancements and intricate technological globalization has far-reaching consequences for interpersonal relationships at many levels. AI-driven competition can lead to people prioritizing their professional ambitions and success over their interpersonal relationships because of the rat race created by AI. As companies are passionately pursuing the use of artificial intelligence, leading to a job recession, individuals are pitying each other, and in their ambition to find stable employment, they often neglect their familial and social relations. A typical employee often works intensely even after securing a job because of the competitive pressure and to ensure job security. Employed or not, individuals spend excessive amounts of hours building their professional lives, leaving them with little to no time and emotional energy for their loved ones. According to Our World in Data , Americans in their teenage years spent more than 200 minutes per day with their families, but as their ages progressed, in their 20s, 30s, and 40s, their family time went down to approximately 50 minutes to 100 minutes with their families per day. Whereas, they spent more than 200 minutes with their co-workers each day. Their time spent with their friends also took a downward spiral, with less than 80 minutes each day during their 30s, approximately 40 minutes each day, and less once they entered their 40s, and so on . The neglect can result in strained marriages, fractured families, and a growing sense of isolation and loneliness as people become more and more absorbed in their goals. According to a study conducted by the National Library of Medicine, "higher levels of newlywed spouses' workloads predict subsequent decreases in their partners' marital satisfaction during the first four years of marriage but do not affect changes in their own satisfaction. These findings provide additional evidence for the dynamic interplay between work and family life and call for further study of the factors that make some relationships more or less vulnerable to the negative effects of increased workloads and the processes by which these effects take hold." . Moreover, due to the competition in professional areas, employees and friends are pitted against each other as there is a strong desire to outperform their peers, leading to envy, rivalry, and unnecessary conflicts. Hence, AI-driven globalization has a negative impact on interpersonal relationships in personal as well as professional life. The virtual world created by AI that people participate in, or to be precise, social media users, participate in, is a highly curated world, and all the algorithms programmed platforms that are regularly used-Instagram, Facebook, Twitter, etc.-provide highly curated content created for the one particular user based on their 'history'. Every user's search history is used for betterpersonalized results . Because artificial intelligence can process large amounts of data in a second, it can beat any human correlations and create a personalized world just for one user, allowing them to spend their time in that world while affecting their social interactions and often fracturing their familial bonds. Algorithms and curations create a seemingly perfect virtual reality where individuals do not have to struggle with social anxiety as their interests are presented to be explored freely, leading to a gradual distancing from the 'real' world. This phenomenon can be called a real-life manifestation of Baudrillard's concept of 'Hyperreality'. Thanks to social media, a person's digital footprint often tells more about their personality than their real-life behavior can. The hyperreality created on social media in turn creates a 'virtual arcade' around the users, isolating them from the external real world of humans. All of which eventually disintegrates their interpersonal relationships at home and with colleagues in more ways than one . Moreover, artificial intelligence can reinforce biases because AI makes decisions based on training data and can often include biased human decisions based on social inequalities , and thus, AI's reinforcing these biases, particularly by making its content curation more majority' specific, minority cultural identity, is threatened. According to the Bridge Chronicle , a research team at Stanford University discovered that GPT-3 was providing biased results. "According to the team, the machines have become capable of learning undesired social biases that can perpetuate harmful stereotypes from the large set of data that they process . The team discovered that even though the purpose of GPT-3 is to enhance creativity, it associated Muslims with violence. The team gave the program the sentence "Two Muslims walked into a...," to complete, and the results were "Two Muslims walked into a synagogue with axes and a bomb" and/or "Two Muslims walked into a Texas cartoon contest and opened fire" . "When they replaced "Muslims' ' by "Christians,' ' the AI results re-tuned violence-based association to 20 percent of the time, instead of 66 percent for Muslims. Further, the researchers gave GPT-3 a prompt: "Audacious is to boldness as Muslim is to...," and 25 percent of the time, the program said, "Terrorism."" . AI learns from training data, which may be skewed with human biases, and these biases are directly provided in the results. Such results have practical and ethical concerns as they promote and aggravate violence, communal hatred, stereotypes, prejudices, discrimination, etc., and disintegrate bonds of communal unity at a national and international level. To corroborate further, artificial intelligence targets users by providing deliberately curated custom feeds, and this feed is an amalgamation of their 'interests', which are, as aforementioned,'majority' specific. Therefore, algorithmic curation of artificial intelligence subdues multiple perspectives by making the user perceive a single point of view, hindering not only their cultural identity but their individuality, as social media giants essentially try to accumulate as many users as possible to further the ends of their capitalist business and reap monetary profit. In other words, social media companies aim to create a network of users using their interactions and emotions, which in turn creates new social needs . Ultimately, the cost is the individual's cultural as well as personal identity. Individuals are turned into users; users are then turned into consumers, an unraveling of a multi-layered disintegration of one's own self in an AI-driven globalized world. AI's penchant for personalisation and tailored feeds may cause user satisfaction at times, but this creates 'echo chambers', where individuals are exposed only to the viewpoints their opinions align with. The narrowing of perspectives causes individualisation as identities are subsumed. Already, the promotion of bias in AI effectively undermines individuality. AI's data collection for such customisation leads to the erosion of privacy, and the constant monitoring makes individuals mere data points to be analyzed as they are quite self-conscious that they are being scrutinized leading to self-censorship. The depersonalization of customer service through AI-driven chatbots and automated interfaces, the invasive nature of emotion recognition and surveillance technologies, and the loss of control over decisions in an increasingly autonomous AI-driven world can further contribute to the sense of deindividualization (Coppolino --- Khan and Aazka The Casino Syndrome: Analysing the Detrimental Impact of AI-Driven Globalization on Human Alluding to the intentional curation of content further, in the context of AI-driven globalization in today's world, the broader use of social media can intensify nationalist sentiments, often causing communal tensions. This is due to the highly curated content that individuals are exposed to, which can distort their perception of reality as their online feeds become their primary source of information. Algorithms play a crucial role in recommending content that aligns with users' existing ideologies, effectively reinforcing their views and isolating them within their ideological bubbles. This phenomenon is not limited to any single nation. In India, for instance, communal identity tends to manifest itself in nationalist fervor, while along caste lines, it can result in anti-Dalit prejudice and behavior . According to the Indian Express , "Facial recognition technology-which uses AI to match live images against a database of cached faces-is one of many AI applications that critics say risks more surveillance of Muslims, lowercaste Dalits, Indigenous Adivasis, transgender people, and other marginalized groups, all while ignoring their needs" . AI policing systems will exacerbate the current caste issues in India, as policing in India is already casteist, and AI data will feed more information that is biased and based on caste hierarchies . In the West, the discussion of laws regarding AI has already begun. India, a nation of more than 120 crore citizens, needs staunch laws about AI use and ethics as fast as possible. Outside India, the most well-known Cambridge Analytica data scandal was where Cambridge Analytica collected the data of millions of users from Facebook without their permission so that their feed could be influenced, especially for political messaging, as a way of microtargeting the users. This political advertising by Cambridge Analytica provided analytical assistance to the political campaigns of Ted Cruz and Donald Trump, who won the elections. . The firm is also said to have interfered with the Brexit referendum; however, according to the official investigation, no significant breach had taken place . This global pattern of the disintegration of national and cultural identities underscores the far-reaching consequences of artificial intelligence. Marginalization of communities occurs due to the concept of bias rooted in AI creation because the creators of AI are not immune to the world. AI works on large amounts of data; this data is produced by human users, and since human users themselves are biased, the content curation and algorithms of artificial intelligence are also biased . An example of this is when, in 2021, AI-based crime prevention software targeted only African Americans and Latinos, or when, in 2017, Amazon used the AI tool called 'AMZN.O., which gave preferences to men's resumes over women's . Therefore, nationalists and sexist stridencies are further provoked by a biased AI due to the biased data sets of biased human users, leading to cultural as well as gender-based interpersonal disintegrations. Therefore, in a wider context, AI disintegrates interpersonal relationships at a national and community level too. Moreover, by inciting one gender against the other, it also disintegrates the very essence of humanitarian bonds, aggravating the long-existing gender prejudices that men and women alike have fought against for centuries. Gender discrimination, one of the main factors in social inequality, can cause a deep wound in interpersonal relationships as it promotes stereotypes and prejudices mainly against women. This can cause barriers to communication and lead to isolation and mental health struggles. Furthermore, collaboration is undermined in the workplace, where there is an imbalance of gender. The lack of inclusivity promotes orthodox gender beliefs. And gender discrimination and the reinforcement of stereotypes at home can cause rifts among family members as well. Therefore, it causes disintegration at the workplace as well as in the family. Furthermore, women face specific challenges when it comes to artificial intelligence. There is a deeprooted gender bias in technology because its makers are approximately 70% men and 30% women, approximately . This bias corroborates the treatment AI and robots have received at the hands of men. To be specific, robots, especially those that are created as 'females', are created with the aim of serving some sexual purpose. A popular example is the molestation and malfunction of a sex robot at an electronics festival in Austria . According to The Guardian , the sex-tech industry is coming up with sex-tech toys with custom-made genitals with heat systems. This sex-tech industry is worth $30 billion . Even though sex bots can reduce rape and assault in real life, they nevertheless bring in a new era of women's objectification, which continues through technology . Furthermore, the popular voices of virtual assistants like Siri and Alexa are clearly female, and despite the availability of the male' option, these tech tools are meant to serve a clear --- Khan and Aazka The Casino Syndrome: Analysing the Detrimental Impact of AI-Driven Globalization on Human Despite the world's attempt at inclusivity, the creators of AI have a general responsibility. If the machines continue to be biased, the world will be ushered towards an institutionalized, futuristic patriarchal system run by AI and robots . One way through which the bias and disintegration caused by AI and technology can be reduced is by allowing women and marginalized communities a part in the creation process, and for that to happen, humanity first needs to devise and agree upon a set of ethics with which it can run AI. The disintegration caused by AI has profound implications at personal, cultural, and national levels, as seen in the case of gender and other groups. This phenomenon is closely intertwined with the principles of capitalism and its ideologies. Classical liberalism, a political and economic phenomenon, stresses individual freedom within a minimally regulated marketplace. Capitalism builds upon this foundation, accentuating individualism as its core tenet. With the rise of AI, this individualism has been taken to unprecedented extremes. Neoliberalism, a term frequently brought up in the context of globalization, represents the evolution of classical liberalism, reconfigured to cater to capitalism's profit-driven demands. Neoliberalism prioritizes the interests of the individual over the community, a stark departure from ideologies such as communism and socialism, which were forged in response to capitalism's community-focused approach for the benefit of the many over the few. However, AI has pushed this individualistic ideology to new heights, where both the market and society are perceived through the lens of intense self-interest. Teltumbde highlights this point by asserting that "classical liberalism, which lent capitalism its ideological support, is reclaimed by globalists in the form of neoliberalism, its individualist extremist concoction that advocates extreme individualism, social Darwinist competition, and free market fundamentalism" . The concept of "social Darwinist competition" aligns with the competitive nature of AIdriven globalization, where survival is akin to natural selection, favoring only the most ruthlessly driven and motivated people. The term "free market fundamentalism" further signifies a staunch belief in the primacy of the free market and individual choice. This runs parallel with the idea that AI has escalated the focus on the individual as the primary economic mechanism, not a human being. According to the British Educational Research Association, "the combination of increasing globalization and individualism weakens collective values and social ties, jeopardizing the ideals of equality, equity, social justice, and democracy. Excessive individualism makes family and other interpersonal relations fragile to the point that the sense of community and belonging becomes smaller to a very feeble level, just as is the case with casinos. Individuals caught in this 'Casino Syndrome' live a life of disintegration with malign professional connections as the nature of competition pushes them to rival one another instead of encouraging healthy collaboration. A correct education can reform the situation and help restore and/or strengthen interpersonal relations by providing every student with a communal foundation from the very beginning, with the right balance of individualism . AI-driven globalization's reach extends beyond the world of technology and data and into the physical world. Due to the digitalisation of the biological world, natural and familiar environments are also being digitized to the point that an urban setting can easily pass for a technosphere. According to UNESCO, a technosphere is composed of objects, especially technological objects, manufactured by human beings, including buildings' mass, transportation networks, communication infrastructure, etc. . The technosphere and even simply the generic digitalised transformation of the physical world distance human beings as individuals from nature and enforce a regular reliance on digital objects daily, contributing to mental and physical detachment from the physical world. Thus, a technosphere affects individuals' social skills by disintegrating a pertinent bond between humans and nature while having a directly detrimental impact on their personal lives. Incinerating personal lives, artificial intelligence can lead to social anxiety and an inferiority complex due to lower self-esteem. It is interesting to note that two entire generations of people-Millennials and Generation Zprefer text messaging over speaking on a phone call. Although research does indicate that "hearing each other's voices over the phone fosters better trust and relationships compared to texting" , according to the Guardian , "some young people even consider phone calls a "phobia" of theirs. Contrary to what might seem like a mere convenience choice, this new data suggests that anxiety might be at the root of this behavior". According to the study, 9 out of 10 individuals belonging to Generation Z claimed that they preferred texting over speaking on the phone. Social anxiety has been on an all-time rise amongst the said generation, and Generation Z is known for their outspokenness on several issues and promoting political correctness. Two whole generations have been fed algorithms and curated data, which implies that the high amounts of time spent in the virtual world directly impact their mental health and interpersonal relationships. This eventually manifests into a social form of disintegration of bonds, apparent amongst millennials and Generation Z individuals. Communication and language are losing their role as knowledge is shared and perceived through digital symbols and technology-mediated methods instead of language. The lack of language underscores the urgency of the weakening bond of human verbal communication, the most reliable and used communication. Not only do digital symbols lack the depth of human language, but their use causes a decrease in human verbal communication, thus hampering effective and reliable communication and giving rise to disintegration, distancing oneself from others, and misunderstanding. This transition can disseminate effective, nuanced, and empathetic communication among individuals, leading to damaging bonds, as digital symbols often lack the profundity and context of human language. According to a case study conducted by Scientific Reports , the adoption of AI-generated algorithmic response suggestions, such as "smart replies," can indeed expedite communication and foster the use of more positive emotional expressions. However, it also highlights the persisting negative perceptions associated with AI in communication, potentially undermining the positive impacts. As language evolves towards these digital symbols, the urgency of preserving the strength of human verbal communication becomes evident. As accurately postulated, "Advanced technology has exacerbated the detachment between humanity and nature [...] The combination of the Internet and industrialization, various industries plus the Internet, virtual technology, bionic engineering, and intelligent facilities, including robotics, are replacing the natural environment with virtual objects and building a virtual world that has never been seen before" . This transition may lead to disintegration, distancing among individuals, and misunderstandings, ultimately jeopardizing the quality of interpersonal bonds. The findings of the study in Scientific Reports emphasize the need for a comprehensive examination of how AI influences language and communication, especially in light of its growing role in our daily interactions, and the importance of considering the broader societal consequences of AI algorithm design for communication. In the purview of psychological bearing, artificial intelligence also promotes narcissistic tendencies , while, as reiterated, AI communication technology promotes individualism over interpersonal relationships . The design of artificial intelligence encourages self-interest, causing narcissistic tendencies. Social media algorithms customize and curate user feeds, reducing altruism by prioritizing self-interest. AI's focus on serving the primary user can cause individuals to neglect their social relationships. Children who view AI as superior may develop a superiority complex. This reliance on AI devices can promote narcissism in both children and adults . In lieu, AI technology promotes the self excessively, to the point that it may raise concerns about a superiority complex. The digital transformation of our familiar world is reshaping individual perceptions and altering the way we interact with our surroundings. As people increasingly immerse themselves in the virtual realm, their lived experiences become more intertwined with technology, leading to a gradual decline in shared experiences. This shift has profound implications for interpersonal relationships, as the digital landscape often prioritizes individual-centric experiences, leading to disintegration. According to Forbes , with the rise of AI in the world, at some point, human beings will develop deeper relationships with artificial intelligence than real human beings, which can lead to toxicity in interpersonal relationships and narcissism . --- Human beings have the ability to anthropomorphize nonhuman factors easily, and with artificial intelligence willing to cater to every human need, the world is moving farther away from relationships with people and more towards synthetic anthropomorphised factors like AI . An example is Rossana Ramos, an American woman from New York who married' an AI chatbot, saying that her former partners were toxic and abusive, whereas she calls Eren a 'sweetheart' . AI threatens human contact as a quarter of millenials say that they have no friends and 50% of Americans are in no romantic relationships . AI is leading to a hikikomori challenge in the present world. "Hikikomori is a psychological condition that makes people shut themselves off from society, often staying in their houses for months on end" . If AI continues to grow unchecked, the already persisting issue of anxiety and existential crisis will be further aggravated, and even the most basic form of human contact in the future will be seriously threatened as people will choose to spend more time with their perfectly customized AI partners or friends than with human beings . Interpersonal relationships have never been more challenged before. Not only is AI threatening human contact, it is also posing a threat to the one thing that is considered a healthy coping mechanism: art. AI is changing the way one thinks about art, as "the ability of AI to generate art, writing, and music raises the question of what constitutes "creativity" and "art" and also whether AI-generated work can be considered truly creative. This also raises ethical questions about the authorship, ownership, and intellectual property of AI-generated work" . Whether AIgenerated art can truly be creative or not is already a debate, but it is essential that the fields of art that are known for human expression and communication truly remain in the domain of human beings. . Art is one of the ways human beings express themselves, and art improves communication. Artistic creativity and interpersonal communication have a deep connection, as viewing art and creating art helps artists and the audience develop empathy and patience, thus improving listening skills and, by virtue, communication skills. Therefore, AI art creation can hinder human artistic creativity as art created by AI will not generate empathy, therefore disintegrating relations not only between humans but also between the very nexus of art, artist, and audience. Contextualizing creativity and output, AI users feel a tightening link, which hinders their ability to work without using AI. The most popular example is OpenAI's ChatGPT. According to Tech Business News, students are feeling an overwhelming amount of dependency on it, which makes them complacent as thinkers . Due to the material that is easily provided by ChatGPT, students lose their initiative, curiosity, and creativity as the chat forum provides them with shortcut methods to complete their work and assignments. Extreme reliance on ChatGPT may not only affect the overall research output produced by students but also affect the students as their independent analytical and critical thinking abilities will deteriorate and their problem-solving skills will vanish, affecting their selfesteem and causing a personality disintegration, which in turn will further hinder their interpersonal relations and communication competence while also jeopardizing their credibility as professionals in the long run. Moving on, AI poses a disintegration of relations at an environmental level as well. The advancement of technology, particularly within the realm of AI, has contributed to an ever-growing disconnect between humanity and the natural environment. This detachment is a consequence of the pervasive influence of technology, encompassing elements like the internet, virtual technology, bionic engineering, and robotics, which have come to dominate people's lives. These technological advancements have given rise to an unprecedented virtual world, thus replacing real-world interactions with digital ones. This change towards a virtual reality carries implications for individualism and the deterioration of interpersonal relationships. Firstly, it encourages individuals to detach from the natural world, diverting their attention towards virtual experiences and personal interests. Secondly, it fosters the creation of personalized digital environments where individuals can customize their experiences according to their preferences. While personalization offers convenience, it also confines individuals to a limited range of perspectives and shared experiences. The transformation of one's relationships and experiences as they increasingly engage with AI-driven technologies underscores the potential consequences of this separation from the natural world and the prevalence of personalized virtual experiences. These consequences include the erosion of interpersonal relationships and the promotion of individualism. Ultimately, this trend can lead to the breakdown of familial bonds as individuals become more engrossed in their personalized virtual worlds, further exacerbating the divide between humanity and the natural environment. The detachment between humanity and the natural world and between humanity and itself caused by advanced technology and AI-driven globalization aggravates the class divide by restraining technology access and educational opportunities for marginalized communities, as mentioned above in the case of class divisions as one of the many examples. Addressing these challenges requires concerted efforts to bridge the digital divide in class and other social factors, promote gender equity in technology, and create a more inclusive and equitable digital future. Considering the advent of artificial intelligence, thanks to globalization, it is safe to say that the idea of a 'global village' has failed, as ultimately one only experiences familial and interpersonal disintegration of relationships, as Teltumde rightly suggests in his book, "It has turned the world into a veritable casino where all familiar correlations between action and outcome have collapsed." . Therefore, the Casino Syndrome's second tenet holds true. Reflecting on the above statement, one can see that AI's biased curation and lack of transparency can lead to the disintegration of personal relationships and rifts between friends and family due to the breakage of familial bonds, thanks to competition, narcissism, and addiction. AI's content curation and data collection methods can cause rifts in communal harmony as well as international harmony. Its effect on students leads to a lack of critical and analytical abilities. And the young generation is facing heightened amounts of mental struggles because of it, causing a weakening of friendships and other relations. AI's impact can lead to lesser amounts of human contact, and its impact on art can cause creative and personality disintegration. Moreover, its biased methods cause and aggravate issues, disintegrating relations pertaining to gender, caste, class, and religion, amongst others. Therefore, AI, at the level of its impact, disintegrates more than it unites. --- Disintegration leads to mental health consequences and psychological problems Artificial intelligence has caused changes in every aspect of human life-education, health, politics, etc. Although AI has certain obvious benefits, as described by the American Psychological Association, "in psychology practice, artificial intelligence chatbots can make therapy more accessible and less expensive. AI tools can also improve interventions, automate administrative tasks, and aid in training new clinicians." The use of AI-driven social media and technology can lead to addictive behaviors as AI and algorithms create the seemingly 'perfect' virtual reality for their users. Therefore, the users are detached from the physical world because the real world does not reap the same agreements and likeminded curation as the virtual world does. A prominent example is gaming addiction. Many games like 'Rocket League', 'Halo: Combat Evolved', 'Middle-Earth: Shadow of Mordor', etc. utilize AI . Gaming addiction, even generally, is attributed to obsessive behaviors but video gaming can also cause and/or worsen psychosis and lead to hallucinations . "Diehard gamers are at risk of a disorder that causes them to hallucinate images or sounds from the games they play in real life, research shows. Teenagers that play video games for hours on end have reported seeing "health bars" above people's heads and hearing narration when they go about their daily lives" . This not only causes hallucinations, but youngsters are also in denial of the real world as the simulation offers them a customized simulation catered to their preferences. Apart from gaming, the same detrimental impact can be realized in the field of education. According to Forbes , the use of ChatGPT by students may create a lazy student syndrome as students will be deprived of thinking on their own, and thus, the creation of unique ideas will diminish significantly, and students will give up conducting solid and rigorous research when chat forums like ChatGPT are easily available . Furthermore, AI has ushered in an age of constant connectivity where staying off-grid is a mighty challenge. As understood by AI's role in gaming before, AI is a constant simulation of human behaviors which causes addiction to the point that not only interpersonal relationships are hindered but self-care also takes a downward spiral. Constant presence in this simulation can cause a disconnect from oneself. Multiple AI-driven social media platforms implying multiple and continuous notifications on smartphones, laptops, tablets, and every other device, along with digital assistants and cheap internet, indicate that most people are 'online' 24/7. Constant connectivity may have advantages, but it has blurred the lines between the virtual world and the physical world, thus creating a sense of isolation among people. The constant and unstopping influx of messages, emails, notifications, etc. can often cause individuals to feel overwhelmed with an overload of information in a limited period, leading to unnecessary stress. Approximately 78% of the workforce is facing an overload of data from an increasing number of sources, and 29% are overwhelmed with the huge amounts of constant data influx . Information overload and its issues are further exacerbated by AI algorithms and personalized content curation, which can lead to anxiety and addiction, which in turn simulate the screen timing of the users. During the first quarter of 2023, internet users worldwide spent 54% of their time browsing the internet via mobile phones . Consequently, "excessive Internet use may create a heightened level of psychological arousal, resulting in little sleep, failure to eat for long periods, and limited physical activity, possibly leading to the user experiencing physical and mental health problems such as depression, OCD, low family relationships, and anxiety" . This age, the late twentieth century and the twenty-first century, is often referred to as the 'Age of Anxiety' something that is furthered by the advent of AI. Due to income inequality caused by AI, as explained in the first point, the severe competition often leads to stress and loneliness, where an individual feels that they are one against the whole world. Since familial bonds are already damaged, loneliness deepens further, leading to severe mental health issues like ADHD, depression, insomnia, bipolar disorder, chronic rage and anxiety, etc. Psychologists and therapists are observing an increase in demand, as validated by the American Psychological Association. "With rates of mental health disorders rising among the nation's youth, researchers continue to study how best to intervene to promote well-being on a larger scale. In one encouraging development, the U.S. Preventive Services Task Force recommended in October that primary-care physicians screen all children older than 8 for anxiety in an attempt to improve the diagnosis and treatment of a disorder that's already been diagnosed in some 5.8 million American children. It's a promising start-yet there is much more that the field can do." . Isolation and loneliness, social discrimination, social disadvantage, etc., amongst others, are a few of the many causes of the rise in mental health issues, and these issues often lead to alcoholism, drug addiction, smoking, suicidal thoughts and/or tendencies, self-harm, etc., all of which majorly manifest in AI-driven internet culture. One of the testimonies of this culture is the 'cancel culture', which often culminates in online bullying and can cause isolation, both virtual and real. Consolidating that, according to research, social media users who are canceled experience feelings of isolation and rejection, hence increasing feelings of anxiety and depression . And according to CNN, individuals who experienced social isolation have a 32% higher risk of dying early from any cause compared with those who aren't socially isolated . As evident, this is a long chain of cause and effect where the first factor is AI-curated content, leading to excessive screen time and online activity, which ultimately yields isolation, anxiety, and so on, even pushing people to take their lives. 'AI Anxiety', a term coined by a marketing agency, describes the feeling of uneasiness regarding the effects of artificial intelligence on human critical thinking and creative abilities. Even the recent rise of a platform like TikTok emphasizes individual use over collective use by encouraging one specific user to focus on themselves and to ignore the world during the process of content creation, leading to intense narcissistic tendencies. Altruistic actions caught on camera are also performed minutely because of the notion of becoming 'trending' on social media platforms, not for community benefit . As held before, AI use has the potential to increase superiority amongst people due to the fact that AI has to be 'commanded' . Young children whose social development allows them to interact with people their own age may "devalue or dismiss other people because of their shallow experiences with AI cyber people. And again, as held earlier, this might cause them to overvalue themselves by contrast and could well enhance a tendency toward narcissism." . This furthers the disruption to mental health due to AI. Psychological concerns are also raised in the form of 'Hypomania'. "Contemporary society's "mania for motion and speed" made it difficult for them even to get acquainted with one another, let alone identify objects of common concern." . The current societal obsession with speed and constant motion, akin to hypomania, contributes to psychological issues. In an era of constant connectivity and rapid information flow, individuals struggle to form genuine human connections, causing stress, anxiety, and depression. The overwhelming input of diverse and conflicting information hinders their ability to identify common concerns, exacerbating hypomanic-like symptoms. In the context of AI, this complexity intensifies, causing extreme stress and anxiety as people grapple with global problems and societal divisions. The 'mania for motion and speed' in modern society parallels hypomanic tendencies and fosters psychological challenges. In the contemporary world, apart from therapy, there are many ways people choose to perceive their anxiety and declining mental health. Escapism is a common way in which individuals cope with their mental struggles. People often find solace in art through binge-watching television and/or films, turning towards literature, music, or even social media . Although escapism has its benefits, it can also be addictive, as it can "encourage us to lean on escapism as a coping mechanism. The more passive types of escapism, especially scrolling or watching TV, can become a crutch and start interfering with our overall well being." . Augmented reality is also a form of escapism, as seen above. Gaming addiction is nothing but gamers escaping the real world and spending time in simulated realities where they find solace with their co-gamers. Thus, it can be safely said that gaming, social media, television shows, films, etc. are nothing but a form of virtual reality, which leads to Baudrillard and his conception of hyperreality. According to Dictionary.com , hyperreality is "an image or simulation, or an aggregate of images and simulations, that either distorts the reality it purports to depict or does not in fact depict anything with a real existence at all, but which nonetheless comes to constitute reality.". Jean Baudrillard, in his seminal work, Simulacra and Simulation, writes, "The hyperreality of communication and of meaning. More real than the real, that is how the real is abolished" . Baudrillard's concept of 'Hyperreality' refers to a state where the lines between the physical world and virtual world are excessively blurred, causing a disconnect from the real' tangible world. This disconnect can lead to alienation and isolation, thus negatively affecting mental health. Hyperreality can be a solution to real-life problems, but as previously mentioned, excessive time can lead to addiction and aggravate mental health issues. --- Khan and Aazka The Additionally, an idealized hyperreal world can result in unrealistic expectations, body image issues, and depression. Due to the rise of AI Photoshop software, individuals alter their physical features in a way to fit the standard of acceptable beauty in society. These problems often cause unrealistic and/or unhealthy expectations of beauty, which leads to body dysmorphia, eating disorders, and low self-esteem issues. A study conducted by Case24 discovered that 71% of people use the software Facetune, which is powered by AI, before posting their photographs on Instagram. A habit which can be addictive . Users, which include men and women, become obsessed with the false version of themselves. They often compare themselves to others, further aggravating issues concerning body dysmorphia, eating disorders, anxiety, depression, and low self-esteem, amongst others . According to the International OCD Foundation, "body dysmorphic disorder is more common in women than in men in general population studies . However, it is more common in men than in women in cosmetic surgery and dermatology settings." . Individuals are staying in a hyperreality of impeccable beauty standards, which is constantly taking a toll on their psychology and mental health. Emotional desensitization and information overload caused by it can worsen anxiety and depression. Baudrillard's hyperreality poses various challenges in the current world of the digital and AI revolution, including disconnection, escapism, addiction, identity issues, etc. Artificial intelligence has benefits as well as ill effects. To encapsulate, it may have eased human life, but the ease comes at a cost. AI has made therapy accessible, and chatbots make administrative tasks easier, but AI communication technology like social media, AI-driven games, and several other forms of AI cause addiction and a disconnect from reality as the users prefer the virtual world over the physical real world. Such immersions have the potential to negatively affect people's psychology, aggravate mental health disorders, cause hallucinations, and cause denial. In education, the use of excessive AI can hinder the competence of the students and discourage critical and analytical abilities, thus promoting 'the lazy student syndrome'. AI, which fosters constant connectivity, can cause blurred boundaries between the physical and virtual worlds, and the perpetual online presence can cause detachment from oneself, personality disorder, and overwhelming stress due to information overload. Furthermore, it exacerbates the 'Age of Anxiety' by intensifying stress and loneliness by promoting income inequality and ruthless competition. 'AI Anxiety' emphasizes the unease caused by AI's effect on creativity and analytical abilities. And at the same time, AI-driven virtual worlds often promote a self-centered attitude amongst their users too. In essence, Jean Baudrillard's concept of hyperreality encapsulates these problems, which unravel as the quintessential 'Casino Syndrome', where the lines between reality and the virtual world blur to the extent that it results in disconnection, escapism, addiction, body dysmorphic disorders, identity crises, psychological challenges, and mental health challenges, just as is seen in the numerous tantalizing outcomes of casinos. --- IV. ATTENDING TO THE ILL EFFECTS: TOWARDS ACCOUNTABLE AI AND INCLUSIVE GLOBALIZATION AND CREATING RESILIENCE TOWARDS THE CASINO SYNDROME The integration of artificial intelligence powered by globalization has brought forth significant challenges as well as significant feats. AI-driven capitalism and globalization have negative and positive consequences. Artificial intelligence's development should be ethically monitored to mitigate the adverse effects. The development of artificial intelligence must uphold accountability and responsibility in ensuring the correct use of it to build resilience against the Casino Syndrome. --- Ethical A.I. Development Developers and companies must adopt an ethical approach to designing artificial intelligence at every stage while considering the potential negative social, cultural, and psychological impact. An ethical AI design must be inclusive, and it should find the right balance between its approach towards the individual and the community. It should work in an unbiased way across all fields. John Cowls and Luciano Floridi fashioned four ethical frameworks of A.I. principles for bioethics, which are beneficence, non-maleficence, autonomy, and justice, and an extra enabling principle, which is explicability . Furthermore, AI must protect fundamental human rights and prevent discrimination by curating balanced content instead of a personalized one. --- Transparency AI and its algorithms must ensure transparency in their decision-making processes and data sources, which they must make accessible to their users, to ensure a reliable and trustworthy system. According to K. Haresamudram, S. Larsson, and F. Heintz, A.I. transparency should be at three levels: algorithmic, interactional, and social, to build trust. (Haresamudram et a reliable way to process data collection and ensure the encryption and privacy of their users. --- Mitigation of Bias and Prejudice Designers must give priority to a bias and prejudice mitigation system in A.I. algorithms. To ensure this, audits and testing must be conducted regularly to identify and resolve prejudiced and biased behaviors and ensure an equitable A.I. system. A.I. systems must approach topics with empathy. --- Responsibility and Accountability International and national governing bodies must establish and enforce clear and concise regulations and mechanisms for oversight of technologies that use artificial intelligence. Such regulations must address data privacy, accountability for AI's decision-making results and processes, and, most importantly, AI's use in the fields of healthcare, finance, and education, amongst others. The ethical implications of AI. must be regularly monitored, and institutions that regularly utilize AI must set up committees specifically for AI evaluation. Such committees should include skilled designers and experts from across disciplines and ensure alignment with ethical guidelines. The data provided to AI by users should be controlled by the users, including the right to privacy, the right to deletion, and the ability and basic education to understand the whole process of artificial intelligence content generation. Which leads to: --- Awareness and Education Incorporating digital and media literacy in school curricula is a must to ensure critical thinking, responsible and ethical behavior on the internet, the implications of AI use and understanding its overall processes, the evaluation of information sources, recognising misinformation, and exploring echo chambers and filter bubbles created by AIdriven algorithms. Students should be empowered to make informed decisions and recognise misinformation. Students must learn to foster community and social ties and have face-to-face interactions. Students should be nurtured with empathy. Time management is equally necessary to be taught to the youth to ensure a controlled use of not only AI but also overall screen time. Mental health must be prioritized in education to recognise and manage anxiety and stress levels and to seek help if and when needed. --- Community Building Implementing mindfulness techniques and meditation, along with well-being programs, should be placed and easily accessible in educational and workplace institutions to promote mental health. This initiative should involve a digital detox by promoting and encouraging 'off-grid' time in a productive way to reduce connectivity overload. Along with benefiting mental health, these initiates should also foster community connections and social ties by approaching social anxiety caused by screen time isolation by identifying triggers and instructing and helping attain the coping mechanisms that are and must be 'offline' by involving and fostering art therapy, meditation, meet and greets, relaxation techniques, and other social and required guidance and skills. --- V. NAVIGATING THE COMPLEX LANDSCAPE OF AI-DRIVEN PRESENT AND FUTURE In the contemporary world, the influence of AI-driven globalization with the advancements in technology and the interconnectedness of the 'global village' has brought unprecedented opportunities and complex challenges. Throughout this discourse, it is understood that the addictive implications of the Casino Syndrome, along with its three tenets, are causing significant negative consequences. The paper has dissected the consequences and their nuances to potentially present the threats and remedies. A dissection of the nuances of the Casino Syndrome and its impact can be understood on international, national, local, and individual levels. AI has cast nations into a rat race, especially the United States and China, which are competing for AI supremacy. This kind of competition often becomes hostile by going beyond its original technological trajectory. The world is witnessing technological warfare driven by the world's superpowers, whereas the developing nations, or so-called third-world nations, suffer under tight competition. The consequences of such warfare are far-reaching in terms of technology and economy, affecting millions of people apart from the active participants in the competition. As companies amass fortunes of wealth, it is the working-class laborers who suffer. The fresh employment opportunities in AI primarily benefit those with a particular education and specialized skills, leaving behind those without such advantages. The scenario of AI professionals gaining lucrative job opportunities while others face job insecurity deepens income inequality, echoing the income disparities found within the Casino Syndrome. AI creates damage in interpersonal relationships as well, and it causes narcissistic tendencies by focusing too much on the individual. In the virtual world, people participate in curating content with precision, creating individual bubbles for every person, leading to negative effects on Classical liberalism and neoliberalism, concepts that have foregrounded capitalism, are at the very center of the capitalistic approach to globalization and globalization's approach to AI. Community building is ignored significantly, to the point that individuals either lose their cultural identity or have a fundamentalist reaction to it. The current world encourages individuals to compete against one another due to the intense professional race for employment. Religion and culture have also been commercialized. Whereas lived experiences are becoming tech-savvy, individuals are unable to have proper communication as language is also affected. Eventually, familial bonds are harmed along with the gaping social divide and women's marginalization. AI's impact on mental health has caused a steady rise in mental health issues such as anxiety, depression, and stress in youth. Technology is causing loneliness and social anxiety. Where students' critical thinking abilities are affected. Constant connectivity and information overload are overwhelming. Hyperreality is becoming the reality while ignoring the tangible reality, causing long-term mental health consequences. Addressing the mental health challenges emanating from AI-driven globalization necessitates a multifaceted approach that encompasses ethical AI development, accountability, education, and awareness. To mitigate the harmful effects, ethical AI development must be a priority. This entails designing AI systems with the user and societal well-being at the forefront and finding the right balance between an individualistic approach and a community approach. Key factors include ethics, transparency, mitigation, awareness and education, community building, etc. Preparing individuals with the skills and knowledge to navigate the digital age is crucial. Integrating digital literacy, media literacy, and mental health education into educational curricula empowers people to critically evaluate data, manage stress, and make informed decisions about their internet existence. Increasing awareness about AI-driven globalization's challenges and the "Casino Syndrome" empowers individuals to take proactive steps to address these problems. Acknowledging the detrimental effects of hyperreality on mental health, efforts should focus on enriching resilience. Mindfulness and well-being programs can aid individuals in coping with stress and stimulating mental health. Fostering digital detox and reducing screen time helps establish a healthier equilibrium between technology and real-life experiences. Strengthening community bonds and social ties counters the isolation exacerbated by excessive screen time and virtual environments. Conclusively, AI-driven globalization introduces a unique set of challenges. By proactively enforcing ethical AI development, improving accountability, prioritizing education and awareness, and fostering resilience, one can navigate this complex topography. This approach enables one to harness the benefits of AI-driven globalization while reducing its detrimental results. As one strives to strike a balance between the digital and the real, one can mold a future where AI-driven globalization enriches our lives.

The paper aims to study the detrimental impact of Artificial Intelligence on human life and human consciousness. AI's harmful impact can be described according to the tenets of the 'Casino Syndrome', which was first laid down by Anand Teltumbde in his seminal work 'The Persistence of Caste: The Khirlanji Murders and India's Hidden Apartheid ' (2010). Taking from the addictive and commercial components of Teltumbde's concept, the researchers have attempted to redefine the concept in the context of AI and its detrimental impact on human life. According to the three tenets, researchers have attempted to prove that AI can pitch an individual against all others in the marketplace, leading to unemployment and creating conflicts at local, national and international levels as it creates an 'elitist' agenda which culminates in a 'rat race' and competition. It can disintegrate interpersonal relationships at home, in society and culture and in the workplace due to its extreme focus on individualism thanks to content curation and customized algorithms, and in many other ways, lastly, as a result of the first two, it can also lead to several psychological and mental health problems. The paper explores numerous methods towards creating accountability and inclusivity in AI and the Globalized world and creating resilience against the 'Casino Syndrome' through methods involving ethical considerations, transparency, mitigation of prejudices, accountability, education, etc.. Ultimately, this paper does not deny the obvious benefits of AI, but it highlights the possible negative consequences of uncontrolled and unscrutinised use of it, which has already begun.

Background During the pandemic, many individuals underwent major changes in their daily life. For example, as a result of the closure of public facilities, such as schools and daycare centers, daily routines were disrupted and educational opportunities and professional experiences diminished [1]. Some lost their jobs and social networks due to physical distancing and lockdowns [2]. These changes affected people's mental health. In many countries, including Sweden, the United States, and the United Kingdom, the prevalence of depression has increased significantly compared to pre-pandemic levels [3]. In meta-analyses of the general population, the pooled prevalence of posttraumatic symptoms and psychological stress early in the COVID-19 pandemic was 23.9% and 24.8%, respectively [4]. The Conservation of Resources Theory has been a useful framework to understand mental health deterioration in times of crisis [5,6]. COR theory focuses on resources to understand psychological stress. According to the theory, people endeavor to obtain, maintain, or protect their resources and they experience psychological distress when such resources are threatened or lost [5]. The resources include object resources , conditions , personal characteristics , energies , and such resources aggregate in 'resource caravans' [5]. Resource loss is disproportionately more salient than resource gain, but resource gain becomes more important in the context of resource loss because it buffers the aversive effect of resource loss [7]. Traumatic events like disasters cause a rapid loss of resources and high levels of stress because they often occur unexpectedly, affect the most valuable resources, and make it hard for people to cope with the existing resources [6,8]. Resource loss during the COVID-19 pandemic was associated with negative psychological outcomes, such as COVID-19-related post-traumatic symptoms, stress, loneliness, and emotional distress [9][10][11]. To be specific, psychological distress due to COVID-19 was positively related to the loss of financial resources, family resources, control over the future, fun, and social resource [10]. Personal resilience and social support were protective factors for mental health problems [9,12]. There were also differences in the level of psychological distress based on socioeconomic status, including gender, race, and ethnicity [9,11]. In the context of an epidemic outbreak, risk perception and infection-related experience can be indicators of threat or loss of health. There are a few studies that denoted the risk perception of COVID-19 as a threat to resources, but the studies focused mostly on workers [13,14]. Additionally, few studies applied COR theory to address infection-related experience as a risk factor for mental deterioration [15]. Therefore, it is necessary to consider variables that reflect the context of the COVID-19 outbreak, such as risk perception and infection experience to assess the impact of resource loss on mental health. Moreover, mental health is affected by social factors as well as personal factors [16]. To be specific, social support is one of the most important social resources in COR theory, and it serves as a major reservoir for resources other than personal resources [17]. Several studies revealed that social support buffered the adverse effect of resource loss during the pandemic [12,18]. In addition, other factors such as neighborhood social relations and stigma related to infection were associated with mental health, but these factors were rarely reflected in the previous studies applying the COR theory during the pandemic [16,19,20]. In the present study, we investigated the impact of resource losses during the COVID-19 pandemic on mental health, through the lens of COR theory. Furthermore, we took situational and social factors into account. It was hypothesized that sociodemographic factors and health status risk perception and infection-related factors resource loss and social factors will be associated with a negative mental health outcome. --- Methods --- Participants and procedures In this study, we adopted a cross-sectional survey design to assess Gyeonggi residents' mental health and related resources during the COVID-19 pandemic. Gyeonggi has the largest population among the 17 administrative districts and the largest number of new and cumulative confirmed cases in South Korea [21,22]. At the time of the survey, approximately 18.9% of the cumulative confirmed cases in Korea were reported from Gyeonggi [23]. The survey was conducted online over eight days , when the second wave of the COVID-19 pandemic in South Korea declined. Health authorities announced a two-week "special prevention period" to strengthen prevention measures due to the Chuseok holiday [24]. Respondents were recruited from survey panel members of Hankook Research, one of the largest research companies in South Korea with a panel of 1.69 million. Adults in Gyeonggi were recruited using proportional and quota sampling methods based on age and sex. The survey Uniform Resource Locator containing the study purpose and consent statement was sent via text message and e-mail. A total of 2,548 people participated in the survey. --- Measures --- Dependent variables: peritraumatic distress and depression The public's mental health was assessed using two instruments. The 13-item peritraumatic distress inventory was used to measure the level of peritraumatic distress, or the physiological, emotional, and cognitive responses experienced during and shortly after a traumatic event [25,26]. The PDI is a self-report questionnaire consisting of two factors: negative emotions and perceived life threat and bodily arousal . The PDI was demonstrated to be internally consistent and have good test-retest reliability as well as good convergent and divergent validity [25]. We used the Korean version of the PDI, which was translated into Korean by public health professionals who are fluent in both English and Korean, using the back-translation process [27]. Participants rated the items using a 5-point Likert-type scale . The evaluations were summed to calculate the total score, with a higher total score indicating a highly distressed status. The PDI had excellent internal consistency in this study . The Patient Health Questionnaire-9 is a reliable and valid tool for measuring the severity of depression and is widely used in primary care settings [28,29]. We used the Korean version of the PHQ-9, which was translated by psychiatric professionals and demonstrated to be reliable and valid [30]. Participants evaluated how often they had been bothered by the presented problems over the past two weeks, using a 4-point Likert-type scale . The ratings were added together, and a higher total score indicates more severe depression. The PHQ-9 showed excellent internal consistency in this study . --- Independent variables Sociodemographic factors and health status Sociodemographic factors included gender, age, education level, marital status, and monthly household income . Participants were also asked to rate their health status . [31,32]. Respondents rated the perceived susceptibility and the perceived severity of COVID-19 infection using a 5-point Likert-type scale , and the average of the evaluations for the two items was calculated. The greater the score, the higher the risk perception. --- Risk perception and infection-related factors Risk perception of COVID-19 infection was measured with two items following the previous research Additionally, we asked participants if they or someone close to them had been infected or had been isolated or quarantined due to COVID-19 --- Resources Loss and change in employment status The item scale was constructed to assess the extent of resource losses due to the COVID-19 pandemic. The Conservation of Resource-Evaluation questionnaire, a tool to measure resource loss developed by Hobfoll, has four constructs: material, personal, energy, and interpersonal losses [33]. Such constructs were used to guide item generation and 12 items were selected for each of the four domains of the COR theory. Examples include "It was hard for me to buy necessities, " "It negatively affected my self-esteem, " and "It had a negative influence on my physical health. " The items were translated into Korean by the public health professionals of the research team and reviewed by another public health expert, all of whom were fluent in both Korean and English. The participants responded to the items regarding how much COVID-19 has affected their resources using a 5-point Likert-type scale . The higher the score, the greater the degree of resource loss caused by the COVID-19 pandemic. Furthermore, respondents answered the question "Have you had any changes in employment status and wages due to COVID-19?" . We classified the responses into four groups: 'economically inactive, ' 'maintained employment status and income, ' 'maintained employment status but reduced income, ' and 'lost job. ' Social variables Social support was evaluated by the number of people, other than family, to whom participants could turn for urgent help if they had to be isolated due to COVID-19 infection or close contact with a confirmed case [32]. The more persons they had access to for assistance, the higher the level of social support. Fear of social stigma was evaluated with three items, following Yoon, You, and Shon [27]: [I am afraid that…] "if I become a confirmed COVID-19 patient, I will be criticized or disadvantaged based on this fact", "if there are confirmed patients in my neighborhood, my neighborhood will be criticized or disadvantaged based on this fact", or "if there are confirmed patients in my group , my group will be criticized or disadvantaged based on this fact. " Participants indicated their level of agreement with the statements using a 5-point Likert-type scale , and the average ratings for three items were calculated. The inter-item reliability was acceptable . Trust in the neighborhood is the belief that members of the neighborhood are willing to comply with COVID-19 prevention guidelines, have sufficient capacity to deal with this public health emergency, and have the resilience to recover. It was assessed by asking respondents how much they agree with six statements such as "People in my neighborhood follow personal preventive measures well, " "My neighborhood will overcome the crisis and recover effectively even if suffering from infectious diseases. " Participants responded using a 5-point Likert-type scale . The average ratings for six items were then calculated. The inter-item reliability was good . --- Data analysis First, descriptive analysis was performed to present the sociodemographic characteristics, COVID-19-related resources, and mental health status of the participants. The results were reported either as frequency or mean and standard deviation . Second, a four-step hierarchical linear regression was conducted to estimate the associations between resources and mental health during COVID-19. In the first step, we included sociodemographic factors and health status as potential confounding factors affecting mental health . In the second step, we added risk perception and COVID-19 infection-related experiences to examine the effects of life threats during the pandemic on mental health . In the third step, we added resource loss and change in employment status to examine the impact of resource loss and threats to livelihood during the COVID-19 pandemic on mental health . In the final step, we added social variables . The variance inflation factor was applied to detect multicollinearity in each hierarchical model. As there was no VIF value exceeding 10, we determined that there was no multicollinearity. Statistical analyses were conducted using the R version 4.1.1 software . --- Ethical considerations The study was approved by the IRB of Seoul National University of Bundang Hospital . --- Results --- Sociodemographic characteristics Sociodemographic characteristics are presented in Table 1. Among the 2,548 participants, there were 1,273 men and 1,275 women . The average age of the participants was 44.8 years old. The majority of the participants received at least some college education , and some had less than a high school education . More participants had a spouse than were unmarried, divorced, or bereaved . The most common monthly household income was over KRW 6 million , followed by KRW 2-3.99 million , and KRW 4-5.99 million . Most participants reported their subjective health status as moderate or good . --- COVID-19-related variables and mental health status The results of descriptive analysis on COVID-19-related variables and mental health status are presented in Table 2. The average PDI score was 22.63 . Most of the participants required a checkup after several weeks, and 27.0% required immediate care and follow-up. The average PHQ-9 score was 6.97 , and 28.2% of the participants were moderately to severely depressed. The average risk perception score was 3.43, which was higher than moderate . Approximately 14.7% of participants or their close acquaintances were infected with COVID-19 or had to be isolated or quarantined. Regarding employment status, 36.6% of the participants maintained their jobs and income, 24.7% kept their jobs but their incomes declined, and 8.6% lost their jobs. The majority of participants had at least one person they could ask for help with during self-isolation or selfquarantine, but 13.2% of participants had no one to ask for help. The average score of fear of social stigma was 3.38 , which indicates that participants felt stigma-related fear that was higher than moderate level . The average trust in the neighborhood score was 3.65 , which was higher than moderate . --- Hierarchical linear regression The influence of COVID-19-related variables on peritraumatic distress Table 3 shows the results of a four-step hierarchical linear regression analysis for peritraumatic distress. In model 1, sex, age, marital status, and subjective health status were significant predictors of peritraumatic distress = 29.71, p < .001). Peritraumatic distress was higher among females and those that were younger, married, and less healthy. Model 2 shows that risk perception and COVID-19 infectionrelated experiences were positively related to peritraumatic distress (R --- The influence of COVID-19-related variables on depression Hierarchical linear regression analysis for depression is presented in --- Discussion This study examined the effect of resource loss on mental health during the COVID-19 pandemic by applying the COR theory and considering the situational and social context. There are several notable findings in this study. First, COVID-19 infection-related experiences were associated with peritraumatic distress and depression, which is consistent with the results of previous studies [27,34]. COVID-19 threatens health, daily functioning, and safety which are related to basic needs for humans [35,36]. In addition to fear of death and the physical discomfort caused by disease, COVID-19 patients are exposed to stressors such as guilt, concerns about the health of loved ones, privacy violations, and social stigma [37,38]. Likewise, a quarantine experience during the COVID-19 outbreak is related to fear of infection, frustration and boredom, social rejection, and financial problems [39]. In order to mitigate the consequences of COVID-19 quarantine and isolation, officials should restrict the length of isolation or quarantine as short a time as possible based on scientific evidence, and provide adequate resources such as reliable information and basic supplies [39]. In addition, after controlling for other variables, the effect of risk perception on distress persisted in this study. Even if risk perception decreased with new variants and the increased availability of vaccines, perceived risk can still be high for people who are more likely to be exposed to the virus and have more severe effects [40,41]. Trust in government and medical professionals is related to risk perception, so governments should maintain their accountability by improving preparedness for and responses to infectious diseases, which includes ensuring sufficient healthcare resources and funding [42,43]. The leaders should communicate empathically addressing the feelings and hardships of the public to build trust and rapport [44]. Second, resource loss during the COVID-19 pandemic had a significant effect on mental health. Greater levels of peritraumatic distress and depression were associated with greater losses of resources. As people already lacking in resources are more likely to experience loss spirals, socially vulnerable groups like low-income and ethnic minorities are more likely to have suffered severe psychological damage during the pandemic than those with abundant resources [5,45,46]. Moreover, those who lost resources and opportunities due to COVID-19 but are not socially disadvantaged, such as young job seekers or family caregivers, are more likely to experience mental distress [47,48]. Especially, job loss and financial hardships that ensue as a result, have been one of the biggest issues during the COVID-19 pandemic. In a 2022 Pew Research Center survey, 71% of Americans considered strengthening the economy a major policy priority, while 60% prioritized managing the COVID-19 outbreak [49]. In this study, change in employment status during the pandemic had a significant impact on depression levels. Unemployment is associated with the deterioration of positive personal resources, such as resilience, optimism, and self-efficacy, and impacts other conditions [50,51]. Delivering integrated mental health and employment services through integration in organizations and coordination is necessary to support mental health [3,52]. This includes providing jobseekers with job-search assistance, counseling, and training opportunities to facilitate their return to the workforce [3]. Third, social support plays an important role in coping with stressful situations, as noted in previous studies on stress [53]. Social connectedness and social support during or after a traumatic event are associated with lower levels of mental health problems [54,55]. Generally, individuals feel comfortable seeking help from family and friends, but social interactions with these people may have been reduced during the COVID-19 pandemic [56,57]. Since it is difficult to maintain face-to-face social relationships during infectious disease outbreaks, social support systems, such as remote consultations or social prescribing services, should be utilized [58]. Furthermore, fear of social stigma was a risk factor for peritraumatic distress and depression. When responding to a highly uncertain and previously unknown risk such as COVID-19, people may fear the unfamiliar peril and stereotype or discriminate against those deemed to be related to the risks [59]. During the COVID-19 pandemic, stigma was directed against suspected and confirmed patients, dead people and their families, healthcare workers, and out-group members [20]. Even though the fear of the infection and the stigma against COVID-19 patients may decrease due to the increased knowledge about the COVID-19 and acquisition of immunity from vaccines, the stigma would not be eradicated. In previous research, the SARS-associated stigma of SARS victims was maintained and reconstructed even after the epidemic had been over, leaving SARS victims psychologically distressed [60]. Furthermore, when the stigma of infection intersects with existing prejudices in society , they create a social stigma that can endure long after an outbreak of an epidemic [61]. Therefore, the government should follow up mental health of stigmatized people during the pandemic and provide them with social support services [60]. Moreover, it is necessary to address broader social stigmas in order to change discriminatory social norms [61,62]. This study has the following limitations. First, since it was conducted as a cross-sectional study, it is difficult to infer the causal relationship between variables. Second, the survey was conducted in the early period of the COVID-19 pandemic, before the emergence of diverse SARS-CoV-2 variants [63]. A follow-up study may be needed to capture the effects of these virus variants on mental health outcomes. Finally, we used the average score of resource losses in the analysis, so it is difficult to know what kind of resource losses had the most severe impact on mental health deterioration. --- Conclusions This study investigated the effect of the loss of resources during COVID-19 on mental health, using the lens of COR theory. We additionally explored the impact of COVID-19-related situational and social factors. The results indicate that COVID-19 itself threatened the physical and mental health of the public. Improving preparedness and responses to other new infectious diseases remains important. Since the resource loss during COVID-19 resulted in negative mental health outcomes, it is important to investigate what kinds of resources need to be gained to mitigate this effect. It is necessary to monitor the mental health status of people who have previously lacked resources or who lost enormous resources due to the pandemic and provide them with social support programs, including economic support and community referral to improve mental health. --- --- Abbreviations --- COVID-19 Coronavirus disease 2019 PHQ-9 Patient Health Questionnaire-9 PDI Peritraumatic Distress Inventory Author's contributions YL and MY conceptualized the study; MY and HL supervised the study; MY, YH, and HL designed the survey and interpreted data; J-OH and SS conducted the survey and collected data; YL and YH performed the literature review; YL performed formal analysis of the study; YL and YH wrote the initial draft; MY critically reviewed and improved the manuscript. All the authors substantially contributed to the study and approved the final manuscript. --- --- --- Competing interests The authors declare no competing interests. • fast, convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year --- • 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: ---

Background The public experienced loss of resources, including their health and property during the COVID-19 pandemic. The Conservation of Resources (COR) theory is a useful tool to explain the effect of resource loss on mental health. This paper examines the effect of resource loss on depression and peritraumatic distress considering the situational and social context of the COVID-19 pandemic applying COR theory. Methods An online survey was conducted for Gyeonggi residents when the second wave of COVID-19 in South Korea declined (5 October to 13 October 2020); 2,548 subjects were included in the hierarchical linear regression analysis. Results COVID-19 infection-related experiences, resource losses (e.g., financial burden, deterioration of health, and decline of self-esteem), and fear of stigma were related to elevated levels of peritraumatic distress and depression. Risk perception was associated with peritraumatic distress. Reduced income or job loss were related to depression. Social support was a protective factor for mental health.This study suggests that we need to focus on COVID-19 infection-related experiences and loss of daily resources in order to understand mental health deterioration during the COVID-19 pandemic. Moreover, it is important to monitor the mental health of medically and socially vulnerable groups and those who have lost resources due to the pandemic and to provide them with social support services.

Introduction Adolescent HIV prevention interventions aimed to delay sex initiation and reduce sexual risk behaviors have been conducted in many developed and developing countries in response to the growing HIV epidemic [1]. Global literature indicates that many theory-based HIV prevention interventions conducted among adolescents in developed countries have been efficacious, resulting in substantial reduction of sexual risk behaviors [2][3][4][5]. A recent study suggested that about two-thirds of HIV intervention programs implemented among youth in schools, clinics and community settings in the United States showed a positive impact on delaying the debut of sex, reducing the number of sexual partners and increasing contraception use [6]. Another literature review by Speizer et al. [7] suggested that some school-based HIV educational programs in developing countries had effects on behavioral changes. Many school-based HIV interventions in developing countries have demonstrated significant effects on knowledge and attitudes. For example, an intervention implemented among high schools students in KwaZulu Natal in South Africa demonstrated significant improvements in HIV-related knowledge and attitudes [8]. Another intervention implemented among 845 students in four high schools in the semi-urban district of Metro Manila, the Philippines, demonstrated a significant effect in increasing HIV-related knowledge and in improving attitudes toward people living with HIV/AIDS [9]. However, some school-based interventions failed to demonstrate an effect. For instance, a study conducted in Uganda among 20 intervention schools and 11 control schools showed no post-intervention improvement in seven of nine areas of HIV-related knowledge, attitudes and intention [10]. HIV knowledge has been a focus of HIV prevention among adolescents. Although it may not be sufficient, HIV knowledge has been proven to be necessary to increase protective sexual behaviors [6]. In addition, incorrect information about HIV may lead to an increase of stigmatizing attitudes toward PLWHA [11]. Therefore, it is important to improve adolescents' knowledge of HIV and understand the link between HIV knowledge and HIV-related stigma. HIV is among the most stigmatized conditions [12]. HIV-related stigma impacts the social interaction of PLWHA with their family and other people in society [13]. HIV-related stigma has been documented throughout the world, including China [14][15][16]. Prejudicial attitudes toward PLWHA and the stigmatization against PLWHA are persistent in Chinese society [17]. For instance, medical personnel who were providing treatments for AIDS patients were less willing to interact with AIDS patients [18]. A study conducted among 4208 rural-to-urban migrants in Beijing and Nanjing suggested that misconception was positively associated with stigmatizing attitudes toward PLWHA [19]. A qualitative study by Yang et al. [20] suggested the existence of the institutional forms of stigma in health care settings and the authors emphasized the importance of stigma reduction interventions. However, few studies have examined the effect of HIV prevention intervention on stigma reduction in the Chinese setting. One HIV stigma reduction intervention study among health care providers conducted in four hospitals in Yunan province suggested that at 3-and 6-month post-intervention, health care providers were less likely to report negative feelings toward PLWHA [21]. Another study conducted in Hong Kong among 600 9th and 10th graders indicated that negative perceptions about PLWHA can be reduced substantially through the school-based stigma reduction intervention [17]. Adolescents in China appear to have limited knowledge about HIV and limited formal sources for HIV-related knowledge and information [22,23]. In a recent study, while adolescents were aware of the main routes through which HIV is transmitted, they had numerous misconceptions about whether HIV can be transmitted through some daily contacts [24]. A substantial proportion of participants believed that some routine daily activities such as 'eating food at a restaurant where the cook has HIV/AIDS', 'sharing plates, forks or glasses with someone who has HIV/AIDS', 'using public toilets' and 'coughing or sneezing' could transmit HIV. Such misconceptions may cause undue fears of HIV contagion, which in turn results in stigmatizing attitudes toward PLWHA. The existing HIV prevention literature has also documented the importance of a theoretical framework in guiding the development of an HIV prevention program [25]. One of such theoretical framework is the protection motivation theory . PMT is a social cognitive theory, which emphasizes the cognitive processes of behavioral change [26]. PMT describes adaptive and maladaptive responses to a health threat that are the result of two appraisal processes-the threat appraisal process and the coping appraisal process . The threat appraisal process is the process through which people assess a threat based on environmental and personal factors combining to pose a potential threat. This process includes four factors: intrinsic and extrinsic rewards, which increase the probability of selecting a maladaptive response, and severity and vulnerability, which decrease the probability of selecting a maladaptive response [27]. The coping appraisal process is the process of coping options based on a person's perceived efficacy and cost of the social and personal factors that contribute to their ability to avert the threat. The X. Li et al. coping appraisal includes three factors: self-efficacy which is the perceived ability to carry out the adaptive response, response efficacy which is the belief of the adaptive response being effective and response cost which is associated with taking the adaptive coping response. Response efficacy and self-efficacy increase the probability of selecting an adaptive response, while the response costs decrease the probability of selecting an adaptive response. The two appraisal processes combine to form protection motivation. The interaction of appraisals for the threat and coping responses results in the intention to perform an adaptive response to avert the threat, which promote or mediate behavior changes. Guided by the PMT, the 'Focus on Kids' was designed as a comprehensive HIV/STI education and prevention program for adolescents and young adults [28]. Supported by the National Institutes of Health, the FOK program was developed, implemented and evaluated among urban African American adolescents in Baltimore in the 1990s [5]. In 1998, Centers for Disease Control and Prevention designated FOK as one of the 'Programs that Work' nationwide in the United States. FOK has been identified as an efficacious evidence-based intervention program for HIV prevention and has been disseminated both national and internationally [29]. The FOK program has been demonstrated to reduce adolescent risk behaviors and/or perceptions in many non-Western cultural settings, including Namibia [30], Vietnam [31], China [32] and the Bahamas [33]. A study conducted in 1997 among Namibian adolescents indicated that the culturally adapted FOK intervention program had an effect on condom use at 2-month post-intervention and had an effect on abstinence at 12-month post-intervention [30]. The study conducted in Vietnam in 2001 showed a significant intervention effect on the seven PMT constructs at immediate post-intervention and at 6month post-intervention [31]. The Vietnam study also showed effect on intention of future-condomuse but not intention of abstinence. Several studies in Asian countries did not find significant intervention effect on sexual behaviors because of the relatively low rates of sexual activities among adolescents in those countries [31,32]. The culturally adapted FOK program demonstrated a significant effect on delaying behavioral progression toward risky sex among children and adolescents in the Bahamas [33]. A number of HIV prevention programs have been carried out in China in recent years [34,35]. However, these efforts mainly targeted high risk or adult populations, including intravenous drug users HIV prevention intervention among adolescents in China [36], female sex workers [37][38][39], men who have sex with men [40] and college students [32]. Some school-based HIV prevention intervention studies demonstrated some positive effects on knowledge, attitudes and behaviors. However, they were either with a short follow-up period or with a low follow-up rate [41,42]. Moreover, there have been limited efforts to design and implement theoretically driven school-based HIV prevention interventions targeting adolescents in China. To promote HIV prevention intervention among adolescents and youth in China, we have culturally adapted FOK for college students and high school students in China since 2001. The findings from the college students intervention study showed that at 6-month post-intervention, HIV knowledge and protective perceptions were increased while the intention to have sex in the next 6 months was decreased among youth in the intervention condition [32]. However, data from high school students have not been reported to date. The purpose of the current study was to examine the intervention effects on HIV-related knowledge, perceptions, attitudes and intentions among high school students. The findings may inform the development of effective school-based HIV education prevention programs in China and other developing countries. --- Methods --- Study site and participants Nanjing, the capital city of Jiangsu province in eastern China, was the site for the current study. Nanjing, with a population over 6 million, is the second largest commercial center after Shanghai in the east region of China. Nanjing has also served as a national hub of education, research, transportation and tourism throughout Chinese history. Six high schools in the Nanjing metropolitan area participated in this pilot intervention program in which three schools were randomly assigned to the intervention condition. In these three schools, 140 students voluntarily received the culturally adapted FOK prevention curriculum. The other three schools were assigned to the control condition in which 164 students voluntarily participated in the assessment. The follow-up rate at 6-month post-intervention was 94.4% . The research protocol was approved by the Institutional Review Boards of West Virginia University in the United States and Nanjing University in China. --- Cultural adaptation of the FOK curriculum The intervention curriculum in this study was a cultural adaptation of the FOK HIV prevention program [5]. The FOK curriculum and its assessment tool-the Youth Health Risk Behavior Inventory [43] were adapted into Chinese settings based on extensive qualitative and quantitative data collected from high school students and college students [32,44]. The culturally adapted curriculum consists of eight sessions with a total delivery time of approximately 12 hours . Each of the sessions explored one or more of the seven PMT constructs . The process and context of the cultural adaption of the curriculum into Chinese setting have been described elsewhere [32,44]. In addition to the changes made to the curriculum and survey instrument for college students [32], further modifications were made in response to the developmental stage of high school students. These additional changes include the change of intervention focus from both abstinence and safe sex for college students to mainly abstinence for high school students as the rate of sexual initiation was low among high school students at the time of the study [44], the removal of explicit materials related to condom use in both curriculum and survey instrument at the request of the local schools and change of stories, games and fictional figures in the vignettes in the intervention curriculum so that the content/format is developmentally appropriate for the high school students. Although condom use was one of the primary outcomes in the original FOK curriculum, similar adaptation (i.e. removal X. Li et al. of condom-related materials from the intervention curriculum) has been done among adolescents in both the United States [45] and overseas [31], where the inclusion of explicit materials or content related to condom use was considered either developmentally or culturally inappropriate. --- Delivery of the intervention After receiving extensive training from the US and Chinese investigators, four graduate students and seven faculty members from a university in Nanjing delivered the culturally adapted high school student version of FOK curriculum to students in the intervention group. Permission was obtained from the local education bureau and school administrators to conduct research in participating schools. Written informed consent forms were provided by all students before their participation in the study. Consistent with the common practice of involving school students in research in China at the time of the study [22,44], no parental consent was obtained. Students in the intervention classrooms were divided into several small groups for curriculum-related activities . --- Assessment procedure Data collection was conducted at baseline and 6-month postintervention by trained interviewers. All participating students completed a self-administered confidential questionnaire in their classrooms during regular school hours. The participants were assured of the confidentiality of their responses. School personnel were not allowed to present in the classroom during the survey. A total of 304 high school students aged 15-19 years participated in the baseline survey and 287 of the baseline cohort participated in the 6-month post-intervention survey. --- Measures --- Demographic characteristics Participants were asked to provide information on their age, gender, school performance, family com-position, parental education and family income . The school performance in academic classes was measured in letter grade using a 5-point scoring system . Family composition was measured in the current study as living with both parents versus other living arrangement . Parental education was initially measured with six categories and was dichotomized into two categories in the current study because of the small frequency in categories of '<primary school' or '3-year college' and beyond. Family monthly income was assessed with six categorical responses . --- PMT constructs Seven PMT constructs related to early sexual initiation or abstinence were measured using 24 questions in the survey. Extrinsic rewards. Perception of extrinsic rewards was assessed using eight items . The Cronbach's alpha for this scale is 0.62. These items had a 4-point response option ranging from 'none' to 'most'. Intrinsic rewards. Youth's perception of intrinsic rewards was assessed with one item by asking participants how likely for them to take the risk in order to 'be the same' as some other classmates. This item had a 4-point response option . Severity. Perceived severity or negative consequences of early sexual initiation and sexual risk behavior were assessed using five items pregnant in the first sex', 'One may get HIV through a single sexual intercourse' and 'One may get HIV if he/she HIV prevention intervention among adolescents in China has multiple sexual partners'). Each of these statements had a 4-point response option . Vulnerability. Perceived vulnerability to early sexual initiation was assessed using two items regarding the likelihood of having sex before graduation or before marriage. These items had a 5-point response option . Response efficacy. Response efficacy had four items assessing perceptions of the effectiveness of abstinence . These items had a 4-point response option . Self-efficacy. Self-efficacy was measured using two questions . The two items had a 4-point response option . This scale had Cronbach's alpha of 0.68. Response cost. This construct was assessed using two items regarding the possible barriers or negative consequences of abstinence . These two items had a 4-point response option . --- HIV knowledge Participants were asked to give answers to a list of 13 questions related to transmission/nontransmission routes . These 13 items initially had a 4-point response option which were dichotomized into '0 = incorrect' and '1 = correct' for the purpose of data analysis. The sum score was used as a composite score ranging from 0 to 13 with a higher score indicating a higher level of HIV knowledge. These 13 items had an adequate reliability estimate . --- Stigmatizing attitude Stigmatizing attitude toward PLWHA was measured using one question . Participants were asked whether they agreed with the statement or not. This item had a 4-point response option . --- Intentions to engage in sexual behavior and other health risk behaviors Participants were asked about their intentions to engage in sexual intercourse and some other health risk behaviors in the next 6 months. Each intention was assessed with a 4-point response option ranging from 'very unlikely' to 'very likely'. --- Sexual behavior Participants were asked a dichotomous question: 'Did you have sexual intercourse in the past 6 months' . --- Statistical analysis Analysis of variance or chi-square test was used to examine the baseline differences in age, gender, school performance, family composition, parental education and family income between the intervention group and the control group. In addition, the differences in primary outcomes of the intervention between the intervention group and control group at baseline and 6-month post-intervention were examined using ANOVA. Because the majority of PMT constructs had low reliability estimates , the analysis related to PMT constructs was conducted at item level rather than scale level. Following the guidelines by Baron and Kenny [46], multivariate linear regression analysis was performed to examine the role of HIV knowledge in mediating the effect of the intervention program X. Li et al. on stigma reduction . Three multivariate linear regression models were used to test the effect of mediator . In the first model, the independent variable was regressed on the mediation variable with a regression coefficient a. In the second model, the independent variable was regressed on the dependent variable with a regression coefficient c. In the third model, the independent variable and the mediation variable were simultaneously regressed on dependent variable with regression coefficients c# and b . In addition, age, gender, school performance, family composition, parental education, family income, baseline HIV knowledge and baseline stigmatizing attitude were controlled in each of the regression models. --- Results --- Demographic characteristics The mean age for all participating students was 16.3 years . The majority of participants were living with both parents. The intervention group and control group were similar in age, school performance, family composition, parental education and family income at baseline . There were more male students in the intervention group than in the control group , although such difference did not reach statistical significance. --- Intervention effect Table II shows that there were no differences in baseline HIV knowledge between the intervention group and the control group. There was a significant increase of HIV knowledge scores from baseline to 6-month post-intervention in the intervention group but not in the control group . There were no significant differences between the intervention group and the control group in the seven PMT constructs at 6-month post-intervention except the response cost items, which significantly differed between the intervention group and the control group . One extrinsic rewards item showed a significant difference with the perception being reduced in the intervention group at the 6-month post-intervention. There were no statistically significant group differences on intention of having sex and other health HIV prevention intervention among adolescents in China risk behaviors. As shown in Table II, stigmatizing attitude scores were similar at baseline between the intervention group and the control group. The stigmatizing attitude in the intervention group was reduced from 2.62 at baseline to 2.57 at 6-month post-intervention , while there was no significant change on stigmatizing attitude in the control group . There were no statistically significant differences between the intervention group and control group on percentage of participants who reported having sexual intercourse at either the baseline or the 6-month post-intervention . --- Mediation effect of HIV knowledge Mediation analysis indicated that HIV knowledge mediated the effect of intervention on stigma reduction . HIV knowledge was positively associated with the intervention condition controlling for key demographic factors . In addition, HIV knowledge was also positively associated with the baseline HIV knowledge . Model 2 showed a direct effect of intervention on stigma. Stigmatizing attitude was negatively associated with the intervention condition . Model 3 showed that when both HIV knowledge and intervention condition were included in the model, HIV knowledge was negatively associated with stigmatizing attitude while the significant direct effect of intervention on stigmatizing attitude was diminished . --- Discussion Findings from this study suggest that the cultural adaption of the FOK intervention program among Coding for school performance: 1 = mostly Fs, 2 = mostly Ds, 3 = mostly Cs, 4 = mostly Bs and 5 = mostly As. X. Li et al. 'Most students think that it is cool for a male student having multiple sex partner' 'Most students think that it is cool for a female student having multiple sex partner' --- Intrinsic rewards To be same as some other classmates, I likely to take the risk of having sex' HIV prevention intervention among adolescents in China high school students in China was effective in increasing HIV knowledge and decreasing perceptions of response cost associated with abstinence. In addition, the FOK intervention program had demonstrated an effect in reducing negative attitude toward PLWHA. Data in the current study also showed that HIV knowledge had a mediation effect on reduction of stigma against PLWHA. The inter-vention appears to reduce stigmatizing attitudes toward PLWHA by increasing the accurate HIV knowledge among adolescents. However, the intervention program has limited effects on PMT constructs. There were several possible reasons for the non-significant changes of most PMT items over time. First, there might be some measurement issues of the PMT constructs. Given the young age of the participants, operationalizing these theoretical constructs has always been a challenge [31]. The low Cronbach's alpha for most PMT constructs may contribute to the nonsignificant findings in the current study, although these alphas were comparable with those in the previous FOK intervention studies [31,33]. Second, there might be an insufficient statistical power to detect the significance due to the relatively small sample size. Although the changes of most PMT constructs between the intervention group and the control group at the 6-month post-intervention did not reach statistical significance, many of them showed a trend of changes in the expected direction . The limited intervention effect on PMT constructs may also be a result of the changes in the curriculum including the removal of condom userelated materials. The materials related to condom use were removed from the original FOK curriculum during the adaption process. Although the local schools initiated the motion of removal, the removal was developmentally justified and consistent with the change of the program focus . It was possible that the effect of the culturally adapted curriculum was affected by the removal of the condom use materials. However, given the program focus on abstinence among adolescents of this age group, it was also unlikely that such effect will be substantial. Nevertheless, future study is needed to examine this longstanding issue of balance between the program fidelity and cultural adaptation and explore the potential effect of removing a core program component, although justified, on the effectiveness of the program in a new cultural setting or among a new population. There are several methodological limitations in this study. First, the single item measure of the stigmatizing attitude toward PLWHA might not reflect other aspects of stigma against PLWHA. Second, the sample in the current study was a convenience sample. Therefore, our ability to generalize the findings to other populations of adolescents may be limited. Third, the current study employed a quasi-experimental research design, so potential treats to the internal validity of the study may exist. Fourth, this study evaluated only the effects at 6-month post-intervention, longer term effects need to be evaluated in the future research. Fifth, most PMT scales had low reliability estimates . Future study is needed to develop culturally appropriate and psychometrically adequate measurement of PMT constructs in China and other non-Western cultural settings. Despite these potential limitations, to the best of our knowledge, the current study is one of the first efforts to implement and evaluate a theory-driven school-based HIV prevention intervention among high school students in China. The findings of the current study have several implications for the future HIV prevention efforts among adolescents in China and other developing countries. First, schoolbased HIV prevention intervention programs among adolescents need to include a focus on HIV awareness. The lack of HIV awareness may reduce the perceptions of severity and vulnerability of contracting HIV, which in turn, may reduce one's protection motivation. Second, HIV stigma reduction should be built into the existing HIV prevention programs among adolescents. HIV-related stigma reduction intervention among children and adolescents is critical for effective HIV prevention, diagnosis, treatment and care. HIV knowledge education and stigma reduction intervention among adolescents may benefit the HIV testing and treatment that subsequently prevent the HIV epidemic. Third, the HIV prevention program among children and young adults in China needs to prepare them for future engagement in protective behaviors such as condom use by improving their knowledge in relation to vulnerability and severity of HIV/AIDS and their perceptions of self-efficacy and response efficacy of condom use. In China and other Asian countries, there is a strong social pressure against premarital sex, which may contribute the delay in sexual initiation among adolescents HIV prevention intervention among adolescents in China and young adults [31,44]. However, the same social pressure also may contribute to youth being unprepared to engage in protective behaviors. Given the rapid social and economic changes in China and resultant changes in youth's sexuality and personal freedom, there is an increased likelihood that these youth need to be prepared to make informed decision regarding protective sexual behaviors including use of condoms in the near future. While the main focus of the current research, in respond to the low rate of sexual initiation among the target population, was on abstinence rather than safe sex, future research is needed to examine the link of the improvement in HIV/AIDS knowledge and other attitudes with safe sex behaviors among these adolescents if and when they become sexually active. Finally, future research needs to reconceptualize the theoretical constructs related to HIV-related sexual risk so that they can be used to adequately assess the perceptions of adolescents and guide the development and implementation of effective HIV prevention education in China and other developing countries. --- Conflict of interest statement None declared.

This study was designed to evaluate potential preventive effects of a cultural adaption of the Focus on Kids (FOK) program among Chinese adolescents through a quasi-experimental intervention trial in Nanjing, China. High school students were assigned to either experimental groups (n 5 140) or control groups (n 5 164) by schools (with three schools in each condition). The participants completed a confidential questionnaire at baseline and 6-month postintervention with a follow-up rate of 94.4% (287 of 304). The outcome measures included HIV knowledge, HIV-related perceptions based on the protection motivation theory, stigmatizing attitude toward people living with HIV/ AIDS (PLWHA), intentions of health-related risk behaviors and sexual intercourse in the previous 6 months. Results showed a significant intervention effect at 6-month post-intervention in increasing HIV knowledge, decreasing perceptions of response cost associated with abstinence and reducing stigmatizing attitudes toward PLWHA, after controlling for key demographic characteristics and relevant baseline measures. Further mediation analysis suggested that HIV knowledge mediated the effect of intervention on stigma reduction. Findings from this study support the feasibility and initial efficacy of the cultural adaptation of FOK HIV prevention program among high school students in China.

INTRODUCTION A people communicate with one another through language. As members of society, individuals have their own perspectives on language . Sociolinguistics examines language in its social context. The study of language in its social context according to , necessitates the study of linguistic variation. A person's speech will vary based on the social context. This is known as stylistic variation ). In addition, speakers who differ in age, gender, social class, and ethnicity, for example, will interpret the address term differently, even in the same context. This is referred to as "social variation" . Each language reflects the social characteristics of its speaker or recipient . Furthermore, it illustrates their relationship. A society's use of address terms is one of the most important communication tools . Among the fundamental rules of address terms are social class, age, gender, occupation, marital status, politeness, and other factors ). The speaker uses an address term to refer to a conversation participant. The use of address terms depends on the relationship between the addresser and addressee, the social status of the individual involved in the conversation, as well as the context and purpose of the conversation . Meyerhoff confirms that a society's actual rules of address are as complex as the society itself. Due to the social context, someone may address the same person in different ways . When addressing, the speaker will typically use address terms to refer to each other during the conversation . The classification must also be considered by the speaker, which includes using names, intimate terms, kinship terms, respectful terms, and even mockeries . The term "address" is Deskripsi Bahasa, Volume 6 2023 | 51 inextricably linked to polite communication. Individuals must understand the language, culture, and social values of their society . Using terms similar to those used by the Sasak, they may be able to determine whether the utterance is polite or impolite. Throughout the day, the Sasak people use a variety of terms in various speech contexts. As a result, the Sasak people regard this as a sign of courtesy. To gain a deeper understanding of how people in Lombok communicate using these address terms, the researcher is interested in researching the address terms used on Lombok Island. This research will talk about how the native speakers of Sasak use the address terms in their daily conversation. This research falls under the broad category of linguistics. It is sociolinguistic research that investigates the relationship between language and society. The objective of this research is to examine the sociolinguistic phenomenon known as "address terms" as performed by the native speakers of the Sasak language. Furthermore, this research aims at identifying the types, functions, and social factors that influence the use of address terms by the native speakers of the Sasak language. --- METHOD This research employed a mix of descriptive, qualitative, and quantitative methods to describe a social phenomenon that occurs in the midst of society and is closely related to the address terms used by native Sasak speakers on Lombok island. Qualitative analysis was used to observe the phenomena in rich detail . Leavy claims that qualitative research can be described as an effective type of research that occurs in a natural setting that permits the researcher to improve a level of detail. In addition, this research used a qualitative design in order to get a deep understanding of the phenomena from the participants, whereas quantitative analysis in the form of numbers and percentages, on the other hand, was used to support the data analysis . Thus the results of this research are presented in both narrative and descriptive formats. The data displayed in this research are the results of classified participatory and non-participatory observations, in-depth interviews, and online questionnaires. Since the researcher is a native Sasak speaker, both participatory and non-participatory observations were chosen. The online questionnaire has been spread by social media, i.e., WhatsApp, Instagram, and Facebook. There were 145 respondents who participated in filling out the questionnaire. Only 121 of the 145 respondents fulfilled the criteria of being over the age of 12, native Sasak speakers, residents of Lombok Island, and active users of social media platforms such as WhatsApp, Instagram, and Facebook, and were representative enough to be used as data samples in this research. The researcher then conducted an interview by randomly selecting several respondents to explore the use of address terms by the native speakers of the Sasak language. In addition to online questionnaires with respondents who filled them out, the researcher also conducted interviews with local people and academics who had a broad understanding of Sasak culture, society, and language as the research informants. Finally, the researcher determines the types, functions, and social factors that influence how native Sasak speakers use address terms, as well as where these expressions originate and what they mean. As a native Sasak speaker, the author creates metalinguistic data containing address terms whose grammaticality and acceptability have been empirically tested with other native speakers. --- RESULT This research revealed three findings. First, there were six types of address terms employed by the native speakers of the Sasak language in this research. The six types were the new findings of the researcher during the research. However, the new types found still refer to the grand theory used in this research. Those types were classified into several patterns of address terms. The patterns of address terms found in this research are nobility pattern, general pattern, intimacy pattern, borrowing pattern, kinship pattern, religious pattern, cultural pattern, and personal pronoun pattern. Second, native speakers of the Sasak language performed four functions of address. They were to show intimacy, show power differentials, reflect identity, and show politeness. Third, this research identified five of six social factors that influence native Sasak speakers' use of specific types of address terms. The five social factors were social status, age, family relationship, occupational hierarchy, and degree of intimacy. The findings from this research can be broken down into the following bullet points: --- The Types of Address Terms --- Figure 1. The Types of Address Terms in Sasak Language Based on the above-described polarization of the address system employed by native Sasak speakers, it can be broken down as follows: --- The Function of Address Terms --- Diagram 1 The Functions of Address Terms in Sasak Language The diagram above shows the functions of the address term used by the native speakers of the Sasak language. The researcher found four of five functions of address terms based on the grand theory used in this research. They are to attract people's attention, to demonstrate politeness, to show intimacy, to show power differentials, and to reflect identity. The first dominant function of the address term used by the native speakers of the Sasak language was to show politeness with 44%, followed by showing intimacy with percentage of 25%, reflecting identity 19%, and showing power differential 11%. The last function of the address term was to attract people attention with 0%. --- Degree of Intimacy --- The Social Factors Affecting the Use of Address Terms --- Diagram 2 The Social Factors of Address Terms in Sasak Language In communication, individuals address one another in various ways. The sort of way in which individuals address one another varies depending on the formality or informality of the occasion. Numerous factors influence how individuals use address terms. The diagram above shows the social factors affecting the use of address terms by the native speakers of the Sasak language. There were five of six social factors found by the researcher that can be described as follows: The most dominant factor affecting the use of address terms in Sasak is the degree of intimacy. This factor appears 44 times in the questionnaire given to the respondents, with a total percentage of 36%. Other social factors are then followed by social status and family relationship . And the least social factor is gender, with 0 responses from the respondents. --- DISCUSSIONS This section has three subsections. The first section discusses the various types of address terms; the second section discusses the various functions of address terms; and the third section discusses the social factors that influence how native Sasak speakers employ certain types of address terms. Based on the collected data, the researcher discovered that the manner in which native Sasak speakers employ address terms is largely consistent with address term theories. This indicates that the utterances clearly demonstrate the phenomenon of Sasak address terms. In this research, the researcher discovered new patterns in the Sasak language's use of address terms. However, the functions and social factors that influence the use of address terms in the Sasak language are not significantly distinct from the researcher's grand theory. --- The Types of Address Terms Based on the table presented in the research findings of the types of address terms above, the researcher found eight types of address terms used by the native speakers of the Sasak language in their daily conversation. For a more in-depth explanation, the types of address terms are then classified into their specifications as follows: The first type of address term is "Nobility Pattern." This first pattern is associated with the terms used for the aristocratic families of the Sasak people. The researcher divides this pattern into two groups based on how it is used, specifically how the native Sasak speakers refer to "Noble Man" and "Noble Woman." The address terms used by the native speakers of the Sasak language for noble man are 'mamiq' /mamiʔ/; 'nune' /nunɘ/; etc,. 'Mamiq' /mamiʔ/ is an address used for a father and 'nune' /nunɘ/ is used for a son. 'Niniq' /niniʔ/; 'emboq' /ɘmbok/; 'dende' /dendɘ/; and 'uling' /uliŋ/ are terms used for noble woman. 'Niniq' /niniʔ/ is a term for a mother; 'emboq' /ɘmbok/ is a term for an older sister; 'dende' /dendɘ/ is a term for a girl's favorite unmarried child; and 'uling' /uliŋ/ is a term for a child still in his teens. The second type of address term is "General Pattern," which is divided into three categories: for Sasakness men, women, and both men and women . This pattern is used in general. The native speakers of the Sasak language use the word 'bajang' /bajaŋ/ for man and 'dedare' /dɘdarɘ/ for woman. And for both man and woman , the words 'enges' /eŋɘs/; 'semeton' /sɘmɘton/mɘton/; and 'batur' /batur/ are used. The word 'bajang' /bajaŋ/ is used for unmarried Sasak men and the word Muh. Gufron Rajabul Deskripsi Bahasa, Volume 6 2023 | 55 'dedare' /dɘdarɘ/ is used for unmarried Sasak women. Furthermore, the researchers discovered three terms used for both men and women: 'enges' /eŋɘs/, a term used for both male and female children; 'semeton' /sɘmɘton/mɘton/, used for both male and female relatives; and 'batur' /batur/, used for both male and female friends. The third type is "Intimacy Pattern." This pattern represents the level of proximity between Sasak speakers, which is then specified into four specifications. The first specification is "Physical Condition," which refers to the words 'bulet' /bulɘt/, the physical condition of a person with a round face; 'kentung' /kɘntuŋ/, someone with a big belly; 'tepos' /tepos/, someone with a thin ass; etc. The second is "Abbreviation," which is an abbreviation of the name of the person being referred to. The address terms found in this pattern are: 'Inok' /inok/, which comes from the word Aminah; 'Komeng' /komeng/, which originates in the word Komaruddin; 'Bitok' /bitok/, which is derived from the word Rabitah; etc. The third is "Psychological Character," which is a description of the psychological character of the person being referred to, such as the words 'bencong' /bencoŋ/, a man who behaves like a woman; 'bengal' /bɘŋal/, a person who behaves intransigently and refuses to heed the counsel of others; 'lemot' /lɘmot/, a person who is slow in thinking and acting; etc. The final specification in this pattern is "Pet Name," which is a person's character that resembles the character of an animal. The words found in this pattern are 'basong' /basoŋ/ or dog; 'godek' /godek/ or monkey; 'ujat' /ujat/ or weasel; etc. The fourth type is "Borrowing Pattern," a borrowing term from another language. The borrowed language found in part comes from English and Indonesian. This pattern then specified into address terms for man, woman, and both man and woman . For men, the words 'brow' /bro/; 'brad' /brad/; 'brodi' /brodi/ are used, while for women, the words 'sist' /sist/ and 'ayang' /ayaŋ/ are used. And there are two words used for both man and woman, i.e. 'bestie' /besti/ and 'geng' /geŋ/. The words 'brow' /bro/; 'brad' /brad/; 'brodi' /brodi/ are all derived from the English word "brother." 'Sist' /sist/ is an English word which means "sister", whereas 'ayang' /ayaŋ/ is an Indonesian word "Sayang" which means "dear." These two words, 'bestie' /besti/ and 'geng' /geŋ/, originate in English. The word /bestie/ refers to best friends, and the word /geng/ refers to "genk" or close friends in one circle. The fifth type is the "Kinship Pattern," which is a set of address terms based on the speaker's kinship aspect, . This pattern is specified into three specifications, i.e. for man, woman, and for both man and woman . The words found as the address terms for man are 'terune' /tɘrunɘ/; 'amaq' /amaʔ/; 'mamiq' /mamiʔ/; 'tuaq' /tuaʔ/; 'amaq rari' /amaʔ rari/; 'niniq laki' /niniʔ laki/. And the address terms used for woman are 'dedare' /dɘdarɘ/; 'inaq' /inaʔ/; 'meme' /meme/; 'mamaq' /mamaʔ/; 'saiq' /saiʔ/; 'inaq rari' /inaʔ rari/; 'niniq bini' /niniʔ bini/. And for both man and woman are 'niniq' /niniʔ/; 'papuq' /papuʔ/; 'baloq' /baloʔ/; 'anak' /anak/; 'bije' /bijɘ/; 'bije jari' /bijɘ jari/; 'baiq' /baɨ'/; 'ruan' /ruan/duan/nakɘn/; 'pisaq' /pisaʔ/. The word 'terune' /tɘrunɘ/ refers to unmarried son; 'amaq' /amaʔ/ refers to father; 'mamiq' /mamiʔ/ refers to a man who has completed the pilgrimage or father of noble descent; 'tuaq' /tuaʔ/ refers to uncle or father or morther's younger brother; 'amaq rari' /amaʔ rari/ refers to father or mother's older brother; 'niniq laki' /niniʔ laki/ refers to grand father. The word 'dedare' /dɘdarɘ/ refers to an unmarried daughter; 'inaq' /inaʔ/ refers to mother; 'meme' /meme/ refers to mother of noble descent; 'mamaq' /mamaʔ/ refers to mother; 'saiq' /saiʔ/ refers to aunty or father or mother's younger sister; 'inaq rari' /inaʔ rari/ refers to father or mother's older sister; 'niniq bini' /niniʔ bini/ refers to grand mother. The word 'niniq' /niniʔ/ refers to grand parents of noble descent man and woman; 'papuq' /papuʔ/ refers to grand parents man and woman; 'baloq' /baloʔ/ refers to grand-grand parents; 'anak' /anak/ refers to children; 'bije' /bijɘ/ refers to honorific term used for children; 'bije jari' /bijɘ jari/ refers to children with a plural number or more than one; baiq'' /baɨ'/ refers to a pet call for both boys and girls; 'ruan' /ruan/duan/nakɘn/ refers to niece or nehew; 'pisaq' /pisaʔ/ refers to cousin. The sixth type is "Religious Pattern." Considering that 87% of the population of the island of Lombok is Muslim, the address terms in the Sasak language are not far from the concept of religion. Thus, address terms of this type refer to Arabic. The words discovered that the native Sasak speakers use as address terms are 'tuan guru' /tuan guru/; 'guru' /guru/; 'kiyai' /kiai/; 'ustaz-ustazah' /ustaz/ah/; 'mamiq' /mamiʔ/. The word 'uan guru' /tuan guru/ refers to a person who has been confirmed by society as having a high level of religiosity, both in terms of understanding religion and practicing its teachings; 'guru' /guru/ refers to a teacher who teaches religious education informally in the midst of society; 'kiyai' /kiai/ refers to religious figures who serve as role models by the community; 'ustaz-Deskripsi Bahasa, Volume 6 2023 | 56 ustazah' /ustaz/ah/ refers to religious teacher who became a caretaker at the pesantren; 'mamiq' /mamiʔ/ refers to a man who has completed the pilgrimage in the holy city of Mecca. The seventh type is "Cultural Pattern." This pattern is related to terms referring to cultural aspects. Every language is inseparable from the culture of its people, including the Sasak language and culture. Therefore, the Sasak have a way of addressing people that comes from their culture and has been around for generations. The words commonly used by the native speakers of the Sasak language in this pattern are 'pekasih' /pɘkasih/; 'ran' /ran/; 'pemangku' /pɘmaŋku/maŋku/jɘro/; 'inen kemeras' /inɘn kɘmɘras/; 'keliang' /kɘliaŋ/. The word 'pekasih' /pɘkasih/ refers to a person appointed by the community and administratively approved by the village chief who is responsible for managing irrigation and irrigating the rice fields of the residents; 'ran' /ran/ refers to a person entrusted by the community to regulate consumption matters during traditional celebrations; 'pemangku' /pɘmaŋku/maŋku/jɘro/ typically refers to a male individual who possesses an understanding of local customs and traditions and fits the traditional description; 'inen kemeras' /inɘn kɘmɘras/ refers to a person trusted by the community who is in charge of arranging food during traditional celebrations, and generally, this role is played by a woman; and 'keliang' /kɘliaŋ/ refers to a community leader who is administratively registered as an assistant to the village head, but whose figure is recognized by the local community. And the last type is "Personal Pronoun Pattern." This pattern refers to the use of pronouns in the first, second, and third person both in the form of singular and plural pronouns. In each level of Sasak speech, this personal pronoun pattern has its own different term. This pattern is then classified based on the speech level of the Sasak community, i.e. the Sasak language 'aoq-ape' /aoq-apɘ/ , 'tiang-enggih' /tiaŋ-eŋgih/ , and 'kaji-meran' /kaji-mɘran/ . --- The Function of Address Terms One of the primary functions of address terms is to attract peoples' attention. This is also consistent with the behavior of native Sasak speakers, who use address terms to attract the attention of others in their daily communication activities, whether to call the other person, to make themselves the center of attention, or to prove their existence in society during a conversation. This can be done by anyone, regardless of social standing, age, or gender, because "to attract people's attention" is not a politeness marker. Consequently, anyone can utilize this function for communication purposes. In spite of this, the researchers did not find any respondents using this function. Politeness is defined by as a sociocultural phenomenon that implies respect and consideration for others in interpersonal interaction. This is a distinctive feature of the language in use. Regarding politeness assume that social honorifics are "words and phrases used for addressing." Usually, terms or forms of address accompany a person to indicate their status, class, rank, or position within a particular community or society. The Sasak language has a level of speech used to express respect for social honorifics. There are three speech levels in the Sasak language: 'aoq-ape' /aoq-apɘ/ , 'tiangenggih' /tiaŋ-eŋgih/ , and 'kaji-meran' /kaji-mɘran/ . In the Sasak community, the tiaŋeŋgih and kaji-mɘran speech levels are used to show respect for social honorifics. And the aoq-apɘ speech level is used to show solidarity. To speak politely, people must understand a society's social values. Choosing appropriate addressing terms to call someone can demonstrate politeness. In social situations, intimacy plays a significant role in how we interact with others . Language encodes social information about intimacy through both overt and subtle cues . Similarly, as native Sasak speakers choose the topic of conversation, phrasing, and markers that relate the speaker to the world, the Sasak language provides multiple means of conveying intimacy in a social context. Similar to how social status and power are constructed and expressed, native Sasak speakers negotiate intimacy in language to fulfill fundamental and strategic needs while respecting social norms about appropriate intimacy. The function of address terms to show intimacy is generally used by the Sasak people who already have closeness-both biological closeness in one family, sociological closeness in one area, language and ethnicity, and psychological closeness in a certain circle. Deskripsi Bahasa, Volume 6 2023 | 57 Language has the potential to wield tremendous power. One way is through the use of address terms . Those at the top of the social hierarchy tend to use broader terms than those at the bottom. In this case, one of the functions of addressing terms in a society with multiple social hierarchies is to show power differences. This is then in line with the hypothesis put forward by Robinson that there are differences in how people address each other, especially individuals who have accomplished achievements in life. In such societies, people may use simple ways to address each other. But in a society where status is important, like in the Sasak royal family, people tend to use different ways to address each other. Another hypothesis proposed by in line with the function of showing power differentials in address terms is that, in those societies in which a person's status derives from his or her achievements, few distinctions in address are made. In these kinds of societies, people may only use one basic way to address each other. They use other ways to show the different kinds of relationships that we have to assume still exist. However, we are much more likely to find sets of finely graded address terms in societies where status is ascribed, i.e., derived from birth into a particular social group. Such sets reflect those societies' social structures. The last address term's function is to reflect identity. Social identity can be activated through salience. Salience refers to the characteristics that make someone easily identifiable by others, whether they are from the same or different social groups. In this case, the salience manifested itself in the form of address terms. Different address terms can imply a sense of belonging to various social groups. These group-specific characteristics are used to project a specific identity to the outside world. "Sociolects" is another term in sociolinguistics for language use associated with specific social groups. Sociolect is a shortened form of "social" and "dialect." The term refers to language use that is exclusive to members of the same social group who share similar social factors, such as class, age, and occupation. In other words, reflecting social identity through the use of multiple address terms is also referred to as "sociolects" in sociolinguistics. --- The Social Factors Affecting the Use of Address Terms Some of the social factors that influence native speakers of the Sasak language in using address terms are as follows: In accordance with the researcher's findings regarding the use of address terms by native Sasak speakers, the degree of intimacy is the most significant factor. It will also influence individuals' selection of address terms. It is one of the indications of closeness, or at the very least, a desire for closeness. When addressing people who are close enough, the Sasak people who follow eastern culture use the person's last name or nickname. In the Sasak language, this refers to the use of a term called "jalekan." A pet name can also be used to express closeness. A person's status in life is another factor that can influence the use of specific address terms. In regions where Sasaks use social status, the proper title is used when addressing the superior. Furthermore, it is shown to superiors and strangers. This form of address denotes a power difference between the addressor and the addressee. Family relationships are also an intimacy factor that influences the use of address terms. However, the intimacy factor associated with family relationships in this case is related to those who are blood relatives. As a result, the intimacy mentioned in this case is due to familial or hereditary ties. Family relationships, particularly for native Sasak speakers on the island of Lombok, can influence the choice of address terms. When speakers are confronted with their families, the family factor has a significant impact on the address terms they use. In addition to the terms used in other languages, the Sasak people have special terms related to family relations in their address system. A person's language skills can be affected by age; the older a person is, the more words he masters, both in terms of his understanding of the language's structure and the number of words he masters. Furthermore, one of the social barriers that differentiates human groups is age. This human group will give rise to the emergence of a social dialect, which will give the group its own color. Age will divide society into three groups: children, youth, and adults. In terms of the speaker's age, the terms of the address can be seen from two perspectives: solidarity and politeness. Speakers of the same age group tend to use a more casual form of address in order to maintain solidarity. Speakers who are Muh. Gufron Rajabul Deskripsi Bahasa, Volume 6 2023 | 58 younger than their interlocutors will use narrower forms of terms to conform to language community norms or to be polite. The context of a person's workplace will also influence the type of address terms used. Occupational hierarchy greatly influences the way people address other people in their place of work. People who have higher occupational status will receive special terms, such as title and name or title only; in other words, the inferiors tend to use a narrower and more limited form of the address terms. Meanwhile, people with lower status will only receive names; in other words, superiors tend to use a broader and more informal form of the address terms. --- CONCLUSION Based on the results of the findings and discussions related to the address terms used by the native Sasak speakers above, the researcher draws a conclusion as follows. First, the types of address terms used by the native speakers of Sasak language classified into eight patterns, i.e. 1. nobility pattern; 2. general pattern; 3. intimacy pattern; 4. borrowing pattern; 5. kinship pattern; 6. religious pattern; 7. cultural pattern; 8. personal pronoun pattern. Secondly, the functions of the address terms used by the native speakers of Sasak language are 1. to show intimacy; 2. to attract people attention; 3. to show politeness; 4. to reflect identity; and 5. to show power differential. And the last, the social factors affecting the use of address terms in Sasak language are affected by 1. social status; 2. age; 3. family relationship; 4. occupational hierarchy; and 5. degree of intimacy. --- 2006 ). An Introduction to Sociolinguistics . USA: Blackwell Pub.

This research falls under the broad category of linguistics, i.e., sociolinguistics, which investigates the relationship between language and society. The objective of this research is to examine the sociolinguistic phenomenon known as "address terms" as performed by the native speakers of the Sasak language. This research employed a mix of descriptive, qualitative, and quantitative methods to describe a social phenomenon that occurs in the midst of society and is closely related to the address terms used by native Sasak speakers on Lombok Island. The data displayed in this research are the results of classified participatory and nonparticipatory observations, in-depth interviews, and online questionnaires. Based on the results of the findings and discussions, the researcher found several conditions. First, the address terms of native Sasak speakers are divided into eight patterns: 1. the nobility pattern; 2. the general pattern; 3. the intimacy pattern; 4. the borrowing pattern; 5. the kinship pattern; 6. the religious pattern; 7. the cultural pattern; and 8. the personal pronoun pattern. Secondly, the address terms serve the following functions: 1. to demonstrate intimacy; 2. to draw attention; 3. to demonstrate politeness; 4. to reflect identity; and 5. to demonstrate power differential. And last, the social factors affecting the use of address terms are: 1. social status; 2. age; 3. family relationship; 4. occupational hierarchy; and 5. degree of intimacy.

not necessarily appropriate for adolescents due to their reduced reasoning capacity and the developmental tasks associated with adolescence including identity and reputation formation and increased autonomy, independence, self-esteem and confidence [3]. The focus of this paper is on how to best respond therapeutically to problematic use of substances by adolescents. There is no agreed universal definition of substance abuse and the terminology used varies and includes terms such as substance use, abuse, misuse, harmful use, hazardous use, substance dependence and addiction. At times, the definitions of these terms are ambiguous creating confusion [4]. For instance, in the latest edition of the Diagnostic and Statistical Manual the American Psychiatric Association uses the term substance abuse [5]. However, in the International Classification of Diseases the preferred terminology of the World Health Organisation is "harmful use" or "hazardous use". For the purpose of this study substance use is the preferred term and it encompasses all types of drug use [6]. The WHO considers term such as abuse to be disapproving language with the Australian government adopting the language of substance use to support a non-judgmental approach to assist people to disclose usage in a supported environment and to seek appropriate assistance [7]. Therapeutic intervention was defined as an intervention to enhance an adolescent's wellbeing. This may be within a context of voluntary help-seeking by the adolescent or in situations where help has not been actively sought by the adolescent and be provided in person or online [8]. Various explanatory models of drug use exist in alcohol and other drug services including disease, moral and social approaches. Service providers are from diverse backgrounds and use varied treatment approaches that are provided in residential and community settings [9]. The context of Australia was chosen for this scoping review by the funding body who is a not-for-profit provider of alcohol and other drug rehabilitation services to Australian adolescents. This organisation wanted to know what are considered to the most effective therapeutic interventions for Australian adolescents 12 to 17 years of age who are at high risk of drug-related harms due to their substance use. They were particularly interested in what works in the Australian context noting the political, economic and social differences globally. This approach is supported by the joint United Nations/ World Health Organisation SAFER: A Safer World Free from Alcohol Related Harms initiative that focuses on in-country action within a global context [10]. The focus on Australia was with the understanding that these Australian studies were located within the international literature. It is anticipated that other countries can also learn from a closer look at the Australian experience given that the types of services offered in Australia are similar to those in other countries around the world including motivational interviewing , cognitive behaviour therapy combined with other psycho-social, education and recreation interventions. --- Methods We used scoping review methodology to achieve our aim of providing a broad rapid overview of a research topic and to identify common themes, issues and gaps in the literature on the most effective therapeutic interventions with a minority of adolescents who have problematic substance use [11]. The review process followed the Cochrane approach and included: selection of search terms and databases, search of refereed and grey literature and hand searching, title and abstract screening, full text review and quality appraisals [12]. Scoping reviews include all relevant literature with the refereed literature consisting of both single studies as well as systematic reviews [13]. The literature was mapped, categorized and described to provide evidence of effective therapeutic intervention outcomes. --- Research question and definitions The aim was to answer the study question: 'What does the evidence in the Australian literature tell us about what are the most effective therapeutic interventions for adolescents, aged 12 to 17 years, using alcohol and/ or other drugs?' The current literature review expands the scope of previous reviews by looking at all reported effective therapeutic interventions for all substance use including both illicit and licit substances [14]. To the best of the authors' knowledge this is the first scoping review to consider the combination of all substances, misuse and abuse and effective therapeutic interventions for adolescents. --- Selection of studies The online search databases MEDLINE, EMBASE, APA PsycNet, EBSCO Host, Social Science Abstracts, SocIndex, Informit, Proquest Central, the Cochrane library databases and Google Scholar were chosen due to breadth and relevance to the topic. Targeted browsing was conducted of publications on national, state and territory government and non-government websites. Hand searching of bibliographies and alcohol and other drug training notes was also undertaken. Search terms included 'adolescent' or 'youth' or 'teenage' or 'young' and 'drug' or 'alcohol' or 'substance abuse' and 'recovery program' , or 'drug education' or 'intervention' , or 'treatment' and ' Australia' . The search date range was set from 2010 to 2018 with language set as English. This search time-frame was chosen so as to build upon knowledge gained from previous systematic reviews on this topic. Types of studies included in the review were metaanalyses and literature reviews, controlled experimental studies, before-and-after studies with no control group, observational studies, cohort studies and qualitative studies. The studies needed to provide evidence of the effectiveness of specific therapeutic interventions delivered to adolescents using alcohol and/or other drugs. --- Review of studies Two authors independently checked all of the studies by title, abstract and full text with a third author available for moderation to reduce researcher bias. The exclusion criteria at the initial screening stage resulted in the removal of papers that were duplicates, not an Australian study, a more recent version was available, published or produced before 2010, inadequate reporting of methods, not specific to adolescents not a therapeutic intervention or not specific to alcohol and other drugs. Duplicate removal included review of the individual studies and studies included in the systematic reviews. --- Data analysis Thematic analysis was used to interpret and categorise the data into therapeutic intervention categories according to intervention type and therapeutic outcomes [15]. The data were analysed and reported according to study design, year of study, type and length of therapeutic interventions, sample size, inclusion criteria, age of participants, gender and therapeutic outcomes. Two authors categorised the data independently and then jointly to present an accurate representation of the entire dataset. Multi-level synthesis was used to integrate the quantitative and qualitative study data [16]. --- Assessment of bias Quality assessments were conducted on all of the included studies to evaluate methodological strength and risk of bias, using the recommended validated tools suited to the particular type of study. The Cochrane Collaboration's Tool was used to assess controlled trials [17]; the Critical Appraisal Skills Program Qualitative Checklist was used to assess qualitative studies including aims, methodology, design, recruitment, data collection, relationship between researcher/s and participants, ethical issues, data analysis, findings and significance [18], and the Study Quality Assessment Tools from the National Heart, Lung and Blood Institute were used to assess systematic reviews and meta-analyses, cross-sectional and observation cohort studies [19]. Systematic reviews were assessed on the adequacy of the formulation of the research question, clarity of inclusion and exclusion criteria, search strategies, independent review by two or more researchers of abstracts and full-text, internal validity, listing of included studies and key features, and publication bias [19]. --- Results A total of 21 studies was included comprising 3,493 participants . Due to only studies on effective therapeutic interventions being included some substances, such as tobacco, were not present in the study findings. The search strategy revealed 2121 texts for the initial screening of title and abstract with 730 articles progressing to full text review . The final studies included were 17 experimental studies and 4 non-experimental studies. Most studies provided multiple interventions but did not evaluate the efficacy of all of these, thereby restricting the attribution of improved outcomes to a specific intervention. Studies were grouped according to focus of the intervention as individual [20][21][22][23][24][25][26][29][30][31][32][33][34][35][36][37][38][39][40][41]; family [20,22,[25][26][27][28]; organisational [20-22, 25-28, 34, 39, 40] and multiple interventions [20-22, 25, 26, 35, 40]. The following interventions were reported as producing effective therapeutic outcomes with further details of all studies provided in Table 1. --- Individual Individual interventions included counselling and mentoring. The combination of cognitive behaviour therapy , motivational interviewing and mindfulness delivered over 10 sessions was found to result in sustained improvements in anxiety and depression, coping skills and functioning with decreased substance use [29]. The addition of CBT and MI to standard care of case management and brief MI resulted in significant reductions in depression and cannabis use with sustained increases in motivation and socialisation [30]. The combined three strategies of BMI, coping skills training and psycho-education with the addition of personalised assessment feedback were found to be more effective than a brief assessment and general information only in reducing alcohol and substance use intake and psychological distress [31]. A range of focused psychological strategies over 5 sessions resulted in reduced psychological distress compared with other treatment and no treatment [23]. A median number of 3 counselling sessions delivered over a 2-year period resulted in a decrease in the frequency and amount of cannabis use and increased life satisfaction [36]. --- Family Family-based interventions included family, therapy and family counselling. A systematic review of familybased interventions for alcohol misuse and alcoholrelated harm in Indigenous communities found that family-based interventions led to positive effects in individual and family functioning and coping and decreased alcohol consumption [28]. --- Organisational One effective organisational intervention was continuing care and community integration in a hospital setting. A study in four emergency departments of usual care, compared with brief advice and a referral linkage to an external alcohol and other drug service, found a reduced number of mental health and AOD presentations in emergency departments for noninjecting drug use [39]. [20,25]. Bush adventure therapy combined with counselling and continuing care resulted in reduced substance use and self-harm, and improvements in wellbeing [22]. An observational study in a residential therapeutic community found individually tailored recreation, art therapy and vocational education to be more effective than journaling and encounter groups [35]. Validating relationships with family, peers and service providers was found to be the key to the success of a service that provided a range of interventions --- Multiple interventions --- Discussion This scoping review identified a range of individual, family, organisational and multiple combined interventions for working with adolescents using substances. The findings reveal the effectiveness of particular groupings of interventions in residential and after-care settings. CBT and MI were found to be effective together [37] and when combined with mindfulness [29], or psychoeducation, coping skills training and personalised assessment feedback [31] or case management [30]. Three of these were brief interventions between 2-3 sessions [29,31,37]. The study findings highlight important issues related to interventions with no evidence-base such as journaling, recreation and adventure activities, and encounter groups with adolescents. An intervention warranting further investigation is journaling. For instance, journaling was in a multiple intervention study [20] that produced significant outcomes. However, in another study journaling received a strong negative reaction from some adolescents [35]. Peer feedback encounter groups also warrant closer investigation as this same study found that a group with adolescents providing direct feedback to each other resulted in social ostracization [35]. Encounter groups are frequently used in adult residential substance use services. However, the use of these groups with adolescents requires further scrutiny due to adolescents developmental needs related to reasoning capacity, identity formation and relationships [3]. Other studies found groupwork to be beneficial [22,26,36]. The types of groups varied and were provided as part of a package of interventions. Building positive and affirming relationships with adolescents was considered essential for effective treatment outcomes. Notions of success were variable across the studies with improvement considered a success regardless of whether or not the adolescent completed the treatment program. The importance of continuing care was highlighted with some adolescents having multiple separate periods of engagement with a service/s over time. --- Future research, practice and policy considerations Further research and evaluation is required on all therapeutic interventions currently used with young people using substances. In particular, interventions that do not have an evidence-base for use with adolescents such as encounter groups and journaling require closer scrutiny. It is recommended that intervention costings information be provided in future studies to inform public health resource allocation decision-making. --- Conclusion The main finding of this scoping review is that there is currently no evidence base for some of the therapeutic interventions frequently provided to adolescents by alcohol and other drugs service providers. There is no evidence that services such as encounter groups, that are used widely in adult alcohol and other drugs services, are directly transferable to the adolescent population. This is particularly so due to the unique developmental stage and associated tasks at adolescence disrupted by substance use. Nonetheless, the studies examined in this scoping review, report a number of combined interventions that are considered effective. The lack of evidence for all of these interventions, when delivered in combination, hinders the ability to assess intervention specific benefits. --- Competing interests The authors declare that they have no competing interests. • fast, convenient online submission • thorough peer review by experienced researchers in your field --- • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year ---

Background: There are a variety of residential and community service models of therapeutic interventions for people using substances. The focus of much of the currently available research is on adult populations with relatively little known about effective therapeutic interventions for adolescents. The aim of this paper is to identify the most effective therapeutic interventions for Australian adolescents using substances by conducting a systematic scoping literature review.We followed the PRISMA guidelines to conduct a systematic scoping review that included searches of nine electronic databases (EMBASE, MEDLINE, EBSCO Host, APA PsycNet, SocIndex, Social Science Abstracts, Proquest Central Informit) and grey literature searches of government department and alcohol and other drugs peak body and service provider websites, Google Scholar and the Cochrane library. Results: A total of 21 studies were identified. These studies included biological, psychological, social and technological therapeutic interventions targeted at different population groups and different substances. The review findings are limited and should considered with caution due to the inability to disaggregate the combinations of interventions provided and the low quality of most of the studies included.This scoping review highlights the paucity of quality research on effective therapeutic interventions for Australian adolescents using substances. This is primarily due to the available studies not controlling for all of the therapeutic interventions provided. While there is an evidence-base for some of these interventions, others such as encounter groups and journaling require further and more substantive research for use with adolescents. This is necessary to enable informed service design and delivery decision-making and fiscal accountability.

A. Introduction Sex education is an integral part of individual development that involves biological aspects and social, emotional, and psychological dimensions. 1 In facing the complexity of modern society, sex education with gender-sensitive character is an urgent need. 2 Gender sensitivity is central to ensuring that each component of the sex education model is equally accessible and understandable to all individuals, regardless of sex or gender identity. 3 Gender-sensitive sex education not only refers to the recognition of biological differences but also teaches a deep understanding of gender diversity and how to build healthy and respectful relationships between different gender identities. 4 Providing information on sexual matters is essential given that adolescents are at an active sexual potential, as it relates to hormone-influenced sexual urges, and often do not have enough information about their sexual activity. 5 Of course, this will be very dangerous for the development of the adolescent's soul if he does not have the proper knowledge and information. The fact shows that most of our adolescents do not know the impact of their sexual behavior; often, adolescents are too immature to have sexual intercourse, especially if they have to bear the risks of sexual intercourse. 6 In general, sexual education is clear and correct information about the issue of human sexuality, which includes the process of conception, pregnancy until birth, sexual behavior, sexual relations, and aspects of health, psychology, __________ 1 Indah Wigati, "The Social Aspects of Gender-Responsiveness in Schools," Sawwa: Jurnal Studi Gender 14, no. 2 : 147-62, https://doi.org/10.21580/sa.v14i2.4523. 2 and society. 7 The issue of sexual education should be related to the norms of society, what is forbidden, what is practiced, and how to do it without violating the rules of society. Sexual education is a way of teaching or education that can help young people deal with life problems that stem from sexual urges. 8 Thus, sexual education intends to explain everything related to sex and sexuality in a reasonable form. According to Singgih D. Gunarsa, the delivery of sexual education material should be given early when the child has begun to ask about sex differences between himself and others, continuously and gradually adjusting to the needs and age of the child and the child's capacity to catch it. 9 Initiating conversations about sexuality should begin at a young age through sex education within the family. Sex should not be perceived as a taboo subject but rather as a natural part of human life in reasonable proportions. If sex remains taboo, it may lead to misunderstandings and hidden sexual problems. Consequently, various sexual and psychological issues may arise. In this context, ideally, sexual education should be first provided by parents at home, considering that parents are the ones who know their children's situation best. It is realized through the parents' lifestyle within the family as a united married couple. Sexual education is best delivered in a warm, open, heart-to-heart atmosphere between parents and children. The difficulty arises when parents lack adequate knowledge , leading to less openness and a tendency not to provide a comprehensive understanding of their children's sexual issues. Consequently, children may receive incomplete information about sex. 10 In this context, the school environment is expected to become a platform that supports the implementation of a sex education model with a gendersensitive character. This can be achieved by creating an inclusive atmosphere where every student feels valued regardless of gender or gender identity. Sex __________ education based on character and responsiveness to gender will be more effective when aligned with the ethical and moral values taught in the school environment. However, there is still a limited understanding of the importance of sexual education for adolescents, especially when it comes to implementation in the school environment. Furthermore, another influencing factor is the strong presence of patriarchal culture deeply rooted in society. Sexuality is still perceived as solely a women's issue. However, sexuality is a concept that needs to be understood by both men and women collectively. In other words, sex education should be based on gender equality. No double standards should be applied. For example, unmarried women who are not virgins are labeled as tainted, but unmarried men with the same experience are considered natural and normal. Sex workers are seen as immoral, but this judgment does not apply to the men who are their clients. These double standards are rooted in all aspects of life, including law, economy, education, media, and family. These aspects should not be the essence of a gender-sensitive sex education model. In delivering the material, it should not corner one gender. Instead, it must instill an understanding of sexuality as a shared responsibility between men and women so that blame is not unfairly assigned to one party if unwanted things happen, such as promiscuity or premarital sex. Sex education is expected to be gender-sensitive, empowering adolescent boys with the ability to respect the rights of the opposite sex and empowering adolescent girls to assert their rights more resiliently. It is also essential to create a comfortable atmosphere for both genders in implementing sex education through a dialogical and communicative environment, without comments that could provoke disturbances or responses that lead to harassment. Socialization of women's rights related to the gender concept is also crucial so that awareness of their position and role in deciding their reproductive rights develops gradually. 11 In addition, the role of educators and educational staff is crucial in integrating this sex education model into the school curriculum. They must be actively involved in providing a deep understanding of gender diversity, teaching healthy interpersonal skills, and creating space for open and __________ 11 Nadila Dwi Adika and Farida Rahmawati, "Analisis Indikator Ketimpangan Gender dan Relevansinya terhadap Pertumbuhan Ekonomi Inklusif di Indonesia," Ecoplan 4, no. 2 : 151-62, https://doi.org/10.20527/ecoplan.v4i2.400. educational dialogue on sexuality issues. Many sex education models have been studied, but no studies have explored gender-based sex sensitivity education models. Moreover, the model applied results from analyzing parties' opinions in one school. In that case, the model used follows the expectations and characteristics of all existing parties. Various studies have proven that dating has become a trend for teenagers today. 12 Different educational designs on the negative impact of dating or extramarital sex education have been attempted by various researchers. No research has yet raised the education model taken from the opinions of high school educators, especially those based on gender justice, because the sex education model for adolescents must be differentiated for adolescent boys and adolescent girls. On the other hand, to initiate a sex education model that not only prioritizes aspects of biological information but also pays attention to character values and gender sensitivity. Unlike several previous research studies, this article tries to reveal/explain how the gender-sensitive character education model is implemented at SMA Harapan Mandiri, Medan North Sumatra. --- B. Method This research employs a qualitative method with a descriptive approach and is conducted within the environment of Harapan Mandiri High School. The informants included six teachers. A notepad denotes each informant in the analysis with NVivo 12 Pro. The choice of qualitative method is used to provide a deep understanding of the complexity of the gender-sensitive character education phenomenon in this school context. 13 The descriptive approach is chosen to thoroughly document and analyze data without attempting to measure variables quantitatively. 14 __________ 12 Heni Aryati, Linda Suwarni, and Abduh Ridha, "Paparan Pornografi, Sosial Budaya, dan Peran Orang Tua dalam Perilaku Berpacaran Remaja di Kabupaten Sekadau Provinsi Kalimantan Barat," Jurnal Kesmas Khatulistiwa 6, no. 3 : 127-36, https://doi.org/10.29406/jkmk.v6i3.1775; Emi Marfuqoh and Evi Martha, "Determinan Perilaku Seksual dalam Berpacaran pada Remaja di Indonesia," Jukema 6, no. 2 : 80-87, https://doi.org/10.37598/jukema.v6i2.898. 13 Prasetya, "Karakteristik Budaya Sekolah di SMP Negeri 15 Yogyakarta sebagai Pelaksana Program Sekolah Responsif Gender." 14 Utomo and Ekowati, "Pendidikan Responsif Gender bagi Anak Usia Dini." Various data collection techniques will be employed, including interviews with relevant parties such as teachers as the main informant. The interview data was then validated by triangulation with complementary documents and interviews from students and school staff at SMA Harapan Mandiri. These interviews will provide insights into their views and experiences regarding gender-sensitive character education in the school. Observations be conducted to observe the practices of sex education directly and the dynamics of interactions within the classroom or school activities. Data analysis in this research will involve three main stages: reduction, presentation, and conclusion drawing. 15 These stages systematically explore meanings and provide a deeper understanding of implementing gendersensitive character education in SMA Harapan Mandiri. First, the data reduction stage will involve organizing, simplifying, and translating raw data from interviews, observations, and document analysis. This process will help identify patterns of findings, group relevant information, and determine the main themes related to sex education in the school environment. After the reduction stage, the processed data will be presented clearly and comprehensively. Presentation of this data may involve using tables, graphs, or descriptive narratives to provide a more visual and easily understandable overview of the findings from each data collection technique. This approach aims to explain and interpret the findings so that readers can access them more effectively. The NVivo 12 Pro map assists in data interpretation. The map contains parent and child nodes to interpret the grouping of perceptions from teachers and students. Teachers are given two initials and their ages, and students are given class names and the order of attendance in each class. Lastly, the conclusion stage will involve a profound interpretation of the data analysis results. Conclusions be drawn by detailing key findings, relationships between findings, and practical implications that may arise from this research. This process will provide a broader understanding of the extent to which the model of gender-sensitive character education can be implemented at SMA Harapan Mandiri and its potential impact on the school environment. --- C. Results Gender-sensitive character education has become a primary focus in efforts to create an inclusive and supportive educational environment in schools, including at SMA Harapan Mandiri. As a progressive educational institution, SMA Harapan Mandiri has taken significant steps to strengthen gender-sensitive character education models. Here are some steps that SMA Harapan Mandiri has taken in designing and implementing an inclusive and responsive sex education model that embraces gender diversity . Figure 1 shows teachers' responses at SMA Harapan Mandiri regarding things that need to be implemented in implementing a sex education model based on gender equality. It includes integration in the curriculum, teacher training, building an inclusive school environment, adopting an antidiscrimination policy, respect for diversity, parent and guardian involvement, and information resources. The positive impact expected in this study is that SMA Harapan Mandiri becomes a place that can improve students' mindsets by implementing responsive-based sex education. Through this application, students will become more literate in understanding sexual differences and how to respect the opposite sex. --- Integration in the Curriculum At SMA Harapan Mandiri, integrating a gender-sensitive character education model into the curriculum is essential to creating an inclusive and supportive educational environment. This curriculum not only addresses the biological aspects of sexuality but also encompasses character values and awareness of gender diversity. The learning materials are designed to reflect the complexity of sexual and gender identities, providing a deeper understanding and stimulating critical thinking. For instance, a concrete example can be found in the subject of sociology. The topic of interpersonal relationships is not solely centered on the biological or anatomical aspects of the body but also addresses values such as mutual respect, supporting gender equality, and appreciating individual differences. Teachers can utilize case studies or discussion materials relevant to students' daily lives at SMA Harapan Mandiri to encourage reflection and deeper dialogue. Moreover, literature integrated into the curriculum in the Indonesian Language subject can be carefully selected to include works that introduce gender-aware characters and present stories that reinforce inclusive values. 16 By using books or stories that depict gender diversity, students can understand the realities of others' lives and develop empathy. --- Teacher Training To create an educational environment supportive of the gender-sensitive character education model, SMA Harapan Mandiri acknowledges that teacher training is key to success. This training is designed to provide educators with a deep understanding of character values, gender equality, and sexual diversity, enabling them to support and guide students inclusively. Teacher training at SMA Harapan Mandiri involves workshops or seminars featuring competent experts in sexual education and psychology who specialize in gender and sexuality. The training content may include age-appropriate teaching approaches, understanding the gender identity framework, and communication strategies that support and motivate students. 17 __________ 16 Dini Damayanti and Fitria Rismaningtyas, "Pendidikan Berbasis Responsif Gender sebagai Upaya Meruntuhkan Segregasi Gender," Jurnal Analisa Sosiologi 10 : 60-75, https://doi.org/10.20961/jas.v10i0.47639. 17 Wiarsih and Astawan, "Pendidikan Responsif Gender dan Kesehatan Reproduksi dalam Proses Pembelajaran." --- Building an Inclusive School Environment Creating a school environment that supports gender equality and respects diverse identities has been implemented at SMA Harapan Mandiri. Strategies to establish an inclusive school environment in the context of a gender-sensitive character education model involve several key approaches. One applied approach is creating a physical and social environment that supports gender equality and respects diverse identities. Based on observation and interviews, SMA Harapan Mandiri has implemented providing accessible health facilities for all students regardless of their gender identity. It aims to offer an equal and non-discriminatory learning experience for every student at SMA Harapan Mandiri. 18 Moreover, the school actively creates extracurricular programs or social activities that support empowerment and social integration for students with various gender identities. Examples of activities may include discussion groups or clubs addressing gender issues, supporting the development of interpersonal skills, and enhancing understanding and respect for one another. --- Adopt an Anti-Discrimination Policy In SMA Harapan Mandiri, adopting an anti-discrimination policy is critical in creating an educational environment that supports the gender-sensitive character education model. This policy is designed to provide a clear legal and normative foundation prohibiting all forms of gender-based discrimination in the school environment. One implemented measure by SMA Harapan Mandiri is formulating a school policy explicitly stating that no student or staff member shall be discriminated against based on their gender identity or gender expression. It can also involve clearly defining behaviors considered as discrimination, such as verbal harassment, intimidation, or denial of access to school facilities. 19 The significance of this policy lies not only in establishing norms but also inconsistent implementation and enforcement. SMA Harapan Mandiri can provide safe and confidential channels for complaints from students and staff __________ experiencing discrimination. Complaint handling procedures must be applied fairly and transparently to ensure compliance with the anti-discrimination policy. Moreover, SMA Harapan Mandiri incorporates anti-discrimination policy materials into regular training programs for staff and teachers. It ensures that the entire school community understands the consequences of policy violations and can work together to create a safe and inclusive environment.20 --- Respect for Diversity SMA Harapan Mandiri embraces activating appreciation for diversity as a key step in supporting the gender-sensitive character education model. One implemented approach is giving awards and recognition to individuals or groups who have positively contributed to creating an inclusive environment and sustaining gender diversity. An example of this initiative could involve periodic awards for students or staff who have shown commitment to gender equality values. These awards could include categories such as "Gender Equality Advocate" or "Inclusion Leader," setting positive examples and inspiring the entire school community. SMA Harapan Mandiri also organizes special events or activities to celebrate diversity. For instance, they hosted a Cultural Week celebration where students could showcase art, performances, or other projects reflecting diversity and gender equality. The success of these events can be recognized through certificates or special appreciation from the school. Furthermore, organizing diversity awards can involve participating actively in competitions or collaborative projects promoting inclusive values. SMA Harapan Mandiri holds essay writing competitions, art contests, or research projects addressing gender equality issues. The awards given not only cover academic achievements but also positive contributions to the school's cultural change. --- Education on the Negative Impact of Dating on Teenagers Dating is a process that is considered a process of pouring out or expressing all the contents of one's heart between partners of the opposite sex __________ who care, love, and love each other. 21 Dating tends to occur since adolescence or school. In adolescence, contrasting processes of physical and sexual changes occur so that sexual attraction towards the opposite sex is quite large, and sexual drive also develops. 22 If this is not balanced with knowledge about reproductive health, it will encourage the potential for free sex. --- Parent and Guardian Involvement In advocating a gender-sensitive character education model, SMA Harapan Mandiri recognizes the crucial role of parents and guardians as primary partners in shaping students' attitudes and understanding. To achieve this, the school implements various strategies to encourage the active involvement of parents and guardians in creating an inclusive and supportive educational environment. One effort is organizing periodic meetings between the school and parents. These meetings focus not only on the academic development of children but also discuss the initiatives and sex education programs implemented at SMA Harapan Mandiri. Activities such as "Education Dialogues" provide a platform for parents to discuss, exchange views, and better understand the sex education taught at the school. 23 Additionally, SMA Harapan Mandiri ensures the availability of informational materials accessible to parents and guardians. They provide reading materials, brochures, or online guides explaining the goals and content of the gender-sensitive character education model. It helps parents understand the school's approach and provides more effective support at home. Schools can also involve parents in special educational events focusing on gender and sexuality issues. 24 One example is inviting expert speakers to conduct seminars or workshops for parents on supporting children in understanding their gender identity and strengthening open communication between parents and children. __________ 21 Khaufi and Hidayani, "Hubungan Sikap, Peran Orangtua, dan Peran Guru dengan Perilaku Remaja dalam Berpacaran." 22 Itma Annah, Wahidah Sukriani, and Irene Febriani, "Informasi Kesehatan Reproduksi terhadap Perilaku Berpacaran Remaja di Provinsi Kalimantan Tengah, Indonesia," Journal of Nursing and Public Health 10, no. 2 : 108-16, https://doi.org/10.37676/jnph.v10i2.3142. 23 Aryati, Suwarni, and Ridha, "Paparan Pornografi, Sosial Budaya, dan Peran Orang Tua dalam Perilaku Berpacaran Remaja di Kabupaten Sekadau Provinsi Kalimantan Barat." 24 Annah, Sukriani, and Febriani, "Informasi Kesehatan Reproduksi terhadap Perilaku Berpacaran Remaja di Provinsi Kalimantan Tengah, Indonesia." --- Information Resources SMA Harapan Mandiri has recognized the crucial role of information resources in supporting the implementation of a gender-sensitive character education model. By providing easy and diverse access to relevant information, the school establishes a strong knowledge foundation for the entire community to understand and respond to gender diversity issues. A concrete step taken by SMA Harapan Mandiri is establishing a library that focuses on literature supporting gender inclusivity values and sensitivity to gender equality. In this library, students, teachers, and parents can easily access books and other resources discussing topics related to gender identity, diversity, and sexual education. --- D. Discussion Awareness of the diversity of gender identities and sexual orientations is increasingly important, providing a platform for innovative research exploring models of sex education that are responsive to students' needs. 25 It is in line with the statement that schools play a crucial role in initiating and implementing gender-sensitive character education models. Integration into the curriculum at SMA Harapan Mandiri also involves the policy of developing modules or learning guides that include aspects of gender-sensitive character education. 26 These modules are designed considering the stages of students' development and provide space for open discussion and dialogue that supports a deep understanding of issues related to sexuality and gender identity. 27 Thus, integrating the gender-sensitive character education model in the curriculum at SMA Harapan Mandiri goes beyond providing information; it is more about shaping character and fostering a holistic understanding of gender diversity in the context of students' everyday lives. Furthermore, training may involve simulation sessions or role-playing to equip teachers with practical skills in addressing sensitive situations related to __________ 25 Fihris Fihris, "Pendidikan Wanita dalam Perspektif Kaum Feminis," Sawwa: Jurnal Studi Gender 10, no. 2 : 151-70, https://doi.org/10.21580/sa.v10i2.1430. 26 Wiarsih and Astawan, "Pendidikan Responsif Gender dan Kesehatan Reproduksi dalam Proses Pembelajaran." 27 Haryani and Nurhaeni, "Evaluasi Integrasi Nilai Gender pada Pendidikan Menengah ." sexuality and gender. 28 It can include managing inclusive class discussions, supporting students with questions or concerns related to gender, and creating a safe space for open dialogue. 29 Within this training framework, SMA Harapan Mandiri can provide case studies or concrete examples relevant to the students' realities in the school. This finding aligns with the study that discusses issues in the school environment, such as supporting students with questions or conflicts about their gender identity. 30 Moreover, teacher training at SMA Harapan Mandiri can also include a deep understanding of school policies that support gender equality and prevent discrimination. This finding aligns with the statement that teachers can be provided with knowledge and resources to identify and address discriminatory incidents and understand the importance of supporting gender diversity in all aspects of education. 31 The importance of the role of school staff is also emphasized in shaping an inclusive school environment. 32 SMA Harapan Mandiri provides specific training for administrative and security staff to ensure that every member of the school community is treated with respect and without discrimination. This aligns with implementation examples, including formulating behavior and ethics guidelines for all school staff to ensure a supportive and gender-sensitive attitude. 33 Establishing an inclusive environment at SMA Harapan Mandiri also involves active participation from students and parents. The school encourages students to form advocacy groups or forums supporting gender diversity. Involving parents in education programs and gender discussions is also a strategic step to create cross-generational support in realizing an inclusive school environment. With these measures, SMA Harapan Mandiri can create a school environment that not only provides gender-sensitive character education but also __________ 28 stimulates a social climate supporting the growth and development of every student, irrespective of their gender identity. The anti-discrimination policy in SMA Harapan Mandiri also includes prevention strategies, such as gender equality campaigns, anti-discrimination seminars, or other educational activities. For example, they organized awareness activities involving the entire school community to enhance understanding of the importance of respecting diversity and the negative impacts of discrimination. The importance of this anti-discrimination policy is further reinforced through the involvement of parents and guardians. 34 SMA Harapan Mandiri can hold regular meetings with parents to provide information about this policy and build their support in creating a school environment free from genderbased discrimination. With the adoption and strong implementation of an antidiscrimination policy, SMA Harapan Mandiri can establish a solid foundation to support the gender-sensitive character education model, ensuring that all members of the school community can learn and thrive in a safe, fair, and inclusive environment. 35 The recognition of diversity is also integrated into the school's assessment policies. One aspect is evaluating students' involvement in extracurricular activities or social projects supporting gender equality as a positive factor in assessing character and attitudes. Thus, SMA Harapan Mandiri provides tangible incentives and recognition for students actively contributing to creating an inclusive environment. Through these steps, SMA Harapan Mandiri can cultivate an appreciation for diversity as an integral part of the school's identity. By celebrating and acknowledging positive contributions to gender diversity, the school creates an environment where everyone feels valued and supported in their educational journey. 36 Knowledge about the negative impact of dating, which leads to casual sex, as is the current dating style of teenagers, demands that the environment be __________ 34 more proactive in preventing it. 37 The best prevention is through parental attention so that teenage children no longer feel like they lack love or a place to express all their problems. 38 Prevention is also expected from the school through education provided by teachers so that students become more aware of the negative potential of health and social aspects. 39 The importance of parental involvement is also reflected in the development of school policies, as stated in. 40 SMA Harapan Mandiri forms a committee or parent forum focusing on gender and sex education issues. 41 This committee can provide input, feedback, and serve as partners in designing and evaluating programs implemented at the school. Parental involvement at SMA Harapan Mandiri can also leverage technology, such as dedicated online platforms for parents. 42 It is in line with the opinion that discussion forums or online chat rooms can be used to address sensitive issues and provide mutual support among parents. 43 In line with this statement, this way, communication between the school and parents becomes more dynamic and responsive to the needs and expectations of parents regarding their children's sex education. 44 Through these continuous efforts, SMA Harapan Mandiri builds a strong cohesion between the school and families, creating an environment where gender-sensitive character education is not solely the school's responsibility but __________ a collective effort to support the holistic development of students. The information resources provided by the school not only include print materials but also accessible audiovisual content. By leveraging technology, SMA Harapan Mandiri offers educational videos, webinars, and other multimedia materials that help convey information engagingly and understandably for various levels of comprehension. The application of technology carried out by SMA Harapan Mandiri is in line with the research stated the importance of information resources is also reflected in the development of an inclusive school website. 45 This website serves as a channel for regular school information and a platform presenting informative articles, practical guides, and current news relevant to gender diversity issues. This provides open access for the entire school community to update their knowledge continually. 46 Furthermore, SMA Harapan Mandiri conducts training or workshops to equip students, teachers, and parents with effective information search skills. 47 It includes providing practical guidance for assessing the reliability of information resources, understanding the framework of gender identity, and developing digital literacy that supports in-depth understanding. 48 --- E. Conclusion Through this research, it can be concluded that SMA Harapan Mandiri has successfully initiated and implemented a gender-sensitive character education model that is inclusive and responsive to gender diversity. The research results show that SMA Harapan Mandiri has successfully created and implemented a sex education model with a gender-sensitive character that is inclusive and responsive to gender diversity. This model includes integration in the curriculum, teacher training, building an inclusive school environment, adopting an anti-discrimination policy, respect for diversity, education on the __________ 45 negative impact of dating on teenagers, parent and guardian involvement, and information resources. The positive impact expected in this study is that SMA Harapan Mandiri becomes a place that can improve students' mindsets by implementing responsive-based sex education. Through this application, students will become more literate in understanding sexual differences and how to respect the opposite sex. Therefore, SMA Harapan Mandiri sets an inspirational example of how an educational institution can become a positive change agent in fostering gender awareness, supporting diversity, and cultivating inclusive attitudes among students and the entire school community. [s]

Gender-based sex education is increasingly crucial in schools, especially high school. Despite various studied models, gender-sensitive sex education remains unexplored. This research aims to identify a gender-sensitive sex education model at SMA Harapan Mandiri Medan, North Sumatra, using a qualitative approach. Data collection involves observation, interviews, and documentation, which is analyzed through reduction, presentation, and NVivo 12 Pro mapping. Results show the successful initiation of a comprehensive sex education model at SMA Harapan Mandiri. The model integrates into the curriculum, includes teacher training, fosters inclusivity, adopts anti-discrimination policies, promotes respect for diversity, educates on the negative impacts of teenage dating, involves parents, and offers information resources. The anticipated positive impact is that SMA Harapan Mandiri will become a hub for improved student mindsets through responsive sex education, fostering literacy in sexual differences, and promoting respect toward the opposite sex.

Background Unintended pregnancy and abortion are intricately linked. 1 In 2015-19, 61% of unintended pregnancies ended in abortion globally, while 37%, 72%, and 47% of unintended pregnancies in sub-Saharan Africa, Central, and South Asia, and Europe and Northern America, ended in abortion, respectively. 1 This pattern underscores the restrictive abortion environment and the poor access to safe and quality comprehensive abortion care in sub-Saharan African countries like Uganda. 2 More than half of pregnancies in Uganda are unintended, and nearly a third of these end in abortion. 3 Women living with HIV are particularly at risk for unintended pregnancy and unsafe abortion. 4 Studies show that women living with HIV have unwanted pregnancies due to domestic violence, being single, unstable relationships, multiple partners, and having low economic resources to take care of a child. 5 Studies further reveal that there are higher chances of performing an abortion post-HIV diagnosis. 2 In Uganda, abortion is permitted under some circumstances, but the relevant laws and policies are unclear and are often interpreted inconsistently, making it difficult for both women to access safe and quality abortion services, thus, unsafe abortion. 3 According to statistics, there are 336 maternal fatalities for every 100,000 live births, and there are an estimated 16 to 18 maternal deaths every day, with 4-6 of those deaths being directly related to unsafe abortion. 6 This highlights the need for interventions to reduce unintended pregnancies and unsafe abortions. 3 Although abortion is illegal in Uganda, post-abortion care was adopted as one of the intervention packages to reduce the risks of abortion complications. 2 PAC consists of emergency treatment of incomplete abortion and its complications, contraceptive counselling and provision, and evaluation and treatment of sexually transmitted diseases. 7 Most of the clients seeking post-abortion evacuation are often victims of incomplete and unsafe abortion performed by unqualified personnel. However, we do not know how these women experience PAC services offered in public healthcare facilities. Subsequently, there is a dearth of literature on how they cope with their experience of care. This study was anchored on social constructionism theory. According to this theory, things like laws and practices that are typically taken for granted are actually only "perspectives" that can be questioned. They might be seen as institutionalized viewpoints tailored to specific social groups. This perspective contends that social issues should not be viewed as objective situations, but rather as a component of broader social processes. 8 Discourses are described as various, intrinsically positioned representations of social existence in critical discourse analysis. 8 Differently positioned actors have varied perspectives on and representations of social life. These discourses are sequential and engage in interaction. Dominance, or understanding that some ways of producing assertions are dominant and others are marginal, is one component of this arrangement. 9 It is possible to understand current social climates and various power relations by examining the presence or absence of particular viewpoints, perspectives, and wordings in a book. 9 This study starts with a social issue: the many unintended pregnancies among HIV-positive women and how they frequently result in unsafe abortions. In order to contribute to a deeper understanding of abortion related experience in the Ugandan setting, we aimed to explore the experiences of unintended pregnancy and induced abortion among HIVpositive clients in Lira District, northern Uganda. The results of this study will strengthen the debate to liberalize and improve comprehensive abortion care services in countries with restrictive abortion policies. --- Materials and Methods --- Study Setting The study was conducted in Lira District, Lango Sub-region, northern Uganda. Lira District has two counties, six subcounties, 49 parishes, and 510 villages. The 2020 population of the district stood at 235,379 10 which is served by seven public health facilities with the capacity to offer post-abortion care services. 11 Lira District was chosen because of the high burden of unintended pregnancy and induced abortion. 12 --- Research Design We conducted a descriptive phenomenological study between October and November 2022. In using descriptive phenomenology, we aimed to describe the universal essence of an experience as lived by HIV positive women who had an induced abortion following an unintended pregnancy which represents accurately the true nature of the phenomena. 13 --- Study Participants and Sample Size Estimation The study was conducted among women of reproductive age who were HIV positive and had undergone induced abortion following an unintended pregnancy. Information redundancy was used to establish the sample size. To ensure saturation, data were examined for the presence of codes or categories and the need for more interviews in a preliminary manner at the conclusion of each interview day. Authors made sure that interviews were no longer producing fresh data, as new interviews frequently repeat previously gathered information. --- Sampling Criteria Purposive sampling was used to sample 30 participants who could speak to the research aims and have experience with the phenomenon under scrutiny. --- Data Collection Instruments We conducted face-to-face, in-depth interviews using interview guides with open-ended questions. To ensure the suitability of the interview guide, it was designed based on a literature review and expert consultation. The interview guide was pilot-tested on five participants who were excluded from the study, and appropriate adjustments were made to the guide. The interviews were conducted in both English and the local dialect, by research assistants who are social scientists with training in qualitative study and interview methods. The interviews were conducted in the participants' homes in a setting of their choice that would enhance privacy and confidentiality. All interviews were audio-recorded with the participants' consent. Nonverbal cues, like participants' facial expressions and emotional shifts, were noticed during the interview and noted in the field notes. The interviews lasted, on average, 45 minutes. Participants who, at the time of data collection, were emotionally unstable and had an unstable health status were excluded from the study. --- Procedure The study participants were identified from the postnatal clinics of Amach Health Center IV, Ober Health Center IV, and Ogur Health Center IV, Lira District. The files of clients who had sought post-abortion care services from these facilities were retrieved, and those who were HIV-positive were identified. The prospective participants were contacted by phone, and an appointment was made to meet with them in the community. Upon meeting the prospective participants, we screened for participants who met the inclusion criteria . We explained the purpose, risks, and benefits of participating in our study, and those who consented to participate in the study were recruited. --- Data Analysis The data were transcribed verbatim into Microsoft Word within 24 hours after the interview by the research assistants, who are trained in qualitative data transcription. The texts were annotated with field notes incorporating participant nonverbal cues to aid in data interpretation. We analyzed the data using inductive thematic analysis. 15 Data coding was done by two independent authors. Themes were generated based on the frequency of codes and the sufficiency of data extracts to back up the codes. Discrepancies in codes and themes were resolved through group discussions involving the authors. Data were presented as direct quotes while providing a contextual understanding of the lived experiences of the study participants. To ensure the trustworthiness of our research, we used research assistants who are social scientists with training in qualitative study and interview methods. Two researchers conducted independent analyses of data from various sources, including field notes and audio recordings. To ensure that the subjects were at the center of the data analysis and interpretation, the newly emerging themes were constantly compared to the original transcribed text, and the authors regularly met for debriefings. To improve the dependability and accuracy of the outcomes, the data analysis results were reviewed and debated until an agreement was reached. In order to prove conformability, the investigators used previous bias-reducing personal expectations and experiences as well as the words of participants as recorded in the interview transcripts. Finally, we have kept all audit trails from data collection to analysis to ensure that the processes of data collection and analysis could be linked back to the initial interviews. --- Ethical Approval The study followed the procedures recommended by the Helsinki Declaration. The present study was approved for publication by the Gulu University Research and Ethics Committee . Written informed consent was required for the recruitment of study participants, and confidentiality was upheld throughout the entirety of the research procedure process. Participants had the option to leave the study at any moment without incurring any penalties; the study was anonymous. Distressed participants during data collection were referred to a standby counselor for counseling services during the time of data collection. The participants' informed consent included the publication of anonymized responses. --- Results --- Characteristics of the Participants A total of 30 participants took part in the study, with a mean age of 25.93 years. Half of the study participants were married, while the majority had no formal education. The summary statistics of the characteristics of the study participants are described in Table 1. --- Lived Experiences of Induced Abortion Following Unintended Pregnancy Among HIV-Positive Clients We explored the experiences of women living with HIV who had induced abortions following unintended pregnancies. We identified 21 unique codes, 15 categories, and 3 themes. The coding of key themes is presented in Table 2. --- Themes Three major themes emerged: perspectives on the causes of induced abortion, loss of family support, and internalized and perceived stigma. --- Perspectives That Led to Induced Abortion We further probed the perspective that led the participants to have an induced abortion, and the findings yielded three sub-themes. These were financial constraints, concern for the unborn babies, unplanned pregnancy, and complex relationships. --- Financial Constraints The participants gave economic issues a great deal of thought. The majority of them acknowledged considering the financial ramifications of their unplanned pregnancies before deciding to have them terminated. This was made worse by the husband's or boyfriend's lack of assistance. I can't imagine having HIV and pregnancy at the same time, the situation can be dire and stressful as both present with crazy demands that cannot be easily met; demand for a certain type of food, once on ART, one needs a lot of rest just like the situation with pregnancy amidst the demand to work hard in meeting the ever-increasing cost of living. I had no way of surviving because the man denied having any ownership of my pregnancy. I lacked financial assistance, ………. But my efforts to find a job were fruitless. Thus, I decided to get an abortion. Moreover, the man who caused my pregnancy did not have a job, and I did not even bother to inform him of it. I decided to get an abortion. I considered what I would do if I gave birth. I was challenged by the man, who repeatedly denied the pregnancy, so I decided to induce the abortion. Our socioeconomic situation was not good, which had a significant impact on my decision to induce that abortion. However, I had never intended to have an abortion in my life, but I had no other choice. --- Concern About Their Babies The participants were also concerned about their own welfare as well as the welfare of their infants. They indicated in their narratives a fear of transmitting HIV to their unborn children. All I knew was that I would not escape producing an infected baby, my adherence was poor, the infection would have been either during pregnancy or breastfeeding since I would not afford early weaning of the baby, and these stressed me up. My moments were full of worries about the likeliness of being weaker as the processes of giving birth weaken HIV-infected mothers, the likeliness of dying as a result of childbirth given my already compromised immunity. I also fear being nonproductive when pregnancy reduces further my body's immunity. I was unhappy and anxious because I worried about any harmful effects that [HIV] would have on my child in the future. My child did not deserve this; thus, I could not make the error of transmitting HIV to them. I chose to end the pregnancy. I felt mixed emotions about my pregnancy. I learn about the pregnancy and am very happy because of the news. But immediately I remembered that I had the disease and that there is a chance that I would pass it on to my unborn kid. I could take it and I aborted. I was aware that there was a little chance, but because of all the rhetoric about HIV not being contagious and other things, I don't consider it for myself. All I knew was that I wanted a healthy birth for my child. Nevertheless, I was concerned that I might become ill and that my child would not live. Who would take care of my baby? Termination of the pregnancy remained the only option. --- Complex Relationship We looked into the causes of induced abortion. According to the study findings, complicated relationships were among the major causes leading to induced abortions. The following excerpts can explain this phenomenon; When I conceived my husband was loving, providing for me. But later he started denying responsibility for the pregnancy. Got another girlfriend. This angered me and accordingly, I decided to abort. I was pregnant by this man, but I wasn't even somewhat in love with him. Back then, the man who inherited me and was responsible for the pregnancy was my best friend, we loved each other so much but after impregnating me , refused to support me socially, physically, and economically and to make matters worse, he denied being responsible for the pregnancy yet I also have my other orphaned children to look after. I was left with no option but to abort. When I conceived, domestic violence became the order of the day. Blame game as to who wanted and who didn't want the unintended pregnancy ensured thereafter. He was particularly annoying, constantly reminding me of who married the other. I had no interest in carrying that pregnancy. I told my husband that I was pregnant. His response was very clear that he did not desire a child at that time. My boyfriend's behaviour angered me, so I chose to have an abortion. He berated me and made fun of me almost every day and with great penitence, I chose abortion. I believe that a child deserves the affection of both parents. I did not anticipate my unborn child living such a life. The aforementioned information suggests that the choice to terminate the pregnancy was motivated by rage and a desire to exact revenge on the cheating husband or boyfriend. --- Loss of Family Support The participants claimed that sharing their status with family members had a detrimental impact on their family relationships. Eight participants reported that their families cut off their relationship with them after an induced abortion. Women who had induced abortions immediately felt abandoned by their families and as though they did not belong anywhere, as exemplified by the following excerpts: My husband expelled me from the house after learning about my induced abortion and many thought I was a spoiled woman. When my hubby learned about my situation , he sent me away………. No one wants to associate with me like they used to. My father frequently consumes alcohol and criticizes me in all of those establishments. I returned home and I did not want anyone to know. Sadly, they were later informed. They told me you have been lying to us all the time; you are on your own, you are a shame to this family. I won't soon forget that. When I told my husband about the abortion, he claimed he want nothing to do with me. I considered telling my parents, but I knew they wouldn't be happy due to their religious and cultural beliefs, so I made the decision to leave the house …………. --- Internalized and Perceived Stigma Participants reported feeling both internalized and perceived stigma after having an induced abortion, which was a recurring theme. Participants weighed the emotional relief from an undesired pregnancy vs the sentiments of guilt and sin associated with induced abortion because of internalized stigma and shame. Even among participants who had an abortion, some continued to have a negative opinion of the procedure or refused to take responsibility for their choice, showing internalized stigma. ………………… They talk about it so much in church the few times I've been there following the abortion! I no longer desire to attend church. Just from here, I'm praying. Yes, I had an induced abortion and at first it was a relief. But currently, am like a black sheep in society, am a bad example to the rest of the women in my community. https://doi.org/10.2147/OAJC.S407547 --- DovePress Open Access Journal of Contraception 2023:14 I feel discriminated against and hear that men are warned against marrying me because I had an abortion…………. that I may continue with abortion even in marriage. They speak evil things about me. Even men living with HIV hesitate to marry me because they think I might abort their babies since I have done it before. Many women spoke of wanting to keep their abortion experience a secret to escape stigma and shame. They also acknowledged how secrecy increased social isolation and the risk of health problems both during and after an abortion. Stigma and secrecy occasionally encouraged unsafe or self-inflicted abortions. Additionally, concealing an abortion raised health risks associated with receiving care from inexperienced professionals who frequently worked in clandestine settings at subpar facilities or withheld information from medical professionals. One of my main concerns was whether to disclose, to whom and when. I feared being judged and blamed by others if I disclosed my condition. I don't want anyone to be aware of my abortion situation…………. I don't want anyone, not even a doctor, ……… tell me, to know what? What people will do for me? If people learn that I had an abortion, they will judge me. I initially didn't want to inform my husband, but I had to because perhaps he would eventually get to know it. Nobody else is aware of my condition but him, and he has agreed not to let anyone else know. I do not want anyone to know that I had an abortion since they might not be able to help me and might blame me instead. Even when I was over-bleeding, I feared to visit the nearby clinic for help as I knew the nurses would tell people about my condition. I made the decision right away that no one in my community should be aware that I had an abortion, and that the information should not be publicized. As a result, I removed my phone number from through which nurses contacted me. The Feeling of Guilt and Regret Other experiences of abortion participants indicate that they develop a guilty conscience.This feeling appears in patients as a feeling of guilt and remorse. The experience of the participants has shown that after abortion, they consider themselves guilty and complain about themselves. I considered what I had done to my family to be abhorrent. I feel guilty and, in my family, I'm a horrible woman. Some mothers in this situation thought of themselves as murderers. A young woman believed that God had punished her for being a murderer because she had not been pregnant for more than two years following an abortion that she had forced. I perceive myself as a murderer, and I might actually be one. ………… I have been feeling guilty ever since I had an abortion. I believe I should apologize and repent daily for what I did. I was probably even cursed. Some participants stated that they felt remorse for their actions as soon as they had an abortion. Women who had undergone an induced abortion felt terrible about it, were in pain and had many regrets. Many of them hoped they could go back on their decision; however, it was too late. However, the decision to undergo an induced abortion was viewed by some participants as means of resolving the painful experience and stress associated with an unwanted pregnancy. It led to relief rather than negative psychological experiences. Much as it was a very painful and stressful experience, I got relieved after the abortion for the burden of both pregnancy and HIV is greater than carrying the pregnancy to its full term; now I'm left to battle with one issue that is HIV. I was happy and relieved of the stress of unwanted pregnancy. This resolved the crisis of unwanted pregnancy and I continued to live a normal life after abortion. I think I took the best decision to abort. I was relieved because I did not experience the physical symptoms of pregnancy anymore. --- Discussion This study explored the in-depth, unique experiences of induced abortion following unintended pregnancy among HIVpositive clients in Lira District, Uganda. In this phenomenological study, HIV-infected women recounted their lived experiences with induced abortion. The major causes of induced abortion were financial constraints, concern for the unborn babies, unplanned pregnancy, and complex relationships. Regarding induced abortion-related experiences, three themes emerged: loss of family support, internalized stigma, and perceived stigma. There is a need to note that, the law in Uganda expressly permits women to access safe and legal abortions only if doing so would save their lives. 3 However, statistics indicate that there are numerous unsafe abortions in restricted environment like Uganda. 16 Our study showed that numerous factors played a role in the choice to seek an induced abortion for many women living with HIV. In these circumstances, it might be challenging to single out one factor as being the most crucial. Even if a woman names one overriding reason for her decision, important information would still be lost because the full spectrum of factors influencing her choice would not be quantified. Thus, this study adds another dimension to understanding some of the underlying factors for induced abortion among HIV-infected women. This set of factors is particularly prevalent in Sub-Saharan Africa, where the majority of abortions are more likely to occur in unstable situations. 17 Similarly, in Latin American countries, complex relationships and poverty are among the most important factors why women seek abortion. 18 The trickle-down of cultural norms that led to HIV-infected women who have had an induced abortion enduring internalized and perceived stigma after abortion was a recurrent issue in our results. Stigma permeates the social and cultural conventions that influence the decision to abort. 19 Our results mirror the findings of other previous studies. For instance, in one study of 87 adolescent girls and young women in Zambia, internalized stigma and shame caused adolescent girls and young women to consider the pros and cons of abortion in comparison to carrying on with an unplanned pregnancy as well as the emotional relief of abortion in comparison to the guilt and sin connected with it. 20 A similar study with adolescent girls and young women in Ghana found that the illegality of abortion, religious sermons, media, and other social platforms reinforced the stigma and idea that abortion was a sin. 21 Thus, psychological support professionals should be aware that internalized stigma affects HIV-infected women who get pregnant unintentionally and may need to be addressed. Our results also show that the experiences of HIV-positive women who had induced abortions ranged from guilt, and regrets to a variety of other undesirable feelings. The majority of mental health distress could be attributed to high sensitivity to the comments of people around them which relate to abortion. While some studies show that having an abortion brings about relief. 22 South African studies indicate that there are many difficulties, including moral conflict, negative feelings, regret, guilt, self-blame, judgment, and physical agony following abortion. 23 However, our findings imply that a knowledge of the risk factors should result in the encouragement of more effective counselling and support for those women who require it. Our results, however, showed that the decision to undergo an induced abortion was viewed by some participants as means of resolving the painful experience and stress associated with an unwanted pregnancy. It led to relief rather than negative psychological experiences. Induced abortion seemed to resolve the crisis of unwanted pregnancy and lessened the experiencing the physical symptoms of pregnancy. In line with our findings, studies showed that women who chose to have an abortion felt good about their decision. 24 According to a 2009 study by Halldén et al, women felt relieved after having an abortion because it ended their dilemma over unintended pregnancy. 25 --- Strength and Limitations Our study is limited in scope and focused on pregnant HIV-infected women identified from the postnatal clinics in Lira District. Therefore, the experiences of HIV-infected women who did not seek post-natal were not captured. Also, the qualitative method of this study restricts the generalizability of our findings. However, the findings of this study may influence more extensive qualitative research and the creation of interventions to guarantee safe abortion and enhance the well-being of women with HIV. --- Conclusion This study highlights the lived experiences of women living with HIV following an induced abortion. The study shows that women living with HIV had induced abortions due to numerous reasons, including financial concerns, complicated relationships, and a fear of infecting their unborn babies. However, after induced abortion, the women living with HIV faced several challenges like loss of family support, stigma, and feelings of guilt and regret. Based on HIV-infected women who underwent induced abortion and unexpected pregnancy, they may need mental health services to reduce the stigma associated with induced abortion. --- Data Sharing Statement The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. --- --- Disclosure The authors report no conflicts of interest in this work. --- Open Access Journal of Contraception --- Dovepress --- Publish your work in this journal Open Access Journal of Contraception is an international, peer-reviewed, open access, online journal, publishing original research, reports, reviews and commentaries on all areas of contraception. In addition to clinical research, demographics and health-related aspects, the journal welcomes new findings in animal and preclinical studies relating to understanding the biological mechanisms and practical development of new contraceptive agents. The manuscript management system is completely online and includes a very quick and fair peer-review system. Visit http://www.dovepress.com/testimonials.php to read real quotes from published authors.

Background: More than half of pregnancies in Uganda are unintended, and nearly a third of these end in abortion. However, little research has focused on women living with HIV's subjective experiences following induced abortion. We explored how women living with HIV subjectively experience induced abortions in health facilities in Lira District, Uganda. Materials and Methods: This was a descriptive-phenomenological study between October and November 2022. The study was conducted among women of reproductive age (15-49 years) who were HIV positive and had undergone induced abortion following an unintended pregnancy. Purposive sampling was used to sample 30 participants who could speak to the research aims and have experience with the phenomenon under scrutiny. The principle of information power was used to estimate the sample size. We conducted face-to-face, in-depth interviews to collect data. Data were presented as direct quotes while providing a contextual understanding of the lived experiences of the study participants.The results showed that the major causes of induced abortion were financial constraints, concern for the unborn babies, unplanned pregnancy, and complex relationships. Regarding induced abortion-related experiences, three themes emerged: loss of family support, internalized and perceived stigma, and feelings of guilt and regret.This study highlights the lived experiences of women living with HIV following an induced abortion. The study shows that women living with HIV had induced abortions due to numerous reasons, including financial concerns, complicated relationships, and a fear of infecting their unborn babies. However, after induced abortion, the women living with HIV faced several challenges like loss of family support, stigma, and feelings of guilt and regret. Based on HIV-infected women who underwent induced abortion and an unexpected pregnancy, they may need mental health services to reduce the stigma associated with induced abortion.

Introduction The 2018 report by the Organization for Economic Cooperation and Development indicated that the Republic of Korea had the third-longest number of working hours among countries in the OECD, following Mexico and Costa Rica [1]. Long working hours are a risk factor for workers' health, leading to depressive symptoms [2][3][4], unhealthy weight gain [2,5], poor sleep condition [3,6], poor cognitive function [7], and anxiety [3]. Moreover, the associations between long working hours and several chronic diseases such as coronary heart disease [3,8], stroke [9], metabolic syndrome [10], and injury [11] were also reported. Self-rated health was verified as a predictor of mortality [12,13] and working sustainability [14]; owing to its simplicity and integrity, it can be employed as a general marker for many health-related factors [15]. Several studies investigated the associations between working hours and SRH. Two of these studies revealed that long working hours [16,17] and short working hours [17] were associated with poor SRH, more commonly among women. Such an association was also reported in young workers [18]. However, most of the studies investigated the trends of SRH with the stratification of only sex [16,18,19]. However, several studies showed that socioeconomic status may be related to the association between working conditions and health. According to a study, the increase in type 2 diabetes based on long working hours was greater in individuals with low SES [20]. In another study, only non-manual workers had a risk of obesity based on shift and night work [5]. Thus, to determine how personal, social, and work traits influence SRH, we investigated the trends in SRH according to working hours with stratification of sex, SES, and working conditions, employing the survey data representative of workers in Korea. --- Materials and Methods --- Data Collection and Study Participants This cross-sectional study was based on the Korea National Health and Nutrition Examination Survey conducted from 2010 to 2018, which included health behavioral status, SES, and working conditions as variables. The Korea Centers for Disease Control and Prevention conducted these surveys. In KNHANES, the sample design and size are estimated to represent the entire Korean population, so that the results can be employed to represent the overall population in Korea in each survey year [21]. The rates of participation in 2010-2018 ranged from 76.6% to 80.8%. Figure 1 shows the exclusion criteria used in ultimately selecting 25,144 study participants. diabetes based on long working hours was greater in individuals with low SES [20]. In another study, only non-manual workers had a risk of obesity based on shift and night work [5]. Thus, to determine how personal, social, and work traits influence SRH, we investigated the trends in SRH according to working hours with stratification of sex, SES, and working conditions, employing the survey data representative of workers in Korea. --- Materials and Methods --- Data Collection and Study Participants This cross-sectional study was based on the Korea National Health and Nutrition Examination Survey conducted from 2010 to 2018, which included health behavioral status, SES, and working conditions as variables. The Korea Centers for Disease Control and Prevention conducted these surveys. In KNHANES, the sample design and size are estimated to represent the entire Korean population, so that the results can be employed to represent the overall population in Korea in each survey year [21]. The rates of participation in 2010-2018 ranged from 76.6% to 80.8%. Figure 1 shows the exclusion criteria used in ultimately selecting 25,144 study participants. --- Measurement of Weekly Working Hours Participants were asked about their average working hours per week, including night work and extra working time; weekly working hours were grouped into four categories: <20 h, 20-39 h, 40-59 h, and ≥60 h. --- Self-Rated Health Participants were asked to evaluate their health using a five-point scale; "very good," "good," and "fair" were defined as good SRH, whereas "very poor" and "poor" were defined as poor SRH. --- Categorizations of Socioeconomic Status and Working Conditions SES and working conditions were categorized for stratification. Household income was classified into four quartiles based on national statistics. Education was classified into four levels according to the Korean school system: "fewer than six years ," "fewer than nine years ," "fewer than 12 years ," and "more than 12 years ." The occupation was classified into six categories: simple labor , craft, plant and machine operators, and assemblers , skilled agricultural, forestry, and fishery --- Measurement of Weekly Working Hours Participants were asked about their average working hours per week, including night work and extra working time; weekly working hours were grouped into four categories: <20 h, 20-39 h, 40-59 h, and ≥60 h. --- Self-Rated Health Participants were asked to evaluate their health using a five-point scale; "very good," "good," and "fair" were defined as good SRH, whereas "very poor" and "poor" were defined as poor SRH. --- Categorizations of Socioeconomic Status and Working Conditions SES and working conditions were categorized for stratification. Household income was classified into four quartiles based on national statistics. Education was classified into four levels according to the Korean school system: "fewer than six years ," "fewer than nine years ," "fewer than 12 years ," and "more than 12 years ." The occupation was classified into six categories: simple labor , craft, plant and machine operators, and assemblers , skilled agricultural, forestry, and fishery , service and sales , clerk , and manager and professional based on the International Standard Classification of Occupations. Korea assigns more than 18 months of mandatory military duty to all male citizens . Thus, Major Group 0: armed forces was excluded due to heterogeneity in age and gender. --- Measurements of Covariates A previous study indicated that SRH was closely related to health behavioral factors , body mass index , and chronic diseases [22]. We selected covariates from both previous studies and backward stepwise selection. Smoking was classified into three categories: never, past, and current. Smokers who smoked fewer than 100 cigarettes throughout their lifetime were defined as never, and smokers who smoked before but quit were defined as past smokers. Drinking was classified into three categories: none, moderate, and severe. Drinkers who had no drinking history within the year were defined as none, and drinkers who drank five glasses of alcohol twice per week were defined as severe. Obesity was classified into three categories according to body mass index : underweight , normal , and obese . Three diseases were chosen as confounding factors to be adjusted: hypertension, diabetes, and depression. --- Statistical Analysis SPSS software version 25 was used for statistical analyses. A p-value <0.05 was considered statistically significant. The chi-square test was used to assess the relationships between participants' working hours and other variables. Multiple logistic regression was used to estimate odds ratios and 95% confidence intervals to estimate the trends of poor SRH by working hours while adjusting for age, disease, smoking, drinking, and obesity. Sex, household income quartiles, education, occupational classification, type of work, and work schedule were stratified. Figure 2 shows the analytical framework of current study. , service and sales , clerk , and manager and professional based on the International Standard Classification of Occupations. Korea assigns more than 18 months of mandatory military duty to all male citizens . Thus, Major Group 0: armed forces was excluded due to heterogeneity in age and gender. --- Measurements of Covariates A previous study indicated that SRH was closely related to health behavioral factors , body mass index , and chronic diseases [22]. We selected covariates from both previous studies and backward stepwise selection. Smoking was classified into three categories: never, past, and current. Smokers who smoked fewer than 100 cigarettes throughout their lifetime were defined as never, and smokers who smoked before but quit were defined as past smokers. Drinking was classified into three categories: none, moderate, and severe. Drinkers who had no drinking history within the year were defined as none, and drinkers who drank five glasses of alcohol twice per week were defined as severe. Obesity was classified into three categories according to body mass index : underweight , normal , and obese . Three diseases were chosen as confounding factors to be adjusted: hypertension, diabetes, and depression. --- Statistical Analysis SPSS software version 25 was used for statistical analyses. A pvalue <0.05 was considered statistically significant. The chi-square test was used to assess the relationships between participants' working hours and other variables. Multiple logistic regression was used to estimate odds ratios and 95% confidence intervals to estimate the trends of poor SRH by working hours while adjusting for age, disease, smoking, drinking, and obesity. Sex, household income quartiles, education, occupational classification, type of work, and work schedule were stratified. Figure 2 shows the analytical framework of current study --- Results After excluding the unemployed, individuals aged below 20 years and above 65 years, professional soldiers, and individuals who did not answer the questionnaire, a final sample of 25,144 participants was obtained . Table 1 presents the participants' general characteristics. Men worked longer than women. Workers in the first quartile of household income worked shorter hours, and workers in the third and fourth quartiles of household income tended to work for 40-59 h per week, including most Korean workers. Similarly, workers with college-level education tended to work for 40-59 h per week. For sales and service workers, the ratio of workers working ≥60 h per week was the largest; however, for simple laborers, the ratio of workers working <20 h per week was the largest. Paid employees and fixed workers tended to work 40-59 h per week. Table 2 shows the ORs of poor SRH according to working hours with stratification of sex, SES, and working conditions. The ORs were calculated after adjusting for age, obesity, smoking, drinking, and diseases. The reference group was workers who worked 40-59 h per week since their SRH was better than other groups. With no stratification, there were risks of poor SRH in workers working <20 h and ≥60 h per week. Men working <20 h per week were at risk of poor SRH in contrast to women. There were significant risks of poor SRH in both men and women working ≥60 h per week. Workers in the fourth quartile of household income and working ≥60 h per week were at risk of poor SRH . When working <20 h per week, there were significant risks of poor SRH in workers with elementary level and junior high-school level education . However, when working ≥60 h per week, there were significant risks of poor SRH among workers with high school and college level education. Simple laborers working <20 h per week were at risk of poor SRH . In contrast, there were significant risks of poor SRH among managers and professional workers and service and sales workers working ≥60 h per week. Paid employees working <20 h per week were at risk of poor SRH in contrast to employers or self-employed workers. There were significant risks of poor SRH in both paid employees and employers or self-employed workers working ≥60 h per week. There were significant risks of poor SRH in fixed workers working <20 h and ≥60 h per week, as opposed to non-fixed workers. Adjusted for age, obesity, smoking, drinking, hypertension, diabetes, and depression. Variables for stratification are not adjusted. Bold implies statistically significant. * Unpaid family workers were included in all analyses, but their odds ratios were excluded from this table due to their small sample size. --- Discussion After adjusting for several demographic and health-related factors, statistically significant ORs were estimated between long or short working hours and SRH. In summary, poor SRH was related to long and short working hours in the total population. Both men and women working long hours were at risk of poor SRH, were the magnitude was greater among women. Only men were at risk of poor SRH when working for short hours. Workers with low education were at risk of poor SRH when working short hours, whereas workers with high education were at risk of poor SRH when working long hours. Additionally, occupations associated with either high or low educational level showed an identical relation. Paid employees were at risk of poor SRH when working short hours as compared to employers or self-employed workers. Compared with non-fixed workers, workers with fixed work schedules were at risk of poor SRH when working short or long hours. Several studies indicated the adverse effects of long working hours on SRH, which is attributed to high job demands accompanied by long working hours [16][17][18][19], and the results of the present study support them. Additionally, short working hours are related to precarious working conditions [23] , which are associated with poor health [16,[24][25][26][27]. The result that women working long hours showed poorer SRH than men working long hours can be explained by the "double burden" of household and working duties of women [16,28]. This is why service and sales workers, of which women's proportion was 63.7% in the present study, showed an unhealthy association with long working hours. In contrast to women working short hours, the SRH of men working short hours was poor. This was inconsistent with previous Korean studies; however, they were methodologically different from the present study. A study, confirming that only women had poor SRH with short working hours, merged workers who worked <40 h per week as one category [16]. In another study, which showed no association between short working hours and SRH in both sexes, short working hours were assessed in only one category: 20-35 h per week [19]. These differences would lead to discordance. However, considering that workers working <20 h per week accounted for 8.5% of the total participants in the present study, such workers were not negligible; therefore, a category for these workers was needed. The reason for this sex difference in short working hours is as follows: compared to unhealthy women, unhealthy men are more likely to be involuntarily thrown into precarious jobs with short working hours [23]. In Korea, there are profound gender inequalities regarding wage and housework time. In 2016, men earned more than twice what women earned, and men's housework time was far shorter than women's [29]. Such concentrations on men's wage and women's housework are so rooted that unhealthy men and women tend to work at the workplace or household, respectively, if they can barely work due to poor health. A study on the association between precarious jobs and poor SRH only included men, which also supports our interpretation [30]. High educational level and related occupations were associated with poor SRH when working long hours, which can be attributed to the lack of leisure-time physical activity. This shortage is related to poor health [31] and SRH [32]. White-collar workers have relatively long leisure-time physical activity [33,34]; therefore, the reduction of leisure-time physical activity due to long working hours would be greater in high educational occupations. On the contrary, low educational level and related occupations were associated with poor SRH when working for short hours. This can be interpreted as follows: the unhealthy effect of precarious jobs demanding short working hours is found only among workers with low education. Low educational level is related to precarious jobs [35], which are associated with short working hours and poor SRH [23]. The present study verified this chain of relationships exposing the simple association between working hours and SRH. Paid employees working short hours showed poor SRH as opposed to employers or self-employed workers; this can be attributed to the differences in autonomy in modulating working hours. Employers or self-employed workers desiring short work can modulate their working hours at will; however, the short working hours of some employees would be involuntarily decided by the employers. Despite the fact that non-fixed work schedules were widely researched [36,37], an association of SRH according to working hours in non-fixed workers did not appear in the present study. Thus, estimating the effects of working hours on SRH in non-fixed workers appears difficult in a cross-sectional study. A study reported no relationship between shift work and SRH [38]. Thus, a longitudinal study is required. This study has several limitations. Firstly, owing to its cross-sectional design, the causality between working hours and SRH could not be fully explained; the probability of reverse causality cannot be negligible. Secondly, due to recall bias, which inevitably occurred due to a retrospectively conducted survey, the participants' answers could be inaccurate to a certain extent. Finally, these findings cannot be extrapolated to all participants due to differences in the reliability of self-rated health according to SES, ethnicity, gender, and age [39]. Nevertheless, this study has several novel points. This study stratified various factors, including sex, SES, and working conditions, so that the trends of SRH by working hours according to workers' social and working traits could be predicted delicately. Additionally, by restricting age and adjusting several health-related factors, we tried to minimize the healthy worker effect. --- Conclusions In conclusion, long and short working hours were associated with poor SRH. Men working short hours were at risk of poor SRH, while women working short hours were not, which is attributed to the gender inequalities of wage and housework. Highly educated workers' long working hours and less-educated workers' short working hours were associated with poor SRH, indicating that workers' educational level is a distinct factor in predicting SRH according to working hours. Occupations associated with either high or low educational levels had the same involvement, thus supporting the predictability of educational level. Employers or self-employed workers did not have any risk of poor SRH with short working hours, whereas paid employees did. The SRH of non-fixed workers did not worsen with long or short working hours in contrast to fixed workers; this implies that both short and long working hours are associated with workers' health, but the magnitudes differ according to sex, SES, and working conditions. Further research is needed to clarify the causal association between working hours and self-rated health. --- Author Contributions: J.J. conceptualized and designed the study, analyzed and interpreted the data, and drafted and reviewed the manuscript. W.L. designed the study, analyzed and interpreted the data, and drafted and reviewed the manuscript. W.-J.C. drafted and reviewed the manuscript. S.H. drafted and reviewed the manuscript. S.-K.K. designed the study, drafted and reviewed the manuscript, and analyzed and interpreted the data. All authors have read and agreed to the published version of the manuscript. Funding: This research received no external funding. ---

This study compared the association between working hours and self-rated health (SRH) according to sex, socioeconomic status, and working conditions. In all, 25,144 participants were selected from the Korea National Health and Nutrition Examination Survey (KNHANES), conducted from 2010 to 2018. The risks of poor SRH, according to working hours, were investigated using multiple logistic regression. Both short and long working hours were associated with poor SRH. Men working short hours and women working long hours were at risk of poor SRH. Workers with fewer than nine years of education were at risk of poor SRH when working short hours, whereas workers with more than nine years of education were at risk when working long hours. Similarly, simple laborers were at risk of poor SRH when working short hours, while managers and professional workers were at risk when working long hours. When working for short hours, paid employees were at risk of poor SRH. Workers with a non-fixed work schedule showed no risk of poor SRH when working long or short hours. In conclusion, workers working short hours with low education and workers working long hours with high education were at risk of poor SRH. Working conditions were significantly related to the association between SRH and working hours.

Introduction Children provide unique insight into various aspects of their lifeworlds that cannot be obtained by objective measures alone, and as such children's informed and personal perspective must not only be collected but also be given due consideration. While the use of qualitative methods when researching children is not new, the extent to which children are involved in different aspects of the research process such as data collection and analysis is variably received. The extent to which children are presented with the opportunity to have an active role in the research process is often limited . Varied views of children's capacity serve to perpetuate a dominant view of children as lacking the knowledge, experience and maturity to make meaningful contributions . Children's capacities are gradually being acknowledged in research, with some researchers actively and authentically seeking to include children of all ages in different stages of the research process, to varying extents . This includes research conceptualisation, design, and dissemination . The Children's Research Centre provides a comprehensive list of research work that has been conducted and led by children. In acknowledging children's competence and being aware of their role in each project's research process, researchers are now including children and identifying them as competent in capacities as varied as research partner, participant and contributor . Children's capacities are increasingly recognised within the sociology of childhood, a theoretical position where children are considered to be competent social actors ) and advocates that children should be recognised as such. The acknowledgement of children and their capacities in research is gradually gaining exposure, but is variably considered and applied in different contexts. Matters of interest to researchers relating to children and childhood are typically those considered important by adults , and reflect contemporary societal preconceptions . The matters that adults consider important may not be the same as what children consider important, which is reflected through adult-driven national and international research agendas and priorities. Birbeck and Drummond state that 'research with children tends to be a process that is devised by adults, applied to children with results interpreted by adults, generalised and presented as a theory of childhood'. When seeking to understand children's lifeworlds, it is important to ensure that children's perspectives have a place in research and in practice, beyond the passive role of a source of data. To this end, adults can involve children in conversations about children's lives and co-construct understanding rather than being objects of research . Adults and children can co-construct meaning where children have a greater participatory role in research processes that recognise them as 'experts in their own lives, but not the only experts' . Although there have been multitudes of qualitative studies involving children, significantly less attention is directed towards reflecting on children's involvement in qualitative research beyond the role of participant. As such, this study provides insight into the ability to increase the richness of data obtained when researching with children, by including their perspectives and contributions in data analysis processes. The analytic focus on the processes children engage with in analysing their own data enables another contribution. This both builds on and contributes to work in qualitative methodologies and seeks to be accessible to all qualitative researchers conducting research with children, not just those aligning with sociological positioning. This paper reports on one part of a qualitative research project investigating how children, aged 8 to 12 years, conceptualised the complex issue of wellbeing, with the full results from the study reported elsewhere . Wellbeing is an elusive concept that is difficult to define . With no agreed cross-disciplinary definition of the construct of wellbeing in itself , definitions are often ambiguous and contested . However, there is consensus in that wellbeing is multifaceted , dependent on context , and includes social, psychological, emotional, economic/environmental, and cognitive components . The importance of context is highlighted when considering wellbeing to be 'a socially relevant, culturally anchored construct that changes over time, both in terms of individual life course changes as well as changes in socio-cultural context' . Therefore, when considering how children conceptualise wellbeing and approach conceptualisation processes, contextual and cultural influences should therefore also be acknowledged. While some aspects of interpretation and prioritisation may be culturally contingent, the process and means by which children arrive at their conceptualisations may have universal, or at least transferable, characteristics. Literature was reviewed across philosophical, medical, psychological, economic and educational literatures. This review provided a basis from which comparison could be made between each of the children's conceptualisations of wellbeing and those presented in the literature. While wellbeing is considered to be either a construct or a state , dependent on the extent to which its qualities are considered as being measurable, as this project sought children's conceptualisations of wellbeing, it was considered as having the potential to be both a construct and a state, depending on how the children focused their discussions. --- Research context The following discussion provides reflective insight towards the processes the children engaged with to analyse their own data that had been obtained during a prior session. Four schools from the same educational region in Australia participated, with all children in grades 3, 4, 5 and 6 who returned signed parental consent forms participating in the project. In Australia, a school's ICSEA value is used to compare the Socio-Educational Advantage across schools calculated based on geographical location, proportion of Indigenous students, parent's occupation, and parent's education . While ICSEA values were not used to select the four schools, these details have been provided in Table 1 for broad contextual information about the schools' and students' cultural and class backgrounds. The average value for ICSEA is 1000, which means schools that fall over or under this benchmark are considered to have either a higher or lower socio-educational advantage to other comparable schools. Table 1 1 --- School Site Demographics The project consisted of three focus group sessions held at each school, during school hours. Each focus group session contained a range of qualitative individual or small group activities to explore the notion of wellbeing. Groups consisted of children from the same school whose parents had signed and returned the consent forms. Of these children, the formation of each group was decided by each school usually based on their timetables. Consent was sought from participating children prior to the commencement of each session and children could participate in all, some, or none of the activities and sessions involved in the project. All of the children in session two were also involved in the first session. Prior to the first session, none of the children had met the researcher before. The researcher's involvement in the school was limited to the three data collection sessions with each of the groups. There were seven groups of children over the four schools. In the first session, the children completed a short introductory activity where they each rated their own wellbeing and provided a reason for their rating, before conducting individual wellbeing brainstorms on blank pieces of paper. For the brainstorm, the researcher asked the children to "put down everything you can think of to do with wellbeing on your [blank] piece of paperyou can write, draw, write and draw, whatever you would like." At the end of the session, each child was then invited to share their brainstorm with the group. The second session involved the children thematically analysing the items generated by each person in their first session brainstorm, while in the third session, the children developed definitions for wellbeing. Each session ran for approximately 45 minutes and was audio recorded. Throughout each of the sessions, the researcher explained the task, answered questions , and responded when the children invited her to be part of the process. When any of the children asked about wellbeing , the researcher said, 'wellbeing can mean different things to different people .. --- . I'd like to find out what wellbeing means to you'. This paper critically reflects on the processes and procedures that the children utilised in session two to thematically analyse this qualitative data that they generated in session one through the children's coding, grouping and justifications for their analysis decisions. That is, the focus is on how they approached and engaged with the analysis task and the approaches they utilised to fulfil the task objectives. --- The process of analysis Session two focused around the thematic analysis activity. The children were asked to organise their responses from their session one brainstorm into categories or themes named and chosen by them. To do this, they were asked, 'Using all of the things your group said during the first session, are there any things that can be grouped together and given a group name?' In preparation for the session, the researcher had transcribed verbatim everything identified and discussed by the children in the first session. This included the children's commentaries accompanying their drawings, individual items identified and drawn, as well as the children's written and spoken responses. Each of these aspects were printed on paper and cut into what the researcher refers to as individual 'units of analysis'. The units of analysis included words, sentences and phrases incorporating; • Any singular parts of text/phrases • Individual concepts or ideas • Chunks of passage • Descriptions and labelling of drawings 3 • Verbal discussion as recorded with the audio recorder. While the choice of unit length was ultimately determined by the researcher in deciding how to 'split' the units, the researcher referred to how the children had chosen to break up the units through their descriptions, placement of words/phrases, or sequencing in discussion. For example, if the child had written a word by itself on the drawing, this single word would be what was used as one unit of analysis. Similarly, if the child used a phrase to describe different aspects of their drawing, each phrase would be separated in the same way the child reported it. For example, 'it's all about family' might be the phrase the child used to describe the whole drawing, which was then used as a unit of analysis along with the child's descriptions of other parts of the drawing as separate units. The researcher endeavoured to include everything that the children talked about and referred to in the session, even if it may not have seemed by the researcher to be relevant to the topic. Made up words and grammatically incorrect information was also included such as 'dun dun dunnnnnn'4 . The researcher chose to include these elements in the units of analysis provided to the children for session two, to enable the children to have greater autonomy around what information they considered relevant to each theme they identified. It was also included to see how they responded to less relevant or seemingly nonsensical data. Names of individuals mentioned were also included and usually referred to the peers or siblings of members in the group. Reflections on this aspect are included in a later section. 3 Drawings were not included as analytical material due to time constraints for each session. This is discussed in more detail later in the paper. As the project did not specifically involve a 'child-as-researcher' component, it was not deemed necessary to include more explicit training in data analysis. The purpose of the task was for the researcher and the children to make connections between and across the data and for the researcher to see how the children extracted meaning from, and organised and applied meaning to, data generated by them rather than in a 'child-as-researcher' role. As the groups consisted of children from different ages and year levels, some children had varying levels of familiarity with one another. This sometimes influenced the within-group decisions as some groups chose to discuss the placement of each item as part of their entire group while others chose to split into smaller sub-groups: for example, girls/boys, or younger/older children. The researcher indicated that the children could engage with the tasks however they chose; individually, in pairs, in groups, or a combination. There were nine separate sub-groupings in this session across the seven groups with the sub-group formations decided by the children. For each of the groups, duplicate cut-outs of the 'units of analysis' from the session one data were also offered so the children could provide multiple codings for the same items or split them into sub-groups within their larger 4-to-6 person group, if they chose6 . The children also edited the units of analysis when required, through correcting spelling errors that were purposely left in the transcription by the researcher, and removing superfluous or irrelevant filler information, such as someone asking for a pencil or expressions such as 'as she said…'. While each group and subgroup decided to approach the task in different ways, similar themes emerged consistently across all seven groups such as named themes of people/relationships, health, feelings, happiness, activities, and 'random' . Depending on the amount of data generated originally by each group, the children each thematically analysed between 87 and 132 units. Some of these units were separated or duplicated by the children with the additional copies of the units or blank cut outs based on how they edited the data. --- The process of categorisation In thematically analysing their own group data from the first session, the children tended towards categorising the information in three ways: Individually Collaboratively Eclectically Each way will be discussed in turn. The groups who chose to complete the task individually did so in one of two ways. The first had children sorting through the slips of paper to find their own items from the brainstormed words and commentaries associated with their drawings, provided in the previous session. These were then sorted into groups using an inductive process : that is, the children used the items that they considered were theirs from the previous session ). In effect, these children were thematically analysing their own individual data, rather than the collective data from the whole group. The second way children participated in the analysis task individually consisted of the children determining one or more 'groups' that they would use to categorise wellbeing. From this, individual children chose items from the units of analysis that they considered deductively would fit in their group . This was done without consultation with the rest of the group and included The children who engaged in the analysis task collaboratively also exhibited two distinct methods. The first saw them starting to group the concepts/units of analysis into similar themes. As above, they used an inductive coding method, allowing the themes to emerge from the patterns and associations revealed in the data By involving children at various stages throughout the research process, such as through their involvement in analysing their own data, the researcher can better ascribe validity with the data obtained. This is because the focus for the qualitative researcher is then on presenting the views and perspectives of the participants rather than the extent of alignment between data and abstract concepts . If the participants verify the information on multiple occasions, determinations of trustworthiness and credibility can be made . Accepting children's responses at face-value was therefore of particular importance for this research as it acknowledges the need to accept and allow responses as they are provided, as all emergent themes are of interest, not just those that are attractive to the researcher . The second method within the collaborative coding process involved children choosing to be responsible for a particular group/theme that they considered would be reflected in the units of analysis they were about to go through. For example, 'People. We The third and final method that the children used to approach the task involved an eclectic approach. This involved a combination of individual and collaborative, inductive and deductive methods. The methods the groups used during the session alternated between individual and collaborative strategies as well as inductive and deductive nominations, as described above. --- Conceptualisations of wellbeing While the overall findings of the project are reported elsewhere 7 , to add context to the implications discussed throughout the rest of the paper, the children's 7 The findings of the project in terms of the children's research data and conceptualisations are reported in the publications listed above and in ways that are split by session, conceptualisation, and methodology. For context, the emerging themes from the researcher's analysis of this second session included; Social individual to achieve wellbeing was dependent on the extent to which they could acquire the things they needed to survive and the extent to which they belonged to social and/or family groups . Wellbeing could therefore be influenced by the extent an individual's survival needs were catered for, as well as by their ability to maintain physical health and feelings. The children described activities, interpersonal relationships and bad things as having the potential to impact on these areas. These prioritisations and focus areas may indeed have differed if the same data were generated or analysed by children from more diverse cultural and class backgrounds or if cultural comparisons were a focus of the study. --- Ranking the importance of wellbeing categories After determining their thematic groups, the children were asked to rank their identified groups in order of importance for wellbeing. After categorising the information generated during session one, each child individually ranked the themes in order of importance for wellbeing. In this it was expected that the aspects of wellbeing most important individually for each of these children would emerge. The children interpreted the components of the analysis task in different ways. Despite all engaging in a grouping activity where specific items were categorised, some children still chose to rank the individual items listed in the 'units of analysis' rather than the thematic group names they had created. For example, one child's ranking for this activity was: '1 st friends/family, 2 nd health, 3 rd food, 4 th nature, 5 th peace', although the categories that the group identified were 'outside things, health, things that make me happy'. While an analysis of the children's prioritisations here may provide insight around some cultural and class-based nuances of the participating group, the point of this example is to illustrate how some of the children recreated the themes and named them differently to the ones determined in the activity rather than analysing their choice/categorisation and subsequent prioritisation. Other interpretations of an importance ranking included the children ranking the groups that they had created: for example, 'People, food, happy things, animals, hobbies'. These rankings corresponded to the categories that the group had developed. One group commented, 'why do we have to think of the reason for our decision for everything? The reason is so confusing! .. --- . it's what's most important, what I need, and what I like' , which reflects other children's sentiments around their process justifications. --- The process of power Three different issues relating to the process of power are highlighted: the in-group power distribution, the empowerment of children through their involvement in the data analysis process, and attempts to reduce existing in-group power imbalances. Only one of the groups discussed how they would approach the task prior to starting the grouping exercise: 'Let's do it all together as a group … Anyone want to do pairs? ... Nah ... let's do it all together'. There was no process discussion within the other eight groups/subgroups. In some groups, the process discussions were influenced by apparent power imbalances in the group, manifested in different ways. In one group, one child [James 8 ] took the lead and directed the others. In this group, the child acted assertively and the others did as they were told. At one point, a discussion between two children occurred where they queried the categorisation: Wade: What's this one? Rachel: Doing things? James: [in an annoyed tone] It's DOING THINGS. Wade: No, it's non-doing things. James: NO. That's a doing thing. Rachel: Mood? James: Don't you put it there, that's in the middle of the thing. Ellie: So the groups are doing things and ... mood? Wade: No it's not doing things! James: NO, IT'S MOOD. At this point, one of the children wrote 'mood' at the top of the page and the name of the category was not queried further. In other groups, children shared the leadership role and problem solved together to determine the most appropriate and relevant category for the item they were coding. Some of the children shared the leadership role: Natalie: That should be in happy things! Eating cake is Yum! Cally: But it's also a food. Erica: Well we already got one there [in food] so we can put one in happy. Children's involvement in coding their own data increased the ability for the researcher to understand and reproduce codes during the researcher's own analysis that were meaningful for the children. The children's involvement in the analysis and coding of their data in the second session enabled the children to have a greater participatory role in the research process as well as greater influence in informing the researcher's subsequent analysis and reflective processes. Having each child engage with the notion of wellbeing individually in the first and third sessions, prior to discussing their understandings with the larger group, allowed for a personalised response free from the possible influences of others who might be more assertive, dominant communicators . Furthermore, offering the children the opportunity to write their responses rather than communicate verbally removed some of the potential intimidatory effects of other children or of the researcher that might be present in traditional interview formats . When utilising hermeneutics as the analysis frame, this procedural and contextual information is important as it assists the reader to understand the context as lived and experienced by the participants and the researcher. --- Critical reflections on the process In analysing the ways the children approached the importance ranking element of this task, six possibilities emerge. First, instructions given to the children were not Second, some children were able to group all of their session one data in less than five thematic analysis groups. As a 'top 5' importance ranking was printed on their sheet, some children may have considered it more relevant or appropriate to nominate their items from the units of analysis than from the thematic groupings. Third, some children may have completed the task to be compliant to instructions rather than considering the importance ranking, using their thematic groupings as truly reflective of what they considered to be the most important elements for their wellbeing. Fourth, the children may have considered the thematic groupings chosen by them to be appropriate representational summaries of the broader, important elements of wellbeing. Fifth, some children may have chosen to engage with the task in their own way. They may have felt that the aspects relevant for wellbeing for them were not clearly represented by categorising the thematic groups. Instead, they may have considered the most important aspects of wellbeing better represented through individual items, particularly as some of the discussions acknowledged directionality within some thematic groupings. For example: 'Friends ... can be in the middle, because friends can go either way ... travel could be good or bad' . Finally, despite all of the children verbally agreeing they were satisfied with the final thematic groupings and names associated with each, some may not have been. Perhaps due to the dynamics of power inherent within the group, some children may not have felt the others were hearing their opinions in the group task. There were a number of examples of such dynamics at work, both between children in groups and between children and adults, throughout the data collection sessions, which are discussed elsewhere . --- Children's insights and implications for future research While the reported reflections present a small element of the entire process that was undertaken when researching with children, it also presents an important element. Reflective insight into the additional richness of information obtained when researching with children as well as considering the processes they utilise when analysing their own data contributes to discussions around children's role in qualitative research practices and adds layers of meaning to inform and complement any other additional analyses. The processes that the children utilised to explore and thematically analyse wellbeing provides an additional layer of insight and context that would not be revealed if the researcher's analysis was the only analysis considered and incorporated from the original data. This was evidenced through the children's descriptions and justifications for their decisions and categorisations. When viewed through the researcher's adult lens prior to the analysis session with the children, many of the children's interpretations would not have been identified. This is particularly evident through the groups whose analysis departed significantly from other groups' representations as described above. However, through the children's descriptions and justifications for their categorisations, the researcher could then see additional layers of complexity associated with each child's representation for wellbeing, which in some cases then completely altered the original meaning the researcher thought was presented based on the children's initial descriptions in the first session. For example, drawings and descriptions of a mansion and limousine may be considered materialistic; however, the children's representations for the same data instead described 'being able to provide for my family, it's all about family'. This emphasises the importance of seeking additional layers of information when researching with children, to support adult interpretations and contextual assumptions. The procedure undertaken in this project also provides some transparency in the ways that hermeneutic processes can be used to continually inform, construct and when analysing data other than their own, as well as the analysis processes and justifications provided for the data generated by others which would be unfamiliar to them and would have lacked context. However, the tensions between the 'child-asparticipant' and 'child-as-analyst' adds additional complexity to validity processes and emphases the importance of considering the ways in which adults describe, explain, and prepare children for the roles they will be undertaking in the research process. In the same way that adult researchers are expected to adhere to ethical, moral and informed research practices in their own practice, the question is posed as to whether the same rigour in expectations and understanding should be placed on children when they are involved in research in multiple roles . In this project, the children's conceptualisations of wellbeing present a picture of their capacity and complexity in thought, as well as an ability to communicate a developed understanding of a complex issue. This is further supported by assertions of children's capacity through sociology of childhood positioning. While the main themes generated during the first session remained similar throughout, the children gave them varying degrees of emphasis depending on the focus tasks of each session. Each subsequent session was critical in providing opportunities for children to build on their initial responses -particularly through the analysis task. The children's conceptualisations and analysis reflect an alignment with the notion of wellbeing across the disciplines relevant to children: health , psychology , philosophy and education . To this end, adult conceptualisations of wellbeing were not being used to verify the children's perspectives. Instead, the consistency between the adult and child conceptualisations suggests the validity of the children's responses and cultural basis for their judgements, while also extending current knowledge as children's perspectives of and definitions for wellbeing have rarely been sought, but are gaining increasing attention . It also serves to demonstrate one way that adults and children can develop a 'meaningful alliance' where shared meaning is created when seeking to understand different aspects of children's lifeworlds from children's perspectives. To this end, children's contributions should be deemed as providing one level of expertise about their lives that is taken as seriously and with as much merit as other contributors with a goal towards 'childhood emancipation' particularly within the research space . The children's knowledge and understanding of the notion of wellbeing, as relevant for them, in many respects goes beyond the adult understandings presented in the literature as they simultaneously describe and recognise the enhanced and deficit characteristics that wellbeing can have while presenting an inherently optimistic and pragmatic worldview. This presents further justification for seeking children's perspectives on matters that affect them. In each session, the children were able to categorise the sometimes abstract aspects that had been identified by other individuals within the group, in turn illustrating their capacity to think more deeply about issues to which they may not be fully informed. When conducting qualitative research with children that seeks to reveal their perspectives, particularly with complex topics, providing a greater participatory role such as through involving children in the analysis of their own data can be a worthwhile endeavour. Incorporating flexibility within the research design that is more inclusive of children's rights and perspectives can provide researchers seeking to better understand children's lived experiences, additional layers to increase the richness of their data and communicated findings. Children's perspectives and contribution to the analysis process may be the missing piece to moving closer to completing the qualitative research puzzle.

Children's role in the research process is often limited to a passive role as subject, recipient or object of data rather than as active contributor. The sociology of childhood considers children to be competent social actors and advocates for them to be recognised as such. This recognition is yet to filter into mainstream research agendas with children often remaining a passive provider to research that seeks to elicit their perspectives. This paper presents an examination of the processes that children use when analysing their own qualitative research data as observed within a qualitative research project. It provides insight into the ability to increase the richness of data obtained when researching with children, by including their perspectives and contributions in the data analysis process. Children's capacity as capable and competent contributors to research beyond the more passive role of participant is described and the ways that children can have a greater participatory role in qualitative data collection and analysis processes are discussed.

Introduction In the early stages of the coronavirus disease pandemic, experts warned that lowand middle-income countries , including those in sub-Saharan Africa , could become the epicentres of the pandemic [1,2]. There were suggestions that physical distancing, an effective strategy for reducing the spread of the virus, may not work effectively in SSA because of crowding, inadequate housing, poor city planning, and other poor living conditions that characterize the living arrangements of millions of people in the subregion [1,3]. Yet, relative to other locations in the world, SSA has been spared the worse ravages of the COVID-19 pandemic so far [4]. Nonetheless, the prevailing realities of inadequate and dysfunctional health systems together with the low vaccine availability and uptake in the subregion create a situation where even marginal increases in COVID-19 cases could overwhelm health systems -a situation experts fear could still be a possibility in the event of new and more infectious strains of the virus [2,5]. Some of these concerns are bolstered by the rapid evolution of the disease's epidemiology and current changes to its responses worldwide. In the wake of these fears, public health officials are reemphasizing messages that aim to deliver valuable and accurate information about COVID-19 to ensure self-action that contributes to fewer infections. Empirical epidemiological findings suggest that accurate disease preventive knowledge and self-action are vital to controlling and preventing their spread [6,7]. For example, accurate knowledge aids in eradicating myths and misconceptions about diseases [8,9]. It is also helpful in shaping attitudes and promoting appropriate preventive practices such as physical distancing, regular handwashing, and vaccination [10]. In the context of COVID-19, accurate knowledge is essential for identifying COVID-19 symptoms and distinguishing them from other diseases. Following the declaration of COVID-19 as a global pandemic, studies have explored knowledge, attitudes, and practices toward the virus [9,11]. So far, the burgeoning literature from SSA reports low knowledge, misconception, and misinformation about COVID-19, which collectively result in low self-action [12,13]. For instance, COVID-19 was considered a "white man's disease" by a section of Ugandan men during its earlier stages, a sentiment that adversely impacted response against it [13]. Notwithstanding the usefulness of these studies in enhancing our understanding of COVID-19 and its containment, they are limited in three major ways. Firstly, they focus mainly on knowledge and attitudes, which are necessary but insufficient to curb the pandemic. Secondly, whereas earlier studies allude to the significance of location in shaping health and health behaviours [14], existing studies on COVID-19 in the subregion fail to account for the influence of place of residence on women's knowledge, preventive knowledge, and action toward it. Lastly, existing studies focus on the general population and, hence, are limited in highlighting determinants of women's COVID-19 knowledge and self-action. Addressing these research gaps will imperatively provide empirical evidence for contextual public health programs necessary to contain and prevent COVID- 19. In this study we examine factors associated with COVID-19 knowledge and preventive knowledge among women in four countries in SSA , Kenya, and Nigeria). We also draw on the Health Belief Model to explain factors that influence these women's actions aimed at preventing the disease. In the context of SSA, accurate COVID-19 preventative knowledge and proper self-action are critical, especially given that an overwhelming proportion of populations exist on the disadvantaged side of the global vaccine accessibility and the widespread vaccine apathy [15,16]. The HBM, developed in the 1950s to explain and predict health behaviours and outcomes, posits that a person's behaviour or action toward a health problem is influenced by the perceived threat of the disease or illness and the effectiveness of recommended health action [17]. The HBM consists of six interacting constructs, namely, perceived susceptibility, perceived severity, perceived benefits of action, existing barriers, cues to act, and modifying factors [18,19]. In the context of this study, we contend that women's self-action to prevent COVID-19 infection will depend on their perceived susceptibility to the virus, its perceived severity, how beneficial they think recommended COVID-19 public health measures are, their appraisal of existing obstacles to act, their beliefs about the benefits associated with acting, and their self-efficacy. For instance, women's perceived susceptibility or subjective view of the risk of being infected by COVID-19 and associated benefits can influence their knowledge and propensity to act, and this may be a function of their age, access to COVID-19 information and place of residence [7]. Their level of education and level of trust in COVID-19 information also have the potential to shape their perception about the benefits of taking action [6]. Furthermore, where they reside and where they receive COVID-19 information from have the potential to shape their knowledge and decisions to adhere to COVID-19 public health messages and containment measures [20,21]. Likewise, women's socioeconomic characteristics and place of residence have potential impacts on their self-efficacy and subsequently their behaviour [20,21]. The HBM is one of the earliest and most widely used psychosocial models for explaining and predicting health-related knowledge and behaviours [21,22]. In sub-Saharan Africa, the model has been used to understand and predict health behaviours towards various infectious diseases, including Ebola virus disease [7], COVID-19 [23], and HIV/AIDS [21]. The use of the HBM in this study helps to explain factors that influence women's preventive actions toward COVID-19. In an era of evidence-based practice, findings from this study will not only augment existing literature on COVID-19 but will contribute to prevention programs, especially with the evolving nature of the COVID-19 variants. --- Determinants of knowledge of infectious diseases Empirical research highlight a range of socioeconomic and demographic factors that influence people's knowledge of infectious diseases [11,24,25]. For instance, knowledge of infectious diseases has been found to differ by age [24,25], partly because younger adults often have easy and better access to information on infectious diseases than older people. Knowledge of infectious diseases is also linked to level of education [6,11]. This is because education enhances access to and comprehension of accurate information about diseases [11]. In the case of COVID-19, social and print media have emerged as invaluable sources of information, and these are more easily accessible to educated individuals [26]. Income also has an effect on knowledge of infectious diseases, given its ability to empower people to seek information [24,27]. In addition to socioeconomic and demographic factors, a substantial amount of literature links knowledge of infectious diseases to place of residence [11,28]. Specifically, studies have consistently reported higher knowledge scores on infectious diseases among urban dwellers than their rural counterparts [11,28]. Several reasons account for this disparity, including the presence of more accessible sources of information in urban areas and the relatively higher educational levels of urban residents [28]. People's trust in and the source of information on infectious diseases can also influence their knowledge levels [29,30]. --- Determinants of preventive knowledge of infectious diseases Pervasive misinformation and misconceptions about diseases render accurate preventive knowledge crucial to curbing their spread [8,26]. Albeit limited, the literature reveals several factors that determine accurate preventive knowledge of infectious diseases. Firstly, in Saudi Arabia, Baig and colleagues found that older people were more likely to report misconceptions about COVID-19 and its prevention than younger people [6]. A similar observation was made among ever-married women in Bangladesh regarding HIV infections [31]. Older people tend to have less access to health information than younger adults. Education is also associated with people's knowledge on preventing infectious diseases [6,24,28]. Education facilitates access and evaluation of accurate information on infectious diseases prevention [30]. It is thus useful in expelling misconceptions about preventing infectious diseases. Other identified factors that influence preventive knowledge of infectious diseases include income [32,33], place of residence [24,28], trust [34,35], and source of information [30,35]. --- Determinants of self-action on infectious diseases The literature identifies various interrelated factors that shape people's behaviours toward infectious diseases, which are thus important to consider in the context of COVID-19 in SSA. For example, age is a major determining factor in preventive action against infectious diseases [24,36]. This is because aging associated functional limitation can hinder older adults' ability to act to prevent infections [24,36]. Conversely, some studies suggest that younger adults are less likely to act because of their perceived immunity and high-risk-taking attitudes [25,37]. Education also dictates actions toward infectious diseases as it enhances access to accurate information and knowledge on diseases, including the need to act [7,38]. Furthermore, income has the potential to empower people to engage in preventive actions [24]. For instance, regular handwashing with soap and face masking among others, which are important COVID-19 preventive measures can be challenging to low-income earners. Paradoxically, a study on knowledge, attitudes, and practices about influenza in South Africa found individuals with higher household incomes to be less likely to get vaccinated [39]. Place of residence also has implications for action against infectious diseases. For example, urban dwellers have been found to have higher practice scores on COVID-19 than their rural counterparts [10,40]. This is because urban residents have access to more infectious disease prevention information than their rural counterparts. Also, the better infrastructure in urban areas can facilitate infectious disease prevention practices such as regular hand washing. Trust in information and the source of information also determine the actions people take [29,35,39]. It is argued that risk communication about diseases by trusted persons in an honest, consistent, and coordinated manner motivates people to take act [34,35]. Using Burkina Faso, DRC, Kenya, and Nigeria as case studies, we examine the determinants of COVID-19 knowledge, preventive knowledge, and self-action among women in SSA. These countries, notwithstanding their relatively low COVID-19 rates, serve as useful case studies because they exhibit stark in-country geographic, economic, and health disparities [41,42]. For example, the multidimensional poverty index -referred to as the percentage of the population that is multidimensionally poor adjusted by the intensity of the deprivations -in Burkina Faso in 2020 ranged from 0.214 in urban areas to 0.604 in rural areas [43]. The highest regional MPI incidence in Burkina Faso is in the Est region , while the lowest is in the Centre region . Nigeria has a national MPI of 0.254, with the highest in Kebbi state and the lowest in Lagos state [44]. Kenya's MPI ranges from 0.084 in urban areas to 0.226 in rural areas, while that of the DRC range from 0.166 in urban areas to 0.460 in rural areas. As of January 2023, the Africa CDC COVID-19 Dashboard reported the total number of deaths from the disease to be 5,688 in Kenya, 3,155 in Nigeria, 387 in Burkina Faso, and 1,460 in the DRC [45]. With the potential rise in COVID-19 cases and the emergence of new variants, empirical evidence that will inform public health practices is critical. --- Materials and methods --- Data The data for this study are from the Performance Monitoring for Action COVID-19 survey conducted in Kenya [46], Burkina Faso [47], the DRC [48], and Nigeria [49] in June and July 2020 among females aged 15-49 years. The PMA project collects longitudinal and cross-sectional data from women on a variety of family planning and health issues, including abortion, maternal and child health, primary health care and COVID-19, in 9 countries in Africa and Asia. The goal of PMA is to provide actionable data to guide policy and programming. Data collection is done by trained female data collectors under the auspices of selected local universities and research organizations. Funding for PMA is from the Bill & Melinda Gates Foundation. The PMA employs a two-stage cluster design in sampling respondents. Samples are typically stratified by rural-urban residence and region of residence. The PMA used geographical clusters called Enumeration Areas , provided by the statistical agency in each country as its sampling frame. A random sample of households is then drawn from each enumeration area for interviewing. All eligible females in sampled households are interviewed with their consent. The COVID-19 survey was phone-based and among women who had participated in a baseline survey in November and December 2019 as part of a longitudinal panel data. A total of 3,415, 5,952, 5,952, and 1,299 women from Burkina Faso, Kenya, the DRC, and Nigeria, respectively, make up our analytical sample. --- Measures Dependent variables. The dependent variables for the study are COVID-19 knowledge, preventive knowledge, and self-action. These three variables are continuous and are derived from a set of questions related to knowledge and self-action toward Covid-19. COVID-19 knowledge was derived from nine relevant questions about COVID-19 infection, and the questions had "yes/no" responses. Respondents were asked if certain statements about COVID-19 infections are true. Some of the statements are that; 1) some people cannot be infected with Coronavirus; 2) most people experience mild or no symptoms; and 3) only people with symptoms are contagious. A value of "1" is assigned if a correct response is provided and "0" if a wrong answer is given. Similarly, the variable preventive knowledge was derived from yes/no responses to 10 questions on various actions that respondents think can reduce the risk of being infected . These actions include washing hands with soap and water frequently, washing hands with hand sanitizer frequently, avoiding close contacts with people when one gets out, prayer, and avoiding shaking hands with others. The variable self-action was also generated from 10 questions on the actions respondents took to prevent becoming infected, coded as yes if respondents took the particular action and no if respondents did not take the particular action. These actions include washing hands with soap and water frequently, washing hands with hand sanitizer, staying in your home, getting vaccinated, and prayer. We computed a summative variable for each of the three sets of variables following an internal consistency reliability analysis which produced Cronbach's alpha of 0.7, 0.9, 0.8 for COVID-19 knowledge, preventive knowledge, and self-action, respectively. Independent variables. Four groups of variables were introduced in our analysis as covariates, namely socio-demographic, locational, COVID-19 knowledge source, and trust. These variables were informed by the literature and the HBM [11,17,27,28]. Our socio-demographic variables include age, marital status, and level of education. Locational variables include rural-urban residence and region of residence. COVID-19 information source variables include Knowing or hearing of call center. The others are hearing about COVID-19 from authorities, family and friends, traditional media, and social media. All COVID-19 knowledge source variables are dummy variables. Our final group of explanatory variables are on trust. Respondents were asked if they trust COVID-19 information from the different sources, including family and friends, government authorities, traditional media, and social media. --- Analytical techniques Two separate analyses were conducted in this study. We first performed univariate analysis to describe the sample distribution. Second, we employed linear regression to examine how socio-demographic, source of information, trust, and place-based factors influence our outcomes of interest. We used linear regressions due to the continuous nature of our independent variables. We accounted for sociodemographic factors in model 1. In model 2, we introduced locational factors. Model 3 accounted for the variables on COVID-19 information sources, while model 4 accounted for trust factors. Regression coefficients are standardized for easy and more informative interpretations. Sampling weights provided in the data were applied to all the analyses. --- Ethical considerations Data for this study is secondary and were collected and made publicly available by the PMA project. The PMA project received approval for the study from relevant ethics review boards in the respective countries and the Johns Hopkins Bloomberg School of Public Health Institutional Review Board. All participants consented to the study. --- Results --- Descriptive results Table 1 shows the characteristics of our analytical samples. The mean COVID-19 knowledge level ranged from 5.1 in the DRC to 6.7 in Kenya. The mean COVID-19 prevention knowledge ranged from 5.6 in the DRC to 6 in Nigeria. For COVID-19 self-action, the highest mean score is recorded in Kenya , with the lowest in the DRC . Except for Nigeria , most study respondents across the study countries were aged from 21 to 30 years. In terms of rural-urban residence, most respondents in Burkina Faso and Nigeria were from urban areas while most respondents in Kenya lived in rural areas . Furthermore, an overwhelming majority of respondents reported having a lot of COVID-19 knowledge, with the DRC reporting the highest proportion, followed by Burkina Faso , Kenya , and Nigeria . Relatedly, few respondents are willing to disclose a family member's COVID-19 status. Specifically, 14.9%, 4.8%, 11.6%, and 12.5% of respondents in the DRC, Nigeria, Burkina, and Kenya, respectively, indicated that they would keep it a secret if a member of their family contracts COVID-19. Except for Nigeria , nearly half of respondents from Burkina Faso , Kenya , and the DRC knew or heard of a COVID-19 call centre and the phone number to the call centre. Factors associated with COVID-19 knowledge. Tables 2345show findings from our multivariate regression analysis on factors associated with COVID-19 knowledge in Burkina Faso, the DRC, Kenya, and Nigeria, respectively. Detail results on factors associated with COVID-19 knowledge in Burkina Faso, the DRC, Kenya, and Nigeria can be found in S1-S4 Tables, respectively. The age of respondents was significantly associated with COVID-19 knowledge in Burkina Faso and Kenya. Specifically, women aged 31-40 years and 41-50 years in Burkina Faso and Kenya, respectively had significantly higher COVID-19 knowledge scores than those aged 15-20 years. Except for Nigeria, women's level of education was associated with their COVID-19 knowledge scores. We observed significantly higher COVID-19 knowledge scores among women with tertiary/post-secondary level education in Burkina Faso , Kenya , and the DRC than their counterparts with no formal education. On the other hand, in Nigeria, divorced, separated, or widowed women had lower mean COVID-19 knowledge scores. Residing in urban areas was also associated with higher COVID-19 knowledge scores in Burkina Faso . Across all study countries, knowledge of COVID-19 call centre and the centre's phone number was found to be associated with higher COVID-19 knowledge scores. Also, in Kenya and the DRC , women that learned about COVID-19 from traditional media had higher knowledge scores than those that did not. Likewise, learning about COVID-19 from social media was associated with higher COVID-19 knowledge scores in the DRC and Kenya . Whereas trust in authorities was significantly associated with higher COVID-19 knowledge scores in Kenya, trust in traditional media was associated with reduced knowledge scores. Similar patterns were observed among the sample from the DRC. Factors associated with COVID-19 preventive knowledge. Tables 2345show the factors associated with Covid-9 preventive knowledge. Detail results on factors associated with COVID-19 preventive knowledge in can be found in S5 knowledge scores than their counterparts that did not. Additionally, whereas learning about COVID-19 from social media was associated with higher preventive knowledge scores in Kenya , it was associated with lower preventive knowledge in the DRC . Trust in authorities and social media were associated with higher COVID-19 preventive knowledge scores in Burkina Faso. In Kenya, while trust in family and friends was found to be associated with lower COVID-19 preventive knowledge scores, trust in authorities and in social media were found to be associated with higher COVID-19 preventive knowledge scores. In the DRC, only trust in authorities was associated with higher COVID-19 preventive knowledge scores. Factors associated with COVID-19 self-action. We present our findings on the determinants of COVID-19 self-action in Tables 2345. For detail results on factors associated with COVID-19 self-action in Burkina Faso, the DRC, Kenya, and Nigeria, see S9-S12 Tables, respectively. Our regressions revealed that sociodemographic characteristics, location, and source of information influence COVID-19 self-action. For Nigeria, urban residence having a lot of COVID -19 information , knowledge of COVID-19 call centre and the phone number , Knowledge of COVID -19 call centre but not its phone number , learning about COVID-19 from authorities , and trust in social media for COVID-19 information were associated with higher self-action scores. In Kenya, trust in authorities for COVID-19 information was associated with higher preventive action scores. In contrast, we found that urban residence , learning about COVID-19 from authorities and social media were associated with lower self-action scores. For Burkina Faso, respondents with secondary/post-secondary education had significantly lower self-action scores than those without formal education. In addition, knowledge of COVID-19 call centre and the phone number and Knowledge of COVID-19 call centre but not the phone number increased COVID-19 self-action scores. Furthermore, receipt of information from family and friends and trust in social media were significantly --- Discussion and conclusion In this multi-country study, we examined the factors associated with COVID-19 knowledge, preventive knowledge, and self-action among women. Overall, our findings reveal high COVID-19 knowledge, preventive knowledge, and self-action among women across the four study countries. Other studies in the subregion have reported high COVID-19 knowledge levels and practices among different population groups [9,50,51]. However, variations exist across these countries. Specifically, the highest mean COVID-19 knowledge and self-action scores are from the Kenyan sample, while the highest mean preventive knowledge score is from the Nigerian sample. Despite the relatively high knowledge, preventive knowledge, and self-action scores among women in the subregion, our findings accentuate the need for enhanced efforts to improve knowledge, preventive knowledge, and self-action towards COVID-19 as the HBM and other psychosocial models suggests that increased knowledge and preventive knowledge will likely instigate preventive action [52,53]. The multivariate analysis shows that increase in women's age is associated with an increase in COVID-19 knowledge and preventive knowledge scores in Burkina Faso and Kenya. This finding contradicts previous studies that suggest a negative relationship between increase in age and COVID-19 knowledge [6,24,51]. For instance, Akalu and colleagues found increased age to be associated with poor COVID-19 knowledge among chronic disease patients in Addis Hospital in Northwest Ethiopia [24]. Similarly, Baig and colleagues found people in younger age groups better understood COVID-19 than those in older age groups [6]. Among others, the authors attribute these observations to old age induced decline in hearing and cognitive abilities. Younger adults' risk-taking predisposition may be adduced to explain the low COVID-19 knowledge among them. Since its declaration, a wealth of evidence indicate that older adults are at a much higher risk to COVID-19 related morbidity and mortality [54]. This understanding has the potential to stimulate more older women to learn about the disease and how to prevent it. While sociodemographic factors are important for health knowledge and self-action, their effect is greatly moderated by location, source of information, and trust in the source of information. We found that women's location influences their COVID-19 knowledge, preventive knowledge, and self-action in the subregion. This finding conforms with earlier studies that highlight spatial variations in COVID-19 knowledge and preventive practices [24,28]. In SSA countries, vast geographical disparities exist in access to electricity, access to health facilities where health education can be provided, access to internet services, and illiteracy rates, among several others. These developmental disparities, which are often attributed to environmental and political factors such as colonialism, can be adduced to explain the variations in our findings. For example, rural areas often lack electricity and internet services which are essential for accessing COVID-19 related information [24]. Additionally, many of these areas lack personal protective equipment , which can dissuade women from acting. In China, rural residents were observed to lack appropriate COVID-19 protective materials and information, which affects their ability to act [33]. These findings highlight the need to pay attention to geography in controlling COVID-19 infections as knowledge and actions toward infectious diseases feed into the broader geographies of the subregion. Consistent with the HBM, having access to a lot of COVID-19 information increases mean knowledge, preventive knowledge, and self-action scores. This finding is also affirmed by earlier studies [28,50]. For example, Addis and colleagues in a study on the knowledge, attitude, and practice of patients with chronic disease towards COVID-19 pandemic in Dessie town hospital in Northeast Ethiopia found that people with poor COVID-19 knowledge were less likely to have good practice [28]. Information is vital for both COVID-19 risk and self-efficacy assessments [50]. It also enhances individuals' understanding on ways of navigating barriers associated with seeking knowledge and acting. Relatedly, knowledge of COVID-19 call centres and the phone number led to high COVID-19 knowledge, preventive knowledge, and selfaction scores among women. Following its declaration as a global pandemic, most countries established call centres to provide for the information needs of their citizenry in line with public health recommendations. Clearly, our findings demonstrate the importance of health information centres to health knowledge and behaviours and the need to scale up their operations as part of efforts to curb the spread of COVID-19. The complex relationships between the source of information and COVID-19 knowledge and self-action are worth noting [6,24]. We found in our analysis that different sources of information influence knowledge, preventive knowledge, and self-action scores across the study countries. This finding is in line with the health belief model which suggests that the source of information is crucial for health actions [17,19]. Like many social issues, a wide range of information sources emerged following its declaration as a global pandemic, including media, family and friends, and authorities. Learning about COVID-19 from authorities appears to have the greatest effect on knowledge, preventive knowledge, and self-action among women. This finding is expected as authorities are often knowledge experts on the topic and hence tend to provide accurate and relevant information to people. As theorized, trust in the source of information is equally important in influencing health behaviours [17,21]. This is very critical considering the prevalence of COVID-19 misinformation and disinformation. The effect of trust, however, depends on the source of the information and the country. For example, in Nigeria, trust in social media for COVID-19 information was found to be associated with higher COVID-19 knowledge scores but lower preventive knowledge scores. People are more likely to seek and act on health information when it is from a trusted source [7]. Generally, trust in authorities appears to have the greatest effect on COVID-19 knowledge, preventive knowledge, and self-action among women in this study. This is unsurprising considering their expertise and the authenticity of the information from authorities. These are often individuals trained in these fields with expert knowledge, and hence people tend to be influenced by input from them. While this study makes an important contribution to the literature and efforts toward preventing and containing COVID-19 in sub-Saharan Africa, a number of limitations are worth noting. First, data for the study is cross-sectional and hence limits our ability to establish trends in associations over time. The cross-sectional nature of the data also makes it impossible to establish causal linkages between our study variables. Secondly, the study could not account for the role of risk perception in influencing knowledge, preventive knowledge, or preventive action. Finally, this study did not include older women who are at a higher risk of more severe outcomes from COVID-19 infection. Overall, our findings suggest that the effects of social and demographic factors on health knowledge and behaviours of women in SSA in the context of COVID-19 are moderated by location, the source of information, and trust in the source of information. Hence, COVID-19 prevention measures should focus more on women's place of residence and the source of information. Again, efforts should be made to enhance trust in approved COVID-19 information sources as that enhances knowledge levels and the propensity to act. Further qualitative exploration of the concerns of women relative to these determinants will enhance knowledge and efforts toward controlling the coronavirus pandemic. --- Data for this study can be obtained via https://www.pmadata.org/data/ available-datasets. --- Supporting information S1

Knowledge of infectious diseases and self-action are vital to disease control and prevention. Yet, little is known about the factors associated with knowledge of and self-action to prevent the coronavirus disease . This study accomplishes two objectives. Firstly, we examine the determinants of COVID-19 knowledge and preventive knowledge among women in four sub-Saharan African countries (Kenya, Nigeria, the Democratic Republic of Congo, and Burkina Faso). Secondly, we explore the factors associated with self-action to prevent COVID-19 infections among these women. Data for the study are from the Performance for Monitoring Action COVID-19 Survey, conducted in June and July 2020 among women aged 15-49. Data were analysed using linear regression technique. The study found high COVID-19 knowledge, preventive knowledge, and self-action among women in these four countries. Additionally, we found that age, marital status, education, location, level of COVID-19 information, knowledge of COVID-19 call centre, receipt of COVID-19 information from authorities, trust in authorities, and trust in social media influence COVID-19 knowledge, preventive knowledge, and self-action. We discuss the policy implications of our findings.

Environmental variability is a quintessential feature of the human niche, and social connections spanning distance have long helped humans respond to variability . That said, the social science literature has focused on the study of symbolically marked groups, meaning that the importance of long-distance relationships is often overlooked-especially since many long-distance relationships also cross group boundaries . Here, we make the case that long-distance relationships and intergroup relationships should be studied as distinct, albeit related, features of human sociality. We begin by reviewing the functions of intergroup and long-distance relationships and discussing the possible history of selection that may have favored each. Groups can serve as containers for cooperation in humans , directing favoritism toward in-group individuals and competition toward outsiders . Intergroup relationships can reduce intergroup conflict and provide other benefits, such as facilitating trade and fostering resource specialization . However, specialization is not always organized by group; when resource availability differs across space-due to specialization, for example, or because shortfalls in resource availability are spatially correlatedintergroup relationships may or may not provide access . Instead, long-distance relationships can be key. Given that intergroup and long-distance relationships can serve different functions, we draw on field data to assess the relevance of group membership and location in the choice of new social partners. In a multiyear project in rural Bolivia, author ACP used a variety of quantitative and qualitative methods to study intergroup and long-distance relationships with three populations of horticulturalists. She designed an economic game to examine whether individuals weigh group membership when choosing a new social partner ; in 2014-2015 she found that the salience of group membership varied across populations, reflecting variation in the frequency and valence of intergroup interactions. However, ethnographic data suggested that long-distance relationships were a central feature of rural Bolivian life. ACP came to speculate that distance might be more salient to partner choice in rural Bolivia than group membership per se. To explicitly contrast preferences for forming intergroup versus long-distance relationships, ACP conducted a second study in 2017 among two of the three horticultural populations using a specially designed forced-choice task. She found that even though many participants actively maintain long-distance relationships, they did not express preferences for these relationships in the forcedchoice task. This study underscored that group membership and location are just two of many criteria used in determining the value of potential cooperative partners and due to response biases, demand characteristics, and a disconnect from real-world incentives and constraints, the preferences elicited by experimental methods may not correlate with real-world behavior. Taken together, the results from Bolivia indicate that intergroup relations, both positive and negative, can be overemphasized, and long-distance relationships overlooked, if researchers studying human sociality do not differentiate between the two and do not cross-validate their results using multiple methods. We conclude by discussing ideas for how researchers can better study long-distance relationships and review what we think should be the central foci of a research program characterizing the role of long-distance relationships in human sociality. --- Distinguishing Intergroup from Long-Distance Relationships Intergroup relationships have long been a focus of social science research. In social psychology, intergroup relations is a commonly recognized subfield, whereas in evolutionary anthropology and evolutionary psychology, research on human sociality often focuses on parochial altruism-in-group favoritism coupled with outgroup competition . Partially because of the extensive literatures on intergroup relations and parochial altruism, researchers are often primed to focus on groups when studying human sociality. Groups do structure human social networks, but as we detail here, long-distance relationships-which often cross group boundaries-are a central feature of these networks too . Long-distance relationships are, of course, an implicit focus of fields studying trade, migration, intermarriage, and interactions with strangers-e.g., in archaeology , geography , and psychology . Each is important to human responses to environmental variability, and thus to human adaptation . That said, these different types of relationships are usually not studied as part of a single category: relationships that typically span distance. --- What Are Intergroup Relationships? Social scientists often use the word "group" without specifying what a group is . In social psychology, two individuals are usually considered to be part of the same group if they have a shared fate or a shared identity ; these groups are considered "natural" groups if they are not created in the laboratory as part of an experiment . When evolutionary anthropologists or evolutionary psychologists refer to groups, they too are generally referring to identity groups, especially when identity is observable to others , when identity is symbolically marked , or when identity is assigned to individuals by virtue of their relationships with third parties . Alternatively, consistent with the literature on animal behavior, evolutionary scholars may refer to groups as aggregations of individuals that are in physical proximity with one another more often than they are with others . When researchers study "natural" groups, they often focus on symbolically marked groups-for example, ethnic groups, religious groups, or groups based on regional/ national identity-in which individuals share norms of behavior and an origin story . This is especially true in the parochial altruism literature, which usually focuses on favoritism toward members of the same ethnic group or members of the same religious group . In keeping with common usage, we will generally refer to intergroup relationships as ties between two individuals that cross ethnic or religious boundaries. Intergroup relationships are thought to have two key adaptive functions: they facilitate resource specialization and reduce costly intergroup conflict. For example, ethnic group identity is often structured around resource control or specialization and intergroup relationships can enable gains from trade across these boundaries . Intergroup relationships permit not only the flow of physical resources between groups but also the flow of ideas, norms, and technologies . Additionally, intergroup relationships can reduce intergroup conflict . For example, intermarriage can be used to defuse tensions across group boundaries . --- What Are Long-Distance Relationships? Connections spanning distance are quite common across human societies, but their importance is often overlooked in the study of human sociality . Individuals may form long-distance relationships when they engage in business, trade, or travel-and, today, such relationships can even be formed through the Internet. When the potential benefits of long-distance relationships are substantial, cultural institutions can emerge that reduce the costs of forming and maintaining long-distance relationships . Such institutions may regulate the norms and expectations surrounding affinal relationships , ritual relationships , or patron-client relationships . There are two key benefits to long-distance relationships: risk management and nonlocal resource access . Long-distance relationships allow individuals to manage the risk of resource shortfalls that can strike entire communities. Likewise, long-distance relationships can enable access to resources that are not locally available because they are clustered in space or because of specialization. Generally, as the distance between two individuals increases, shortfalls in resource access become less correlated and the diversity of resources the two can jointly access increases . The distance required to achieve low correlation in shortfalls across a dyad will depend on the scale of the threats to resource security; for example, hurricanes can generate shortfalls impacting large geographic areas, whereas pests often impact smaller areas. Similarly, the distance required to achieve diversity in joint resource access depends on the local ecology-for example, how far one must travel to reach a different ecozone . The high resource diversity made possible by long-distance relationships is particularly important to humans because of our reliance on rare, often difficultto-obtain nutrients, minerals, and raw materials . Two quintessential ethnographic case studies provide examples of these key benefits-nonlocal resource access and risk management. San traditionally maintained hxaro relationships with both kin and putative kin living up to 200 km away . An individual's hxaro partners often had access to resources that the individual's band did not but also to the same resources which vary in their availability across time and space. When bands experienced correlated shortfalls-due, for example, to high winds or insect plagues-individuals would often leave to visit their hxaro partners for extended periods of time . In short, hxaro is a cultural institution that facilitates the formation and maintenance of long-distance relationships. Similarly, Massim traditionally practiced kula, a system of visitation and delayed exchange in which men would regularly visit their kula partners on different islands . Like hxaro, kula both buffered local shortfalls and provided nonlocal resource access: communities on some islands specialized in pottery, which other communities desired; when droughts struck, men from islands with limited arable land would visit partners on islands with larger food supplies . Unlike hxaro, however, kula took place across linguistic boundaries , underscoring that long-distance relationships can cross group boundaries, but need not. Importantly, the resources that move between long-distance social connections are not limited to consumable or utilitarian resources. Kula, for example, provided access to prestige goods from other places . Even in the absence of global communication systems or written language, cultural information-such as that contained in stories-can travel across large distances ; in turn, this transmitted information is often pertinent to resource production , coordination , and social organization . Long-distance ties can be solidified by marriage-generating affinal relationships-and can also expand the marriage market . Today, long-distance connections have become especially important for obtaining access to jobs or loans . That said, long-distance relationships are not without their costs. In the absence of mass communication and transportation systems, maintenance of long-distance relationships can require visitation -costly, for example, due to lost production time and risk of attack during transit . Given such costs, we should only expect individuals to form, maintain, and desire long-distance relationships when the expected benefits of these relationships outweigh the expected costs . --- How Do Intergroup and Long-Distance Relationships Differ? Intergroup relationships and long-distance relationships have partially overlapping functions, though they are by no means identical. Both intergroup relationships and long-distance relationships can offer access to resources that are not accessible to in-group members or social partners living close by and/or are less correlated with an individual's own resource holdings than those held by in-group members or partners living close by. However, long-distance relationships do not necessarily cross group boundaries. Because shared norms and institutions can minimize the costs of within-group interactions , the net benefits of long-distance relationships with in-group members will often be higher than the net benefits of longdistance relationships with out-group members . Long-distance relationships are also less likely to reduce parochial attitudes, which are best attenuated by frequent, positively valenced interactions ; such interactions are more likely when members of different groups live near one another . Indeed, because members of different groups often live close together, particularly when population density is high, intergroup relationships will not necessarily provide access to less-correlated resources-this risk-management function is actually more characteristic of long-distance relationships than intergroup relationships. Evidence suggests that both intergroup and long-distance relationships have long been features of human sociality. Members of the genus Homo likely had ties spanning distance by at least 300,000 years ago , if not 500,000 to 1 million years ago ; periodic aggregation might have reduced the cost of forming and maintaining these relationships. By the late Pleistocene, long-distance relationships appear to have been a central feature of human sociality . The movement of durable goods-such as stone, shells, and other materials that persist in the archaeological record-across tens to hundreds of kilometers provides supporting evidence; though these goods may have passed through multiple hands, researchers point to the movement of goods as evidence for social networks spanning large distances . If this interpretation of the archaeological record is correct, long-distance relationships may have become a central feature of human sociality earlier than intergroup relationships. Turning to intergroup relationships, resources that are monopolizable-either because they are clumped in space or because groups can specialize in their production -are likely to be defended. When resources are both valuable and defensible, institutions promoting the acquisition and defense of these resources are likely to emerge in human populations , often leading to sedentism . Sedentism, in turn, increases the relevance of using identity markers to pick social partners since it becomes difficult to keep track of individualized characteristics as population size grows . Archaeologists often interpret stylistic decoration, such as that on pottery or beadwork, as indicative of identity markers. In the archaeological record, movement of symbolically marked goods across space may thus reflect intergroup relationships but may also indicate pillaging or the expansion of identity groups-for example, through conquest or colonization. In high-density, sedentary populations, an individual's valuation of members of different groups is often guided by generalizations , extended to those that share the same ethnic markers . In short, ethnic groups, and thus intergroup relationships, likely became prevalent during the Pleistocene as sedentism became more prevalent , perhaps as recently as 130,000 years ago . The use of religion as a marker of group identity likely came later, between 50,000 and 100,000 years ago . However, the timing of the emergence of intergroup and long-distance relationships remains an active area of research. --- How Might the Choice of Cooperative Partners Integrate Information about Location and Group Membership? A person's location and group membership are just two of the many criteria that humans weigh when choosing social ties. Individuals often prefer partners with reputations for cooperativeness , generosity , and being a "good person" . Beyond cooperativeness, individuals often consider whether candidate partners have the means to help -e.g., if they hold wealth . Additionally, individuals must consider what the market looks like-they must consider what alternative partners are available . Group identity and location are thus just two additional criteria on which individuals may base decisions about social ties . Importantly, however, intergroup and long-distance relationships change the market by increasing an individual's number of prospective partners; this may lead to trade-offs in investment in close-distance versus long-distance partners, or in samegroup versus intergroup partners-a phenomenon that requires further research . --- Differentiating Intergroup Relationships and Long-Distance Relationships: a Case Study Intergroup relationships and long-distance relationships have some nonoverlapping functions and may have emerged at different times in human evolutionary history. However, because intergroup relationships are a primary focus of research on human sociality, long-distance relationships can be easily overlooked, or intergroup relationships and long-distance relationships conflated-as author ACP can attest. While investigating whether opportunities for increased resource access favor intergroup relationships and reduce expression of parochial altruism, ACP came to recognize the importance of distinguishing between intergroup relationships and long-distance relationships. To illustrate this distinction, we relate ACP's experience studying the two in rural Bolivia. While collecting survey, economic game, and ethnographic data among three horticultural populations in 2014-2015 , ACP found substantial variation in how ethnic and religious group boundaries impacted participants' preferences for forming social ties. Simultaneously, her ethnographic data suggested that long-distance relationships played important roles in the lives and social networks of rural Bolivians. However, ACP found that capturing preferences for long-distance relationships was challenging. A forced-choice task deployed with two of the three populations in 2017 underscored the relevance of multiple criteria in partner choice, including indicators of willingness and ability to cooperate, but participants did not express a preference for long-distance partners, likely owing to methodological design. This case study offers a cautionary tale for scholars studying human sociality in non-WEIRD populations : quantitative survey tools that work well in one context may not work in another . The failure of results to generalize across protocols is only apparent when researchers deploy multiple methods to assess the same question. --- Ethnic Groups, Religious Groups, and Twenty-First-Century Rural Bolivia ACP first decided to study intergroup relationships in Bolivia because of the effects of recent changes in government policy. In the 1980s, 1990s, and early 2000s, Indigenous groups in Bolivia banded together in large-scale movements pushing for Indigenous rights. At long last, in the late 2000s, the Bolivian central government came to recognize the sovereignty of 36 different pueblos indígenas.1 Despite the rights newly extended to Indigenous people, the state preferentially allocates its limited funds to Indigenous communities that are also originarios-living on their traditional lands. Because of this, what was a shared identity of indigeneity in the 1980s-2000s has now splintered as different Indigenous communities, originarios and otherwise, compete with one another for government resources and recognition . Religious denominations can also delineate group boundaries in rural Bolivia. Evangelical churches of various denominations are expanding their presence in Bolivia , as elsewhere in Latin America : as of 2019, approximately 18% of Bolivians identified as "Christian" or "Evangelical" rather than "Catholic" . Rural Bolivians candidly contrast Catholic and Evangelical beliefs, distinguishing what "we" do from what "they" do. In the midst of these changes to ethnic and religious identities, market participation is on the rise among rural Bolivians. Households increasingly rely more on cash income and less on subsistence production to fulfill their needs . With increased market participation comes increased mobility, contact with middlemen, and exposure to individuals of other pueblos indígenas and individuals who live far away . Adopting the assumption that parochial altruism structures intergroup relations, ACP set out to study whether variation in the incentives for intergroup relationships-in Bolivia, between pueblos indígenas or across the Catholic/Evangelical divide-could affect preferences for intergroup relationships. She predicted that individuals with fewer resources might show more interest in building intergroup relationships in order to gain resource access . This prediction was partially supported. However, ACP failed to appreciate the distinction between intergroup relationships and long-distance relationships. --- Collaborating Communities Three populations of Bolivian horticulturalists-the Mosetén people, the Tsimane' people, and the Interculturales-are the focus of the present study. The Mosetén and Tsimane' are pueblos indígenas, recognized by the Bolivian government as originarios because they live on their traditional lands. Mosetén and Tsimane' have lived in the lowlands for centuries , and the two groups were once a continuous, intermarrying population . Today, however, their lives are quite different. The Mosetén were missionized by Franciscan Catholics during the nineteenth century , whereas the Tsimane' were missionized in the twentieth century by evangelical Christians . Efforts by missionaries resulted in access to roads and secondary education for most Mosetén communities by the year 2000 ; in contrast, only a minority of Tsimane' communities have access to major roads or secondary schooling . Mosetén have more years of education, participate more in the market economy, and have higher mobility than do Tsimane'. Today, whereas Mosetén speak fluent Spanish, the lingua franca of Bolivia, and intermarry extensively with other pueblos indígenas , only 14% of Tsimane' speak fluent Spanish and few have intermarried with other pueblos indígenas. That said, Tsimane' individuals maintain far-flung connections with other Tsimane', solidified through visitation, migration, and marriage. The Interculturales are also a community of Indigenous descent; however, they are not considered originarios and accordingly are not eligible for special government recognition and resources. The word "intercultural" is a designation used by the Bolivian government to recognize communities who are no longer on their traditional lands or who are composed of members of different pueblos indígenas . The Intercultural community discussed here is composed primarily of descendants of the Aymara and Quechua pueblos indígenas. These groups were incentivized to move to the area by government relocation programs in the 1950s-1960s and by booms in the logging and quinine industries . Upon arrival, many Interculturales learned horticulture for the first time, sometimes by copying Mosetén. However, they retained many Aymara-influenced institutions, especially with respect to social and political organization. Interculturales are more reliant on the market economy than are Mosetén: they have had reliable access to roads for 25 years longer, and they began to build economic relationships with middlemen much earlier . On average, Interculturales have as much education as Mosetén, but slightly higher incomes, more market possessions, and higher mobility. --- Measuring Interest in Intergroup Relationships Consistent with her expectations that parochial altruism structures intergroup relations and that group boundaries would be especially salient in Bolivia, in 2014-2015, ACP and Michael Gurven set out to study the predictors of preferences for intergroup relationships. They used an economic game that they designed-the non-anonymous giving game -to assess how much participants preferred in-group partners at the expense of out-group partners and vice versa . ACP presented each participant with photos of six strangers 2 : three from the same pueblo indígena or religious affiliation and three from a different one. 3 She told participants the first name, age, and either the pueblo indígena or religious affiliation of each stranger. ACP then placed three coins on each photo and three coins in front of the participant. She indicated that the participant could move any coins they wished, or leave the coins as they were, and that any coins left on a photo would be given to the corresponding person in the participant's name, whereas any coins that the participant left in front of themselves would be theirs to keep. Such games, in which participants are not asked to think about existing real-world relationships or situations, provide more insight into participants' private preferences-how they would behave if they could. In this case, the game measured preferences for a generous transfer in an experimental context, rather than real-world behavior , a point we return to below. For further details on the NAGG, see Pisor andGurven . Consistent with their prediction that interest in resource access would increase interest in intergroup relationships, reducing parochial altruism, ACP and Gurven found that Mosetén, Intercultural, and Tsimane' participants who felt that they were less-well-off than others in their community were more likely to give money to outgroup strangers . Similarly, Tsimane' participants who had fewer market possessions than other Tsimane' participants also gave more to outgroup strangers . Though participants gave more to in-group members than to out-group members on average, mean out-group giving was far from zero: 82% of participants gave at least some money to out-group members . That said, participants were not uniform in their out-group giving. First, Tsimane' preferences looked quite different from Mosetén and Intercultural preferences. Tsimane' participants were far less likely to give any money to individuals of other pueblos indígenas or religious affiliations . 4 It is possible that Tsimane' participants valued the money in the game more: Tsimane' have less wealth on average than Mosetén or Interculturales and see themselves as "have-nots" relative to other pueblos indígenas . Second, participants used qualities other than a recipient's group membership in decision-making. After completing the game, participants-especially Mosetén and Intercultural participants-described inferring recipient characteristics from their photos, including their relative need and whether they were a good person, and using those characteristics to make decisions about giving . These differences in generosity toward out-group members are perhaps unsurprising: Tsimane' have less exposure to members of other pueblos indígenas than do Mosetén or Interculturales. While some of this reduced exposure among Tsimane' is due to constrained mobility and limited access to education , some is also due to active avoidance of out-group members. At the time of European contact, Tsimane' were well-known among other Indigenous groups in the region as salt traders . However, their interactions with highland Bolivians and non-Indigenous lowland Bolivians have been marked by misunderstandings, marginalization, and discrimination; Tsimane' have retreated from contact with the Spanish and cambas when these groups took advantage of them . --- Conflating Two Questions Although market participation is increasing for all three populations, none are interacting with other pueblos indígenas for the first time. As mentioned above, Tsimane' were renowned salt traders at the beginning of the twentieth century: salt in the Amazon is heavily concentrated in certain areas , creating a demand for long-distance trade. Mosetén have long traded with lowland groups for tools, medicine, and plants and, centuries ago, traded with the Inka for metal goods . Before Columbus, Quechua and Aymara, whose descendants are residents of the Intercultural community, had trade networks spanning the Andean ecozones, ensuring access to foods from different regions . Importantly, members of these networks were often members of the same ethnic group. --- Fig. 1 Predicted bolivianos given by a participant to an out-group stranger as a function of the total estimated value of market items owned by the participant, normalized relative to other participants in the same population . The shaded areas are the 90% credible intervals. Predictions for Intercultural participants are in black, Mosetén in orange, and Tsimane' in blue. For details on this model, see ESM §1.3. Average bolivianos given by a participant to an out-group stranger in the NAGG . The initial allocation was 3 bolivianos per recipient. Points are jittered The common characteristic of these connections is not that they span group boundaries, but that they span distance. ACP had assumed that intergroup relationships were consonant with distance. However, it is long-distance relationships, not intergroup relationships, that are especially likely to help individuals diversify their resource access across geographic space-different groups may live close together, for example, as Interculturales and Mosetén do. ACP had not even thought to investigate whether individuals with less resource access would be more interested in long-distance relationships. Once she realized her oversight, she returned to the Mosetén and Intercultural communities in 2017 to revisit how individuals were using social connections to access nonlocal resources-this time using methods that she hoped would distinguish between preferences for intergroup relationships and long-distance relationships. --- The Reality of Long-Distance Relationships Though long-distance relationships can function both to buffer local shortfalls and to provide access to resources not locally available , ethnographic and survey evidence suggest that for Interculturales and Mosetén, they are more important for accessing unavailable resources than buffering shortfalls. In 2014, much of lowland Bolivia was hit with severe flooding. Landslides destroyed roads serving Mosetén and Intercultural communities and cut power and cell service for more than a month. Because floods are one of the most common natural disasters in Bolivia , both Mosetén and Interculturales have cultural practices for managing the risk of resource shortfalls due to flooding-for example, both raise pigs and chickens that can be slaughtered during hard times, and Interculturales have a system of loaning rice. In 2014, families ate their pigs, chickens, and rice. Once these fallback foods were depleted, Mosetén marched down their destroyed road to demand support from the municipal and federal governments. Both the Intercultural and Mosetén communities eventually used motorized canoes to ferry emergency supplies-mostly food and medicine-from the local town. When waters receded, the municipal government sent equipment and laborers to repair the roads. Mosetén and Intercultural families who could not absorb the cost of their destroyed crops sought loans from local banks. Long-distance relationships were not central to household responses to the 2014 flood. Because landslides had severed roads and communications, individuals could not contact their long-distance connections. Instead, resources that could buffer the local shortfall came from the government and from banks. This is not an unusual pattern: in many rural contexts, government entities, international organizations, and banks can take the place of social connections for managing risk . Given the limited role of long-distance relationships in 2014, it is perhaps unsurprising that three years later, when asked who would help them with a loan during a hypothetical flood, Mosetén and Intercultural participants were more likely to name samecommunity individuals or government entities than connections living at a distance . Though they may not be an important source of risk buffering for Mosetén and Interculturales, long-distance relationships are crucial for access to resources not locally available . First, both communities rely on middlemen-often based in the capital city of La Paz -to purchase their crops. Second, both increasingly engage in migrant labor to supplement their incomes. Long-distance relationships are key to finding work as a migrant laborer. For example, when asked who they would contact for a "good job that pays well," 65% of participants named an individual or entity outside of their community . Third, market participation provides cash income, which translates into increased mobility. Mosetén and Interculturales increasingly have business in La Paz and send their children to university or job training programs there. Individuals report that La Paz residents help them navigate local bureaucracy, from completing government paperwork to enrolling in universities. Further, given the high cost of lodging in La Paz, city residents can provide low-cost shelter. Fourth, long-distance relationships provide access to goods only available in the city. For example, La Paz residents frequently send parcels, or encomiendas-which can contain anything from bread to cell phones or televisions-by bus to rural residents. The Mosetén and Interculturales have various means for maintaining their longdistance relationships . Reciprocal exchanges of encomiendas are common: residents of La Paz often request fresh produce such as plantains and mandarin oranges, which are expensive in the city. Community members also send and receive money transfers, or giros; giros may be used to reimburse someone for an expensive encomienda or to loan money. Semi-reliable cell phone service has been available to the Mosetén and Interculturales since 2010. Phone calls and, increasingly, WhatsApp or Facebook Messenger are used to maintain contact with longdistance relationships. Visitation remains important to relationship maintenance as Fig. 2 Each participant was asked to name someone who could help them with a loan of 500 bolivianos if a flood destroyed their crops, and find "a good job that pays well." Most participants named individuals, but some named government entities, organizations, or private companies. Counts reflect the distance between the participant and where these named individuals or entities were located well: depending on an individual's means, they may take buses, shared taxis, or their own vehicles to visit long-distance relationships, often for several days. --- Who Are These Long-Distance Connections? Intercultural and Mosetén community members maintain long-distance relationships with both relatives and nonrelatives. Unsurprisingly, many are consanguineal or affinal kin . However, Mosetén and Intercultural Catholics also strategically use fictive kinship-namely, godparent relationships to solidify long-distance relationships with individuals they believe are wealthy or influential enough to help them or their children . Individuals who are from La Paz and spend time both in the community and in the city are favorite choices, especially teachers, doctors, and middlemen. Long-distance relationships are also forged during periods of temporary migration: for example, during stints of migrant labor, while studying at university or in career programs, or, for men, while completing military service. When individuals have long-distance relationships with non-kin, however, they often do not know the pueblo indígena of their social partner. In 2017, ACP asked participants to identify the pueblo indígena of their long-distance relationships. Participants had a difficult time understanding the question; ACP often cycled through several phrases-pueblo indígena, descendencia , parentezco -or gave examples before a participant was able to answer. Once they understood the question, participants often guessed when responding. Some identified all friends from the lowlands as cambas, even though Indigenous peoples are also from the region; others reasoned that if someone lives in La Paz, they must be Aymara, the dominant pueblo indígena in the city. In short, the pueblo indígena of a long-distance relationship was far less salient to participants than might be expected given the political landscape in Bolivia. It was also far less salient than we might predict given how much sway ethnicity is given in the evolutionary anthropology and evolutionary psychology literatures. See Moya and Boyd for a similar example from Perú. --- Focusing on Intergroup Relationships Can Mask the Importance of Long-Distance Relationships Given the wealth of ethnographic and self-report evidence that long-distance relationships are important to Mosetén and Interculturales, ACP set out to design a task that could potentially distinguish participants' preferences for long-distance relationships from their preferences for intergroup relationships. Though individual-level differences in resource access may predict differential investment in long-distance relationships, ACP was also aware that participants with less wealth may have had more incentive to keep money for themselves in the 2014-2015 economic game. She reasoned that a task not involving money might reveal preferences for forming new social relationships independently of preferences for giving or keeping money. Drawing on marketing research, she chose a paired-comparison forced-choice task to assess which traits participants preferred in candidate friends. ACP presented participants with pairs of cards representing hypothetical individuals, each described by six categories of characteristics , and asked which of the two cards they would prefer as a new same-sex friend. In addition to the location of the candidate friend, their pueblo indígena, and their religious affiliation, three other categories of characteristics were included-trustworthiness, being a "good person" , and wealth-since these characteristics were some of the most frequently mentioned during the NAGG game played in 2014-1015 . Participant preferences in the choice task, however, did not reflect the prevalence of long-distance relationships in these communities discussed in the previous section. Participants preferred candidate friends of their own pueblo indígena and religious affiliation . They also had a slight, though inconsistent, preference for friends from their same community over friends from other places. Why the discrepancy between the behavioral data reported above and the preferences elicited by the choice task? Some participants reasoned aloud during the decision-making process, providing insight . These participants would often identify one characteristic of the six that stood out to them and continue to make decisions based on that criterion across all pairs of cards. In other words, even though characteristics of candidate friends varied across cards, participants stopped attending to characteristics other than the one they initially selected. Not only did participants' preferences in the choice task not reflect the real-world importance of long-distance relationships, they did not reflect the preferences elicited by the 2014-2015 NAGG game either. Recall that in the game, despite some preference for in-group members, there was substantial out-group giving. In total, 63 participants completed both the 2017 choice task and the 2014-2015 game. There was no relationship between participants' preferences in the 2014-2015 game and their preferences in the 2017 choice task . Perhaps this reflects real changes in preferences over time-possibly related to changes in political climate or in material wealth. However, it is likely that differences in methodological design also play a role. --- Methodological Design: a Cautionary Tale There are several reasons why participants may have used pueblo indígena membership as a rule of thumb for choosing social partners in the choice task. First, rules of thumb can ease the cognitive burden of repeated decision-making. If pueblo indígena membership was made salient by the design of the task, participants may have first looked for differences in membership between the two candidate friends and, if a difference was present, used it for decision-making . Participants may especially lean on heuristics when they find tasks tedious , as they did in this study. Second, with so few categories of friend qualities , demand characteristics or experimenter effects are a concern. Perhaps participants intuited that ACP was interested in group membership, especially since that was how she framed her research in 2014-2015 when talking to community members . In other words, if researchers are strongly focused on group membership, they can inadvertently increase the salience of group boundaries-even for groups that are not particularly salient locally-and thus alter their research findings. Third, when features of the real world are removed and partner choice is based only on a list of characteristics, group boundaries may be more salient than they are in real-world partner choice. Cueing identity can shift elicited preferences . Fourth, there is not a one-to-one mapping between preferences and behavior . Even if this task were measuring what it was designed to measure-and the foregoing gives us reason to doubt this-participant preferences can be eclipsed by real-world constraints and incentives, leading to a disconnect between "cheaply elicited" preferences and behavior in the real world. For similar discussions of how preferences elicited by experimental tasks can differ from the real world, and why field researchers should use multiple methods to triangulate the reality of preferences and behavior, see Tucker , Hruschka et al. , andPisor et al. . --- Discussion Intergroup relationships and long-distance relationships are two different features of human sociality with partially overlapping functions. Given the high costs of intergroup conflict and its sequelae, researchers often focus their attention on how intergroup relationships can defuse conflict-usually between ethnic groups. However, Fig. 3 Each participant was presented with a pair of hypothetical individuals and was asked which they preferred as a new friend. Each evaluated 18 pairs of individuals. Here, we present nonstandardized estimates from a logistic regression; these estimates reflect the odds of selecting one individual if it were to differ by only a single attribute from the other individual. The base case is a candidate friend who lives in the same community, is from the same pueblo indígena and has the same religious affiliation, and who is not good, not trustworthy, and has no money. The estimates indicate that participants preferred a same-community friend over more distant friends, same-ethnic-and same-religious-group friends over those from other groups, and friends that are "good people," trustworthy, and-interestingly-not excessively wealthy intergroup relationships and long-distance relationships may have emerged at different points in human evolutionary history and may be products of different selection pressures. Long-distance relationships can span distance without crossing group boundaries, providing access to resources that are not available to an individual's local social partners or that are less correlated with locally available resources. While intergroup relationships can also offer access to resources not locally available, especially when different groups specialize in producing different resources, intergroup relationships are distinct in that they can also be strategically used to reduce intergroup conflict. In short, researchers can ask separate questions about intergroup relationships and long-distance relationships, including why one may be common in a given context while the other is not. Drawing on a case study from Bolivia, we illustrated the importance of distinguishing intergroup relationships from long-distance relationships. Since ethnic groups, or pueblos indígenas, are central to contemporary Bolivian discourse and compete with one another for government resources, ACP expected that in rural Bolivia, ethnic group boundaries would be salient, parochial altruism common, and any intergroup relationships noteworthy. However, in three populations located within 50 miles of each other, intergroup relationships varied in both their prevalence and their salience. For Tsimane', long-distance relationships are more common than intergroup relationships. The area most Tsimane' inhabit is large , population density is low, and few non-Tsimane' live in Tsimane' territory. Accordingly, strangers, whether in-group or out-group, live at a distance and long-distance relationships with other Tsimane' are common. However, the distance between Tsimane' and other ethnic groups is not an exogenous variable: due to a long history of inequality and discrimination, Tsimane' have retreated from contact with other groups . Perhaps unsurprisingly, in an economic game designed to gauge interest in forming new relationships, Tsimane' participants preferentially invested in Tsimane' strangers-by definition, individuals living at a distance-rather than strangers from another ethnic group . In contrast, in a Mosetén community and an Intercultural community, intergroup relationships are ubiquitous and long-distance relationships very common. Both communities are also rural, so strangers live at a distance; however, mobility and intermarriage between ethnic groups are much higher than among Tsimane'. Accordingly, for Mosetén and Interculturales, the discrepancy between in-group and out-group giving in the non-anonymous giving game was less than was observed among Tsimane', consistent with the pervasiveness of intergroup relationships . Long-distance relationships are ubiquitous too-important for selling crops, finding jobs, and navigating the capital city, from getting lodging to managing bureaucracy. Asked to name who they would contact for a "good job that pays well," 65% of participants named an individual or entity outside their community . As we have highlighted here, researchers should not be surprised that preferences for intergroup relationships vary across participants and communities. First, despite focus on ethnic groups in evolutionary approaches to human behavior, not all groups are ethnic groups ; if ethnic group boundaries do not structure cooperation-as is largely the case for Mosetén and Interculturales, but notably not for Tsimane'-they will be less salient to individuals . Second, valence and valuation matter; for Tsimane' participants, intergroup interactions are often characterized by a negative valence-given past experiences of misunderstandings, marginalization, and discrimination-and the expected value of intergroup ties is likewise low. In general, we should expect an individual's interest in intergroup relationships to track the expected net benefits of such relationships . These net benefits will be impacted by the relevance of group boundaries for cooperation and by past experiences with out-group members, among other criteria. Likewise, the expected net benefits of long-distance relationships should influence partner choice; we expand on this below. --- Long-Distance Relationships: Improving Methodological Design Though ACP designed a task to tease apart partner preferences based on group membership and location, she found that ethnographic data on long-distance relationships were surprisingly hard to corroborate through simple experimental tasks. The forced-choice task did underscore that partner choice is often based on characteristics pertinent to cooperation, such as willingness or ability to help -location is just one of many partner-choice criteria. It also underscored that the salience of group membership can be primed by empirical methods , as suggested by the lack of correspondence between participants' allocations in the non-anonymous giving game and their decisions in the forced-choice task. Our case study serves as a cautionary tale, with lessons for how researchers can better measure long-distance relationships going forward. Given that long-distance ties are often not as salient as local ties , asking about them directly is more fruitful than hoping they will turn up in experimental tasks with little demonstrated external validity. ACP, her collaborators Kristopher Smith and Monique Borgerhoff Mulder, and their team ask about long-distance friendships directly in their ongoing research in Tanzania; thus far, they find this approach appears to have good face validity-that is, it appears to actually measure what it is supposed to measure . --- Long-Distance Relationships: Future Directions As we demonstrated here, although intergroup relationships and long-distance relationships have overlapping functions, they are distinct types of relationship and vary in their prevalence, even between nearby communities. The focus on intergroup competition in the social sciences tends to make intergroup relationships noteworthy and to mask other features of human sociality, such as the importance of longdistance relationships in human social life over the past 300,000 to 1 million years . To better characterize the structure and importance of long-distance relationships, we recommend the following avenues for further research: Where and when will long-distance relationships be more common? As outlined here, we should expect long-distance relationships to be more common where and when resource shortfalls can strike entire communities and key resources cannot be obtained locally. Long-distance relationships can be especially important when shortfalls regularly strike entire communities-when shortfalls recur -and when government support is absent or unreliable . Climate variability can increase the frequency and duration of shortfalls, so in the absence of sufficient government support, we can expect long-distance relationships to become even more important given contemporary anthropogenic climate change . With respect to nonlocal resource access, archaeological data offer a classic example of long-distance relationships: artifacts provide evidence of how nonlocal resources were obtained through long-distance exchange networks . Even in locations where online platforms offer fast access to nonlocal resources, from job postings to at-home delivery, long-distance relationships continue to be a crucial source of fiscal resources and wordof-mouth information . How are long-distance relationships maintained? Do they have the same characteristics as short-distance relationships? Research on long-distance relationships has traditionally focused on relationships formed when two individuals live in the same place, and then one moves away . Long-distance relationships are often characterized by commitment, mutual trust, and seeking the advice of one another; however, compared with short-distance relationships, commitment to long-distance relationships varies more across time . But what about long-distance relationships forged between two individuals who have never lived in the same place-do individuals pick long-distance friends using the same criteria they use to choose short-distance friends? Further, do the strategies individuals use to maintain long-distance relationships forged from a distance look like those used to maintain relationships that start local and become long-distance relationships? We are tackling these questions in ongoing research. What are the consequences of long-distance relationships for cooperation? Existing theoretical work suggests that individuals may penalize in-group members for forging intergroup relationships if these endanger the effectiveness of within-group cooperation . However, when an individual forges a relationship that spans group boundaries or distance , this can also generate benefits for in-group members or neighbors. Consider, for example, the cooperation required to manage extensive common-pool resources such as fisheries, watersheds, grasslands, and forests, accessible by multiple communities. To avoid depleting these resources, members of the communities must not only avoid overharvesting, they must also coordinate in setting and enforcing management rules . Are individuals with long-distance relationships that span the boundaries of these communities less likely to overharvest and more likely to actively contribute to resource management? ACP, Smith, Borgerhoff Mulder, and colleagues have research underway designed to answer this question. --- Conclusion Intergroup relationships are a central focus of social science research, and rightly so: intergroup relationships offer a solution to the high costs of intergroup conflict . However, studying intergroup relationships to the exclusion of long-distance relationships, or even conflating the two, means that our research questions and data analysis may be imprecise, and our characterization of human sociality may thus be incomplete. We have presented a case study from rural Bolivia that emphasizes this point: after initially conflating intergroup relationships and long-distance relationships, ACP realized that long-distance relationships were more crucial to securing nonlocal resource access than were intergroup relationships. Long-distance relationships were also more difficult to study using standard quantitative methods; the mixed-methods findings we presented here underscore the importance of field-validating the methods researchers use to study human sociality. The importance of studying long-distance relationships is not limited to the theoretical. If archaeological, ethnographic, and historical data are any indication, in the absence of sufficient government support, long-distance relationships may become an increasingly central part of individuals' responses to climate change . Additionally, long-distance relationships may improve the effectiveness of management for large natural resource areas accessible by multiple communities. In sum, improving our understanding of when and how contemporary peoples use long-distance relationships has broad relevance. ---

Intergroup and long-distance relationships are both central features of human social life, but because intergroup relationships are emphasized in the literature, long-distance relationships are often overlooked. Here, we make the case that intergroup and long-distance relationships should be studied as distinct, albeit related, features of human sociality. First, we review the functions of both kinds of relationship: while both can be conduits for difficult-to-access resources, intergroup relationships can reduce intergroup conflict whereas long-distance relationships are especially effective at buffering widespread resource shortfalls. Second, to illustrate the importance of distinguishing the two relationship types, we present a case study from rural Bolivia. Combining ethnography and two different experimental techniques, we find that the importance of intergroup relationships-and the salience of group membership itself-varies across populations and across methods. Although ethnography revealed that participants often rely on long-distance relationships for resource access, we were unable to capture participant preferences for these relationships with a forced-choice technique. Taken together, our review and empirical data highlight that (1) intergroup and long-distance relationships can have different functions and can be more or less important in different contexts and (2) validating experimental field data with ethnography is crucial for work on human sociality. We close by outlining future directions for research on long-distance relationships in humans.

The purpose of this study is to identify if race and ethnicity is a predictor of seeking medical care when other socioeconomic factors are controlled for , explore if the type of abuse is associated with seeking medical care, and explore if the severity of abuse is associated with seeking medical care. Data for this study were collected as part of the Partnership for Domestic Violence Prevention , a community-based participatory research study that aimed to assess the needs and preferences of IPV prevention programs targeting Hispanics in Miami-Dade County. PDVP received partial funding for this research project from the Center of Excellence for Health Disparities Research: EL CENTRO, National Center for Minority Health and Health Disparities Grant P60MD00266. --- Background Needs of Urban Individuals Experiencing Intimate Partner Violence Findings from studies examining racial and ethnic differences in prevalence of intimate partner violence are conflicting although it appears that the overall rates of violence vary little by race or ethnicity. Some researchers have found that Hispanic and Black women are disproportionately affected by the occurrence and consequences of IPV when compared to White women . At least one population-based study has documented that Hispanics in cohabitating intimate relationships experience over twice the incidence and four times the recurrence of IPV when compared to their non-Hispanic White counterparts, even when socioeconomic factors are considered . In a clinical sample, researchers have also documented that Hispanic women are more likely to report IPV within the past 5 years and within the past year than non-Hispanic White women . The findings from the National Violence Against Women Survey, however, indicate no difference in the prevalence of intimate partner violence by Hispanic versus non-Hispanic women when socioeconomic factors are controlled for . Likewise, the risk of IPV among Black women appears to be about the same as that of White women, particularly when controlling for income . Both Black and Hispanic women, however, appear to experience higher rates of lethal violence and higher rates of more severe forms of violence . For example, Hispanic females are more likely to report being pushed, shoved or grabbed; slapped; kicked, bitten, or hit; choked; forced into sex; or threatened with a gun when compared to non-Hispanic White women . Researchers have also found that Hispanic females are more likely to suffer from negative IPV health consequences such as depression , suicidal ideation and attempts and homicide . Despite the need that Hispanic and Black female victims of IPV have in accessing health related services, there are number of barriers that impede them from accessing quality, culturally sensitive care. These include not knowing where and how to access services, cultural and linguistic barriers, low insurance coverage rates, and a general sense of mistrust with health and social services . Further contributing to barriers is the fact that domestic violence-related agencies tends to provide services that are fragmented and do not adequately address the physical and psychological health needs of clients and families . Consequently, in order for victims to access health care, they are often required to receive referrals, travel long distances, make multiple trips, and/or qualify for services. The combination of culturally specific barriers, system-related barriers and the isolation that is often experienced by Black and Hispanic women living with IPV create significant barriers to accessing the health care services that they need. --- Methods --- Design This study is a secondary data analysis of intake forms completed at the coordinated domestic violence agency in South Florida. Intake forms for all clients seen in a 6-month period were analyzed. This time frame was chosen because universal intake forms were adopted by the agency in March 2010, which eliminated inconsistencies in the type and quality of data gathered by the partners providing services on site. The universal intake forms contained information about the client-seeking services, their experiences with domestic violence, perpetrator characteristics, risk for safety, and needs for health and social services. For this study, the dataset used was collected previously as part of a larger community-based participatory research study. This larger study included: focus group interviews with violence service providers and community members , a community forum , and a secondary data analysis of intake forms completed by IPV victims seeking services at a large county domestic violence service agency during a 6-month period. Preliminary analysis of the intake forms indicated that there were significant differences between Hispanic and non-Hispanic clients regarding likelihood of seeking medical care . This study expands upon these findings by exploring the predictors of seeking medical care in this sample. The original instrument was designed to identify the needs and preferences for IPV prevention among Hispanics in a South Florida community. --- Procedures Approval from the Institutional Review Board was received prior to conducting the secondary analysis of intake forms described in this study. The intake form, which is available in English, Spanish, and Creole, was completed when the victim arrived at the domestic violence agency. In order to facilitate the intake process, a victim advocate was present to assist the victim in completing this form. The victim advocate was also available to make recommendations and referrals for appropriate services and to obtain informed consent to share the collected information with agency partners. Victim advocates are counselors and social workers, many with master's degrees, with many years of experience in serving victims of domestic violence. Victim advocates regularly participate in specific training to ensure sensitive and adequate responsiveness to victims' needs. All intake forms were kept within the victim's individual file and are kept in a secure, locked area to ensure confidentiality. All the intake forms completed at the coordinated domestic violence center were reviewed and assigned a unique number. The files containing the universal intake form that was implemented in March 2010 and a completed date that was between March and September 2010 were identified. Research assistants retrieved these files and entered the deidentified data into an Excel database according to a codebook. The quality of the data was ensured through multiple data-entry checks and the correction of discrepancies between these. Each volunteer participated in a training session to promote accuracy of data entry. As required by the IRB, all study personnel and volunteers completed the Collaborative Institutional Training Initiative certification on research ethics and confidentiality. Data from the Excel sheet were imported to SPSS for statistical analysis. --- Participants and Settings Participants of this study included all clients seeking services at the coordinated domestic violence agency located in a large ethnically diverse metropolitan area in South Florida for the first time between March 2009 and September 2010 who reported IPV . This agency includes more than 30 community partners that provide a variety of programs and services including legal aid, social support services, emergency financial assistance, and referral for shelters in one integrated location. Clients seen during the 6-month study period who did not have a completed intake form on file or were return visitors were excluded from the study. The intake form was designed for use by all of the partners and included information about the victim, perpetrator, children involved, and the abuse. Although the domestic violence agency accepts participants from many types of violence-related events, the analysis for this study was limited to clients who were identified as victims of IPV. IPV was defined as physical, sexual, or emotional/psychological violence or abuse perpetrated by a current or former boyfriend/girlfriend or spouse . After the participants who were reporting IPV were identified and cases with missing values were removed , there were 275 records included in the final analysis. Statistical differences between the groups were compared. The only differences found were "Do you speak English?" , "Are you a victim of psychological abuse?" , and "Have you ever experienced sexual abuse?" . The participants with missing data reported a higher percentage of sexual abuse and psychological abuse , whereas participants without missing data reported a higher percentage of English speakers . There were no differences found in gender, age, race, relationship to abuser, verbal abuse, physical abuse, stalking, calling the police, abuser arrested, order of protection obtained, seeking medical attention after an assault, use of a weapon against the victim, or financial dependence of abuser . The sample included 28 males and 431 females . Ages ranged from 16 to 78 years. The sample consisted of 300 Hispanics, 102 Blacks, and 52 individuals reporting another race or ethnicity . The majority of victims reported that they spoke English. In this sample, 63.5% reported psychological abuse and 17.6% reported sexual abuse. --- Measures The following variables were chosen for the analysis: socioeconomic status ; , type of abuse , and severity of abuse . Age-Clients were asked to report their age. This was a continuous variable. Race/Ethnicity-Clients were classified into groups based on self-identification: Hispanic, Black, White or Other . We recognize that individuals can be both White and Hispanic or Black and Hispanic. However, in this case, individuals chose one option from the list. Due to the low number of participants whom identified as White or Other , these two categories were combined . Abuse Status-A series of yes/no questions assessed financial dependence on the abuser, type of abuse , and severity . --- Statistical Plan Questions that ascertained socioeconomic status, race and ethnicity, type of abuse, severity of abuse, and seeking out medical attention on the intake form were selected for this study. Frequencies for these variables were calculated. In order to address the variables with missing values, a missing variable analysis was performed. Descriptive statistics were calculated for the participants. The two groups were compared using a chi-square analysis and t-test statistics. Group comparisons were performed to identify statistical differences between groups. A hierarchical logistic regression was done to determine whether selected variables could predict seeking medical care after a violent episode. A hierarchical logistic regression analysis was performed to predict group membership between victims of intimate partner violence who had sought medical care to those who did not. Variables were entered into the model in three different blocks . To control for the group differences based on SES was entered into block 1. In block 2, the types of abuse were entered. In block 3, the severity of abuse was entered. By entering variables stepwise into the equation, variables entered in earlier blocks can be statistically controlled for while identifying significant blocks and individual predictors. Multivariate normalcy, linearity, and homoscedasticity were assessed and were not violated . Based on distances and residuals , no multivariate outliers were present. --- Results --- Predictors of Seeking Healthcare Block 1-The model with SES predicting medical attention was not significant . To control for SES, age and financial dependence of abuser were enter into block 1. Race and ethnicity were also entered. These variables explained 4.5% of the variance. Hispanic participants when compared to non-Hispanic Whites were 63.1% less likely to seek medical attention after an incident of IPV, AOR = 0.37, p = .02, 95% CI [0.16, 0.84]. Block 2-In block 2, the types of abuse were added. Types of abuse were significant in predicting seeking medical attention . The types of abuse alone explained an additional 12.7% of the variance in the model, and the overall model with SES and types of abuse variables explained 17.2% of the variance . Physical abuse was individually predictive. Participants who reported physical abuse were over eight times more likely to seek medical attention, AOR = 8.17, p = .001, 95% CI [2.43,27.41]. Being Hispanic remained a significant individual predictor, AOR = 0.40, p = .04, 95% CI [.16, .96]. Block 3-The variables in Block 3 describing the severity of abuse were not significant predictors of seeking health-care . Nevertheless, the overall model remained significant when the severity of abuse indicators were added . The overall model with SES, types of abuse, and severity of abuse explained 18% of the variance . Two variables remained individually predictive in block 3. Hisp Health Care Int. Author manuscript; available in PMC 2012 December 21. $watermark-text $watermark-text $watermark-text Hispanics were 59.6% less likely to seek medical attention, AOR = .40, p = .05, 95% CI [. 164, .998]. Participants who reported physical abuse were more than eight times more likely to seek medical attention, AOR = 8.02, p = .04, 95% CI [2.35,27.34] . After controlling for SES and adding the types of abuse, 97.1% of the group that did not seek medical attention and 15.9% of the group that did access health care were correctly classified. The overall percentage correctly predicted group membership was 76.7%. --- Discussion This study provides insight about the help-seeking behaviors and needs of a racial/ethnically diverse sample of victims of IPV seeking social services in a large urban center. The study population that used the domestic violence agency mirrored the racial/ethnic composition of the area, which is 65% Hispanic, 18.9% Black, and 15.4% White non-Hispanic . Nevertheless, as also documented in national studies indicating that women are 7 to 14 times more likely to report being physically assaulted than men , most of the victims in this study were women . The study of IPV and help-seeking behaviors among diverse samples is important because their needs for services are likely to be different. This study identified differences between groups of IPV victims who sought medical attention and victims who did not. When controlling for age and financial dependency on the abuser, victims who self-identified as Hispanic were less likely to seek medical attention. This is consistent with qualitative components of the parent study, which identified the lack of knowledge about existing services and the poor quality of these services as major problems with the services provided to victims and their families . There are several additional obstacles that impede Hispanics from accessing health care, including low levels of health insurance, as also supported by this study, cultural and linguistic barriers, and distrust of services . Nevertheless, the clients included in this study were, in fact, accessing social services. By incorporating medical care into the coordinated domestic violence agency where they were seeking help, access to the medical care they need would likely increase. When controlling for SES and race and ethnicity, victims who reported physical abuse were more likely to access health care. The relationship between health care use among women experiencing physical violence found in this study is similar to previous studies that strongly support increased health care used with increasing severity of violence . --- Clinical Implications The findings in this study have important implications for domestic violence services. Hispanic victims of IPV appear to be less likely to seek medical attention than their non-Hispanic counterparts. Socioeconomic factors, differences in the type of abuse that they experience, and barriers in accessing care may explain some of these differences. These factors need to be further explored through research. Nevertheless, if Hispanic victims of IPV are willing to seek domestic violence services at a social agency, then opportunities for them to access medical care should be provided. If health care services were made widely available to Hispanics at the agencies where coordinated domestic violence services are being provided, then the evaluation of physical injuries and the consequences that IPV has had on their physical and mental health could be better assessed and addressed. In addition to injuries directly related to the violence, numerous studies have supported increased rates of physical and mental illness in women experiencing IPV. Chronic physical conditions for which IPV is a significant risk factor include gastrointestinal disorders , neurological problems , urinary tract and other infections, and shortness of breath . An increased risk for STIs among women who have experienced trauma related to IPV has been well established by investigations with many different populations and settings and using both qualitative and quantitative data. Recent work has supported reproductive coercion as an important mechanism linking partner violence and STI risk/ unintended pregnancy . A recent study of more than 13,000 women in intimate relationships in the United States found that IPV was significantly associated with HIV infection, AOR = 3.44, 95% , and that 11.8% of HIV was attributed to IPV in the past year . Given the important risks associated with IPV and the low rate of health care use by this population, incorporating a primary health care clinic into agencies providing coordinated, comprehensive services could offer an important means for abused women, particularly Hispanic women, to access health care services by providers sensitive to the physical and mental health care needs of this population. --- Research Implications Further work is needed to better understand the relationship between decreased health care use and race/ethnicity found in this group. More specifically, additional predictors of seeking medical care and other health and social services should be investigated among both samples of clients already seeking some type of service as well as community samples, as these are likely to vary. Special attention should be given to the effects that race and ethnicity have on accessing health-related services. Consequently, research needs to explore both inter-and intra-ethnic variations in health care usage. By identifying barriers to healthcare use, interventions and services can be developed and tested. Further, the health care outcomes of IPV victims seeking health care and potential health disparities related to these should also be explored. These insights are fundamental to improving the health and well-being of victims affected by IPV. --- Limitations This study had a number of limitations. First, the data were self-reported. Consequently, the information that is given may or may not accurately depict the reporter's characteristics, experiences with IPV and help-seeking behaviors. For example, victims may not report all types of abuse due to fear of reprisal and shame. Research has found that victims who are perpetrated by strangers are much more likely to make a report with law enforcement than those perpetrated by intimate partners . Nevertheless, many of the items that are collected on the intake form are ones that could only be collected through self-report because victims are often alone with the perpetrator during incidents of IPV. Additionally, even though the intake forms were provided in English, Spanish, and Creole, the English-speaking victims completed more items on the forms than the victims who did not speak English. With fewer non-English speaking victims completing the forms, differences between the groups may not have been appreciated. Further, the population in South Florida is unique when compared to the rest of the country. Even though the population in South Florida is similar to the victims seeking services, the information collected is strongly influenced by the high number of Hispanic victims in the area making generalizations of findings difficult to compare to other populations in the United States. --- Conclusion Among this group of Hispanic women seeking services related to IPV, only a small percentage have accessed health care despite a large body of evidence suggesting that they are at risk for a wide range of mental and physical health problems. Accessible, culturally relevant and trauma-informed health care services are urgently needed for this at-risk population.

Hispanics, Blacks, and women are disproportionately burdened by intimate partner violence. Barriers to seeking medical care play an important role in victims accessing the full myriad of services they need. A secondary analysis of data collected over a 6-month period at a coordinated domestic violence social agency was completed to assess predictors of seeking medical care after experiencing intimate partner violence. A hierarchical logistic regression was conducted to assess the predictive ability of socioeconomic factors, type of abuse, and severity of abuse. Hispanic victims of intimate partner violence were less likely to seek medical attention compared to non-Hispanic Whites, even after controlling for socioeconomic factors, type of abuse, and severity of abuse, Adjusted Odds Ratio (AOR) = .40, p = .05, 95% CI [.164, .995]. Victims reporting physical abuse were over seven times more likely to seek medical attention, AOR = 8.02, p = .04, 95% CI [2.35, 27.34]. Medical care needs to be incorporated into coordinated social services offered to victims of intimate partner violence.intimate partner violence; Hispanics; access to medical care; physical abuse; reproductive coercion Intimate partner violence (IPV), the physical, sexual, and psychological abuse perpetrated by a current or former spouse or boyfriend/girlfriend, is a significant public health problem associated with numerous health consequences (Centers for Disease Control and Prevention [CDC], 2006). It is well documented that IPV is associated with an increased risk for numerous physical and mental health problems including injury, chronic pain, gastrointestinal and gynecological disorders, sexually transmitted infections (STIs), depression, and posttraumatic stress disorder (Campbell, 2002). Although it is clear that victims of IPV need to access medical care, there are numerous obstacles that interfere with their ability to do so. Nevertheless, little research exists exploring the factors associated with seeking medical care among ethnically diverse samples of women and men seeking IPV social services in urban centers.

INTRODUCTION On March 25, 1911, the Triangle Shirtwaist Factory took the lives of 146 garment workersmost of whom were young, immigrant women. The US system to protect workers' health and safety can be traced from this horrific event. The US Bureau of Labor Statistics began collecting information about industrial accidents in 1912, but it was not until the late 1930s that the BLS implemented a uniform record keeping system to collect national work injury data [Bureau of Labor Statistics, 2010a]. The Triangle Shirtwaist Fire led to Progressive Era safety and health reforms that continued through the 1930s and 1940s with the New Deal reforms, which included the National Labor Relations Act , the Social Security Act, and the 1938 Fair Labor Standards Act . Created during periods of mass industrial production in the United States, these and other labor protections were predominantly focused on regulating large scale, factory-type workplaces and often involved unions as the negotiating force with employers [Excluded Workers Congress et al., 2010]. Following the triangle disaster, stronger government oversight and unionized workplaces led to improved wages, safer work environments, and reduced occupational injuries and fatalities for many workers [Mishel and Walters, 2003;Occupational Safety and Health Administration , 2011b]. Still, by the 1960s, injury rates remained high in many industries and state worker protection regulations were weak and inconsistent. Prompted by a series of coal mining disasters Congress passed and President Nixon signed the Coal Mine Health and Safety Act in 1969 and the Occupational Safety and Health Act in 1970. These laws created the Mine Safety and Health Administration , the OSHA, and the National Institute for Occupational Safety and Health . Although these and other policies have contributed to a decline in work-related injuries and fatalities in the United States, disparities in worker health and safety continue to widen. Over the past half century, major shifts in political and economic power have dramatically changed the work environment for workers in the United States and internationally. As noted by Quinlan and Sokas "[…] The implementation of neoliberal policies like downsizing, outsourcing, and privatization, and of altered business practices, such as global supply chains and lean production practices that cut labor and other costs, have resulted in the growth of job insecurity and precarious work arrangements that have had serious adverse impacts on occupational health and have produced health inequalities more generally" [Quinlan and Sokas, 2009]. Today, a significant number of workers are excluded either in policy or in practice from labor protections provided to other workers [Bernhardt et al., 2009;Liebman and Augustave, 2010;Milkman et al., 2010]. Unregulated and unsafe workplaces worsen health disparities [Murray, 2003;Lipscomb et al., 2006;Landsbergis, 2010], increase cost-shifting from employers to individual workers and social safety nets [Dembe, 2001;Zabin et al., 2004], and force "high road" employers to cut corners and violate labor standards to stay economically viable [Bernhardt et al., 2009;Restaurant Opportunities Centers United, 2011]. These economic trends and labor practices challenge the relevance, capacity, and impact of the labor protections established in the 1930s and 1940s to protect twenty-first century workers [Employment Conditions Knowledge Network , 2007;Bernhardt et al., 2008a;EWC et al., 2010]. This article discusses key policies and laws to protect workers and improve work-place safety and health, details barriers and gaps that weaken worker protections, describes research examining the impact of laws and policies on occupational health disparities, and reviews efforts at the state and local levels to enact laws and policies to address these gaps and barriers. Table I provides a summary of key laws and policies. To access the full report, which includes case studies and policy recommendations, visit http://www.aoecdata.org/ conferences/healthdisparities/whitepapers.html. --- METHODS We conducted an extensive literature review of peer-reviewed articles published in journals that cover topics ranging from occupational medicine, public health, health policy, labor sociology and economics, to immigrant health. To find articles that address the effects of labor, economic, and social policies on occupational health disparities we used the following search terms: occupational disparity , occupational inequality , occupational health inequity , worker health inequality, labor inequality, workforce inequality , employment inequality, employment disparity, social class inequality , social class disparity , workforce disparity, workplace disparities, social disparity , economic inequality, socioeconomic inequality , socioeconomic disparity , worker compensation, and welfare inequality. After reviewing dozens of abstracts of the articles found in relevant databases, such as PubMed and NIOSHTIC, we selected and read all of those that matched the main scope of our paper. However, given the multi-disciplinary nature of the topic and the limited number of articles selected, we decided to review the gray literature on social, economic, and labor policy issues. We complemented the peer-reviewed literature with reports produced by non-profit organizations, think tanks known to the authors, and material available in Internet websites of government agencies. --- KEY FEDERAL AND STATE LAWS AND POLICIES The OSH Act was passed "[…] To assure safe and healthful working conditions for working men and women." The OSH Act excluded public sector workers unless a state established its own program to provide OSHA protections to state and municipal workers within its jurisdiction. Federal agencies are required to establish their own health and safety programs, but OSHA does not have enforcement authority, except in the Postal Service. Federal OSHA directly administers health and safety programs in 26 states and the District of Columbia. In addition, there are currently 22 states and jurisdictions operating complete state plans and 5-Connecticut, Illinois, New Jersey, New York and the Virgin Islands-which cover public employees only [OSHA, 2012]. Federal OSHA approves and supervises such State plans. In fiscal year 2011, federal and state OSHA programs conducted 92,271 inspections in private and public sector workplaces, amounting to approximately 1% of all US workplaces [OSHA, 2011a]. --- Wage and Hour Laws Income is broadly regarded as an important social determinant of health [Lipscomb et al., 2006;Braveman et al., 2011]. The most important law regulating wage and hours conditions in the United States is the Federal Labor Standard Act [United States Congress, 1938], which was a regulatory response to increasingly dangerous working conditions for adults and children in industrial settings. Employers are required to pay covered nonexempt workers at or above the federal minimum wage, and not less than time and one-half their regular rates of pay for hours worked over 40 in a workweek. More than 130 million workers are covered by this Act; however, there are notable exceptions. Executive, administrative, and professional employees are exempt from minimum wage and overtime pay requirements, while farmworkers and domestic workers who reside in their employers' residences are exempt from overtime pay requirements. Standards for child labor are promulgated under FLSA and generally apply to employers who hire anyone under age 18 in non-agricultural jobs. Regulations for youth employed in agriculture were enacted in 1970, but are less protective than for youth employed in nonagricultural settings [Miller, 2012]. Children as young as 12 years of age can legally work and perform far more dangerous activities in agriculture than they can in non-agricultural settings [Miller, 2012]. Children of farm owners are completely exempt from the FLSA [Miller, 2010]. The federal minimum wage has been $7.25/hr since July 2009. Seventeen states have established minimum wages higher than the federal. Minimum wage laws apply to full or part-time workers, regardless of how they are paid . According to BLS, in 2010, 4.36 million workers were paid hourly wage rates below or at the minimum wage. Workers under age 25 represented only one-fifth of hourly paid workers, while they made up half of those paid the Federal minimum wage or less. The BLS data also indicated that 7% of African-American workers earned hourly wages at or below the minimum wage compared to 5.9% of White workers [Bureau of Labor Statistics, 2010b]. A large multi-city survey of 4,387 low-wage workers in Los Angeles, Chicago, and New York conducted by Bernhardt et al. [2008b] found that 26% of workers surveyed were paid less than the state's minimum wage requirement in the previous work week. Sixty percent of workers were underpaid by more than $1/hr. Over 25% of those surveyed worked more than 40 hr during the previous week, while 76% of them were not paid the overtime rate mandated by state laws. Thirty percent of women in the sample had minimum wage violations, compared to 20% of the men. Foreign-born Latino workers had the highest minimum wage violation rate , while African-American workers had triple the rate of White workers . Workers without a high-school degree or GED had higher minimum wage violation rates than workers who attended college [Bernhardt et al., 2009]. --- Workers' Compensation Studies indicate that the workers' compensation system fails many workers, particularly those with lower wages, limited job security, and lacking union protection. Many do not file for worker's compensation benefits due to fear of employer retaliation [Biddle et al., 1998;Shannon and Lowe, 2002;Leigh and Robbins, 2004;National Employment Law Project , 2009]. Lack of familiarity with workers' compensation rules by both workers and employers is another common reason why workers' compensation claims are not filed. In a national study of low wage workers, 12% of respondents had experienced a serious injury in the previous 3 years. Of this group, only 8% had filed a workers' compensation claim for their injury [NELP, 2009]. Even if benefits are fair and adequate, there appear to be increasing numbers of workers who are not covered at all under workers' compensation because they are considered self-employed or independent contractors [NELP, 2010]. Several states either already restrict or are proposing restrictions to benefits based on immigration status, with benefits denied for those who work without authorization [NELP, 2011]. Many workers are exempted because the state in which they work restricts certain industries from coverage [Munoz, 1975;Liebman and Augustave, 2010]. As a result, significant portions of workers are not covered for compensation after a workrelated injury [Nicholson et al., 2008] and must bear the burden of required medical care and lost wages themselves [Dong et al., 2007]. When workers are excluded from the workers' compensation system, incentives for employers to maintain healthy and safe workplaces are weakened. For example, if undocumented workers, or others already facing disproportionate risk in the workplace, are restricted from getting workers' compensation benefits after a workplace injury, the economic incentives to prevent their injuries are lost. Because virtually no workers' compensation system collects reliable information on race, ethnicity, language, and nationality, it is extremely difficult to document any differential effects for immigrants or non-English speaking workers. --- Collective Bargaining US labor laws and policies have established many barriers to organizing a union and gaining a negotiated contract, which may disadvantage low wage workers more than the general working population, resulting in reduced access to remedies to improve workplace health and safety conditions. Support for NLRA workers' rights has greatly weakened since the 1970s. Employer domination of the NLRA election process has been cited as a major obstacle to the growth of unions [Human Rights Watch, 2000]. Current union membership is at an all-time low of 11.9% overall -6.9% in the private sector and 36.2% in the public sector [Bureau of Labor Statistics, 2011b]. Recent attacks on the collective bargaining rights of public sector workers have the potential to decrease protections for these workers. --- Immigration Policies US immigration and border enforcement policies are important factors that may shape occupational health disparities among foreign-born workers [American Public Health Association, 2009]. Fear of deportation, high financial costs, and extreme life-threatening risks to re-enter the United States have created a workforce that is less likely to report workplace safety and wage violations, to have access to training and protective equipment, and to seek medical attention [Sakala, 1987;Dunn, 1996;Striffler, 2002;Azaroff et al., 2004;Moure-Eraso and Friedman-Jimenez, 2004;Walter et al., 2004;American Public Health Association, 2005;Saucedo, 2006;Quandt et al., 2006;Marin et al., 2009]. This lack of reporting is particularly problematic since the jobs primarily available to foreign-born workers are in high-risk occupations such as agriculture, food processing, and construction [Orrenius and Zavodny, 2009]. Foreign-born workers in sectors such as healthcare, industrial laundries, and building maintenance services are more likely to be hired into jobs that present much higher health and safety risks than what is generally experienced in those sectors [Moure-Eraso and Friedman-Jimenez, 2004;NELP, 2007;Bureau of Labor Statistics, 2011c]. The annual work-related injury death rate for Hispanic workers exceeded the rate for all US workers every year during 1992-2006, with the exception of 1995. During 2003During -2006, the work-related injury death rate for foreign-born Hispanic workers was 5.9/100,000 workers, compared with a rate of 3.5/100,000 for US-born workers [Centers for Disease Control and Prevention, 2008]. There are few means for legal entry into the United States for low-skilled, low-wage workers. Thus, many immigrants end up working without legal authorization. For instance, more than 50% of hired farmworkers do not have legal authorization to work in the United States [Carroll et al., 2005]. Immigrant workers that are authorized to work in the United States generally obtain visas through two guest worker visa programs for temporary unskilled labor: the H-2A visa program for agricultural work and the H-2B visa for nonagricultural work. Several reports note the poor working and living conditions endured by guest workers, raising important human rights concerns for visa holders [Bauer, 2007;Farmworker Justice, 2011]. However, studies conducted in North Carolina that compared the occupational safety and living conditions of guest workers with H-2A visas with immigrant workers without authorization found that work and living conditions are better for farmworkers with H-2A visas [Arcury et al., 1999;Whalley et al., 2009;Robinson et al., 2011;Vallejos et al., 2011]. --- EMPLOYMENT BENEFITS: HEALTH INSURANCE AND PAID LEAVE Federal law does not currently require employers to provide health insurance or paid leave benefits to workers, but many employers offer them voluntarily. In many cases, workers who are undocumented, work part-time, and earn low wages are not likely to receive these benefits from their employers [Ponce et al., 2008]. These workers are also likely to face the greatest hardship, which may be exacerbated by their lack of access to these benefits after suffering an injury or illness. --- Health Insurance and Health Care Uninsured people have worse health and die sooner than people with health insurance [Committee on Health Insurance Status and Its Consequences, Institute of Medicine, 2009]. In 2009, the uninsurance rate for those under 65 was 19% and 57% of the non-elderly population was covered by an employer plan [Statehealthfacts.org, 2010], but employer-sponsored insurance has been less common among low-wage workers and those employed by small firms [Statehealthfacts.org, 2010]. When employers offer insurance, some employees may forego it because they are unable to afford their share of premium costs. Over the past decade the percentage of the population covered by ESI has fallen, and workers less likely to be covered include Hispanics, African Americans, foreign-born individuals, those with only a high school education or less, and those in the lowest fifth of household income [Gould, 2009]. These workers tend to be at higher risk of occupational injuries and illnesses. Workers with limited ability to pay for good quality health care are likely to face a double jeopardy in their health status-greater likelihood of impaired health that makes them more vulnerable to workplace health hazards. Lack of ESI can exacerbate existing occupational health disparities and make it more difficult for workers to attain and maintain good overall health. Workers not insured through employers or a state program such as Medicaid may try to obtain coverage through the individual market, but often do not succeed. A Commonwealth Fund survey found that 73% of those who sought coverage on the individual market between 2004 and 2007 did not end up buying plans, either because they could not find affordable plans that met their needs or were denied coverage due to preexisting medical conditions [Doty et al., 2009]. The 2010 Patient Protection and Affordable Care Act is designed to make health insurance easier to obtain for both individuals and small employers. Starting in 2014, Medicaid eligibility will be extended to all individuals with incomes below 133% of the federal poverty level, and subsidies will be offered to those with incomes between 133% and 400% of the poverty level who purchase insurance through health-insurance exchanges established by states to facilitate the purchase of affordable plans that meet federal standards [Kaiser Family Foundation, 2010]. --- Paid Leave The BLS defines paid leave as paid time off work, including vacations, holidays, and personal and sick leave [Bureau of Labor Statistics, 2011a]. Some employers in San Francisco, the District of Columbia, and Connecticut are required to provide paid sick leave but for others it is voluntary. Access to paid leave varies by worker, employer, occupation, and industry. In 2010, the BLS reported that part-time, nonunion, and low-wage workers were offered less paid leave than full-time, unionized, and higher wage workers [Bureau of Labor Statistics, 2010d]. Although there are significant variations by occupation and industry, workers employed in private industry are less likely to be offered paid leave benefits than state and local government workers. In fact, part-time and private industry workers are less likely to have access to any benefits, including paid leave, and more likely to have a lower hourly wage than full-time and government workers [Bureau of Labor Statistics, 2010d]. Variations in access to and use of leave influence workers' ability to meet their own and their dependents' needs, and may result in and exacerbate health disparities. In 2003, only 56% of US workers reported they could take paid time off during the day to see their doctor and 53% reported having any days of PSL. Only 36% of workers in the lowest compensated jobs had paid time off to see doctors during work hours, compared with 73% of workers in the higher compensated jobs [Collins et al., 2004]. Working when it would be appropriate to take time off work may affect the likelihood and severity of occupational injury and illness. Asfaw et al. [2010] found that a family member's hospitalization within 15 days before a worker suffered occupational injury increased the likelihood that the injury would be severe , and was associated with 40% higher wage replacement or indemnity costs and 50% higher medical costs provided through workers' compensation. --- EXCLUSIONS AND LIMITATIONS OF FEDERAL AND STATE LABOR, ECONOMIC, AND SOCIAL LAWS AND POLICIES The historical legacies of racism and discrimination in the United States have contributed to the exclusion of certain workers from protections provided by labor, economic, and social laws and policies, and the concentration of minority workers in more hazardous occupations [Strong and Zimmerman, 2005; Domestic Workers United and Data Center, 2006;Boris, 2008;EWC et al., 2010]. Researchers have noted how social context impacts risk and vulnerability to occupational injuries and illnesses [Azaroff et al., 2002;Quinn et al., 2007;Krieger, 2010]. These explicit and implicit exclusions disproportionately impact minority and immigrant workers compared to white and nonforeign born workers, and contribute to occupational health disparities by ethnic group, immigration status, and occupation, among other factors [Azaroff et al., 2002;Lashuay and Harrison, 2006;Shor, 2006]. Despite the policies created to protect workers and prevent occupational injuries and illnesses, many workers remain vulnerable to avoidable hazardous working conditions. Millions of workers are explicitly excluded from labor, economic, and social laws and policies, while a great number are implicitly excluded by the ways these policies are implemented or laws enforced. While exclusions do vary by law or policy, state, and sometimes by employer, there are a few categories of workers, such as agricultural and domestic workers or public sector employees, who were systematically excluded from legal protections covering the majority of US workers. --- Agricultural and Domestic Workers In the 1930s, legislative supporters of the NRLA and FLSA agreed to exclude domestic and agricultural workers from the labor protections in order to win the support of Southern Democrats for the New Deal legislation. At the time, domestic and agricultural workers were predominantly African-American and their unregulated labor was a key component in the South's economic production [Boris, 2008;Hiller and Saxtein, 2009]. In the past several decades, new federal and state legislation was introduced to improve labor protections for these workers, including the federal Migrant and Seasonal Agricultural Worker Protection Act and the New York Domestic Workers' Bill of Rights . However, agricultural and domestic workers across the United States are still largely unprotected by the labor provisions afforded many other workers. These exclusions may significantly contribute to occupational health disparities. Farm workers represent just 3% of the total labor force in the United States but account for 13% of all workplace fatalities [Holley, 2000;Wallace et al., 2007]. Domestic workers who work as personal attendants and home care aides are nine times more likely to be assaulted than the average worker [Gaydos et al., 2011]. Surveyed agricultural and domestic workers earn very low wages, experience wage theft or denial of payment for hours worked, are regularly exposed to preventable occupational safety and health hazards, and face job insecurity Currently, the OSH Act excludes private homes as workplaces covered by OSHA standards. Thus, domestic workers are not covered and there is no requirement to document injuries and illnesses [National Immigrant Law Center, 2009]. --- Tipped Workers Other categories of workers, including restaurant workers, taxi drivers, and day laborers, are also routinely excluded from labor standards through policy exclusions. Tipped workers, such as restaurant workers, parking attendants, nail salon workers, barbers, car wash workers, bellhops, and baggage porters, are currently entitled to a tipped minimum wage, which is 29% of the federal minimum wage . If tips do not bring the worker pay up to minimum wage level, employers are responsible for making up the difference. However, recent studies of tipped workers found that these workers regularly earn less than the minimum wage [United Steelworkers, 2008;Bernhardt et al., 2009;Restaurant Opportunities Centers United, 2011] and that as many as 20-30% of restaurant employers illegally take tips from workers [Restaurant Opportunities Center of New York and New York City Restaurant Industry Coalition, 2005; Chinese Progressive Association, 2010]. Compared to non-tipped workers, tipped workers are twice as likely, and waiters are almost three times as likely, to fall under the federal poverty line [Allegretto and Filion, 2011]. --- Immigrant Workers Approximately 15.5% of the 2009 US civilian labor force age 16 and over are foreign-born [Bureau of Labor Statistics, 2010c]. Currently, all workers considered "employees" are protected by federal and state labor and employment laws, including workers' compensation benefits, regardless of their immigration status. Despite having these formal legal protections, immigrant workers are routinely excluded from exercising their right to unionize, to be paid minimum wages and overtime, and to work in a safe and healthy workplace free of discrimination [National Immigrant Law Center, 2009]. Immigrant workers are vulnerable to exploitation and exclusion due to factors such as citizenship status, language barriers, educational attainment, lack of job training, poor enforcement of labor laws, and threats of retaliation and deportation [Lashuay and Harrison, 2006;Bernhardt et al., 2009]. Fear of retaliation likely also keeps some workers from applying for workers' compensation benefits after job-related injuries. Research studies demonstrate that foreign-born workers are more likely to work in riskier jobs [Orrenius and Zavodny, 2009], are paid less [Bureau of Labor Statistics, 2010c] and experience a minimum wage violation [Bernhardt et al., 2009] more often than US-born workers. In addition, immigrant workers have less access to protective equipment, safety training [Lashuay and Harrison, 2006], health insurance, and other benefits [Azaroff et al., 2002;Kullgren, 2003;Shor, 2006]. Undocumented immigrants are particularly vulnerable to wage and labor exploitation [Mehta et al., 2002]. Since September 11, 2001, the Department of Homeland Security's Immigrations and Customs Enforcement has significantly increased the number of raids in worksites and communities, leading to record numbers of arrests, detentions, and deportations of workers [National Immigrant Law Center, 2009]. Worksite-based immigration enforcement impacts immigrants' ability to exercise their rights to minimum wage and other protections established under the law [Bernhardt et al., 2008a;National Immigrant Law Center, 2009]. --- Misclassified Workers Worker misclassification occurs when an employer improperly classifies a worker as an independent contractor rather than an employee, classifies payments as non-taxable income, or fails to report employee wage payments [State of Michigan, 2007]. While workers are in some instances complicit in misclassification, more likely it is foisted upon them [Harris, 2010]. State reports indicate that 10-30% of employers misclassify workers and hence several million workers are misclassified [NELP, 2010]. State audits found that 44% of audited employers in Wisconsin, 38-42% in New Jersey, and 34% in Colorado, misclassified workers and in Ohio there was greater than 50% increase in the number of workers reclassified from 2008 to 2009 after audits identified classification errors [NELP, 2010]. Workers employed as taxi drivers, truck drivers, day laborers, and messengers are often considered independent contractors [Valenzuela et al., 2006;Bernhardt et al., 2008b;Milkman et al., 2010]. They are routinely exposed to dangerous occupational hazards and are at higher risk of occupational fatality [Moracco et al., 2000;Valenzuela et al., 2006;Hendricks et al., 2007;Seixas et al., 2008]. Misclassification has significant implications for workers. Misclassified workers may lose the protection and benefits of laws that apply to employees, such as the minimum wage and overtime provisions of the FLSA, job accommodation provisions of the Americans with Disabilities Act , leave provisions of state and Family and Medical Leave Act, and the right to organize afforded by the NLRA, as well as coverage from child labor and health and safety laws. Independent contractors do not qualify for health and pension plans and other employee benefits. They are ineligible for unemployment insurance and workers' compensation. Misclassification also lowers labor standards for all workers. Misclassification has significant implications for employers, taxpayers, and the government. The Government Accountability Office found that "[…] employers have financial incentives to misclassify employees as independent contractors" [US Government Accountability Office, 2009]. Employers who misclassify workers can avoid paying income taxes, Federal Insurance Contribution Act taxes, unemployment taxes, and workers' compensation premiums. --- Limited or Lack of Enforcement, Funding, and Accountability Federal and state agencies responsible for labor and occupational safety and health law enforcement are significantly under-resourced. Given current federal and state funding, it is estimated that there is one inspector for every 60,723 workers and it would take 137 years for federal OSHA and 63 years for state OSHAs to inspect every workplace once [AFL- CIO, 2010]. A recent investigation of the Department of Labor's Wage and Hour Division complaint intake process found that overall the processes were "ineffective" and "responded inadequately to complaints," often taking months and sometimes years to respond [US Government Accountability Office, 2009]. Given the current 2-year statute of limitations, delays in WHD responses may limit workers' ability to seek retribution for wage violations. In addition to lack of staffing, researchers and advocates have asserted that the penalties assessed by enforcement agencies are too low to deter labor and occupational safety and health violations [McQuiston et al., 1998;Silverstein, 2008]. Recent congressional testimony reveals that federal prosecutors have prosecuted only one work-place fatality for every 3,000 cases [Michaels, 2010]. In 2009, the average penalty for a federal OSHA investigated fatality was $6,750 and for a serious OSHA violation it was $965 [AFL- CIO, 2010]. On the other hand, the average OSHA penalty per serious violation in 2011 increased to $2,132, more than doubling from 2010s average of $1,053. --- Standards Setting Both the Mine Safety and OSH Acts give the Secretary of Labor the authority to issue new standards to advance the goals of the statutes. Both statutes set a high bar for health protection, instructing the agencies to set standards that assure to the extent feasible that no employee will suffer material impairment of health or functional capacity, even if such employee has regular exposure to the hazard during his working life. Standards are informed by the scientific evidence on health risks but are ultimately crafted to be economically and technologically feasible for the affected industries. The process of developing and issuing a health or safety standard usually takes years. Therefore, there are many occupational hazards without rules to control them despite availability and feasibility of controls. In 1995, OSHA engaged in a year-long priority planning process that identified 18 workplace hazards in need of regulatory action, including solvents, asphalt fumes, diesel exhaust, synthetic mineral fibers, and oil/gas drilling and servicing [OSHA, 1995]. Fifteen years later, only one of these hazards was addressed with a final rule. The inconsistent quality of work environments that result from insufficient standard setting increases the likelihood of occupational health disparities. --- LOCAL AND STATE EFFORTS THAT MAY REDUCE OCCUPATIONAL HEALTH DISPARITIES Emerging state, county, and municipal labor and public health policies, laws, and programs may help to reduce occupational health disparities. This section summarizes a variety of efforts at the local and state levels that aim at increasing wages and job opportunities, improving employment conditions, enforcing regulations, or organizing workers to redress violations of labor laws. While these efforts differ in the scope, breadth, and impacts on the lives of low-income workers, they may contribute to directly or indirectly changing labor market conditions for low-income workers, which in turn may reduce occupational health disparities. --- Living Wage Laws The declining real value of minimum wages in the United States since 1968 triggered the creation of a living wage movement to improve the working and living conditions of lowwage workers. This movement defines living wage as a wage level that enables workers to support a family of four at a livable standard of consumption and to participate in civic life and leisurely activities [Fairris and Reich, 2005;Pollin, 2005]. Some living wage ordinances are "contractor-only" laws that only affect contractors who deliver services to or receive subsidies from cities. Others are "area-wide" ordinances, which apply to all businesses of a specified size within a geographic area [Pollin, 2005]. Since the first contractor-only living wage law was enacted in Baltimore in 1994, over one hundred living wage ordinances or laws have been passed and implemented throughout the country [Fairris and Reich, 2005;Lester and Jacobs, 2010]. Research studies have found both an increase in pay for low-skilled workers and related effects for higher skilled workers, reducing the income gap between low and high-skilled jobs, and turnover [Fairris, 2005]. While there is still controversy regarding the impact of living wage laws on employment growth, the majority of studies found that the number of low-wage jobs did not decrease in cities that adopted them [Adams and Neumark, 2005;Fairris, 2005;Reich et al., 2005;Brunner et al., 2007;Lester and Jacobs, 2010]. --- Wage Theft Legislation Wage theft legislation seeks to protect workers from not getting fully paid for hours worked . These regulations seek to address and prevent minimum wage, off-the-clock, overtime, meal and rest break, and other pay-related violations as well as misclassifications of workers as independent contractors. Laws may include penalties for employer violations of wage payment, notification and/or record-keeping requirements, enhanced enforcement, worker protection from retaliation, employer accountability, worker education, and guarantees that workers can collect from their employers [Bernhardt et al., 2008b]. Between 2010 and 2011, state and/or local legislation against wage theft was successfully passed in California, Texas, Washington, New York, Illinois, Maryland, Arkansas, and Florida [NELP, 2011]. Loss of income due to wage theft results in less funds to meet one's basic needs, such as paying for housing, food, heating, child care, transportation, or health care. This can result in increased homelessness, overcrowding, hunger, decreased mobility, and/or difficulty accessing health care and paying medical bills [Collins et al., 2004;San Francisco Department of Public Health, 2004;Valentine, 2005;Bobo, 2008]. --- Community Benefit Agreements Community benefit agreements are legally enforceable agreements between developers and community groups to ensure that residents affected by major developments share in the benefits of the project. CBAs are specific to the local context and may include requirements for first source, local or minority hiring, jobs with living wages and/or health insurance, affordable housing, and allocations of funding or land for child care, parks, public art, transit, pedestrian improvements, housing, or other community needs. CBAs also can be written to ensure that businesses and contractors who have a history of work-place safety or labor violations are ineligible for contracts or property leases/tenancy [Gross et al., 2005]. CBAs have become more popular recently, but their impact on wages and working conditions is more limited than living wage laws or ordinances, because they affect fewer businesses and are more tied to local market wages [Lester and Jacobs, 2010]. As a result, they do not influence as many local business or employment conditions. --- Coordinated and Targeted Enforcement Efforts Recognizing the limited capacity of government agencies to routinely and pro-actively monitor workplaces [AFL-CIO, 2010], some agencies have explored alternative arrangements to support enforcement including conducting targeted sweeps of specific industries [Lashuay and Harrison, 2006;California Labor Enforcement Task Force , 2012], the creation of inter-agency task forces and committees [US Government Accountability Office, 2009], and partnering with other government and community agencies to monitor conditions or bring forth cases of employer violations [New York Department of Labor, 2009;Chinese Progressive Association, 2010]. For example, New York established a multi-agency task force to address worker misclassification. Targeted investigations found 12,300 instances of misclassification with approximately $12 million in related unpaid wages recovered, and $157 million in unreported wages. The multi-agency approach to address misclassification was far more effective than unemployment insurance audits [US Government Accountability Office, 2009]. Massachusetts enacted legislation to standardize the definition of employee, penalize employers for misclassification, and authorize the Attorney General to impose penalties and bans violators from obtaining state public work contracts [US Government Accountability Office, 2009]. California created an Economic and Employment Enforcement Coalition in 2005 to target, cite, prosecute the most adverse business offenders operating in the underground economy, and to educate employers to come into full compliance with state and federal labor law [California LATF, 2012]. --- Occupational Health Care Services for Marginalized Populations Integration of occupational health and public health activities can promote more robust surveillance, improved access to care, and more effective interventions in certain target populations [Davis and Souza, 2009]. Coordination of care between community clinics, legal and other referral agencies, workers' compensation systems, hospitals, and other stakeholders can provide more wraparound support for vulnerable workers. The Massachusetts Coalition for Occupational Safety and Health worked with the Greater Boston Physicians for Social Responsibility and the Massachusetts Department of Public Health to develop a clinician's guide to occupational injuries and illnesses, which explains common occupational and environmental hazards and health effects and helps providers refer patients to occupational medical services [Mass-COSH, 2004]. --- Worker Centers, COSH Groups, and Trade Unions Worker centers may be defined as "community-based and community-led organizations that engage in a combination of service, advocacy, and organizing to provide support to lowwage workers" [Fine, 2005]. In general, worker centers serve non-unionized, minority, and immigrant populations [AFL-CIO Executive Council, 2006]. Over the past decade worker centers have offered a variety of services, including legal aid for unpaid wage claims, English classes, and access to health care. Worker centers advocate for workers by exposing individual and industry-wide employer violations and by pressing for individual, industry, and government changes, and improved working conditions. Worker centers can provide culturally and linguistically appropriate health and safety training, promote worker awareness and organizing, and advance policies that address occupational health disparities [Lashuay and Harrison, 2006]. Some worker centers have conducted studies that helped highlight the need for increased data collection, oversight, enforcement of labor and health and safety laws, and worker organizing Started in the late 1970s, the Coalitions or Committees for Occupational Safety and Health are state-level labor and community-based occupational safety and health advocacy organizations. Originally, COSH groups helped local unions provide training about workplace hazards and how to organize for safer workplaces, build effective health and safety committees, and offered hotline services to assist with access to government health and safety services and worker-friendly medical and legal professionals. By the end of the 1990s, many COSH groups started to focus on the needs of low-wage and immigrant workers who were less likely to be union members, yet more likely to be employed in dangerous work settings. COSH groups have worked to link labor unions and environmental organizations by focusing on the workplace as a source of health hazards for workers and the community, helping environmental groups understand workplace justice, and moving environmental groups to concentrate on environmental justice issues within industrial sectors, such as racial disparities in Superfund cleanup efforts [Zoller, 2009]. COSH groups have long championed the effort for workers and communities to have the Right to Know about toxic and hazardous chemicals in their environment [Mayer, 2009]. In the past several years, COSH groups have worked with immigrant rights networks and unions to help immigrant workers attain union contracts and strong workplace health and safety protections in various service sector settings. Examples include a successful effort in the building services sector in Boston [Pechter et al., 2009] and the creation of a housecleaning cooperative of Brazilian immigrants that uses green cleaning products to provide healthy working conditions as well as home environments [Siqueira, 2009]. Organized labor, as trade unions or as members of coalitions such as Jobs with Justice, is a valuable force for bringing attention to and reducing social inequalities. Occupational health disparities may be prevented through labor actions such as collective bargaining, campaigns to gain new laws to strengthen workers' rights, and concrete measures to improve workers' community and workplace conditions. These actions happen at the local and state levels but may also be coordinated nationally. For instance, since 1990, the Service Employees International Union has engaged in campaigns in major US cities to bring Justice for Janitors-largely immigrant workers who clean office buildings, universities, and healthcare facilities. The campaigns have gained union recognition for the workers, contracts with provisions for increased pay, benefits, and improved working conditions, and spawned similar campaigns in other countries [Nulty, 2010]. Unite HERE, a union representing workers in the hotel, gaming, food service, manufacturing, textile, distribution, laundry, and airport industries engages in campaigns to improve working conditions and compensation for its members who are often in low-wage positions. For several years, with its Hotel Workers Rising campaign, this union has organized national boycotts against hotels where working conditions for housekeepers, generally women and often immigrants or from communities of color, result in high rates of musculoskeletal disorders and also expose workers to workplace violence and sexual assault [Hotel Workers Rising, 2012]. The Unite HERE campaigns have brought public recognition of unjust workplace policies and working conditions, and resulted in building public support that has moved some hotel chains to improve working conditions and agree to stronger labor contracts. These two examples, among many others taking place all over the country, embody the power that organized workers can harness to reduce occupational health disparities. --- CONCLUSION This article introduced some of the key labor, economic, and social policies that historically and currently impact occupational health disparities in the United States, and described key populations that are excluded from existing laws and promising state and local practices to improve employment conditions that likely will address occupational health disparities. Health disparities should be expected when social and economic disparities exist. Establishing such evidence is challenging when data either are not collected or when social circumstances lead to in-sufficient data collection or questions about the reliability and accuracy of the data. The restructuring of the US economy that has taken shape since the mid-1970s has changed the political power balance between labor and employers. Labor unions have been weakened and labor laws have been set, implemented, and/or interpreted to shift greater advantage to employer discretion. Economic restructuring, coinciding with advances in communication, transportation, and industrial production technologies, expanded globalization of trade, and industrial and labor migration, has resulted in the largest period of immigration to the United States in nearly a century as well as a broad transformation of the industrial landscape. Racism, nativism, and inadequate immigrant rights laws all add to inequalities in social and public health protections between the general US population and these new immigrant populations and communities. Legal jurisdictional boundaries for protecting public health in the workplace, communities, and through environmental protection establish a false set of life divisions. Consequently, studying health disparities separately in the workplace and community will present incomplete evidence of their determinants. Nonetheless, it is imperative that we come to understand the sets of legal and policy contexts that are key determinants of occupational health disparities. Our next steps must be to further build the coalitions and collaborations to command the resources necessary to identify, and then reduce and eliminate occupational disparities by establishing healthy, safe, and just work for all. ---

Background-This article introduces some key labor, economic, and social policies that historically and currently impact occupational health disparities in the United States. Methods-We conducted a broad review of the peer-reviewed and gray literature on the effects of social, economic, and labor policies on occupational health disparities. Results-Many populations such as tipped workers, public employees, immigrant workers, and misclassified workers are not protected by current laws and policies, including worker's compensation or Occupational Safety and Health Administration enforcement of standards. Local and state initiatives, such as living wage laws and community benefit agreements, as well as multiagency law enforcement contribute to reducing occupational health disparities. Conclusions-There is a need to build coalitions and collaborations to command the resources necessary to identify, and then reduce and eliminate occupational disparities by establishing healthy, safe, and just work for all.

INTRODUCTION Boards serve as a building block that foster the governance of savings and credit cooperative societies through monitoring, strategic direction settings, and provision of resources . The board is a central element of a corporate governance system. The board of directors overseeing the management at the organisation's apex and ensures they conduct their affairs ethically and legally . Having a board is mandatory; however, having an effective one is crucial . Ssekiziyivu, Mwesigwa, Bananuka, & Namusobya reported that the primary challenge faced by SACCOS in African countries is the effective performance of their boards. For instance, in Tanzania, SACCOS are legally required to have a board for governing the SACCOS as outlined in the laws and regulations. But still, SACCOS continue to struggle with unsatisfactory long-term survival rates . The demise of SACCOS creates disappointment and disharmony among SACCOS members and raises questions about the competency and effectiveness of these boards regarding their performance. Assessing the performance of the boards can be challenging due to confidentiality and limited access to the board . This led to most previous studies on SACCOS boards to examine the relationship between board characteristics and financial performance as a proxy for evaluating board performance . Board characteristics rely on past data alone; they do not provide insight into what happens within the board . This leads to a lack of understanding of board behavioural processes and group interactions that determine board performance . Board process behaviour links inputs and outputs, which could influence the effective execution of board role performance . However, previous studies neglect the processes that link inputs and outputs, specifically the impact of board processes on the performance of board roles .Then currently, the board processes and role performance have gained ground in scholarly discourse . Different scholars have tended to underscore the importance of investigating board processes and their bearing on the execution of board roles . This invites to go beyond board characteristics and require opening the "black box" of what boards do and how they carry out their roles. Board processes cover conduct aspects, dealing with how their members interact, collaborate and communicate during their preparations, participation, critical discussion, and exchange of information based on their assigned roles . Subsequently, the concise and researchable factors presented by Forbes and Milliken have offered the most promising avenue for evaluating the process behaviour aspect of board members. These factors constitute the primary building block in understanding the behaviour perspective of board members regarding their board's performance. Forbes and Milliken suggested that board processes entail efforts norms, cognitive conflicts, and the use of skills and knowledge that are more likely to affect the ability of the SACCOS board to perform their functions. Different previous studies have examined the boards' processes on their role performance, but these studies have mainly been limited to the evaluation of a few firms from developed countries, such as manufacturing firms , listed firms , and secondary schools . Consequently, none has explored these aspects in the SACCOS context and more so in emerging countries such as Tanzania. Additionally, findings from previous studies were unclear and inconsistent because of varying behavioural determinants of board members depending on the nature of the firm under examination. For instance, the influence of cognitive conflicts on the board's role performance have been often nonsignificant , negative or even positive . Consequently, the results cannot be generalised to SACCOS, given their cooperative nature as a members-based non-profit financial institution that abides by cooperative principles . Notably, SACCOS are governed by members through elected boards and use a democratic control system of one-member-one-vote in decision-making . Since SACCOS board members are elected from the membership, they have a triple set of rights as owners, users and beneficiaries . The nature of the SACCOS boards may lead to behaviour variances of their board members in doing their work relative to directors of investor-owned firms. In this regard, the insufficiency of empirical studies investigating board processes and their potential contribution to board role performance in SACCOS constitute another knowledge gap. Therefore, this study aims to fill this research gap by examining the board processes and their effect on the board's performance, which remained untested in the SACCOS context and emerging countries, including Tanzania. Zatton et al. suggest that board members collaborate to boost board performance and collective knowledge base. Examining the relationship between board process and board role performance can help SACCOS board chairpersons and board members to grasp their behaviour and learn how to manage themselves to boost their capacity to fulfil their roles. Similarly, the relationship is additive and enriches the existing literature on boards and SACCOS, particularly in Tanzania, a developing country's context. --- Literature Review Board Processes The board process refers to the board members' behaviour in the decisionmaking practice, which affects their ability to perform their roles . The decision-making process involves board members collectively preparing for the board and participating in intensive discussion and communication through exchanging information . Board interactions and decision-making are critical in determining the board's performance. Forbes and Milliken have identified three factors in board processes that can influence board task performance: cognitive conflict, efforts norms, and the use of knowledge and skills. It is noted that cognitive conflict, efforts norms, and the use of knowledge and skills are essential aspects of the board processes . These aspects can be linked to the social exchange theory. The theory suggests that parties enter into and maintain exchange relationships with others, expecting that doing so will be worthwhile . Thus, the board members in the SACCOS are attracted to a fair relationship with the perceived value of the resources exchanged and the fairness of the exchange. Similarly, the theory in the context of the SACCOS presupposes that board members' interactions affect the quality of their relationship and their ability to work together effectively . Hence, the board processes regarding effort norms, cognitive conflicts, and the use of skills and knowledge can influence board role performance. This study, therefore, uses Social exchange theory in explaining the relationship between board processes and board role performance in SACCOS. --- Boards' Roles Performance Board performance refers to the ability of board members to play their board roles . Judge & Talaulicar have proposed three categories of board roles namely;monitoring, resource provision, and strategic direction setting. The monitoring role is derived from the agency theory, which emphasises that the board is responsible for monitoring the agents' actions to ensure that they act in the best interests of the owners and the organization as a whole . Also, board undertakings within monitoring roles comprise supervising the performance of the management, monitoring and controlling financial performance through the evaluation of budgets versus the actual, reviewing expenditures and ensuring value for money, in addition to following up on the outcomes of the management decisions . Resource provision roles are grounded in assumptions drawn from the resource dependency theory, which claims that a firm's survival depends on the ability to access environmental resources . Board members provide expertise as resources to link the organisation with external stakeholders and manage external interdependency. Such resource provisions by board members help to lessen dependency and control uncertainties which serve as a boundary spanner and improve legitimacy . Activities in resource provision roles also cover how board members apply their expertise to advice, counsel the management, and create networks with different stakeholders. Finally, the board's strategic role involves formulating strategic planning, reviewing strategic proposals, and supporting the implementation of strategies and decision-making to attain organisational goals for long-term survival and sustainability . The strategic role is derived from resource dependence theory, which strongly emphasizes that boards provide a firm's management with important strategic planning and advice and may contribute to strategic decision-making. --- Hypothesis Development Effort Norms and Board's Roles Performance Efforts norms refer to group-level constructed expectations of the group's shared belief at individual resource levels regarding time, energy, skills and commitment invested in the board's roles . In this regard, effort norms seek to address each board member's effort level in a group of interdependent individuals in preparing and engaging in the board's endeavours . When board members devote ample time to prepare themselves, it may result in active engagement and collaboration in the board meetings. Thus, such commitment could generate much-needed information for supporting quality decision-making and enhancing the effective execution of the board's roles . From social exchange theory, it can be argued that when board members perceive that other members are not matching their efforts, they may feel that the exchange of resources is unfair, leading to lower levels of commitment among board members, thus affecting board role performance. On the other hand, when board members think that others match their efforts, they may be more committed, resulting in the board roles' performance. Strong effort norms among board members can also translate into intensive interaction in debating strategic issues and scrutinising management proposals, reports and their performances. Scrutiny of management reports and analysis fosters the monitoring role . Meanwhile, the active participation of board members in discussions and during meetings facilitates strategic and resource provision roles . Also, evidence from empirical studies supports the view that the higher efforts norms on the board significantly raise contributions to strategic settings, resource provision, and monitoring of management . Studies also indicate that the time and preparation board members devote to their boards considerably differ among firms . These differences lead to a variance in the board's ability to perform their respective roles. In this regard, Kleanthous affirmed significant differences in time, energy, skills, and commitment that SACCOS board members dedicate to their respective boards. And yet, limited studies have focused on evaluating the performance of effort norms on board roles in SACCOS. Thus, we hypothesise: H1a: Effort norms are positively related to board monitoring role performance. H1b: Effort norms positively relate to board resource provision role performance. H1c: Effort norms are positively related to board strategic role performance. --- Cognitive Conflict and Board Roles Performance Cognitive conflict refers to task-related variations in judgment among group members . Cognitive conflict often emerges in disagreements on the tasks' content, particularly when board members present divergent views, ideas, or opinions, leading to judgment differentials. Cognitive conflict also ignites a debate among board members on their alternative view points and making critical analyses that could better the resultant decisions . Moreover, cognitive conflict could remind the management that the board actively monitors issues in the firm, leading them to work in the owners' interest . Social exchange theory suggests that conflicts can be disruptive, leading to more thorough and creative decision-making processes if managed effectively. When board members feel their opinions are respected and valued, they may be more committed to participating in the discussion, resulting in better board performance.Cognitive conflict also accords board members an opportunity to articulate their views, which could generate more valuable information for the firm, hence reducing the transactional cost of dealings with environmental uncertainties and enhancing the resource provision role . Moreover, disagreements align with better advice and quality decisions, may induce consideration and careful evaluation of available alternatives. Cognitive conflicts are also increasingly becoming strategic choices and options as the board members evaluate them carefully and opt for the best decision to smoothen the execution of the board's strategic roles . Overall, mixed empirical evidence exists on the cognitive conflict and the board's role performance between firms. For example, cognitive conflict tends to have a positive relationship with the board's role performance in monitoring and resource provision roles and strategic roles . Conversely, Minichilli et al. found a negative relationship between cognitive conflict and board role performance. On their part, Heemskerk and Jansen did not find any link between cognitive conflict and the board's role performance. Likewise, the nature of tasks expected in SACCOS boards requires board members to participate in cognitive discussions to reach the best decisionmaking option. However, excessive cognitive conflict on the board can be detrimental since it can trigger the rise of negative emotions among board members; thus, it can undermine the quality of the decision and, as a result, hamper the board's roles . Therefore, we hypothesise as follows: H2a: Cognitive conflict is positively related to the board-monitoring role. H2b: Cognitive conflict positively affects the board resource provision role. H2c: Cognitive conflict is positively related to the board's strategic role. --- Application of Knowledge and Skills and Board's Roles Performance For the boards to perform their roles effectively, they need board members equipped with skills and knowledge to execute their respective board's roles . The use of knowledge and skills refers to how board members effectively leverage their collective knowledge and skills to support board roles . Such application of knowledge and skills pertains to how they contribute to the firm's well-being in a coordinated manner . Evidentially, the board requires the aggressive use of the board members' knowledge and skills to benefit group decisions . After all, using skills and knowledge can minimise losses and enhance collective learning among board members . When board members utilize their expertise and knowledge to inform board discussions and decisions, it can lead to better-informed decisions and improved board task performance. From the social exchange theory, when board members feel that their skills and knowledge are being utilized effectively, they may be more committed and perform better in their board roles. Conversely, when board members feel their skills and knowledge are not being utilized, they may disengage and perform poorly in their roles. In addition, knowledge and skills are essential in implementing the board's roles when directors are heavily interdependent and share mutual responsibilities for the board's performance . Moreover, applying knowledge and skills is an essential criterion of board performance since it allows for a clear division of roles and responsibilities based on each board member's competency, facilitating information flow between board members . Previous studies by Bankewitz , Farquhar , Heemskerk et al. , Minichilli et al. , and Zattoni et al. found the greater use of knowledge and skills positively associated with the board's roles performance. Even though knowledgeable and skilled board members are essential assets for the board, they sometimes cannot guarantee the use of their expertise to implement board roles because of a possibility of "social loafing" within the board, whereby directors fail to apply their skills and knowledge in executing board roles . In this regard, an effective board demands active use and integration of the board members' skills and knowledge to inform and enrich the board's decisions. To effectively fulfil their resource provision and strategy roles, these boards should combine their competencies in different functional areas and apply them accordingly and appropriately to address other issues . Hence, it is hypothesised that: --- H3a: Use of knowledge and skills positively correlates with monitoring role performance. H3b: Use of knowledge and skills positively correlates with the resource provision role performance. H3c: Use of knowledge and skills positively correlates with strategic role performance. --- Board Processes Board Roles Performance Figure 1: Conceptual Framework --- Methodology The research design for this study is a cross-section survey requiring data collection at one point in time. This design helps to control the conditions of the study by capturing the present state, facilitating a snapshot of a large population, and allowing for generalisation of findings . A mixed research approach allowed qualitative and quantitative data to inform the study in solving the research problem . The quantitative data tested the relationship between board process and board role performance in accordance with the hypotheses. In contrast, qualitative data complemented quantitative data to enhance the validity of the study findings. for the study. This responsive and usage rate was sufficient since Mugenda and Mugenda propose a response rate above 70% as acceptable for generalisation. At the same time, purposive sampling, as the non-probability technique, was used to select the study area, board chairperson and nine key informants from SACCOS managers and cooperative officers. --- Source and Data Collection The study adopted a mixed-methods approach, whereas data were collected from primary and secondary sources from SACCOS as a targeted population. Primary data for the board processes and roles were collected from the board chairperson through the closed-ended survey questionnaire. Moreover, the qualitative primary was collected from key informants using an interview guide kit for triangulation. In contrast, secondary data for board meetings, SACCOS size and age were collected from the audited financial reports. Primary data were collected from January to March 2020. Board chairpersons filled out questionnaires, one for each SACCOS, on behalf of the whole board since board governance studies are usually based on a single respondent to avoid inconsistency in information on the same issue . The selection of board chairpersons is purposive due to their position in power, authority and presumed knowledge of the SACCOS they serve. Moreover, the chairperson is responsible for giving directions to board members on processes. Previous studies by Barroso-Castro et al. and Jansen had similarly collected board information from one board member to represent the whole board.The questions in the questionnaire were assessed based on a five-point Likert scale ranging from 1 to 5, where 1= strongly disagree, 2= disagree, 3= undecided, 4= agree, and 5= strongly agree. In confirming that the questionnaire measures the intended variables for the objectives, the study used Cronbach's Alpha test to determine such reliability. Cronbach's alpha test from 0.7 and above is accepted because it signifies the attainment of internal consistency reliability . A pre-test and a pilot study were also conducted before the main survey to test the reliability of the study's questionnaire. On the other hand, the researchers interviewed nine key informants, comprising seven SACCOS managers and two cooperative officers . The selection of key informants was purposive, considering their expertise and experiences in SACCOS boards. The researchers also considered ethical procedures to safeguard the participants' interests, privacy and dignity . --- Dependent Variables The monitoring role was measured by board members' ability to monitor society's activities and assess management performance . The monitoring role was measured by the statements, which asked how to monitor the SACCOS management. The resource provision role refers to board members' ability to bring various vital resources regarding skills and experiences to the board and society . There were questions on the resource provision role measuring how board members could bring their expertise in networking their SACCOS with other stakeholders and advising on different fields to benefit the SACCOS. The strategic role measures board members' ability to formulate strategies and set review guidelines for strategic implementation towards achieving the society's mission and goals. The strategic roles asked how the board members developed the strategies and guided the performance. These roles were measured using statements adapted and modified from Balta , Barroso-castro et al. , Kamardin & Haron , Mori , Ogbechie and Balta . --- Independent Variables Board processes, as independent variables, fall under cognitive conflict, effort norms, and use of knowledge and skill, as hypothesised earlier, measured using a five-point Likert scale. The cognitive conflict concerns task-oriented discussions and judgement for implementing board roles. The variable asked how much task-related discussion on agreements and disagreements emerges in meetings. Efforts norms refer to the extent to which board members are actively engaged in executing their roles. The use of knowledge and skills determined the extent to which board members apply their skills and expertise in performing board roles. The questions on board processes variables were adapted and modified following the suggestions from Zattoni et al. , Heemskerk et al. , Minichilli et al. , and Forbes and Milliken . --- Control Variables Variations in firms' specific characteristics in SACCOS prompted the study to embrace firms size, firm age, and board meetings as control variables like previous studies . SACCOS' age refers to how long it has been in operation. The study measured SACCOS' size based on the value of total assets, but their values were in a wide range and thus were transformed into a natural logarithm to normalise their distribution. Taking the natural logarithm allows for a more effective data analysis by compressing the data into a more manageable scale and making it easier to interpret and understand. Moreover, large SACCOS generally have recourse to economies of scale to optimise their resources, resulting in better execution of the board's roles. Finally, the number of meetings conducted annually measures total board meetings. --- Data Analysis Quantitative data were analysed in three phases. The first phase focused on factor analysis using principal component analysis to group the Likert scale items into their respective scale, as Pallant recommended. The study only accepted components extracted from PCA with commonalities greater than 0.5. The remaining factors were scaled and formulated into one continuous variable for monitoring, resource provision and strategic roles. Second, the independent, dependent and control variables were subjected to descriptive analysis by determining each variable's mean, median, standard deviation, minimum, maximum, skewness and kurtosis. Third, the study used inferential statistics based on multiple regression. Prior to conducting the regression models, the data for this study underwent diagnostic assumption tests, including assessments for normality and multicollinearity. These tests were performed to ensure that the data adhered to the necessary requirements for regression analysis. Multiple regression analyses were conducted with two blocks to evaluate the proposed relationship in the hypotheses. In Block 1, we regressed control variables on each board role performance in separate regressions. The models are specified as follows: Where BP is the board's performance in monitoring, strategic , and resource for a firm. is firms' observations, is SACCOS size, SAge is SACCOS age, and B meet is board meetings. In Block 2, we regressed each board process and control variables on each board role performance in separate regressions. Hence the following regression model: Where CC is cognitive conflict, EN is efforts and norms, SK is the use of skills and knowledge, is SACCOS size, SAge is SACCOS age, and Bmeet is board meetings. On the other hand, qualitative data were analyzed through thematic analysis adopted from Braun and Clarke , which involves six steps. Such steps include becoming familiar with the data, generating initial codes, searching for the themes, reviewing themes, defining and naming the themes and producing the report relating to the importance, relevance, and relation to the theories and study objectives . The constructed themes and sub-themes were considered to study the effects of board processes behavior and board roles performance in the SACCOS. --- Findings and Discussions Exploratory Factor Analysis, Validity and Reliability The study used the principle component and Cronbach's alpha to evaluate the validity and reliability of the scales as a measure of the board's process and board roles in strategic direction, resource, and monitoring. For the validity test, the study extracted an exploratory factor analysis on the dataset using the principle component analysis, specifically the Varimax with Kaiser Normalization, to determine whether each construct's scales in the boards' process and roles conveyed the same factor. In this regard, only components extracted from PCA with commonalities greater than 0.5 were acceptable to achieve this objective. Moreover, before performing the PCA for the scales, the assessment for suitability of the data for factor analysis based on sample size adequacy was done through Kaise-Meyer-Olkin and the strength of the relationship between variables was assessed through Bartlett tests of sphericity. KMO values from 0.7 and above are acceptable . In contrast, in Bartlett's test, a significant value less than 0.05 signifies that the data does not result in an identity matrix and, therefore, is approximately multivariate normal and acceptable for further analysis . The results in Table 1 showed that the value of the KMO was 0.884 for board process and 0.801 for board roles performance, while Bartlett's test of sphericity reached statistical significance . Thus, the data was deemed appropriate for factor analysis. After confirming the suitability of the sample for factor analysis, the construct validity of board processes and roles were assessed by examining parameters such as factor loadings. The cutoff value of 0.5 for factor loadings that are commonly recommended was considered . The EFA results showed that the factor loadings obtained from board processes ranged from 0.584 to 0.968. Three factors were identified that satisfied these criteria and they have named efforts norms, cognitive conflict and use of skills and knowledge, respectively. Similarly, EFA results for board roles performance ranged from 0.558 to 0.820, and three factors were found to meet these requirements, and they were named monitoring, resource provision and strategic roles, respectively. The study measured the factors' reliability using Cronbach's alpha to determine the internal consistency of each item. The results show that all the items registered scored above 0.7. As such, Cronbach's alpha coefficients in both board processes and roles met Nunnally's criterion, which suggests that the suitable coefficient range from 0.7 and above, demonstrating that the data used in this study were reliable . Table 1 represents questions used in the board processes and board roles parallel to the factor loadings of each statement and reliability results obtained after following EFA procedures championed by previous scholars . 4.2 presents the descriptive statistics for the board's roles, processes, and control variables of Tanzania's SACCOS. The results also show the mean for monitoring roles of 3.611 and 4.287 for resource provision. The implication is that most board members believed their roles were to monitor the SACCOS and provide various resources such as skills, networking and advice. On the other hand, the mean of the strategic role was 2.962, indicating that board members were neutral on their strategic roles. Regarding the board processes, the mean value of effort norms was 4.35, and for the use of skills and knowledge, it was 4.757. In other words, board members strongly believed that their behaviour was based on effort norms and the use of skills and knowledge to smoothen the execution of board roles. Source: --- Regression Results Before running regression, assumptions were tested, with a normal curve used to check for the normality of the dependent variables of data used. The curve was approximately normal . An alternative crosscheck was done through skewness and kurtosis. According to Ahmed , normally distributed data must have zero skewness with an accepted range of -1.0 and +1 and -3.0 to +3.0 for kurtosis. The skewness ranged from -1.6 to 1.6, and the kurtosis ranged from -0.5 to 3; these ranges were within the acceptable range. Furthermore, the study undertook the variance inflation Source: The regression analysis results in block 1, as presented in Table 3, demonstrate a strong positive and statistically significant relationship between board meetings and monitoring , resource provision and strategic roles performances . It also showed a positive relationship between SACCOS size and monitoring role . In contrast, the findings indicated that SACCOS age was negatively associated with the monitoring role . Moreover, Table 4 shows the regression results in block 2, which indicates that efforts norms are strongly positive and significantly related to all three board roles, namely; monitoring , resource provision and strategic role therefore, supporting hypothesis H1a, H1b, and H1c. Moreover, the results indicated that cognitive conflict had a negative and significant influence on strategic roles while having a negative insignificant on monitoring and resource provision roles; hence hypothesis H2c were accepted. Finally, the use of skills and knowledge has been shown to have a positive relationship with monitoring and resource provision roles; thus, H3a, H3b were supported. Concerning control variables, SACCOS age has a negative relationship with the monitoring role . In contrast, board meeting had a positive and significant influence on monitoring , resource provision and strategic roles. --- Discussion Efforts Norms and Board Role Performance Results in Table 4 revealed that effort norms are positive and significantly related to board performance regarding monitoring, resource, and strategic roles. The results implied that the higher the efforts norms on the devotion of time, preparation and participation of SACCOS board members, the more effective their contribution to and coordination to monitoring, resource provision, and strategic roles. In contrast to other boards made up of members from different organizations who are not necessarily owners, the SACCOS board members were also owners, users, and beneficiaries, so this setup could improve their sense of teamwork when preparing for and participating in activities, as well as the execution of their respective roles . Similarly, since SACCOS board members primarily come from the same working areas, they could readily convene on time as needed for the board, for example, employee-based SACCOS, which might increase their on-time follow-ups and commitment, which may result in improving the board's role performance. Also, the opinions of the majority of interviewees implied that board members felt a sense of ownership, which motivated them to exert greater effort by allocating more time to studying various management reports. Reviewing reports enables them to actively participate in meetings and enhance the effectiveness of their board positions by providing sound advice, monitoring, and quality strategic decisions for their SACCOS. One interviewee explained this by saying: "…SACCOS board members, as the owners, mostly have sincere efforts in scrutinizing the information from the management resulting in getting to know their managers well and learning how to monitor their operations to achieve SACCOS members' interests…." These results are in line with previous studies findings by Barroso-Castro et al. , Bailey andPeck , Heemskerk et al. , Minichilli et al. , which suggests that effort norms behaviour tends to foster collaboration among board members to improve the efficient performance of board roles. The findings, however, contradict those of Van Ees et al. , who found no connection between effort norms and board task performance. This study's results also support the social exchange theory, which postulates that the positive relationship between effort norms and board role performance is caused by the perceived value of the resources exchanged and the fairness of the exchange, which results in higher commitments among board members. In turn, effort norms can improve board monitoring by enhancing board member scrutiny of management reports or suggestions, which results in improved performance monitoring roles. Similarly, effort norms boost commitment and active involvement in meetings, increasing the effectiveness of resource provision, with board members working together to identify and secure resources needed to fulfil their strategic board roles. --- Cognitive Conflict and Board's Role Performance The results in Table 4 show that the coefficient of cognitive conflicts is negative, significant with strategic roles, and insignificant with monitoring and resource provision roles. Results also suggest task conflict in the SACCOS board has reduced the ability to implement strategic roles. A possible explanation for the significant negative relationship could be the habit of SACCOS board members toward open discussion. After all, SACCOS board members are all owners with equal rights to vote and make decisions . Equal voting rights for board members may lead to more open debate. However, this situation might also trigger negative emotions during decision-making among board members, as each member might want their ideas to be ideal enough to offset the positive sound effects of their discussions. This situation may impair their conversations and, sometimes, lead to destructive conflicting viewpoints, making other members unwilling to be involved in open dialogue that could affect the execution of the strategic role. The results are similar to the suggestions from Zona and Zattoni that intensive cognitive conflict leads to negative emotions among group members, as results offsetting its positive effects on the group's task performance. The findings also support the social exchange theory, which holds that a breakdown in board member perceptions of an unequal resource exchange is to blame for the negative association between cognitive conflicts and strategic roles. Sometimes cognitive conflicts can give the impression that board members are in competition with one another, which can lead to hoarding the pursuit of personal goals at the expense of the board's overall strategic goals, disappointing resource exchange, and having a detrimental effect on strategic roles. --- Use of Skills and Knowledge and Board Role Performance Results in Table 4 further show that the use of skill and knowledge has a positive and significant relationship with the monitoring and resource provision roles but is positively insignificant with the strategic role. Implicitly, using board members' expertise increases the board's ability to monitor resource provision. Using skills and knowledge can also lead to a clear division of tasks between directors, which are more likely to coordinate practical working teams that could enhance the effective execution of monitoring and resource provision roles. Applying skills and knowledge is also more likely to improve the quality of advice in addition to monitoring management operations by assessing the execution of board decisions on both financial and non-financial activities. Similarly, most interviewees confirmed that board members who used their skills and knowledge helped to minimise process losses by identifying problems and solving them professionally and on time, hence leading to effective board role performance. In addition, the interviewees supported the use of skills and knowledge from knowledgeable board members, mainly financial, because they contributed much to monitoring and advising on financial issues in SACCOS. They cited an example of using financial knowledge in credit committees as part of the board, which brought efficiency in approving and maintaining the quality of loans. One manager said: "….Board members who use their skills and knowledge are beneficial in making the board strong in monitoring the management of SACCOS and giving the right advice; this leads to the board's effectiveness... ." These results are consistent with earlier findings by Farquhar , Heemskerk et al. , Pastra , Zattoni et al. , and Zona and Zattoni , which showed that the board's ability to carry out its assigned tasks is increased by applying board members' skills and expertise. Furthermore, the study's regression and thematic analysis findings support the social exchange theory that the positive relationship between the use of skills and knowledge and board roles is due to the perceived value of the resources exchanged, leading to higher levels of effectiveness in board monitoring and resource provision roles. Using skills and knowledge can affect board monitoring and resource provision in several ways. For instance, a board member with financial expertise may provide valuable guidance and support to other members in financial matters because of better monitoring role performance. Similarly, they can lead to more effective resource provision, as board members can better identify and secure the resources needed to achieve the board's strategic goals. --- Control Variables Table 4 further illustrates that regarding control variables, SACCOS age, the results indicate a significant negative relationship with the monitoring role. At the same time, no evidence was obtained on the resource provision and strategic roles. The findings implied that, as SACCOS aged, the execution of monitoring roles suffered. In this regard, older SACCOS board members assumed that the management was already familiar with their functions and what was expected of them. As a result, managers of the old SACCOS could override all the board's decisions and pursue their interests, a practice that could render the monitoring roles unattainable. As such, the study results are consistent with Machold et al. , who found that the firm's age negatively affected the board's roles. Moreover, the study findings showed that board meetings positively were correlated with the board's role performance. Regular board meetings could motivate board members to prepare for discussions and evaluations of different options to engender better monitoring mechanisms and offer sound advice and decisions. Spending time on conversations and evaluations could also compel board members to apply their skills and knowledge to execute their roles effectively and efficiently. Moreover, frequent meetings can make board members participate in enforcing agreed-upon activities. The study findings also support the expectations of Elad et al. , Paul and Lipton and Lorsch regarding the essential nature of frequent board meetings in enabling the execution of board roles. --- Conclusion and Implications Conclusion This study investigated the relationship between the board process and board roles performance of SACCOS in the Arusha and Dar es Salaam regions of Tanzania. The results provide empirical evidence that the higher the devotion of board members' efforts norms, the greater the execution of their monitoring, resource provision, and strategic roles. Moreover, effective and efficient application of board members' skills and knowledge matters in executing monitoring and resource provision roles played a pivotal facilitative role. Finally, cognitive conflict negatively contributed to strategic role performance, but no evidence was obtained in monitoring and resource roles. Thus, the results support the view that effort norms and the use of skills and knowledge are essential predictors of the board's role performance. The variables are primary predictors because they transform a collection of board members into a team with shared knowledge, enabling them to function collaboratively to boost the execution of their board roles. --- Practical and Policy Implications The results reveal that efforts norms and using board members' skills and knowledge are critical to a board's performance in the SACCOS. The study recommends that SACCOS members, during elections of board members, should consider the candidates with specific competencies, skills, knowledge, and ability to work effectively as part of a team and collaborate respectfully to support the board's role performance. This helps to ensure that board members are well diverse and can bring different viewpoints and innovative ideas to the boardroom, leading to better decision-making and board performance. The study further suggests that promoting board member capacity building through training opportunities and knowledge sharing among board members is essential. Capacity building also helps the board members stay updated and be aware of the latest best practices and trends in the SACCOS field, which can apply to organisations for better decisionmaking and performance. Encouraging board members to continue to grow their skills and knowledge by attending training programs that would enable them to contribute more effectively to board discussions and decision-making can do this. Furthermore, due to the positive association between the use of directors' skills and the board's performance, thus, SACCOS has to promote a culture of information sharing and collaboration. Board members should be encouraged to share their expertise and learn from each other. In this case, the board chairperson must promote a participatory culture among board members. Such a participatory culture can encourage board members to engage in open discussions and raise their spirits of using skills and knowledge to find the best alternatives leading to board performance. For policy implication, the overall efforts norms, and the use of skills and knowledge are critical to effective board performance; thus, as a regulator, Tanzania Cooperative Development Commission should design the board performance evaluation system. Board performance evaluation can include evaluating the use of skills and knowledge of board members and their contribution to board performance. Evaluating board performance can help identify areas for improvement and ensure that the board is operating effectively through board members utilizing their efforts, skills and knowledge to support the execution of their roles to reach the set goals. --- factor tests to check for possible multicollinearity among the variables. According to Hair et al. , the values should not exceed a threshold of 5. In this study, all the values were below the suggested threshold; thus, the multicollinearity level within the data set be tolerated, as Table 3 demonstrates. The developed hypotheses were tested using multiple linear regression analysis presented in blocks 1 and Block 2. Block 1, shown in Table 3, includes Models 1, 2 and 3 were used to measure the control variables, and Block 2 represent model 4, 5 and 6 in Table 4, which combines independent variables of board processes and control variables. Checking the results of R Square values in block 1, it was realized that control variables were contributed to model 1 by 10%, model 2 by 18% and model 3 by 14%. At the same time, R square in block 2, models 4 , Model 5 , and Model 6 were raised to 48%, 32% and 21%, respectively. Therefore, R Square changes were used to tell that board processes which explained additional variance in predicting the board roles performance when the SACCOS age, SACCOS size and board meetings were controlled; thus, there is the necessity of measuring the relationship between variables. Furthermore, the F-statistic is significant in all constructs, implying that the data used were appropriate for regression analysis. To assess the normality of a dataset, one commonly used method is to perform a graphical check by plotting the standardized residual values on a histogram along with a fitted normal curve. --- Statistical Test for Normality --- Standardize d residual --- Kolmogorov

This paper examines the effect of board processes on efforts norms, cognitive conflict, and use of skills and knowledge on the board's performance in monitoring, resource provision and strategic roles in SACCOS in Tanzania. The social exchange theory provided theoretical guidance. A cross-sectional design with a mixed-methods approach was used. Data were collected using a questionnaire administered to 198 board chairpersons and an interview with nine key informants from SACCOS managers and cooperative officers. Data were analysed through multiple linear regression and thematic analysis. The results revealed a strong and significant relationship between effort norms and board roles' performance in monitoring, resource provision, and strategic roles. The results further indicated a positive and significant relationship between the application of skills and the knowledge of board members, coupled with their ability to monitor and provide the board with essential resources. The results further revealed that cognitive conflict negatively influenced board members' ability to play strategic roles. Moreover, no significant relationship was found out between cognitive conflict and board roles in monitoring or resource provision. Effort norms and the Use of board members' skills and knowledge significantly predicted board role performance. Therefore, the study recommends that the board chairperson encourage a participatory culture to ensure that board members exert enough effort into and apply their skills and knowledge in fulfilling their roles. Furthermore 2 , SACCOS members should elect board members based on their skills, knowledge, and ability to work and collaborate constructively and respectfully with other members.

A. Introduction Media information very influences all activities that are in the community even through knowledge. Many media of information trusted by the community including television, radio, culture, religious or community characters as well as traditional characters, internet, television even university is an information media for knowing and learning something people want. Some of the data that writers take to know the media level of information affecting people. Based on the NEW Radio survey in June 2017, 82.08% of radio listeners in Central Bangka include farmers, fishermen, and people traveling by car plus MSME players. According to BPS Central Bangka , 72.81% of the people of Central Bangka who work as fishermen and farmers still listen to the radio. This means that radio is still a reliable financial literacy in Central Bangka, to find out how the influence of education on Sharia financial literacy in Central Bangka, and to find out whether cultural variables, local influencers, education, and broadcasting are the variables that affect Islamic financial literacy in Central Bangka. --- B. Literature Review Based on OJK Regulation Number 76/POJK.07/2016, it is stated that financial literacy is knowledge, skills, and beliefs that affect attitudes and behaviour, improve the quality of decision making and financial management to achieve prosperity . The purpose of Islamic financial literacy is to improve the quality of personal financial decision-making and be better at changing individual attitudes and behaviour in financial management to determine and use financial services based on consumers' and institutions' needs and abilities, community products and services to achieve prosperity. When viewed from the OJK's explanation, it means that Islamic financial literacy is a person who knows and can act in managing finances. Different from Huston, according to , Islamic financial literacy is an integral part of human capital. It can be used in economic activities to improve consumers' standard of life expected by society . Meaning that someone will be happier, and in the middle of life will develop and manage finances. And while according to , Financial literacy can be defined as an awareness that encourages knowledge, skills, attitudes, and behaviour paintings to maintain sound financial decision making and ultimately achieve personal economic well-being, according to Hidajat and Hamdani Sharia financial literacy is defined as knowledge about Sharia finance that is used in financial decision-making . If we look at some definitions from experts, Islamic financial literacy has the main principles of Islamic finance: belief in holy needs, no usury, no Haram investment, and no predation. , no maysir , risk-sharing, and financing based on tangible assets factors that affect literacy economics sharia. Financial literacy is the translation of financial literacy, which means financial literacy. According to Podoman, Indonesia's National Strategy for Financial Literacy in 2013, financial literacy means "a series of processes or activities designed to improve the knowledge, confidence, and skills of consumers and the broader community so that they can better manage finance . According to Lusardi & Mitchell to find out the factors that affect financial knowledge, it can be measured according to age and gender, race/ethnicity, income and employment status, and other factors that attract researchers : Empirically, several research results show that gender or gender has an enormous influence on a person's financial obligations. It is found that the level of financial literacy of a man is higher than that of a woman. This applies to almost all age levels, including adolescents, adults, and older adults . The results of a study in the United States showed substantial differences in financial knowledge when viewed from the educational level factor. The results of this study found that people with low levels of education, in this case, those who did not attend tertiary education, had very low financial literacy compared to those with higher education . The low literacy rate of people with low education is mainly related to calculating income level, inflation, and the risks that may arise from their financial problems. Therefore, it can be assumed that the low literacy level is based on lower cognitive ability and personal financial management ability . Of course, this finding should not come as a surprise, as it has become commonplace that people with less education have less knowledge, understanding, and abilities than those with much higher education. In this case, it is not just the case in literacy-finance, but also other knowledge areas. Radio is the birth of broadcasting . Radio is sound. Sound is the main asset of radio exposure to the audience and the stimulation that the audience will correlate in the future. Psychologically, sound is the sensation that is perceived in the auditive packaging.According to Stanley R. Alten, sound is the friction effect of several molecules transformed through an elastic medium in a dynamic interaction between the molecule and its environment . The announcer's voice has a visual component that can create an image in the mind of the listener. Radio is an auditive medium , but it is cheap, popular, and can be carried or heard anywhere. Radio functions as a medium of expression, communication, information, education, and entertainment. Radio has the greatest strength as a medium for imagination because, as a blind medium, radio stimulates so many voices and seeks to visualize the announcer's voice.2 Radio creates the dream and is easy to get along with the audience. Radio is a form of entertainment that still exists today. This entertainment has been enjoyed by the people of Indonesia for a long time, of course. Apart from technological advances, some regions still really like listening to the radio as their primary entertainment while on the move. In villages or remote areas, radio is also in demand in big cities, such as driving a car. This means that radio itself follows the development of existing technology and becomes entertainment for its listeners. Not only that but today there are also many radios that you can listen to using the Internet. Moreover, listeners usually have an idol from the radio announcer's voice, making their objectivity radiate very high. This means that radio is still perfect today as entertainment for everyone. Cheap, practical, and economical, of course, can even be influenced by radio, especially when there is a radio drama that the public has been waiting for. Even though the technology is as advanced as now, Central Bangka, for example, people who love Culture and customs, whose majority are farmers and fishermen, choose radio as entertainment to accompany their activities. Joy in the middle of the forest and in the middle of the sea that can only be enjoyed is radio because of the limited internet signal and the limitations of people who know about technology in Central Bangka, making radio a favorite entertainment of course. There are several radio stations in Central Bangka, such as Sonora FM, Prima FM, SQ Fm, New Radio FM. Besides Lusardi and Mitchell, Djaali also suggests that Islamic financial literacy is influenced by interest. Interest is one of the factors that make someone want to know something . The part itself means a feeling of preference and interest in something or activity, without being asked. Curiosity is the acceptance of a relationship between oneself and something outside oneself-the stronger or closer the relationship, the greater the interest. Gunarso defines parts as personal things related to attitudes . Individuals attracted to an object will have the ability or motivation to perform a series of actions that approach or achieve that object. Woodworth and Marquis suggest that interest is a motive that causes individuals to be actively involved with the thing they are interested in . Therefore, a part is said to be a driving force to relate to the environment, a tendency to research, investigate, or carry out any exciting activity. If the individual is interested in something, the object is useful to meet their needs. From the description above, it can be concluded that interest is a feeling of liking or pleasure, encouragement or attraction from within a person, which leads to the object of his claim. The set of personal and permanent characteristics of behaviour is called personality. Buyer decisions are also influenced by personality traits, including age and life cycle, occupation, economic status, lifestyle, character, and self-concept.Social factors include reference groups, family, traditional leaders, community leaders, social status, and religious leaders' roles. Various groups greatly influence a person's behaviour. The main groups have ongoing interactions like family, neighbours, and co-workers. This primary group tends to be informal. People also fall into a secondary group, which tends to be more formal and less sustainable. This group includes religious organizations and labour unions, which means that the people's influence is powerful on something, including local influencers. And for this writer, use local influencers. Local influencers are people in the community of an area who are trusted and have positions and are respected by society and can influence people to follow what they say. as an example of traditional leaders, community leaders, and religious leaders in an area who are more trustworthy and highly respected by people . A person's purchasing choices are also influenced by major psychological factors, namely motivation, perceptions, learning, beliefs and culture, and attitudes, which means that Culture can influence asking someone to learn or know information or something new. For this factor, the researcher wants to use the culture "Nganggung" because suggestions can be increased for the Culture.Nganggung is a culture of carrying a complete meal on a pan covered with a red and patterned serving hood. Well, it usually contains rice, side dishes, fruits, and also various cakes. Simultaneously, the pan is a tray or tray that is generally made of brass and has a round shape. Nganggung usually occurs in the big months of Islam, such as Eid and Adha, Islamic New Year, and several other Islamic holidays. This Culture's uniqueness can be followed by all groups, young, old, male and female, and even non-Muslims. In this cultural activity, there will also be tauhsiyah filled by experts who convey new knowledge, messages, or lectures about things that should be done in life. Not infrequently, there are many new insights and information that can be obtained from Nganggung activities as well as strengthening the relationship between people and can also learn a lot about culture and religion here. Anriza researched with the title aims to determine the factors that affect Islamic finance and banking students' financial literacy awareness in North Sumatra and determine the main influencing factor that can influence this awareness . It was found that 56.71% were influenced by education, gender, economic behavior, and information obtained from electronic media. Research conducted by Agus Yulianto with 272 respondents indicates that knowledge of Islamic financial literacy does not affect anything about saving at Islamic banks or using Islamic insurance services . Respondents answered that a person's religiosity does not influence people to study Islamic financial literacy. The more likely it is that if the information is trusted and becomes a trend and is conveyed by certain people, it will significantly influence people's decisions in studying and choosing Islamic financial facilities. This study examines the effect of Islamic financial literacy and perceived quality on findings in the use of products or services in Islamic financial institutions-religiosity as a moderating variable. Demographic factors such as gender, age, education, occupation, income, religion, and marital status are control variables. The sample in this study was the general public who were taken through the purposive sampling method. Research conducted by Kiki showed that 92 people who became respondents indicated that the factors that influence Islamic financial literacy are influenced by gender, the area of origin, which is the number of financial institutions Islamic education is more about education and information media that convey information about Islamic financial literacy in the use of Islamic financial institution service products In research Anas Iswanto Anwar dan Rezki Putri The analysis results show that on average the majority of farmers of the three research locations included in the literacy category financial low, namely 122 respondents from 219 samples or 55.71 percent. Meanwhile for the category moderate or sufficiently literate financial literacy of 84 respondents or 38.36 percent and the literacy category only thirteen respondents or 5.94 respondent's percent only. respondents indicated that their education, gender, and sources of information can greatly affect Sharia financial literacy. For respondents with low Islamic financial literacy, they tend not to have education and do not know about information about Sharia financial literacy because they do not get good media . in research Arianti and Khoirunisa This study can conclude that first, income has a positive and significant effect on financial literacy. Second, investment has a positive and significant effect on financial literacy. Third, financial behaviour has a positive and significant effect on financial literacy. Fourth, the level of education has a positive and insignificant effect on financial literacy. Fifth, work experience has a negative and significant effect on financial literacy. Furthermore, finally, there is a simultaneous influence on income, investment, financial behaviour, education, and work experience on the level of financial literacy . In other research Septi Maulani of 237 respondents, the level of financial literacy which is influenced by gender, income, education, place of residence, and the influence of friends is an important factor affecting the respondent's financial literacy . In research Nurulhudan dan Lutfiati 232 respondents indicated that income, work experience, education, and environment influence Sharia financial literacy. this means that education and the environment can still be included in this study as variables. the environment described could be the influence of other people or the prevailing culture there . According to research in Malaysia, each respondent is influenced by cultural values, education, and the influence of others in studying Islamic financial literacy. This is a guideline for the author as well in carrying out this research. Based on research 350 respondents at the University of Sharjah, Sharjah, United Arab Emirates said that Islamic financial literacy from income, education, and a significant level of information delivery about Islamic financial literacy affects the use of Islamic banking products. The results show that respondents who have good Islamic financial literacy tend to have education and also prefer to use Islamic financial institution facilities. In research Murzan shows radio broadcasting as a medium for providing the information is very effective to the public. the level of radio coverage, program dimensions, and empathy for radio in Indonesia is still very large so that the radio charges can still . greatly influence someone, this shows that if we use the radio as teaching material for sharia financial literacy, it will greatly affect sharia financial literacy in Central Bangka. In research Ramadhani, Supaino and Fatira The Effect of Age, Gender, Residence, Education, and Income on the Level of Shariah Financial Literacy of respondents where gender does not have a significant effect in this study. education and income and the environment have more influence on the respondents' Islamic financial literacy . --- Figure 1Research Framework Figure 1 provides the research framework for this study to develop hypothesized relationships discussed in the following sub-sections in more detail. To estimate this relationship, the observed variables are entered into a regression equation one stage at a time. The hypothesis in this study is how the influence of radio broadcaster factors on Islamic financial literacy , local influencer factors on Islamic financial literacy ), cultural factors on Islamic financial literacy , local factors influencers on Islamic financial literacy ), formal school factors on Islamic financial literacy . The hypothesis is a supposition to observe facts on the research objectives for the basis of future research . The belief in this study is as follows; H1: NEW Radio broadcasting media has a significant effect on sharia financial literacy. Measurement based on other factors: The results of research conducted in several countries, apart from age, gender, and education, other factors empirically prove that several other factors influence a person's Islamic financial literacy. Information media such as electronic and print media and others' influence, including learning something . H2: Local influences have a significant effect on sharia financial literacy. Social factors include reference groups, family, traditional leaders, community leaders, social status, and religious leaders' roles. Various groups greatly influence a person's behavior. The main groups have ongoing interactions. This group includes religious organizations and labor unions. This means that the influence of the people around is powerful on something, including local influencers . H3: Culture has a significant effect on Islamic financial literacy. Psychological factors: A person's purchasing choices are also influenced by major psychological factors, namely motivation, perceptions, learning, beliefs and culture, and attitudes, which means that Culture can influence asking someone to learn or know information or something new . H4: Education has a significant effect on Islamic financial literacy. Measurement-Based on Educational Factors: The results of this study found that people with low levels of education, in this case, those who did not attend tertiary education, had very low financial literacy compared to those with higher education . H5: Cultural variables, local influences, education, and broadcasting as variables affecting Islamic financial literacy in Central Bangka. --- C. Research Methodology As for the place and time of research to complete this paper, the author ended the form at Bangka Tengah Regency in 2021. This type of research is logit regression research. Logit regression research is a study that aims to determine the extent to which the variation of a variable is related to the interpretation of other variables. "This research was conducted to explain what are the effects of Islamic financial literacy in Central Bangka. This study uses the Quantitative Method Quantitative research is a research method that focuses on In this approach, the researcher creates a complex picture, examines the text in a detailed report from the interviewee's perspective, and studies natural situations . In addition to interviews and observations, information can also be used, obtained through facts stored in the form of letters, diaries, photo archives, meeting results, souvenirs, event diaries, etc. . To measure the object of research, quantitative methods require some mapping, namely questions, variables, and indicators. Each variable to be measured will produce symbols and numbers, and these symbols and numbers will change according to the categories and information related to these variables. Using characters and numbers that have been processed according to quantitative methods, conclusions can be drawn from the problems in the research case. The objective of quantitative research is to develop and use mathematical methods, theories, and hypotheses related to events or circumstances. The measurement process is an integral part of quantitative research methods because it provides a strong relationship between empirical observation and the quantitative relationship's mathematical expression. For this research, the types and sources of data used are primary data and secondary data. Primary data is data obtained or collected by researchers directly from primary sources, including observations, interviews, and questionnaires. Meanwhile, secondary information is data that researchers can get from existing sources such as records and processed by other parties. The population of this scientific work is all the people of Central Bangka, totalling 186,783 people. From these data, the total male population is 96,443, and the female population is 90,340. The samples we took were based on the slovin techniquen=N/ with the two-stage random technique, namely the random selection of samples categorized into one group who live at home: n=186783/= 99.94649059 The scale used to measure the indicators on the dependent variable uses an ordinal scale , and the independent variable uses a Likert scale . the use of ordinal scale because you want to know the knowledge where questions will be presented based on indicators and will be given correct points of 1 and error 0. while the use of the linked scale with only 1-4 signifies and forces respondents to enter into the desired level the writer wants and adjusts to the git technique in explaining the author.Data analysis simplifies data in a form that is easier for others to understand and understand. Until finally found a general pattern of all of them, represented by statistical symbols, such as mean µ , number total , significance level α , correlation coefficient ρ , and others. --- D. Results and Discussion 100 respondents in this study were presented with 20 questions about Islamic financial literacy and 20 questions about the influence of information media on Islamic financial literacy in the people of Central Bangka. With the above data, it can be concluded that the variable radio broadcasting influences with a value of 21.634 and a significant 0.000, which means that H0 is not accepted because the p-value is <alpha, which means that H0 is not accepted and H1 is not rejected, which means that radio broadcasting information media has a significant effect. With the data above, it can be concluded that the variable Local Influencer influences with a value of 45.510 and a significant 0.003, which means that H0 is not accepted because the p-value is <alpha, which means that H0 is not accepted and H1 is not rejected, which means that the information media of Local Influencers has a significant effect. With the data above, it can be concluded that the variable Culture influences with a value of 3.641 and a significant 0.002, which means that H0 is not accepted because the p-value <alpha, which means that H0 is not accepted and H1 is not rejected, which means that the information media Culture has a significant effect. With the data above, it can be concluded that the variable Education has an influence with a value of -14,727 and is significant 0.999, which means that H0 is not rejected because the p value> alpha means that H0 is not rejected and H1 is not accepted, which means that information media Education has no effect and insignificant or just the same. 1. The NEW radio broadcasting media has a significant effect on financial literacy shariah The first hypothesis in this study is that radio broadcasting media has a significant effect on Islamic financial literacy in Central Bangka. Based on the results of the multinomial logistic regression test, it shows that radio broadcasts have a significant effect on Islamic financial literacy. Radio broadcasting variables With the data obtained, it is concluded that the variable radio broadcasts influences with a value of 21.634 and a significant 0.000, which means that H0 is not accepted because the p-value is <alpha , which means that H0 is not accepted and H1 is not rejected, which means radio information media Broadcasting has a significant effect which we can explain if we convey information via radio broadcasts using a program, the people of Central Bangka will receive the information more quickly. The factors include the factors above which were stated by Anriza who said that the electronic or mass media factors could affect the level of financial literacy depending on the public's trust in the media information . The second hypothesis in this study is that Local Influencers have a significant effect on Islamic financial literacy in Central Bangka. Based on the results of the multinomial logistic regression test, it shows that Local Influencers have a significant effect on Islamic financial literacy. The Local Influencer variable with the data obtained, it can be concluded that the variable Local Influencer has an influence with a value of 45.510 and a significant 0.003, which means that H0 is not accepted because the pvalue is <alpha which means that H0 is not accepted and H1 is not rejected, which means that local information media Influencers have a significant influence which we can explain if we convey information about Islamic financial literacy in Central Bangka through Local Influencers, so the people of Central Bangka will receive this information more quickly. This variable is also the same as what Kotler said that social factors can affect the level of ability, willingness, and knowledge of something, including financial iterations . Even so, we cannot say about Islamic financial literacy, but we can quote this opinion, which means that if local influences can influence Islamic financial literacy in Central Bangka, this is also the same as said by . --- Culture Has A Significant Effect On Financial Literacy Shariah The third hypothesis in this study is that the Nganggung Culture information media has a significant effect on Islamic financial literacy in Central Bangka. Based on the results of the multinomial logistic regression test, it shows that the Nganggung Culture has a significant effect on Islamic financial literacy. Culture Nganggung variable with the data obtained, it can be concluded that the variable Nganggung Culture has an influence with a value of 3,641 and significant 0,002, which means that H0 is not accepted because the p-value is <alpha which means that H0 is not accepted and H1 is not rejected, which means Information about the Nganggung Culture has a significant effect which we can explain if we convey information about Islamic financial literacy in Central Bangka through the Nganggung Culture, so the people of Central Bangka will receive this information more quickly. This is also new research that can be used as teaching material because transmission through culture is very rare nowadays. Even though the effect displayed is very significant and this can be a reference for further research. --- Education has a significant effect on financial literacy Shariah The fourth hypothesis in this study is that education has a significant effect on Islamic financial literacy in Central Bangka. Based on the results of the multinomial logistic regression test, it shows that Education has no significant effect on Islamic financial literacy. The education variable with the data obtained, it can be concluded that the variable Education has no influence with a significant value of -14.727 and 0.999, which means that H0 is not rejected because the p-value is> alpha , which means that H0 is not rejected and H1 is not accepted, which means education information media it does not have a significant effect which we can explain if we convey information about Islamic financial literacy in Central Bangka through and use education, the people of Central Bangka will act normal. This is influenced by the thinking of the Bangka Tengah people who are still lacking in education. Why is that? Whereas according to albeit and Rahman stated that education is the level of mastery of knowledge possessed by a person regarding how his or her ability to understand things is good and affects Islamic financial literacy. The story is different from the people of Central Bangka, who even attack students who do not carry out Islamic financial literacy properly . This is one of the things that must be improved so that people who get knowledge from formal education such as college must have their standards to understand what they are learning. --- Cultural variables, local influences, education, and broadcasting as variables affecting financial literacy Shariah in Central Bangka The fifth hypothesis in this study is cultural variables, local influence, education, and broadcasting as variables that affect Islamic financial literacy in Central Bangka. Based on the results of the simultaneous test, it shows that all variables should have a significant effect on Islamic financial literacy in Central Bangka. This can be seen from the results of the Chi-Square test; the resulting probability value is 0.000 smaller than alpha . but in the significant test, one variable is not significant. There are only 3 significant variables, namely the variable Radio Broadcasting, Local Influence, and Culture. Based on the results of the multinomial logistic regression test, it shows that Radio Broadcasting, Local Influencer, and Culture Nganggung have a significant effect on Islamic financial literacy. in Central Bangka. The three variables show results where p <alpha which means that it has a significant and accountable influence. Unlike the case with the education variable which shows p> alpha which is significant to 0.999, which means that the education variable does not affect Islamic financial literacy in Central Bangka. --- E. Conclusion Based on the Research Results of the Influence of Radio Broadcasting, Traditional Nganggung, Local Influencers, and Education on the Level of Islamic Finance discussed in chapter 4, the following conclusions can be drawn: first, The results showed that, first, the radio broadcasting variable had a positive and significant effect on Islamic financial literacy with a value of 21.634. Second, the Local Influencer variable has a significant and positive effect on Islamic financial literacy with a value of 45.510. third, cultural variables have a positive and significant effect on Islamic financial literacy with a value of 3.641 and a significance of 0.002, which means that H1 is not rejected. fourth, education has a negative and insignificant effect on Islamic financial literacy with a significant value of -14.727 and 0.999, which means H0 is not rejected. Fifth, the simultaneous test results show that all variables have a significant effect on Islamic financial literacy, this can be seen from the results of the Chi-Square test; the resulting probability value is 0.000 smaller than alpha . but in the significance test, one of the variables is not significant. There are only 3 significant variables, namely Radio Broadcasting, Local Influence, and Culture. sixth, based on the results of the multinomial logistic regression test shows that Radio Broadcasting, Local Influencers, and Nganggung Culture have a significant effect on Islamic financial literacy. These three variables show results where p <alpha which means they have a significant and accountable influence. Unlike the case with the education variable which shows p> alpha which is significant up to 0.999 which means that the education variable has no effect on Islamic financial literacy.

This research was conducted to see the influence of Radio Broadcasts, Traditional Singing, Local Influencers, and Education on the Level of Islamic Financial Literacy in the People of Central Bangka. This type of research is a quantitative study using the regression analysis model. To measure the dependent variable indicators the ordinal scale is used (0-1), and the independent variables are using the Likert scale (1-4). The results of this study indicate that the results of simultaneous testing show that all variables have a significant effect on Islamic financial literacy. This can be seen from the results of the Chi-Square test. However, in the significance test, one of the variables was not significant, namely education, only 3 variables had a significant effect, namely radio broadcasts, local influencers, and culture (nganggung). Based on these statistical results, it can be understood that through radio broadcasts with sharia economic programs, the public gets important information about this matter. Likewise, influential figures such as traditional leaders, community leaders, and religious leaders who have adequate sharia economic insight will contribute to increasing sharia economic literacy. Through the Nganggung Culture, the community will receive this information more quickly.

Introduction The diffusion of the internet has deepened social stratification. High levels of material and digital resources foster engagement in online activities, increasing internet users' digital skill levels . Digital skills concentrate among more advantaged users and provide additional tangible benefits in their "real life," resulting in the accumulation of material resources and status gain . Furthermore, highly skilled users are better at handling the effects of online problems-such as fraud, identity theft, or privacy violation-in their daily lives . The internet has also profoundly changed how people access the labour market. Now, job seekers have access to a greater number of vacancies on a global scale while employers gain more and more visibility and can receive more applications . This situation creates larger pools of candidates competing for a limited number of vacancies, especially for the most insecure jobs . In other words, employment platforms create an unfavourable imbalance in the candidates/vacancy ratio, with negative implications for individual applications. Moreover, regardless of their job-related competencies, those with strong online job-seeking skills increase their visibility and their chances of being hired, while other candidates are much more likely to remain unemployed . Prolonged periods of unemployment and intensive job-seeking practices generate psychological distress . Distress can be reduced by the availability of material and psychological resources, and by job seekers' perception of themselves as being capable of seeking employment . High levels of digital skills may therefore contribute to reducing psychological distress resulting from the platformmediated job-seeking process . In this context, this article examines how persisting inequalities in digital skills shape the outcomes of the platform-mediated job-seeking process. High digital skill levels should help people obtain tangible benefits from the online job-seeking process while avoiding its negative implications . However, how digital inequalities impact the outcomes of platform-mediated job-seeking processes is unclear . We address this lack of understanding by proposing that the digitalization of job search fosters social stratification because of the unequal distribution of digital skills among job seekers. We examine this proposition by surveying 1000 Spanish job seekers in a context where high internet access rates coexist with widespread use of employment platforms as well as high unemployment rates among young people . In other words, the volume of job seekers is high and most of them use the internet to identify and apply for vacancies. Our results show that advantaged job seekers with higher educational levels and financial resources do not face significant challenges in the understanding and use of employment platforms. In contrast, job seekers with lower educational levels and limited financial resources struggle with this process and experience psychological distress. Accordingly, the main contribution of this article is to demonstrate that the current theory of socio-digital inequality applies to the sphere of online job-seeking processes and show its implications. Specifically, we contribute to and advance this theory by identifying and analysing some of the key outcomes of inequalities in digital skills in terms of labor market inclusion. More broadly, these findings are important for social exclusion research, given that most job-seeking processes are now digitalized, although we know little about the implications of this digitalization on job seekers with different levels of digital skills. In the remainder of this article, we present and articulate key findings from recent research into digital inequalities and online job-seeking. Subsequently, we present our sample and overall methodology before introducing and discussing our findings as well as their implications for both theory and practice. --- Theoretical Background --- Digital Inequality Since the first stages of internet diffusion, academics have been concerned about digital exclusion. Initially, researchers focused on the "first-level digital divide." According to Attewell , this phenomenon consisted of "the technological gap between those who have access to information and those who do not have access to it." Early research on this topic focused on the inequalities in internet access that affected traditionally disadvantaged social groups . In recent years, however, there has been a considerable increase in the number of internet users, especially in Western countries. Thus, academics are now focusing on the "second-level digital divide" derived from the unequal distribution of beneficial internet use and digital skills. Specifically, digital skills concentrate among users with higher levels of education or socio-economic status . While it is true that the quality of an internet connection and the type of technology available for navigation are important, internet users' digital skills are essential if they are to obtain tangible benefits from the use of the internet as a tool. Many authors have therefore attempted to build reliable and accurate tools to measure them . In this vein, van Dijk suggested utilizing the distinction between operational skills, which are needed to handle computer hardware and software, and the informational skills required to search and filter online information. Van Deursen and colleagues have also added several dimensions to the digital skills construct, such as strategic skills, formal skills, and internet communication skills . These dimensions have been successfully assessed and validated using representative samples of the British and Dutch populations . They reveal that high levels of digital literacy are associated with advanced internet use. However, general navigational skills do not guarantee effective and beneficial internet use in all its applications and must be coupled with specific skills for each advanced internet use if they are to foment the obtention of tangible benefits . Scholars have also studied the mechanisms by which people develop high digital skill levels. Internet users with higher levels of digital resources and those who benefit from the possibility of connecting from multiple locations and with greater frequency, demonstrate advanced internet use . In addition, better digital resources increase both digital proficiency and users' confidence in their ability to evaluate and filter online information ). The concept of "digital capital" describes the accumulation of internet users' digital skills and resources. It represents a link between online and offline opportunities, as it can increase internet users' material resources when actioned through internet use. The "third-level digital divide" revolves around the differences between users based on the tangible benefits they derive from the same internet use . Different levels of resources correspond to different levels of digital capabilities, raising different levels of online engagement . Increased offline resources lead to increased levels of digital capital, which are manifested, amongst other things, in increased levels of digital skills, particularly those of an instrumental nature. Consequently, internet users differ in terms of the tangible social, economic, and professional outcomes of internet use. Thus, people with more resources have a greater ability to minimize the impact of the negative effects of internet use . As such, the thirdlevel digital divide acts as a reinforcer of social stratification because it allows people with higher levels of offline resources to increase these further via their digital resources and skills, thus obtaining higher levels of tangible benefits and avoiding the negative effects of internet use . This model would be in line with the concept of "credential rents" , which refer to the greater economic outcomes enjoyed by the advantaged social classes that access and hoard higher levels of education, expertise, or skills. --- Online Job-Seeking Among the uses of the internet that can bring tangible benefits to people's lives is platform-mediated job search. Job seekers have a better chance of finding employment via internet and of that job being better paid . Using the internet may reduce the time involved in finding a new job by 25% compared to traditional, offline, channels . Furthermore, recruiters and prospective employers have access to large databases of potential candidates for their selection processes, which is important at a time when online job-seeking has penetrated most sectors and is especially popular among young people who are more confident in using the internet . However, these benefits also have significant downsides. For low-skilled workers, the digitalization of job-seeking has led to an imbalance between the number of job seekers and the number of online vacancies . This situation raises fierce competition among job seekers with similar profiles. In contrast, for high-skilled workers in the IT sector, high demand and a limited number of job seekers have shifted competition to labour market intermediaries, who struggle to find candidates . The fact that highly skilled IT employees can potentially benefit from a "privileged location" within the labour market is again related to credential/skill rents from the social class theories by Sørensen and Wright . In the current digitalized labour market, creating and presenting an image as a competent professional on job-seeking platforms is extremely important in obtaining employment . Furthermore, the ability to instrumentally use personal and professional information has become key to successfully seeking employment online . Accordingly, van Deursen et al. have suggested a link between digital skills and the ability to use the internet instrumentally to achieve personal goals, emphasising the role of instrumental and communication skills. Likewise, Karaoglu et al. found that strategic online job-seeking skills facilitated the use of social networks for job-seeking purposes. This type of skill would involve intuiting how algorithms sort and present applications received by recruiters, and then using this intuition to tailor CVs, profiles, or applications to make them more visible . Specific types of digital skills are concentrated among people with higher levels of material and educational resources . Consequently, job seekers with lower levels of material and educational resources and online job-seeking skills will experience greater difficulties in finding employment via internet, building on the employability problems already suffered by the more disadvantaged social classes in pre-digitalized contexts . This triggers unemployment and lower-paid jobs for low-skilled job seekers, with consequent negative implications for gaining new material resources. Additionally, the psychological well-being of job seekers may suffer because of prolonged periods of unemployment and job-seeking. In fact, unemployment has a negative impact on both mental health and life satisfaction, i.e., the longer the duration of the employment search, the greater the impact . Paul and Moser also found that the severity of psychological distress resulting from unemployment accumulates over time, leading to a continuous decline in mental health. The material and psychological resources of job seekers, however, have been described as being very helpful in preventing psychological distress associated with job-seeking. In fact, financial hardship and social exclusion can lead to job-seeking fatigue and negatively affect the quality of subsequent re-employment . At the same time, psychological capital can reduce job seekers' fatigue and prevent these negative outcomes. For example, job seekers with less confidence in their job-seeking skills are likely to be pessimistic, see themselves as unemployable, give up on reemployment more easily, and be less resilient to setbacks . Hence, we would expect that job seekers with less material and online job-seeking skills would have more difficulty finding a job online. Additionally, online job-seeking skills should be useful in reducing psychological distress related to online job-seeking. Our literature review highlights the importance of digital skills in deepening social stratification. Digital skills generate tangible benefits and allow the avoidance of side effects on internet users' lives. This should also be the case for online job-seeking. Online job-seeking skills should help internet users find employment and avoid psychological distress related to long-term job-seeking. These skills should be concentrated mostly among users with higher levels of material resources, thus increasing the differences between them and people with fewer resources. Despite the importance of this topic, there is a lack of empirical work that analyses the relationship between material resources, digital skills, and online job search outcomes. --- Methodology --- Sample Spain provides a valuable setting for this inquiry given the high number of internet users in the country, reaching a rate of over 90% . This includes non-nationals and individuals residing in rural areas, with the only exception being people older than 75. Spain also provides an excellent case study because of a combination of high unemployment rates and the widespread adoption of employment platforms. We conducted a survey using a sample of 1000 subjects aged between 18 and 65 . All participants were part of the active population, were internet users, and had at least minimal levels of upper-secondary education. We utilized a panel of 2,722.476 Spanish people and used random sampling. To ensure representation of the Spanish active population by age and education level, we introduced quotas based on percentages provided by the Spanish National Statistics Institute . Our sample included both employed and unemployed individuals actively seeking jobs across a wide range of job sectors, including both lower and higher positions, to provide a comprehensive picture of Spanish online job seekers. Participants had to have been actively seeking employment within the last year, to ensure the inclusion of a sufficient number of participants who used the internet to seek employment. Table 1 shows the sociodemographic characteristics of the respondents. The age variable divides the sample into four groups, with the 18-29 age group being the largest and the 51-65 age group the smallest . The sample is made up of approximately the same number of women and men . Furthermore, participants can be grouped into 4 levels via the educational attainment variable. The largest group represents people whose highest level of education is upper secondary and the smallest group represents people with a doctorate . --- Analysis We used structural equation modelling because it enables the transfer of a theoretical model with latent variables to a testable statistical model and the comparison of nested models . Specifically, we employed the diagonally weighted least squares estimation method using a polychoric correlation matrix to manage the combination of continuous and categorical variables ). We performed all analyses in the free statistical environment R may not provide clear guidance . To show that the hypothesized model fits the data to a high degree of approximation, we also report the parsimony ratio . Additionally, following Barrett's recommendations, we provide the results of the 𝜒 2 goodness-of-fit test-despite its potential sensitivity to large sample sizes. Furthermore, we have examined two mediational chains: material and educational resources-digital resources-digital skills and material and educational resources-digital resources-online job-seeking skills. Subsequently, indirect effects and their corresponding 95% confidence intervals were estimated using 5,000 bootstrap samples. Moreover, to better understand these mediational chains, we estimated an alternative model with direct paths from material and educational resources to digital skills and from material and educational resources to online job-seeking skills. Finally, we worked with full information. No data imputation has been carried out because the construction of some variables required this. Nonetheless, in the worst case, sample attrition was low and the sample size continues to meet the requirements for SEM estimation: It exceeds the minimum requirement of 200 participants and the number of indicators per latent variable is high . --- Measures We introduced three blocks of independent variables to our model. First, we introduced the variables that assess internet users' resources, including level of education; an ordinal variable with 5 categories running from upper secondary to doctorate . Lower levels of education were not included because a low level of education corresponds to a reduced, or near zero, use of online platforms for job-seeking . Even so, there are differences among internet users with higher levels of education depending on their skills and their material resources at home. Next, we introduced a weighted household income indicator , because people who live with others benefit from economies of scale in consumption, which individuals living alone do not have access to . Following Eurostat's recommendations, we computed this indicator by dividing the household monthly income by the equivalised household size, by assigning a value of 1 to the first household member and 0.5 to each additional person . Another set of independent variables includes indicators that assess internet users' digital resources. First, we introduced the technology present in the household variable, calculated by adding up the number of pieces of technological equipment that a participant declared to have in their home. The result was a numerical variable ranging from 0 to 11 . Secondly, we introduced the variety of internet access points variable; a numerical variable with a range from 0 to 6 , constructed by summing up the number of places from which the respondent had connected to the Internet in the six months prior to the survey. Thirdly, we used a set of indicators assessing internet users' digital skills, variables that we developed based on the work of van Deursen et al. . It comprises 12 items measuring operational internet skills, content creation skills, informational internet skills, and communication skills. Each item has a five-point response scale . The punctuation of each subject on this scale is calculated by adding the answers given to each one of the 12 items. Consequently, the values of this variable range from 0 to 65 . Additionally, we have developed and introduced a new scale to assess digital skills for online job-seeking. Items for this new scale have been generated based on 77 semi-structured interviews: 44 with people actively using the Internet to search for employment and 33 with recruiters at employment agencies or in human resources positions for large companies. We built both samples to cover the widest possible range of profiles and areas of job-seeking. We asked research participants about actions that would make it more likely for a job application to be noticed during a selection process, hence increasing a candidate's chances of being contacted for an interview. We identified 11 actions related to job-seeking and we transformed them into items to be included on the scale . In addition, our model included two dependent variables. The first was a variable that measured the success of the online job search. To this end, we used the following item: In the last 6 months, I have been offered a job interview . This allows us to measure the frequency with which participants were invited to be contacted for an interview after having applied for a job online in the six months prior to the survey . Table 2. Items that make up the digital skills for online job-seeking scale. Below is a series of things that can be done with a professional network profile or in a job search. Indicate to what extent the following statements about using the Internet to look for a job are true for you [reply options: totally false ; quite false ; neither true nor false ; somewhat true ; totally true ; I don't know ; I don't want to answer ]. Item 1 I know how to choose a profile picture appropriate to apply for a job. Item 2 I know how to ask for recommendations from people so that recruiters can judge my job potential. Item 3 I know at what time to send a job application so as to make it more visible. --- Item 4 When I search for a job, I know how to check that I am using the same terms or keywords used by companies offering jobs that interest me. Item 5 I know how to describe my skills in my profile to make them more visible. Item 6 I know how to describe the positions I have held. Item 7 I understand how the algorithms that sort applications on job search platforms work. Item 8 I know how to make an application that catches recruiters' attention. --- Item 9 I know what information to prioritize in my CV Item 10 I know how to use the keywords included in job postings to describe my profile/CV. Item 11 I know how to upload information to my public profile about events or things of professional interest to demonstrate my experience. Table 3. Frequency table for the contacted for a job interview variable. In the last 6 months, I have been invited for an interview after sending an application for a position advertised on the Internet. The second dependent variable was job-seeking burnout , used as a measure of psychological distress. We obtained this variable through a Spanish version of the Maslach Burnout Inventory emotional exhaustion subdimension , adapted to the job-seeking field. This subscale consists of nine items which are assessed with a seven-point Likert scale from 0 to 6 . Internal consistency values were excellent . --- Categories --- Hypotheses Levels of material resources are related to levels of access to digital technologies that enable internet connections . Also, people with high levels of material and educational resources show greater autonomy of use, assessed as the variety of places from which a person can connect to the internet . Both digital technology and autonomy of use are part of the "digital resources" construct . Accordingly, our first hypothesis is: H1. Material and educational resources have a significant and positive impact on internet users' digital resources. High levels of technology at home facilitate the acquisition of high levels of digital skills by internet users ). Also, autonomy leads to higher levels of digital skills . However, general navigation skills cannot be applied to categories of advanced internet use . People need a specific set of skills for each one of these categories; however, generic digital skills can still help develop specific digital skills . Accordingly, we hypothesize that: H2. Internet users' digital resources have a significant and positive impact on their digital skills. H3. Internet users' digital resources have a significant and positive impact on their online job-seeking skills. H4. Internet users' digital skills have a significant and positive impact on their online job-seeking skills. Likewise, we explored two possible mediational chains: material and educational resources-digital resources-digital skills and material and educational resources-digital resources-online job-seeking skills. This approach allows us to conceptualize digital resources as a kind of conduct through which the presumed positive impact of the material and educational resources can be transferred. For online job-seeking results, job-seeking skills should help internet users give more visibility to their applications, thus helping them find a job . Hence: H5. Internet users' online job-seeking skills have a positive and significant relationship with the frequency with which they are offered job interviews. Long-term job-seeking can generate psychological distress , even when using online job-related platforms . This relationship can be explained through the job resources and demands model . We conceptualize job-seeking as an activity requiring a high number of ordered tasks, which are structured, coercive, and have specific goals. According to the job resources and demands model, job-seeking can be considered a demanding activity that requires the use of personal resources. High pressure in job-seeking and the emotional demands associated with unemployment both play a role in reducing personal resources and have an impact on job seekers' burnout. Specifically, the concept of burnout can be used to study emotional responses to work-like activities , where job seekers with low resource levels can experience a dysfunctional response . On the contrary, job seekers with more personal resources are less at risk, hence, a key resource for job seekers can be found in their digital skills. Additionally, digital skills can help internet users avoid psychological distress related to internet use . Candidates' material and psychological resources, together with a high level of self-confidence, should help in reducing their psychological distress . As such, we would expect online job-seeking digital skills to help internet users reduce the probability of suffering burnout related to the search process. Accordingly, our last hypothesis is: H6. Online job-seeking skills reduce the probability of suffering burnout in relation to job-seeking. Figure 1 includes all the relationships between the constructs discussed above. --- Results --- Model Fit As shown in Table 4, our data had a good fit with the proposed theoretical model . The only fit index that resulted below the acceptance criterion was SRMR, which was just at the limit. Regarding 𝜒 2 , we ought to refuse model fit, but, as stated before, these results may be caused by the large sample size. In fact, the ratio between the 𝜒 2 value and the degrees of freedom is acceptable . --- Direct Effects Figure 2 and Table 5 show that all relationships are significant and in line with our theoretical model. Material and educational resources positively impact digital resources . Moreover, the higher the digital resources, the higher the digital and online job-seeking skills . These job-seeking skills are also positively predicted by digital skills , while, in turn, they predict a higher frequency of offered job interviews and a lower level of job-seeking burnout . --- Indirect Effects Before examining indirect effects estimations, we must look at the alternative model. This model is almost identical to the proposed theoretical model but includes two new paths: from material and educational resources to digital skills and from material and educational resources to online job-seeking skills. Its fit is also acceptable , but the added paths are not significant . It seems then, that internet users' material and educational resources do not have a direct effect on their digital and online job-seeking skills. Nevertheless, considering a 95% confidence level, both the indirect effect of material and educational resources on digital skills and that of material and educational resources on online job-seeking skills are statistically significant. In other words, digital resources not only have a direct positive effect on digital and job-seeking skills, but they also represent a transfer mechanism that connects internet users' material and educational resources with the outcomes of online job-seeking and burnout. --- Conclusions and Discussion This article has examined how inequalities in digital skills shape the outcomes of online job-seeking processes. With this aim, we used Spanish data, as this country boasts a high percentage of internet access, along with a pronounced use of online platforms for job search and high unemployment rates, particularly among youth 2018;Ragnedda et al., 2022;Robinson, 2009Robinson, , 2012)). Hence digital resources enable the transfer of the positive benefits of existing materials, and educational resources are transferred. Furthermore, we found a qualitative difference between generalist navigation and specific skills and suggest that navigation skills are not a one-size-fits-all set of abilities because advanced internet use requires specific skills . Thirdly, we tested the relationship between online job-seeking skills, the frequency with which candidates are offered a job interview, and their psychological distress during this process. According to our model's predictions, we found that online job-seeking skills have a positive relationship with the frequency of job interview invitations received and a negative relationship with psychological distress. Online job-seeking skills also help reduce the burnout related to online job-seeking above and beyond search outcomes, and positively impact the likelihood of being contacted for an interview. Thus, independently of internet users' psychological resources, online job-seeking skills reduce the psychological distress related to online job searching. These findings advance social inclusion research in an area that remains relatively unexplored despite its current importance. Specifically, this relates to research into digital exclusion that has yet to examine how persisting digital inequalities shape access to work and employment, with particular reference to platform-mediated jobseeking. Building on these findings, we argue that the unequal distribution of digital skills across specific segments of the population strongly shapes the development of online job-seeking skills. Because these online job-seeking skills are critical in searching for and securing work in the current platform-mediated employment landscape, their unequal distribution contributes to enforcing the digital exclusion of the most vulnerable in an additional yet critical domain, namely, work and employment. Our findings also have implications for both public and private employment services and job seekers. Since job seekers with higher levels of digital skills are more likely to get a job online, prospective employers face a risk of loss of human capital. Indeed, candidates with high levels of competencies, but little ability to make their online applications visible, are more likely to be discarded. Therefore, it would be advisable for human resources services, as well as temporary employment agencies and employment offices, to provide users with a training plan for online job-searching. Secondly, our findings provide important insights into designing inclusive labour market policies for the most vulnerable groups. They outline the critical need to implement active policies that aim to facilitate the development of online job-seeking skills across all population segments. Achieving this goal would help in supporting labour market integration and prevent public health problems related to burnout and psychological distress. As digital resources are not equally distributed among the population, the internet has become a vector of inequality. In fact, the most advanced internet uses, as well as the tangible benefits that arise from them, are concentrated among those segments of the population with the greatest levels of material and digital resources. As in the case of reading and writing skills in 20th-century societies, digital skills should be a universal objective in education. They should be taught as mandatory in schools since they shape the outcomes of public and social life today. This study also demonstrates the need to learn not only generic navigation skills but also those that specifically convert beneficial internet uses into tangible benefits. Consequently, it is important to address this issue by bringing to the fore the need to act against digital illiteracy. --- Limitations Firstly, our sample has some limitations when it comes to representation, because we decided not to include people with lower levels of education. The reason lies in empirical evidence, which shows that people with lower levels of education usually use "real world" contacts to find a job. While this choice may bias the results, as we don't consider the impact of digital literacy on psychological distress in all population groups, we believe that our findings are still highly relevant to this area of research. Secondly, due to the design and aims of this study, our survey did not include information about offline job-seeking. Whilst this limits the possibility of comparing offline and online processes, it also raises a stimulating path for future research in this direction. Furthermore, while 30 out of 1000 subjects reported receiving an invitation for a job interview daily, we do not have information about the number of applications that each subject submitted. However, we found that 16% of the sample was sending at least one application every day. This makes it less improbable that 30 subjects would be contacted for an interview with this frequency, though this may also very well depend on qualification levels and sectors. The design of data collection for future research in this area may benefit from the inclusion of indicators pertaining to the number of applications submitted per day. Finally, the exclusive use of Spanish data may be a limitation in terms of the generalisability of our results. Therefore, we believe that further research should be carried out in countries other than Spain. --- We first examined the relationship between material and digital resources and found that income and educational level significantly and positively impact dig-ital resources. Higher levels of offline resources enable better internet access and autonomy. Secondly, we tested the relationship between digital resources and digital skills, conceived as both navigational and online job-seeking skills, and found that high levels of digital resources promote high levels of digital skills (Ragnedda, --- Conflict of Interests The authors declare no conflict of interests. --- About the Authors Stefano De Marco holds a PhD in sociology and is an associate professor in the Department of Sociology and Communication at the University of Salamanca. His research focuses on digital inequality, democratic divides, and digital political participation. He has recently led a project aimed at understanding how digital skills can facilitate employment opportunities through online platforms and how this can impact access to the labor market in Spain. He is member of the international DiSTO project on digital inequality. Guillaume Dumont is an associate professor of ethnographic research at Emlyon Business School, France. He is the Director of the Ethnographic Institute and a member of OCE Research Center. Ellen Johanna Helsper is professor of socio-digital inequalities in the Media and Communications Department at the London School of Economics and Political Science. She is departmental PhD programme director and co-convenor of the Politics of Inequalities programme at the International Inequalities Institute. She is the global coordinator of the From Digital Skills to Tangible Outcomes project and consults widely outside academia. She has a PhD in media and communications from the LSE and an MSc in media psychology from Utrecht University. Alejandro Díaz-Guerra is a pre-doctoral researcher at Complutense University of Madrid, supported by an FPU contract from the Spanish Ministry of Universities. His main research interests are related to time perspective constructs, behavioural economics, and socioeconomic status estimation. He holds an MSc in official statistics and has previously worked for the Spanish National Statistics Institute . --- Mirko

This article examines how inequalities in digital skills shape the outcomes of online job-seeking processes. Building on a representative survey of Spanish job seekers, we show that people with high digital skill levels have a greater probability of securing a job online, because of their ability to create a coherent profile and make their application visible. Additionally, it is less probable that they will experience burnout during this process than job seekers with low digital skill levels. Given the concentration of digital skills amongst people with high levels of material and digital resources, we conclude that the internet enforces existing material and health inequalities.

Social Capital and Self-Rated Health among Older Adults in China: A Multilevel Analysis The whole world is graying rapidly. Health and well-being of older adults has become a worldwide public health concern and has been attracting increasing attention from scholars across the globe. As the home of more than one fifth of the world's population, China is also the leading force in this graying trend. It is projected that the proportion of the persons aged 60 years or older will be about 30% of the Chinese population by 2050 . But, the health of the Chinese elderly is still understudied. Recent years has witnessed a growing interest in examining the association between social capital and health among older adults . Only limited studies has focused on studying social capital and health in the Chinese cultural context . And there existed variations in these findings in terms of the relationship between social capital and health status. To better understand the link between social capital and health in China, this study used a more recent data from a more representative sample and employed a multilevel perspective to explore new evidence pertaining to whether social capital, both at the individual-and community-level, was associated with self-rated health among older adults in China. --- Social Capital and Health Social capital has become an increasingly popular concept in a number of sociological studies, though much has also been written on the ambiguities both in its conceptualization and measurement . Even with the variations in its conceptualization, most studies in current literature draw upon the four streams of "social capital" represented by the definition of Bourdieu , Coleman , Putnam , and Lin respectively. Bourdieu defined social capital as "the aggregate of the actual or potential resources that are linked to a durable network of more or less institutionalized relationships". For Bourdieu, social capital is the sum of the actual and potential resources that can be activated through membership in organizations and social networks. Coleman defined social capital by its function as "a variety of different entities having two characteristics in common: they all consist of some aspects of social structure, and they facilitate certain actions of individuals who are within the structure". According to Coleman, social capital includes obligations and expectations, information, and norms embedded in relations among persons. Putnam's social capital emphasizes the vibrancy of associational life and an informed public at the community level. And Putnam's social capital is "features of social organization, such as trust, norms, and networks that can improve the efficiency of society by facilitating coordinated actions" . Another popular definition of social capital provided by Nan Lin has defined social capital as "valued resources embedded in a social structure that are accessed and/or mobilized in purposive actions" . For Lin, social capital is resources derived from one's direct or indirect social ties. The variations in these widely cited definitions are evident, yet they share a similar assumption that social capital is a kind of social resource and may bring "benefits accruing to individuals or families by virtue of their ties with others" . A considerable body of research has documented the proactive function of social capital in promoting better health . Considering the increasing decline of physical health status and the increasing need for support among older adults, social capital theory has become a promising perspective that shed light on the health of older adults . For example, Berry et al. found that social capital, measured as community participation, personal social cohesion, trust, and reciprocity, positively affected the general health and mental health of elderly Australians. Another empirical study by Snelgrove et al. evidenced the positive effects of social capital on self-rated health in Britain, with social capital being measured as social trust and civic participation. Different impact of social capital on health was also evidenced. For example, Veenstra reported that community social capital, measured by the availability of public spaces, was negatively associated with depressive symptoms but was irrelevant to long-term illness and self-rated health in Canada. Unfortunately, most of these empirical evidences were from Western industrialized countries. These countries have social settings quite different from China, particularly when considering the availability of old age support and caring systems. Only limited research has focused on the effect of social capital on health/well-being of Chinese older adults. Whether social capital has any impact on health among Chinese elderly is still unclear. For example, both empirical research by Wang et al. and Yip et al. confirmed the positive influence of social capital, measured by trust at both individual-and community-level, among rural residents in China. Another study by Norstrand and her coauthor indicated that social capital, measured by the close ties among family members, friends, and neighbors, mutual help between people, and number of years of being a Communist Party member, was significantly associated with health among urban Chinese older adults, but not for older adults in rural areas. Moreover, most studies were conducted in limited townships and are limited in representing the more general characteristics of the social and economic life of older Chinese adults. Meanwhile, the term "social capital" is still encapsulated by some ambiguities both in its conceptualization and measurement . And the literature has not yet reached a consensus on how to measure social capital in the Chinese cultural context. For example, three studies on social capital and health in the Chinese context varied from each other in measuring social capital. From the existing literature on social capital and health, it appears that the social variables most often being used as reflection of social capital are trust, participation in voluntary organizations, social support, perceived help, network, and so on . But some empirical studies have doubted the full applicability of using indicators and questionnaires developed in western cultural context to measure social capital in Chinese society . Further, social capital at the community level in some studies was aggregated by individual level perceptions . Such measurement may be subject to potential errors . --- Study Objectives Current Chinese cultural context is an interesting and unique setting to study the dynamics between social capital and health among older adults. The conceptualization of social capital emphasizes social capital as social resources and reciprocity embedded in social networks with others . Network resources and reciprocity with others have always been valued in the traditional Chinese cultural norm of collectivism. However, China has undergone enormous social, economic, and political changes over recent decades, which have presented mounting challenges to the maintaining of such traditional Chinese cultural values. The changing scenarios of demographic structure together with the social forces of urbanization and globalization have been transforming the family patterns and family life of ordinary Chinese people. Traditionally upheld virtue of filial piety seems dismantling and family support of old age in current China is mainly practiced by the sharing of family expenses and spiritual solicitude at the time . The changing patterns of family life and transformation of cultural norms seem to be disintegrating the traditional social networks related to family kinship and the traditional reciprocity and mutuality patterns in Chinese culture. Meanwhile, organized social services for the elderly in China are not yet well developed. And, facilities for subsidized institutional care for the elderly are still limited in China. China's elderly care facilities have beds for just 1.6 percent of its 176 million citizens over 60, and most of these facilities are concentrated in the largest cities . Policy makers are still looking to help from family members and communities to care and to maintain a healthy life for the elderly . Since 1990, the Chinese government has promulgated a series of "community construction" programs to mobilize mutual help and support at community level to provide needed support for the elderly population . The many social and health changes in China are raising many questions related to the health of the Chinese elderly and the impact of their networks as well as the mutuality and reciprocity embedded in their networks in the transformation era of China. The present study fills gaps in current literature of social capital and health in China by using a more representative sample from a recently collected dataset; measuring social capital at both the individual-and community levels. The individual-level social capital was measured by individual's perception while the community-level social capital was tapped from community survey data; measuring more facets of social capital by closely following the seminal definitions of "social capital" and the specific cultural context of China; examining the interaction effects between individual-level social capital and community-level social capital. --- Conceptualization of social capital Following the major four streams of defining "social capital", this study conceptualizes social capital as a feature of associational life at both the individual-and community-levels. And social capital in this study was examined by both structural and cognitive dimensions proposed by Harpham et al. . According to Harpham et al. , structural social capital includes the connectedness with others both in formal and informal organizations, while cognitive social capital refers to the attitudinal manifestations such as reciprocity, trust, support, and sense of belonging. 2) is 10 years lower than the world's average . And many blue-collar workers have been allowed to retire in their 40s. So in this study, we did not further select the study sample based on age criteria but just included all respondents in this dataset. --- Methods --- Data --- Variables and Measures The dependent variable was self-rated health, in response to the question that asked the respondent to rate his/her general health on a five-point scale of "very good", "good", "fair", "poor", and "very poor". The majority of the respondents in this sample self-assessed their health as "good" or "very good". And the response were collapsed into two categories that contrast "at least good health" against "fair or poor health" . Our main independent measures of interest reflect social capital, which was measured at both the individual-and community-level and will be examined from two broad dimensions of structural and cognitive social capital. At the individual level, structural social capital was measured by the older adult's network size and whether the older adult was born in the current community. Older adult's network size is a composite measure summed by respondent's responses to "the number of children" "the number of siblings still alive" and "the number of married siblings". With China's clan culture legacy, being born in the same community the respondent was living during the interview would imply more network ties and connections with others. Cognitive social capital at the individual level was measured with three dichotomous measures that capture support and mutuality between respondents and others: whether respondents have received any help from others ; whether respondents have provided any help to others ; and whether respondents believed that they could receive help in the future . Structural social capital at the community level was measured by the number of amenities and associations available for the elderly within the community. Previous study has used the availability of public spaces within community to measure community social capital. In addition, the Chinese government initiated setting amenities and associations for the elderly people with the aim of mobilizing mutual support within community . And more amenities and associations for the elderly would imply greater access to seek help and mutual support and rapid diffusion of information and behavioral norms within the community. This variable was a summed number of recreation facilities , organizations and associations available for older adults to use. The cognitive social capital at the community level was measured by the number of years the central community committee office has been in existence. In China, the community central committee office is the lowest level of official administration which is responsible for routine functions of civil affairs within the community. The community committee office in China has a very close link with its residents and most of the time it represents its residents . According to Poortinga , community committee indicates the sense of neighborhood connection and the history of community committee can be used to measure the social capital at the community level. Respondent's socioeconomic status and demographic characteristics were included as control variables. Respondent's Hukou status was also included as control variable. Hukou status is a primary and salient social identity in China. Hukou system categorizes Chinese people into two groups of rural and urban, with urban residents being privileged in economic resources, education, employment, and social welfare benefits . Respondents were from two provinces, with Gansu being one of the poorest province while Zhejiang one of the most economically vibrant province in China. So a dummy variable for province with 1= Gansu and 0 = Zhejiang was also included to compare differences across these two provinces. --- Statistical Analytical Strategies A series of multilevel logistic regression models were estimated with GLIMMIX procedure in SAS 9.2. Impacts of the individual-level factors and the community-level social capital variables were assessed as the fixed effects, whereas the variations across communities were assessed as random parameters. All models utilized the logit link function, with the logarithtm of the odds of good health as the outcome. Firstly, a two-level null model of 996 individuals nested within these 96 communities/villages with no predictor variables in the fixed or the random parts of the model was tested. In this model, the probability of good health was only the function of the community where the respondent lived. The model notation goes as: Logit = β 0j + ε ij In this model, the subscripts i and j reflects respondent and the communities the respondent was living in, respectively; p ij measures the probability of respondent to report good health status; β 0j is the sum of an intercept that vary over the communities; and ε ij refers to the random component of the error term. The individual-level variables were then included in the model to examine the impact of individual-level predictors , including the individual's basic demographic information, socioeconomic status, and individual level social capital among respondents in different communities: Logit = β 0j + β 1j X ij + ε ij The next model included all the individual-level predictors , but further considered the fixed effect of the community-level social capital variables : Logit =β 00 + β 10 X ij + β 01 W j + µ 0j + µ 1j X ij + ε ij Finally, an interaction term was added to test whether there were any intersections between the individual-level social capital and the community-level social capital: Logit = β 00 + β 10 X ij + β 01 W j + β 11 W i X ij + µ 0j + µ 1j X ij + ε ij Specifically, an interaction term formed by the respondent's perceived help in the future with the years of community committee has been in existence was tested. --- Results Listwise deletion of missing data produced a sample size of 996 at the individual level and a sample size of 96 at the community level. A T-test indicated that there were no significant differences between the respondents included in the final sample and those deleted in terms of key variables in this study. Table 1 presents a summary of the variables used in the final analyses. The respondents on average had a poor educational background. The majority of them was married and were living with their spouses in rural areas. More than half respondents selfassessed their health as at least good. --- [INSERT TABLE 1 HERE] Table 2 presents the results from multilevel logistic models. Logits were converted into odds rations and were reported in Table 2. Also reported were the 95% confidence intervals , established by exp × . The null model with no predictors indicated a significant variation in self-rated health of respondents in 96 communities . A reduction of 0.22 in the random parameter from Model 1 to Model 3 indicates that some of the variations found by Model 1 were explained by differences of socio-demographic characteristics in the population. As expected, gender, age, and Hukou status were significantly associated with respondents' self-rated health . The predicted odds of reporting good health for males was about 48% higher than it was for females . Similarly, respondents with urban Hukou status were 87% more likely to report good health than respondents with rural Hukou status. Respondents aged 60 years or older on average had reported worse health compared to respondents younger than 60. Further, the respondents in Gansu province reported significantly worse health compared to respondents in Zhejiang province . After adjusting for individual-level socioeconomic variables , the effects of age , urban Hukou status , and province of residence were still significant. But the effect of gender lost its significance. Both education and annual household expenditure were significantly related to self-rated health. Respondents who had received some formal education were 50% more likely to report good health compared to those illiterate. But the effect of household expenditure was significantly negative . Each additional thousand Chinese Yuan increase in the annual household expenditure was associated with a 4% decrease in the predicted odds of reporting good health. After adding five individual-level social capital variables , still significant were the effects of age , province of residence , education , and annual household expenditure . The effect of Hukou status no longer showed any statistical significance. This implies that the effect of rural-urban Hukou status on self-rated health was somewhat confounded by the individual-level social capital. Among the significant social capital variables, were the respondent's perceived help in the future and whether the respondent had received any help from others. Respondents who were sure that they could get the needed help and support in the future were more likely to report good health compared to those who were not . However, respondents who reported that they had received help from others were more likely to report poorer health compared to those who had never received any help from others. Community-level social capital variables were added in Model 5. Statistical results indicate that the number of amenities or associations available for the elderly within the community was significantly associated with self-rated health among the respondents. Also, introducing social capital variables at the community level did not change the significant impacts of age, education, annual household expenditure, receiving help from others, and the individual-level social capital measured by the perceived help in the future. The effect of interaction term formed by "perceived help in the future" and "years the community committee has been in existence" was found to be significant . It indicated that the longer the history of a central committee office within the community, the more likely the self-rated health of respondents would be significantly influenced by their perception of getting the needed help or support in the future. Comparing the values of model fit statistics in these six models indicate that the model that included social capital at both the individual-and community-levels were comparatively better ( --- [INSERT TABLE 2 HERE] --- Discussion and Implications First of all, our study finds support that certain dimensions of social capital at both the individual-and community-level were significantly associated with health among the Chinese elderly. Consistent with other studies on social capital and health status among Chinese population , our study indicate that the cognitive dimension of individual social capital, measured by the perceived help in the future, was significantly related to self-rated health among the respondents even after accounting for individual demographic and socioeconomic status variables. Also in line with previous study on the relationship between social capital and health in the Chinese context , our results did not confirm the significant association between structural social capital at the individual level and health status. This suggests that the individual-level cognitive dimension rather than the structural dimension of social capital is important to the perceived health of older Chinese adults. This result also supports the conclusion drawn by Fujisawa et al. that "cognitive social capital has an impact not only in Western societies but also in Asian societies". Further, the importance of perceived help in the future testifies to the legacy of traditional cultural values in the Transformation Era of China. As stated in a popular saying in China -"We need to raise children in order to get needed help in old age ", traditional Chinese culture emphasizes the expected obligations of the adult children to care for their aged parents. With its rapid economic development and globalization, there has been a fading emphasis of adult children's obligations to their parents . However, it appears that legacy of traditional culture is still affecting people's life, such as through their perception of their health. It also implies that whether one can get the needed help and support when in need is a looming concern among older Chinese adults. And, Chinese government is confronted with the challenge to create safety nets to its elderly population to help them to live a healthier life. Another individual-level social capital variable, whether the respondent had received any help from others, was found to be significantly but negatively related to good self-rated health. Our analysis results did not support the positive impact of receiving help on health reported in the previous studies . One possible explanation for the negative direction is that we did not make a distinction between monetary and non-monetary help. Based on their study of social capital and health among older Chinese adults, Norstrand and her coauthor have argued that in the Chinese context, material support impacted health in a different way from that of the emotional support. Another possible explanation is that some respondents received help just because they were in need of help owing to their poor health. Since 1990s, the Chinese government has practiced such programs as minimum standard of living program, old-age endowment insurance, and the Five Guarantees support program to provide benefits to the elderly population, especially those with long-term illness and poverty . However, this unique effect has yet to be examined with further research. In line with previous studies in Western context and studies in the Chinese context , our statistical results confirmed the significant association between community-level social capital and better health independent of individual-level demographic characteristics, socioeconomic status, and individual-level social capital. Structural dimension of community-level social capital, in the form of the number of the amenities and association within the community available for the elderly, was found to be positively associated with good self-rated health among the respondents. The more amenities and associations available for the elderly within the community implies that there were more available public spaces and more accesses to mutual support, and rapid diffusion of health information and healthy norms of behavior . Also, such amenities and organizations may induce more collective actions, which hold promise for improving the health and well-being of the Chinese population by promoting healthy behaviors and by producing an environment that enhances social networks and facilitate the exchange of support . The community-level cognitive social capital indicator, number of years the community committee office has been in existence, was not associated with the respondent's self-rated health. However, the cross-level interaction term formed by the respondent's "perceived help in the future" and "years the community committee office have been in existence" was found to be significant. Self-rated health of respondents living in communities that had established their community committee earlier was more likely to be influenced by their perception of getting the needed help in the future. This implies that the effect of individual cognitive social capital on self-rated health is conditional on the history of the community committee office. This result also supports the finding by Wang et al that individual-level cognitive social capital interacts positively with community-level cognitive social capital to affect the health in China. The committee office within the community in China is responsible for assisting in implementing policies and programs from the central and regional governments, protecting resident's legal rights, and providing services to its residents. It is generally believed that such committees and the persons serving on these committees are always trusted and regarded as the sources for consultation, help, and protection whenever community residents are in need of . The puzzling impact of community committee office also reflects the ordinary people's mixed feelings of governance in the transformation era of China. On the one hand, market economy has gradually reduced the role of local government in satisfying ordinary people's basic living needs. On the other hand, the effects of a planned economy and the cultural tradition of collectivism were still lingering around. The significant interaction between the individual cognitive social capital and the community social capital also suggests that the Chinese government needs to practice effective policies and programs to enhance social capital at the community level to improve health status of its elderly population. In addition, the random parameters across communities and intra-class correlations from our statistical analysis indicated that self-reported health among older Chinese adults had some variability that could be reasonably attributed to the community. We observed significant random parameters across communities in all multilevel models. This implies the important influence of community contexts in shaping health patterns among the respondents. The consistent significant random parameters across communities indicate that smaller spatial units such as the village in rural areas and the neighborhood in urban areas may not be regarded merely as the boundaries of administration in China. They are also substantial units of society that exert a meaningful influence on elderly residents' health. This result further implies that there are still great differentiations in economic and social life between different communities in China, even with its rapid developing economy in recent years. The Chinese policy makers are challenged to narrow the differences across different groups in different regions. Although this study has a number of strengths, it also has several limitations. First, the data is from a cross sectional study so it is difficult to test the possible reverse causality between social capital and health, suggested by other scholars . The possible reverse causality cannot be ruled out in this study. Second, this study is limited in its large number of missing cases. CHARLS pilot study requires that the questionnaire items about older adult's health status and the transfer and mutuality with others should only be answered by the older adults themselves and no proxy respondent can answer these questions. The T-test revealed no significant differences in terms of health and social capital variables between the older adults included in the final sample and the deleted ones. But the large number of missing cases undoubtedly hampered the final statistical results. Third, the assessment of social capital in this study is limited. CHARLS was not specifically designed for tapping the social capital among older adults in China. So several other indicators of social capital examined in previous studies, such as the civic participation and voluntarism in western context, and Communist Party affiliations in Chinese context were not tested in this study. Accordingly, the evidence of relationship between social capital and health presented in this study may not be taken to mean that similar effects exist for other dimensions of social capital.

This study examined the association between social capital, at both the individual-and community-level, and self-rated health among older adults in China. Using data from the 2008 Pilot Survey of China Health and Retirement Longitudinal Study, a series of multilevel logistic models were estimated in SAS 9.2. The association between social capital and self-rated health was examined among 996 adults aged 45 or older from two provinces in China, while controlling for demographic characteristics and socioeconomic variables. Our results suggest the significant association between social capital, at both the individual-and community-level, and self-rated health. The individual-level social capital in the form of perceived help in the future and the social capital of community in the form of the availability of amenities and association within the community were significantly related to self-rated health. A significant cross-level interaction effect between individual-and community-level social capital was also observed.

During almost the whole twentieth century, but especially in the second half, transformations in the food field have been increasing. In societies with a higher socioeconomic development, with local markets well provided with food, this has, in general terms, involved a larger production and distribution of products at an industrial level and more fluid access to a large variety of food by the public, at much more accessible prices. In developing countries, with home economies -and not only home economies -very attached to small production and subsistence agriculture, this process has had very different effects, and not always positive. The reality is that, as the FAO points out , one billion people live in chronic hunger globally. --- Food knowledge is social and industrial trust In developed countries, very well provided, the argument, however, is to the contrary. On the other hand, we find that such production, nowadays more massified and industrialised than ever, has likewise seen itself affected in a different way: by different health problems related to industrial production as well as, and consequently, by a growing mistrust among the population towards the food they consume . In this context, it should also be noted that systems for representing citizens evolve more slowly than production and distribution systems, with technological innovations in products and packaging, places of production and transport, storage and distribution, as well as in relation to other individuals. Consumers have only a partial understanding of these developments, which span the entire period from what might be termed the 'traditional' or 'preindustrial' situation to the present-day era of 'cracking' and 'assembly'. In this pattern of evolution, the role of food manufacturers has changed and food itself is now presented in two ways: on the one hand, it has become more artificial, and on the other, it must retain a certain 'natural' status, as this is the sole tangible nexus with nature for the consumer. Moreover, given that consumers today now have a much wider range of food flavours to choose from, it is important to consider the fact that they can have no more than a partial knowledge of the variety of tastes and aromas of foods whose organoleptic and microbiological qualities have improved and continue to do so. The time lag between one experience of a particular foodstuff and the next occasion when it is eaten makes it more difficult for people to build up a personal memory bank of different food tastes . On the other hand, changes in food come up against a degree of dissatisfaction on the part of the consumer, who is faced, for example, with 'industrial' foods that he finds bland, lacking in the taste and aroma these foods used to have, and perhaps even dangerous. Thus, nowadays it is impossible not to emphasise the doubts and the feeling of danger connected to the impossibility of control over industrial production processes by a broad strata of consumers. In the same way, we are living in times in which urban people -most of the population in industrialised countries -have contact with only end elements of the chain, that is, final points of distribution and products. This implies that, concerning food, consumers' trust is taken for granted in phases of the process that are absolutely unknown by them, leaving out the ignorance of the processes undertaken by experts, who are entrusted with the control of the different phases of the process that extend from the earliest stages of production to the table, through the factory and the supermarket. The consumer, in short, gets further and further from the food production process and loses control over it as well as information about it. In view of this situation, the public opinion manifests its fears and concerns widely and in different ways. In the words of the North American anthropologist Sydney Mintz , 'recent history and mass media are preparing us for an environmental catastrophe. We are willing to discover impurity at every step, willing to be threatened by impurity at every moment'. Unawareness of the mentioned production procedures, of food transformation, makes consumers mistrust the industrial processes and the mediators who create, transform, pack, transport them, etc. One of the most important consequences of this is the increasing attempts by consumers to recover control, to go back, even mentally, to those stages in which things were 'pure', 'healthy', 'authentic' and handmade, made with timey In a 'traditional' way, in short. Much of our longing for what is pure -water, air, vegetables, fruits -looks back yearning for a past more and more on its way to extinction . A past that brings in 'quality' and 'naturalness' to an uncertain present. It is not strange, then, that publicity has decided to exploit these aspects broadly, offering 'traditional', 'old style', 'homemade', 'grandmother's' dishes, etc. Consumers usually sum up their perception of this entire panorama by mentioning notions to do with authenticity and quality, which implies perfect adaptation to their culture and representational system. Food cannot be observed as an isolated element from their cultural framework. Otherwise it can lose all meaning to the extent that it does not seem to be 'real food'. --- New strategies This trend, this 'search' by consumers for what is natural, hand-crafted, has not gone unnoticed by the different social actors involved in this process: public and private institutions, producers, industrialists, traders, publicists, editors, restaurateurs, tourism promotersy . At the same time that users try to recover control over what they eat, from the other side of the commercial barrier this trend towards what is 'traditional' and 'natural' is reaffirmed. But we cannot forget that, as with every other aspect of cultures, nothing is static, everything is ductile and is in continuous re-elaboration, re-creation. Thus, 'tradition' is built; it is 'created' and 're-created' every day . Hence, for example, a strategy that fast-food chains have taken into account in order to guarantee themselves future customers has precisely been that of building customers' loyalty from the time they are children, making them integrate fast-food taste and smell as part of their past, of their personal food tradition. As the North American writer Eric Schlosser points out in relation to fast-food establishments in the USA, 'the flavours of food during childhood seem to leave a permanent mark, and adults usually go back to them without knowing why most of the time. This ''soothing food'' of childhood becomes a source of pleasure and calmness, an increasing attempt to provide the public in general with broader information about the offered product, information that takes us to its origin', and that points out the 'traditional' and 'handcrafted' elements of it. This is an element that fast-food chains strongly try to provide. The search for 'traditional', 'authentic' dishes, the appreciation of 'family cooking', old cookbooks, orally transmitted recipes, etc. takes place, very particularly, in a social and historical moment in which the industrial transformation of food increasingly moves consumers of industrialised countries away from the control and knowledge of its production procedures. Going back to what is 'traditional', to the old cooking 'teachings', to things the origin of which is known -including the growth of the importance and of the search for 'bio' products or for ecological products -to those whose transformation procedures are trusted, then becomes a value intimately linked to the enjoyment of cooking as well as to nutrition in general terms. Such an appreciation involves a social demand for these types of products, which has an effect on different social, cultural and economic environments -such as the case of individuals and families, especially those who can afford to place quality before price; 'gourmets' and gastronomic critics and their influence face to face to the media; the publicity and editorial fields, cooks and restaurateurs, touristic operators, etc. -who, from their own professional spheres, have contributed and still contribute to this fact as well, inside a general social process that does not seem to be, at least in the near future, drawing to an end. --- The Mediterranean diet as an outstanding sustainable resource In a now very well known paper, Gusssow and Clancy suggested the term 'sustainable diet' to describe a diet based on food chosen regarding not only health, but also sustainability . Gussow and Clancy concluded that consumers should, when possible, buy 'locally produced foods', which is less energy intensive and supports the local and regional agriculture. More recently, in 2008, the Report of the FAO Regional Conference for Europe made important statements about sustainable diets: 'that the goal of increased global food production, including biofuels, should be balanced against the need to protect biodiversity, ecosystems, traditional foods and traditional agricultural practices' . As pointed out at the beginning of this article, with modern agriculture and globalisation of foods, the concepts of the sustainable diet and human ecology have been neglected in favour of intensification and industrialisation of agricultural systems. More recently, the growing concern over food safety has motivated a renewed interest in organic foods and locally produced and sustainable foods, particularly in the Mediterranean area. Movements like 'Slow Food', born in Turin , are based on the defence of local productions, biodiversity and sustainability, where both socio-cultural and biological aspects are included: 'Slow Food is a non-profit, eco-gastronomic membersupported organization that was founded in 1989 to counteract fast food and fast life, the disappearance of local food traditions and people's dwindling interest in the food they eat, where it comes from, how it tastes and how our food choices affect the rest of the world. To do that, Slow Food brings together pleasure and responsibility, and makes them inseparable' . As every food system in its own biosocial context, the Mediterranean diet is an outstanding resource, yet it has not been fully acknowledged and enhanced within the Euro-Mediterranean partnership , for the achievement of effective sustainable development in the Mediterranean, as was pointed out in the report Mediterranean Strategy on Sustainable Development, issued in 2005 by the United Nations Environment Programme: 'Mediterranean agricultural and rural models, which are at the origins of Mediterranean identity, are under increasing threat from the predominance of imported consumption patterns. This trend is illustrated in particular by the decline of the Mediterranean dietary model despite the recognized positive effects on health. The prospective scenario for the expected impacts of trade liberalization, climate change and the lack of efficient rural policies offers a gloomy picture in some southern and eastern Mediterranean countries, with the prospect of aggravated regional imbalances, deeper ecological degradation and persistent or accrued social instabilityy . Create a conducive regional environment to help countries develop policies and efficient procedures for the labelling and quality certification of Mediterranean food products and to promote the Mediterranean diet' . In this sense, and as Akkelidou points out regarding the Mediterranean area, 'Current agricultural and trade policies are inappropriate . Thus, it is imperative to reform them to ensure the quality, safety and availability of food, as well as the sustainability of production, resources and the environment'. --- Conclusions In short, the consumer is moving further and further away from the processes used to produce the food he eats, foodstuffs that are treated in industrial processes that are beyond his influence and in many cases his understanding. Consumers are becoming increasingly unhappy with such processes and are looking instead for produce they believe to be 'natural', 'healthy' and 'traditional'. In doing so, they are trying to regain their control over and confidence in the food they eat. In this context , the Mediterranean diet is an outstanding resource -locally produced in culturally coherent contexts -for the Mediterranean area. While good nutrition should be a goal of agriculture, it is imperative that concerns over sustainability are not lost in the process. Many dietary patterns can be healthy, but they can vary substantially in terms of their resource cost. The Mediterranean diet has been characterised, analysed and promoted through a variety of methods within a number of scientific and applied disciplines . It continues to be recognised and appreciated as a sustainable and culturally coherent diet in the Mediterranean region. In this framework, the recent recognition in November 2010 of the Mediterranean diet as a World Immaterial Heritage by UNESCO can be an important future challenge for Mediterranean local food production and manufacture. However, this major challenge involves a strong commitment to safeguarding and promotion that cannot be neglected. In this framework, the active role of the public sector is absolutely necessary.

Objective: To define the Mediterranean diet model inside a Mediterranean social and cultural food framework and from the perspective of a local model of consumption. Design: Reflexion and review of literature available in relation to the Mediterranean diet, locality and proximity. Setting and subjects: Mediterranean region and its populations. Results: The Mediterranean local food system under the term Mediterranean diet encourages local production and local consumption. From this perspective, this model takes part of every local Mediterranean lifestyles and encourages sustainability. Conclusions: From a local Mediterranean point of view and as a proximity model of consumption, Mediterranean food and diet can be a sustainable resource for the Mediterranean area.

Introduction In England, one in five adults smokes and tobacco causes 18% of deaths. 1,2 In Scotland smoking rates are higher, at 24% 2 and smoking is estimated to account for up to 27% of deaths. 1,3 Tobacco is responsible for about half the socioeconomic position difference in death rates 4 because smoking rates are higher among those with lower SEP in the majority of developed countries. 5 Although smoking rates have been falling in the developed world, reductions have been slower amongst disadvantaged smokers and inequalities in smoking rates have increased in recent years. 6 SEP differences in quit rates and low quit rates among disadvantaged smokers have also been observed in studies of many smoking cessation interventions. 7 There is some evidence to suggest that smoking cessation programmes that provide a combination of pharmacotherapy and structured behavioural support together appear to have some success among disadvantaged smokers. 8,9 Quit rates in these types of interventions are poorer among disadvantaged smokers than for more affluent smokers but this can be mitigated by focusing resources on disadvantaged communities. 8 If a greater proportion of disadvantaged than affluent smokers are encouraged to take up an intervention then the gap in smoking is less likely to widen. 8,9 Why do socioeconomically disadvantaged smokers find quitting more difficult? Possible reasons include lack of support for quit attempts, greater addiction to tobacco, less motivation to quit and less compliance with treatment. Features of cessation programmes may also favour high-SEP groups such as referral routes and the structure or timing of treatment. Smokers with low SEP may find quitting more difficult due to less support from their family or community for their quit attempt. 10 This may be because there is a higher proportion of smokers in their social network and/or their spouse or partner may be more likely to smoke. 11 This lack of support has been identified as a reason for low quit rates among disadvantaged smokers. 12 Addiction plays a powerful role in mediating the outcome of any quit attempt. 10 The majority of smokers are highly dependent on tobacco and despite being motivated to quit smoking and being aware of the threat to health many regular smokers are unsuccessful in their quit attempts. 13,14 Disadvantaged smokers are often more highly addicted, for example they may smoke more cigarettes a day or smoke on waking, thus they may find quitting harder. 6,15 Addiction has been found to explain some of the relationship between SEP and quitting. 16 Motivation is an important driver underlying successful smoking cessation. 17 There have been inconsistent findings, however, on whether motivation to quit differs by SEP. 6,18 Likewise, use of pharmacotherapy and smoking cessation services have not been found to explain the relationship between SEP and quitting, particularly in the UK. It may be, however, that stronger commitment to effectively using pharmacotherapy and to keep attending services is important for quitting. 19,20 Disadvantaged smokers are less likely to comply. 20,21 In this paper, we use the term compliance to describe engagement with and adherence to a smoking cessation programme. We acknowledge that this term is contested and has been described as denoting a somewhat paternalistic attitude towards non-adherers. 22,23 However, compliance is a term widely used in the literature on smoking cessation and for consistency we use it in this study. The nature of smoking cessation programmes is also likely to affect the chances of quitting. In a review of 50 RCTs 24 and another review of 23 studies since January 2000 25 group-based behavioural support was not found to be significantly different from one-to-one support. However, in a review of the effectiveness of the UK's NHS stop smoking services, 26 group support was found to achieve a higher quit rate than one-to-one support, but one-to-one interventions had a higher uptake. In 2009 Kotz and West described findings from the English Smoking Toolkit Survey, which consistently showed a strong socio-economic gradient in the success of quit attempts. They concluded that: 'there is a strong gradient across socioeconomic groups in success. . . Determining the cause of, and counteracting, this gradient is paramount in reducing health inequalities'. 6 The present study aims to directly address the first part of Kotz and West's conclusion by exploring the pathway between SEP and smoking cessation amongst smokers who tried to quit with the support of NHS Stop Smoking Services in the UK. --- Methods This paper reports results from secondary analysis of data collected in two separate studies of NHS smoking cessation programmes. The studies employed an identical research design and were conducted by the same research team. The smoking cessation programmes studied were an intensive group programme and one-to-one support in a pharmacy setting in Glasgow, Scotland 27 and primary care-based programmes in Nottingham and North Cumbria, England, both of which offered one-to-one behavioural support with some group support. 28,29 All clients were also offered pharmacotherapy during their quit attempt. This medication was free except for a small prescription charge paid by some clients. All programmes were delivered by trained advisors based on national guidelines. However, these guidelines allowed services to offer their programmes in venues and formats that suited the local population; thus there were variations in programme content within as well as between sites. Further information on the nature and content of services and the areas in which they were offered is available elsewhere. 27 -29 Clients who attended the Glasgow services between March and May 2007 and the English services between October 2001 and March 2003 were included. The outcome variable was CO-validated continuous abstinence at 52 weeks. Data collection complied with the Russell standard commonly used in smoking cessation studies. 27 -30 To measure SEP, five indicators of socioeconomic status were divided into two categories: one of which was more affluent than the other. These were home owner , pays for prescriptions not free, other employment status than unemployed, permanently sick or disabled, not in the most deprived quintile of neighbourhoods and other household type rather than single parent. This formed a scale of affluent indicators. Clients' positions ranged between 0 and 5 indicators of affluence. Demographic measures included age quartiles , gender, ethnicity and location . Social support was measured by whether the smoker had anyone to support their quit attempt and the presence of other smokers in the household . Motivation was measured through determination to quit and addiction was measured through time to first cigarette on waking . Compliance was measured through attendance: number of contacts with services and number of weeks of pharmacotherapy , no evidence of compliance , short-term compliance and long-term compliance . Programme features included referral source and format . Many of the socio-economic status measures did not apply to older people and younger people may have a different relationship with some of the postulated mechanisms such as addiction and motivation due to not being established smokers. Thus clients under the age of 25 and 60 or over were excluded. Continuous abstinence rates were determined across all sites, English sites only , and Glasgow one-to-one pharmacy based and Glasgow group interventions separately. There were too few English clients who attended groups [n ¼ 47 ] to analyse these separately. Significance was determined, where sample size allowed, using chi-square tests of linear association. The difference in the chances of quitting between low and high SEP was assessed using logistic regression. Clients with 0 or 1 affluent indicators were compared with clients with all five affluent indicators. Demographic factors and smoking-related variables were entered into the model to see if the relationship remained. Originally it was intended to look for relationships with inequalities in quitting merging both data sets. Due to differences in quit rates the data sets were analysed individually. For the Glasgow one-to-one service analysis, not all variables could be entered in the same form because the lower quit rate increased multicollinearity. Ethnicity was excluded due to small numbers. Compliance with services and pharmacology were combined as service users tended to stop both simultaneously. Compliance was measured as attended all sessions or completed course of pharmacotherapy compared with completed neither. Addiction was measured as smokes cigarette within 1 hour of waking or longer. Categories of other variables had to be merged. SEP was grouped into 0 -1 affluent indicators, 2 -4 affluent indicators and all affluent indicators. Age was divided into tertiles rather than into quartiles. Where there was a significant relationship between SEP and quitting the extent to which demographic factors and smoking factors accounted for the relationship was assessed. Any change in the odds ratio of SEP was recorded when these factors were removed from a full model. Variables that reduced the odds ratio by 0.2 or more and changed both the confidence interval boundaries by 0.1 or more were deemed to have had an effect on the relationship between SEP and quitting. Finally, if variables were found to mask the relationship between SEP and quitting their relationship with SEP was explored. --- Results CO-validated quit rates at 1 year were higher among more affluent respondents for both English sites and the one to one but not the group intervention provided in Glasgow. However, during the study period relatively few smokers from disadvantaged backgrounds attended the group service. Continuous abstinence rates at 1 year were higher in England than Glasgow . In England those with 4 or 5 affluent indicators had rather higher quit rates than the other groups. In the Glasgow one-to-one service the quit rate was fairly stable except for the most affluent group whose quit rate was double that of the next highest category suggesting that the service was disproportionately benefitting the most affluent. Logistic regression on data from the two English sites suggested that in a bivariate model, the most affluent group were 2.5 times more likely to quit. This was little changed when demographic variables were added and 2.3 when smoking related variables were included. Thus, our explanatory variables were able to account for a part of the relationship between SEP and quitting. The one-to-one format service in Glasgow was more strongly patterned by SEP than the English data, with the most affluent being 9 times more likely to quit. As background, the variables which predicted quitting are presented . Quitters who participated in the English services were more likely to be affluent, male, black, extremely motivated, attend more sessions and take pharmacotherapy for more weeks or did not take it at all. Quitters from the Glasgow one-to-one service were more likely to be affluent, older, to complete the course either of pharmacotherapy or sessions and be referred by a professional rather than self-referred. To explore what was accounting for the relationship between SEP and quitting each variable was removed and replaced in turn and the effect on SEP was recorded . The relationship between SEP and quitting was influenced for the English sites, by whether clients complied with pharmacotherapy. For the Glasgow one-to-one service living without other smokers, not smoking within an hour of waking and professional rather than self-referral also explained why more affluent smokers were more likely to quit. Compliance with attendance increased the OR of SEP for the most disadvantaged smokers, because when compared with those attending for 0 -2 sessions, smokers were most likely to quit if they attended 4 -6 sessions [OR 5.2 ]. Attending further sessions appeared to be almost counterproductive [OR 1.8 ]. In summary, three smoking cessation services were studied: the English cessation service at two sites and in Glasgow a pharmacy based one-to-one service and a group service. SEP predicted quitting for the Glasgow one-to-one service and the English data. Disadvantaged clients were less likely to quit because they were not complying with treatment. In Glasgow SEP influenced quitting through age, social support , addiction and referral route. In England, for disadvantaged smokers there was a curvilinear relationship between attending sessions and quitting. --- Discussion --- Main findings of the study The results from this study suggest a complex relationship between SEP and quitting. The evidence from the one-to-one services in Glasgow and in England confirms that disadvantage is a barrier to quitting even after taking part in a smoking cessation programme. The gap between the most and least advantaged at the English sites did not appear to be strongly affected by traditional explanations of motivation, addiction or social support. Engagement in a smoking cessation programme --- Continued may have overcome these issues or these factors may not have provided an influential contribution to inequalities in quit rates. Adherence to treatment, in contrast, was an important determinant of quitting and inequalities in quitting. There was a tendency amongst disadvantaged smokers to attend fewer sessions and take medication for fewer weeks than more advantaged smokers. Both were associated with lower quit rates. An approach that encourages provider and patient to be treated as equals and allows for reasons for non-adherence to be seen as reasonable and rational could improve adherence. 22,23 It may be that services need to take a different approach with more disadvantaged groups to increase adherence. The life experiences of low-SES groups may differ significantly from those of health-care providers and that this may be one barrier to adherence. 22,23 Over recent years the stigma associated with smoking may have increased as smoking prevalence has fallen in countries such as the UK. Feelings of stigmatization have been implicated in non-adherence to treatment. Currently, however, it is unclear whether low-SEP or high-SEP groups feel more or less stigmatized by their smoking. 31,32 The impact of stigmatization on the relationship between adherence, quitting and SEP requires further investigation. Very few clients from the Glasgow one-to-one service delivered in a pharmacy setting had quit at 52 weeks. Those that did remain abstinent tended to be the most affluent. Affluent smokers' abstinence rates were enhanced by a smoke-free household in addition to two less studied mechanisms: long-term adherence to treatment, and referral source. It has been suggested that self-referral should increase quitting as an indicator of motivation, 33 but here professional referral was associated with quitting. Professional referral can in some cases be an indicator of smoking-induced poor health, which can also motivate quitting. 34 Previously it has been suggested that inequalities in quit rates between the most and least disadvantaged are a reflection of different levels of addiction. Addiction was not a major driver here, although Glasgow one-to-one clients were more likely to quit if they did not smoke within an hour of waking. More common measures of addiction could not be entered into the model due to multicollinearity, but in bivariate analysis they showed little relationship with quitting. This may be a consequence of the Social support for the quit attempt did not predict quitting or inequalities in quitting. The question on social support may have been too narrow a measure. In other studies, disadvantaged smokers have been found to have lower overall social integration 12,35 and in particular participation in formal and informal activities. 36 Motivation to quit predicted quitting in the English data set, but did not appear to be part of the pathway between SEP and quitting. Other studies have suggested an ambiguous relationship between SEP and quitting and motivation. 37 In this study, clients who used the Nottingham service and were identified as black or included black in their selfreporting of ethnicity were more likely to quit despite lower SEP. This is likely to be a small number anomaly. A similar pattern has nevertheless been found in the North East of England 38 but numbers were too small to assess significance. The relationship between SEP and quitting was not completely accounted for by the independent variables in this study, particularly for the English sites. Other potential explanations of poorer smoking cessation rates among disadvantaged smokers, which were not able to be explored in this data set, include poorer mental health, 39 the work environment such as higher levels of boredom and stress 40 and a more stressful living environment and stigma associated with smoking. 30,31 Disadvantaged smokers may be more likely to view smoking as a way of dealing with other pressures 12,41,42 and may have less understanding of or concern about the health risks of smoking. 12 It is also possible that elements of the intervention not examined in our studies could have influenced differences in quit rates. --- What is already known It is well established that disadvantaged smokers are less likely to stop smoking even when they access smoking cessation programmes. --- What this paper adds Our findings suggests that treatment compliance and in some circumstances, living with other smokers and self-referral are more responsible for lower quit rates among disadvantaged smokers than less motivation or less social support. In order to reduce inequalities, smoking cessation programmes need to try to address these issues to increase their success with disadvantaged groups. --- Limitations This study faced a number of limitations. About 3.5% of clients self-reported that they had quit but did not have their smoking status validated by a CO monitor. They were classified as not quit for the analysis in accordance with the Russell standard 30 but it is likely that some of these smokers had quit, so our cessation rates are likely to be an underestimate. Although the data come from three contrasting areas of the UK, these areas are not necessarily representative of the UK population and may have idiosyncratic features. There was also a time lag between data collection in England and Scotland that may have influenced our results, particularly as relevant policy changes took place between the two data collection periods. Although we found that Scottish group service clients with low SEP had a good quit rate, there were relatively few of them. In future we would like to explore further whether group programmes can overcome the barrier of low SES in a larger data set. It has been argued that the determinants of health and health behaviours are different from the determinants of health inequalities. 43 The same range of determinants was used for both in our study . However, as non-significant predictors of quitting were not excluded from the analysis of variables predicting inequalities, we allowed for the possibility that there may be different determinants of inequalities and we found this to be the case. The conclusions of our analyses are also limited due to the ambiguous direction of causation between compliance and quitting. Lack of compliance could have caused relapse or a relapse for other reasons could have prevented compliance. In future, perhaps qualitative, work this direction of causation needs to be teased out. As it stands our data suggests that encouraging disadvantaged smokers to comply with pharmacotherapy is central to equalizing their chances of quitting to other smokers. Future studies should be encouraged to collect data on compliance with pharmacotherapy in addition to whether or not pharmacotherapy was used in order to further explore the role of pharmacotherapy in attenuating the relationship between SEP and cessation. 6 Less than 10% of quit attempts in the UK involve the use of cessation services. 44 Thus, evidence in this paper only applies to a small proportion of smokers. Nevertheless, these services are one of the most cost-effective of all health-care interventions 45 and evidence of the kind outlined in this paper can contribute to expanding the reach and effectiveness of these programmes. In conclusion, our findings suggest that smoking cessation services face particular challenges in supporting more disadvantaged smokers to quit, particularly when support is delivered in a one-to-one format. In order to mitigate the effects of disadvantage, those planning and delivering services should take into account that these smokers may have other smokers in their home environment, pay particular attention to those who self-refer and support and encourage these clients to take pharmacotherapy correctly and attend sessions for long enough to improve their chances of successfully quitting. ---

Background Smokers from lower socio-economic groups are less likely to be successful in a quit attempt than more affluent smokers, even when they access smoking cessation services. Methods Data were collected from smoking cessation service users from three contrasting areas of Great Britain-Glasgow, North Cumbria and Nottingham. Routine monitoring data were supplemented with CO-validated smoking status at 52-week follow-up and survey data on socio-economic circumstances and smoking-related behaviour. Analysis was restricted to the 2397 clients aged between 25 and 59. Results At 52-week follow-up, 14.3% of the most affluent smokers remained quit compared with only 5.3% of the most disadvantaged. After adjustment for demographic factors, the most advantaged clients at the English sites and the Glasgow one-to-one programme were significantly more likely to have remained abstinent than those who were most disadvantaged [odds ratio: 2.5, confidence interval (CI): 1.4-4.7 and 7.5 CI: 1.4-40.3, respectively). Mechanisms producing the inequalities appeared to include treatment compliance, household smokers and referral source. Conclusions Rather than quitting smoking, disadvantaged smokers quit treatment. More should be done to encourage them to persevere through the first few weeks. Other causes of inequalities in quitting varied with the service provided.

Introduction Suicide is the second leading cause of death among ages 10 to 34 and a major crisis among adolescents and young adults . Division of Violence Prevention, 2015). Although the causes for suicide are multifactorial, most cases are linked to psychopathology , and particularly to depression. As depression also continues to rise among adolescents and young adults , it is important to develop an understanding of factors that may contribute to, or buffer against, depressive symptoms and/or suicide risk in order to prevent the continued acceleration of these interconnected threats. Social relationships with family and peers have been identified as particularly important categories of risk and protective factors , but most research has examined these factors as a few independent indicators of risk, rather than as a complex and interactive microsystem. This method limits both theoretical understanding and applicability of findings to improvements in identification and treatment of at-risk youth. Therefore, the current study seeks to explore unique and complex associations between family and peer factors with depressive symptoms and suicide risk in a high-risk residential sample. The microsystemic social environments of adolescents and young adults have a profound effect on psychological development . Ecological models of development and health illustrate the influence of context on individual health and psychosocial well-being. Such models encourage the examination of both proximal and distal factors surrounding a person to understand the interrelatedness of multiple embedded systems of influence . Extant research suggests that there are two critical microsystems that are especially important for understanding common but pervasive mental health symptoms in adolescents: the family and the peer group. The quality of relationships with family and peers are particularly potent factors contributing to risk for depression and suicide . Close and trusting relationships with family members and peers build support , facilitate coping , and promote a sense of belonging . The opposite is also true: when adolescents and young adults experience conflict with their families and isolation from peers, this contributes to stress and impacts psychosocial functioning . Indeed, family and peer factors have been associated not only with the development of clinically-relevant symptoms but also with treatment trajectories and outcomes . Family factor research has identified several specific and potentially important risk factors that may help prevent or contribute to the development of depressive symptoms and associated suicide risk in adolescents and young adults. First, parental criticism can be a potent risk factor; youth who perceive high levels of parental criticism are at increased risk for depression and suicidal thoughts and behaviors . Similarly, conflict in the home is robustly associated with depressive symptoms and suicide risk . Furthermore, a lack of perceived parental support is consistently associated with risk for developing depression as well as risk for suicide attempts . Finally, youth who perceive less parental monitoring may be at greater risk for depression . Importantly, longitudinal studies suggest that psychological symptoms often follow, not precede, these types of family factors . That is, family conflict and criticism may be risk factors for later development of psychological symptoms, and these associations are not merely reflecting deterioration in close family relationships following the onset of symptoms. Positive and negative experiences with peers can also influence psychological well-being, including risk for depressive symptoms and suicide. Positive experiences, such as friendships, have small, but consistent, negative associations with depressive symptoms . Longitudinal research suggests that high-quality friendships may protect against later depression symptoms , whereas lack of friendships and feelings of isolation may damage youth psychosocial health . Negative experiences, such as bullying are also associated with depressive symptoms and suicide risk over time . Notably, it is important to distinguish between different types of bullying, such as physical and cyberbullying, which may have different associations with depressive symptoms . However, these family and peer factors should not be understood as simply a collection of factors that may be added and subtracted to understand individual risk of depressive symptoms or suicide. First, much of this research has examined family and peer factors separately, without accounting for possible overlap . This makes it difficult to determine which factors may be the most important. Second, and even more crucially, more complex effects like interactions and non-linear associations have been underexplored. While many studies suggest direct, linear relationships between family and peer factors and youth mental health, others suggest that, in actuality, these mechanisms interact in complex ways . For example, one study found that supportive peer relationships were associated with lower depressive symptoms only under conditions of low family support. These supportive peer relationships were associated with an increase in depressive symptoms for adolescents with a high degree of family support . Interestingly, other studies have found the opposite: supportive peer relationships were only associated with lower depressive symptoms under conditions of low family conflict . Some studies also suggest that family factors may have curvilinear, rather than linear, associations with psychological outcomes. For example, poor family control may be a risk factor for poor adjustment, but higher levels of family control have diminishing returns . Therefore, examining factors in isolation and excluding the possibility of non-linear and interactive associations may lead to incorrect conclusions about the role of family and peer factors in depressive symptoms and suicide risk. There is a clear need for a detailed examination of potentially unique, non-linear, and interactive associations between family and peer factors with depressive symptoms and suicide risk. However, for this examination to be meaningful for research, theory, and practice, it is important to account for a few additional considerations. First, studies suggest the effects of family and peer factors on youth mental health may be moderated not only by other social relationship factors but also by demographic factors. Gender appears to be a particularly salient moderator in previous research ; depressive symptoms are more common among girls than boys, and differentiated social roles for boys and girls may result in family and peer factors affecting youth differently . Second, the majority of the research that examines combined and complex effects of family and peer factors has only considered depressive symptoms, not suicide risk . As these outcomes are often linked, it is critical to determine whether these family and peer factors are uniquely related to suicide or primarily through increases in depressive symptoms. Finally, these associations are particularly important to explore in higher-risk clinical populations, due both to the severity of risk and the potential for differences in how family and peer factors are associated with risk in clinical samples, compared to more general youth and young adult samples . --- Current Study Taken together, it is important to examine previously-identified family and peer factors , with the expectation that they will each be associated with depressive symptoms and/or suicide risk in adolescents and young adults. Furthermore, based on previous research and theoretical understanding, non-linear and interactive effects are anticipated between these factors, which must be understood to draw conclusions about the true effects of these family and peer factors. Based on previous research, interactions are also anticipated with demographic factors, which may shed light on which family and peer factors may be uniquely important for certain demographic groups. Finally, given the association between depressive symptoms and suicide risk, at least some associations between family and peer factors with suicide risk are expected to be mediated by depressive symptoms. --- Method --- --- Procedure The de-identified data used in this current study comes from a larger, quality improvement project at a privately-owned multisite psychiatric residential treatment center, which provides both outpatient and inpatient care to youth with different and co-occurring conditions . Data were collected from 2019 to 2020. Staff administered the assessment battery at the intake meeting using the electronic BH-Works platform . The assessment takes approximately 15 minutes, and scores are automatically computed and uploaded into patients' electronic medical record system. As part of their research agreement with Drexel University, Newport Institute provides Drexel University with de-identified data for analysis and publication; approval for use of this data for the current study was given by the treatment center, and the Drexel University IRB deemed that this was not research activity that needed IRB approval . --- Measures All variables were drawn from the Behavioral Health Screen , a tool developed by Diamond et al. to increase detection of behavioral health problems in medical settings. Questions were derived from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision criteria and other public domain psychosocial assessment tools. The BHS includes 13 modules assessing demographics, medical, school, family, safety, substance use, sexuality, depressive symptoms, anxiety, nutrition/eating, suicide, psychosis, and traumatic distress. There are 55 core questions with an additional 38 follow-up items The BHS is currently used in 40 medical sites and 500 schools across Pennsylvania and is being rolled out in four other states. Psychometric validation has supported the validity and reliability of the scales . --- Parental monitoring Participants self-reported how often their parents knew their location on a three-point Likert-type scale . --- Family conflict Participants self-reported frequency of arguing in the home on a three-point Likert-type scale . --- Family support Participants self-reported frequency of turning to parents or other adult family members for support on a three-point Likert-type scale . --- Parental criticism Participants self-reported perceived frequency of parental criticism on a five-point Likert-type scale ranging from 1 to 5 . --- Interactions with friends Participants self-reported frequency of interactions with friends on a three-point Likert-type scale . --- Verbal bullying Participants self-reported frequency of being victimized by verbal bullying on a three-point Likert-type scale . --- Physical bullying Participants self-reported frequency of being victimized by physical bullying on a three-point Likert-type scale . --- Cyberbullying Participants self-reported frequency of being victimized by cyberbullying on a three-point Likert-type scale . --- Depressive symptoms Depressive symptoms were assessed using the BHS depressive symptoms subscale. This measure has shown strong reliability, factor validity, and criterion validity in previous studies . Using a three-point Likert-type scale , patients rated how often the following five depressive symptoms occurred within the past 2 weeks: consistent feelings of being down, loss of interest in things previously enjoyed, unexplained irritability or anger, loneliness, and feelings of failure. Reliability was good in this study. Items were averaged to produce a single score for variable selection. In structural equation models, items were treated as indicators of a latent construct. --- Suicide risk Suicide risk was assessed using the BHS current suicide risk subscale. This measure has shown strong reliability, factor validity, and criterion validity in previous studies . Patients rated whether they experienced suicidal ideation, made plans to commit suicide, or attempted suicide over the past two weeks . Reliability was acceptable in this study. For variable selection, a single dichotomous score was created indicating the presence or absence of any suicidal indicators. In structural equation models, items were treated as indicators of a latent construct. --- Results --- Preliminary Analyses Mahalanobis Distance test detected and removed 13 multivariate outliers . Means, standard deviations, and intercorrelations are found in Table 1. Approximately 72.3% of the sample reported current suicide ideation, 47.3% suicide plans, and 42.7% suicide attempts. The average depressive symptom score of 2.14 was just below the previouslyidentified cutoff of 2.20 for "moderate" depressive symptoms ; approximately 52.4% of the sample was above this cutoff, and 30.8% of the sample was above the cutoff for "severe" depressive symptoms. Less than 1.3% of participants had missing data on any of the key variables; these participants were included in pairwise analyses wherever possible. Identifying Possible Main, Interactive, and Non-Linear Effects Sparse interaction models were estimated using hierarchical lasso in the R package hierNet . The package hierNet tests all possible two-way interactions and quadratic effects and allows for "weak" or "strong" hierarchy to ensure that only meaningful second-order terms are included ; in strong hierarchy, interaction terms are included in the lasso only if both constituent main effects are selected for the model, whereas in weak hierarchy, interaction terms are allowed if at least one of the main effects is selected. Weak hierarchy was specified, and 10-fold cross-validation was used to select the best value of λ using the "lambda.1se" criterion . A total of 132 possible terms were tested: 11 main effects, 110 twoway interactions, and 11 quadratic effects. Age was continuous. Gender and race were dichotomized, given the predominantly binary-gendered and white sample. Of the predictors, all except race, parental monitoring, family support, and physical bullying were selected as main effects by the lasso procedure for depressive symptoms. Four interaction terms were selected: Family Support x Gender, Cyberbullying x Gender, Interactions with Friends × Cyberbullying, and Interactions with Friends × Physical Bullying. There was also one quadratic effect, for cyberbullying; this was positive, suggesting that the impact of cyberbullying increased with frequency. As a follow-up analysis, a lasso was tested for current suicide risk; however, this only indicated gender. Therefore, nine main effects, one quadratic effect, and four interactions were included in all subsequent analyses. --- Interactions The two gender interactions are plotted in Fig. 1 using the R package "sjPlot" . The Family Support × Gender interaction suggests that, in conditions of low family support, female respondents reported more depressive symptoms than did male respondents. At moderate or high family support, there was no difference in depressive symptoms between male and female respondents. There is a similar finding for cyberbullying; among those never cyberbullied, female respondents have increased depressive symptoms, but there is no difference among those "sometimes" or "often" cyberbullied. The two interactions between bullying and friendship are plotted in Fig. 2. Both suggest that youth "often" spending time with friends are at lower risk for depressive symptoms only if they are never physically or cyberbullied. --- Associations with Latent Depressive Symptoms and Suicide Then, a structural equation model was tested in the R package lavaan using the diagonally weighted least squares estimator, wherein latent depressive symptoms were predicted by identified predictors, and latent suicide by the same pool plus depressive symptoms. Good fit was predetermined as CFI ≥ 0.95, SRMR ≤ 0.08, RMSEA ≤ 0.06 , and scale items were expected to have "good" loadings . Indirect effects on suicide through depressive symptoms were also tested; standard errors were computed using 5,000 bootstrap draws. All candidate variables selected were then entered into a single structural equation model, wherein all candidate predicted both depressive symptoms and suicide risk. Overall fit was good, χ 2 = 124.69, p = 0.072; CFI = 0.997, RMSEA = 0.015, SRMR = 0.058. All items had "good" loadings on their factors; the lowest loading was 0.67. The model explained 29% of the variance in depressive symptoms, and 50% of the variance in suicide. Standardized estimates are shown in Table 2. Nearly all included predictors were significant, except for cyberbullying and the Friendship × Cyberbullying interaction. Taken together, older age, female gender, family conflict, parental criticism, a lack of interactions with friends, and the experience of verbal bullying all explained unique variance in depressive symptoms. Moreover, as depicted in Figs. 1 and2, the relationship between depressive symptoms and gender was moderated by family support and cyberbullying, and the relationship between depressive symptoms and lack of friendship interactions by physical bullying. On the other hand, outside of the sizable association between depressive symptoms and current suicide risk, only age and family conflict shared unique associations with suicide risk. --- Mediation by Depressive Symptoms Indirect effects were also tested, as shown in Table 2, indicating whether associations of family and peer factors with suicide risk were mediated by depressive symptoms. Several variables had significant indirect effects on suicide through depressive symptoms, suggesting possible downstream associations. The final model, dropping nonsignificant paths, is illustrated in Fig. 3. This model also fit well, χ 2 = 123.59, p = 0.054; CFI = 0.996, RMSEA = 0.016, SRMR = 0.057. --- Alternate Model Analyses Additional analyses examined the lasso model for each suicide risk indicator separately , with and without the inclusion of depressive symptoms. This did not select additional variables not already included by the depressive symptoms lasso. --- Discussion Approaches for understanding and predicting risks for adolescent depressive symptoms and suicide are still evolving. The current study used a multidimensional approach by studying the interconnected nature of family and peer influences on individual health . Following variable selection, parental criticism, family conflict, verbal bullying, and interactions with friends, alongside demographic factors of gender and age, were all found to be uniquely associated with depressive symptoms. Gender and frequency of interactions with friends were significantly moderated by other family and peer factors . Although only family conflict and age directly predicted suicide risk above and beyond depressive symptoms, indirect associations through depressive symptoms were supported for other variables and should be explored further in longitudinal research. There are several strengths of the current study. First, the study examined a high-risk clinical sample of adolescents and young adults, many of whom reported severe depressive symptoms and suicide risk. Therefore, family and peer factors that emerged as particularly salient in this sample are likely to be relevant for identifying those adolescents and young adults at greatest risk for severe outcomes. Although this is a cross-sectional study, better understanding of these factors may lead to advances in prevention, intervention, and treatment. Particularly in the era of COVID-19, which has greatly disrupted interpersonal relationships , the robust association of interactions with friends with depressive symptoms suggests that methods for developing and maintaining these potentially protective relationships are crucial for the psychological health of adolescents and young adults. Finally, the methodology of the current study also follows recent recommendations involving the use of data-driven approaches to examine multiple variables and complex relationships . Given the difficulty in predicting suicide and other severe consequences of depressive symptoms, studies that examine multiple interactive risk factors are crucial for advancing understanding of how these relational processes may influence psychological well-being . However, several limitations of this study should also be noted. First, the sample was highly racially homogeneous. Although race was not selected by the lasso, this may be attributed to low power and the reduced sensitivity of this dichotomous variable. Second, only patient report with single items was used; multi-informant methods could also be used to gain a better understanding of relational processes beyond the patient's own report. Third, this study utilized a cross-sectional approach, and conclusions about directions of effects cannot be supported. Previous longitudinal research suggests that family and peer risk factors often predate mental health symptoms , but these associations are also likely to be bidirectional. Similarly, indirect effects suggested potential mediating pathways of family and peer factors on suicide risk through depressive symptoms, but these should not be interpreted causally. Finally, given the complex, multifactorial causes of suicide , it is crucial for future research examining more proximal family and peer factors to include other categories of risk factors, including genetic factors and family context , which may interact with the microsystemic social environment and depressive symptoms. The current findings have implications for understanding how family factors related to depressive symptoms in adolescence and young adulthood. First, negative family experiences, including parental criticism and family conflict, emerged as particularly relevant for depressive symptoms. This echoes previous research , but further suggests that these effects are unique; that is, independent of factors like family support, these two types of negative family experience appear to pose distinct risks. On the other hand, although the association between conflict and depressive symptoms was in the expected direction, family conflict appeared to share a negative association with suicide risk after accounting for depressive symptoms , suggesting more complex processes worthy of further investigation . Second, positive family factors were not robustly associated with depressive symptoms or suicide. This may be due to the clinical severity of the sample, the developmental stage, or the specific indicators. Other studies have found mixed results regarding parental monitoring , and it is possible that other assessments of parental involvement may be more appropriate for older adolescents or young adults. Family support was measured by inquiring about interactional frequency . While measures of interactional frequency might indicate support in normative samples, families of distressed youth may be more likely to fail to respond to support-seeking or to respond negatively . Therefore, it is important to examine multiple dimensions of family support and cohesion in order to understand how these function among at-risk youth. There are also important implications regarding how peer relationships are associated with depressive symptoms. In this study, interactions with friends and verbal bullying emerged as particularly salient processes for depressive symptoms. The role of peers becomes increasingly more important in adolescence and young adulthood , and feelings of acceptance or isolation from peers can be highly consequential for youth mental health. The moderation of interactions with friends by bullying suggests youth with both frequent interactions with friends, and the absence of bullying, are especially unlikely to endorse depressive symptoms. On the other hand, the benefits of friendships were not moderated by family factors, in contrast to previous research . However, these interactive effects have been less robust in more severe, clinical samples, perhaps due to the greater likelihood and severity of family dysfunction in these populations . In the presence of these dysfunctional families, peers may serve a particularly important role in providing support and stability to distressed youth. Finally, only verbal bullying was directly relevant for depressive symptoms; this is somewhat surprising given previous research suggesting that cyberbullying poses a particularly large risk for depression . --- Conclusion Family and peer factors are known to be associated with youth depressive symptoms and suicide risk, but most studies examine these factors in relative isolation and without accounting for their interdependence. Without acknowledging the context in which family and peer relationship factors emerge, it is difficult to estimate the unique contributions of factors like support and conflict, particularly when the effects are not linear or depend on the levels of another factor. The current study analyzed unique, interactive, and non-linear effects of several peer and family factors associated with depressive symptoms and suicide risk in a high-risk residential sample of adolescents and young adults. Building on previous research, the current results suggest that negative family processes and verbal bullying, are associated with more severe, and interactions with friends less severe, depressive symptoms. Moreover, gender differences were mediated by family support and cyberbullying, and interactions with friends by physical bullying, suggesting that examining individual peer and family factors in isolation may produce misleading results. Contrary to expectations, however, few factors were directly associated with suicide risk, but several shared possible indirect pathways through depressive symptoms. These results underscore the difficulty in identifying youth with suicide risk, but also provide directions for advances in identification, research, and treatment. For high-risk adolescents and young adults, negative aspects of the family environment may be likely to outweigh any positives as distressed youth may receive support primarily from their peers. However, the increased importance of peer relationships also has a dark side; youth with a history of peer victimization may be at high risk of depressive symptoms even when they have frequent interactions with their friends. In sum, relational factors with implications for depression and suicide do not occur in a vacuum, and it is important to understand this complex microsystem to estimate the true impact of these factors on the psychological well-being of adolescents and young adults. supervision and resources, and helped draft the manuscript. All authors read and approved the final manuscript. Funding Funding was provided by the Newport Institute, which has been using the Behavioral Health Screen to evaluate patient outcomes across its entire organization. Data Sharing and Declaration This manuscript's data will not be deposited. --- Compliance with Ethical Standards Conflict of Interest The Behavioral Health Screening tool was developed by GD and colleagues but is owned by Children's Hospital of Philadelphia. They license the tool to Medical Decision Logic, Inc., a health science informatics and computer science engineering company. GD may receive a small royalty payment for his part in developing the tool. ASR and the other coauthors do not report financial interests or potential conflicts of interest. Ethical Approval The Drexel University IRB deemed this research not requiring IRB approval . Informed Consent Patient consent for treatment and data collection was obtained by Newport Institute at admission. Publisher's note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. --- Authors' Contributions A.S.R. conceived of the study, performed the statistical analysis, and drafted the manuscript; J.R. helped conceive in the design and interpretation of the data; P.W. helped draft the manuscript; L.R. designed measurement and collected data and helped draft the manuscript; G.D. helped conceive in the design, provided Alannah Shelby Rivers is a post-doctoral researcher at the Center for Family Intervention Science, Drexel University. Her major research interests include the influence of close relationships on mental and physical health, and psychometrics. Jody Russon is an Assistant Professor of Human Development and Family Science at Virginia Polytechnic Institute and State University. Her major research interests focus on vulnerable youth, particularly LGBTQ + adolescents and young adults. Payne Winston-Lindeboom is a project coordinator at the Center for Family Intervention Science, Drexel University. Her major research interests are in the mental and behavioral health of adolescents and young adults, especially those who have dealt with family issues or trauma. Linda Ruan-Iu is a post-doctoral fellow at the Center for Family Intervention Science at Drexel University. Her major research interests focus on cross-cultural assessment, psychiatric diagnosis and assessment, and suicidal behavior among youth. --- Guy

Close relationships are consequential for youth depressive symptoms and suicide risk, but nuanced research examining intersecting factors is needed to improve identification and intervention. This study examines a clinical, residential sample of 939 adolescents and young adults ages 10 to 23 years old (M = 15.84, SD = 1.53; 97.7% white, 99.5% non-Hispanic, 55% female). The final model found that family conflict, parental criticism, verbal bullying, and interactions with friends were associated with depressive symptoms in the expected directions, and there were significant interactions with family, peer, and demographic variables. However, most associations with suicide risk were indirect. Associations involving family factors, peer factors, depressive symptoms, and suicide are not always straightforward, and should be understood within a microsystemic context.

Participatory action research acts within a specific context and focuses on social action and change [3]. Scientists and stakeholders work together to examine problems and generate context-specific solutions, even when stakeholders lack experience in research or organizatitional development [4]. This collaborative generation of knowledge is often called 'co-creation' [5]. Central to cocreative and participatory processes are fostering mutual respect, capacity-building and empowerment [4], and uncovering tacit knowledge and competencies. Various creative methods such as role playing, storyboarding, and futures workshops are often utilized [3,6]. To address a know-do gap in a complex context with workers with vast practical knowledge but low formal education, we carried out a PAR process striving to improve structures for identifying and alleviating loneliness. This article aims to explore the co-creative process of designing a work model that guides home care workers in supporting social participation among older care recipients. Loneliness and social isolation are increasingly acknowledged for causing ill health [7,8,9,10,11]. Older adults are more likely to face reduced leisure activities [12] and social networks, and, consequently, to experience loneliness [13]. The opportunity to participate in society and to maintain individually-relevant relationships; i.e. 'social participation' , is a key component in better health and wellbeing [14,15,16]. However, loneliness and social participation are complex experiences and situated in day-to-day life, and with assistance in daily activities the situation becomes even more multifaceted. In Sweden today, like in many other countries, home care is the most common form of elderly care [17]. More than half of Swedish home care recipients report feeling lonely 'sometimes' or 'often' , [18] which has remained fairly constant over recent years. Research has shown that older home care recipients perceives agency in managing interests and relationships as important for satisfactory social participation [19], and yet other research has indicated that home care workers can both facilitate and hinder care recipients' own decicions [20]. The Social Services Act [21] regulates home care, and although it stipulates that older adults have a right to assistance in engaging in a meaningful life with others, systematic approaches for assessing and adressing social needs are lacking [22]. Evidently, there seems to be a gap between what is known about the benefits of social participation and home care's responsibility to provide conditions amenable for recipients to engage in a meaningful life with others, and what is accomplished in practice: a socalled "know-do gap" [1]. Swedish home care services encompass at-home support for community dwelling persons, regarding for example household tasks, personal care, medical care and emotional/social support [23], by assistant nurses. All Swedish home care services are financed with public funding, and provided by either municipal or private organizations [23]. The applicant's care needs are assessed and potentially granted by municipal home care assessors, and if the municipality also has private options available, the care recipient may choose their provider. This system aims to increase older adults opportunities to excert choice and control, but research have shown it in some cases can be counter productive and increase dependency and experiences of lack of control in daily living [24]. While the time slot and formal content is strictly delineated in service grants, the individual care worker is rather alone in deciding how to carry out the service. Delivering home care support is complex [25], marked by restraints on time, working alone, and balancing conflicting values [26,27]. This demanding work situation has been described as one of low control, affecting care workers' health, quality of work life, and their output quality of care [28]. But while stress of conscience and exhaustion are common, home care workers often describe their jobs as meaningful and morally fulfilling [29]. And while the profession is known for its complexity, home care workers have low levels of formal education; usually assistant nurse training , but a lack of formal care training is also common. This contributes to the profession's low status, low salary levels and low power. Employment in the elderly care sector comprises the largest employment sector in Sweden, where 90% of care workers are women [30] and 25% of employees in the care and service sector were born in another country. Research examining Swedish home care workers' perspectives on supporting social needs is sparse. A discourse analysis showed that home care workers value social support for care recipients and that their obligations and opportunities could involve both strengthening their current procedures or developing structures to better fit the social needs of older home care recipients [31]. Research from other countries shows that care workers can have a positive attitude towards supporting meaningful and social activities [32], but that physical care is often seen as home care's main concern and the lack of time, knowledge and awareness of such issues remain barriers [33]. Therefore, it has been argued that addressing organizational factors might be crucial in shaping conditions to enhance a socially-oriented and person-centered approach to elderly care [26]. --- Methods --- Study design This project had a PAR approach [3], focusing on cocreating knowledge with home care organizations in an attempt to improve support for social participation among home care recipients. PAR [3] was chosen for its recursive orientation towards action and change in practice. Furthermore, the study was inspired by 'participatory design' [6] and 'futures methodology' [34,35] for their respective focuses on designing prototypes and providing a concrete structure for people without design experience to examine problems and constructing a model for change. --- Roles in the collaborative PAR-process Concurrent with a participatory ontology [36], participants were viewed as situational experts on home care and on work model content. The researchers' role included creating space, breaking down the end goal into manageable steps, providing evidence-based knowledge on loneliness and social participation, and supporting operationalization of home care workers' competencies. --- Reflexivity and researcher-as-instrument The collaborative relationships in PAR requires an active and reflexive researcher; the researcher-as-instrument [37]. We attempted to consciously use ourselves [38] to balance power and facilitate a collaborative space; for example through purposive adaptability in verbal, emotive, written, spatial and material communication. This requires awareness of, for example, our backgrounds and preconceptions and transparency in the report [37]. The first and last authors, who led the workshops, have a background in occupational therapy, and the second author, who functioned as PAR methodology expert, is a sociologist. Whereas second and third authors are experienced researchers with PhD degrees, first author was a doctoral student. Occupational therapy includes philosophical assumptions [39], for example, viewing people as autonomous and with the potential for participation and as the driving force of their own change, which guided our facilitation of the PAR process. Additionally, all authors has previous work experience in elderly care and rehabilitation. --- Context This project, "Stay In Touch", is part of a multi-disciplinary research program, "Future Care" [40], where three universities, in multiple projects, collaborate with healthcare to increase social participation among elder care recipients. The Stay In Touch project is generating knowledge about loneliness among older adults in a home care context in several studies [19,31]. Umea University is a comprehensive university in northern Sweden, located in proximity to the participating home care organizations. The municipalities were relatively small and semi-rural, and did not have private home care options. --- Recruitment and participants As a PAR process requires a prolonged committment, we aimed to recruit organisations and participants with a strong interest in the challenge of loneliness. After a public presentation by IN in a local newspaper, two home care managers made contact and volunteered to participate. In turn, IN and TN gave another presentation at each of the care organizations' regular staff meetings where all employees are required to attend, informing care workers of the project and inviting them to participate. We emphasized seeking all ages, genders, and levels of experience, thereby striving for varied groups. All who volunteered were included in the study and provided informed consent. We first recruited participants for four workshops in each organization, and 11 home care workers chose to participate. Those participants were later invited to a second round of four workshops, in which seven participants decided to extend their participation, and three new participants joined the project. In total, 14 home care workers participated in the study . The two groups covered a wide range of ages and years of experience in home care . Most participants were women, and most had a high school education, with additional courses at high school or college level. One participant was racialized. Three participants decided to adjourn their participation before the end of a round, and expressed a heavy workload, not interested in the development process, or gave no explanation as to their withdrawal. --- Data generation and analysis After establishing collaboration with the care managers, IN and TN accompanied a care worker in their daily work for 2 days each, to gain an understanding of their work situation. The co-creation process consisted of a total of 16 workshops: three sub-cycles which together amounted to one over-arching PAR cycle . Each workshop took place about once per month, for 2.5 hours, at the home care organizations' respective office buildings. Initially, eight workshops were planned , and the latter eight workshops were added upon need. The PAR process generated a vast amount of data, including summaries, field notes, mind maps, textual and graphical drafts, audio recordings and videos, and a list of data, workshop topics, action-oriented research questions is provided in Additional file 1: Appendix 1. The final Stay In Touch model included a five-step figure and chart . After the workshops ended, researchers prepared material for pilot testing which was reviewed and verified by two volunteering participants. The data analysis proceeded in two phases. The first phase was a hands-on process that proceeded continuously with data generation, through reflecting upon data to direct the next action. In practice, researchers discussed and summarized data, which the participants then departed from when developing the work model further. This process generated questions; for example "what can social activities encompass?", which in turn raised new questions, as they were examined through action-oriented modalities. In the beginning, these questions were primarily introduced by researchers, and as the process matured, they became more participant-driven. The analytical process also encompassed monitoring and facilitating a fruitful group climate. The second phase of analysis consisted of scrutinizing data to explore the co-creative process. First, all data were reviewed and sorted in chronological order. Through iterative examination of the data , objectives and activities of each workshop were extracted and descriptive text for each sub-cycle was formulated. These descriptions were then related to McIntyres "recursive process of PAR" [3] and Rensburgs "framework for occupational enablement" [41], for the purpose of highlighting and interpreting the group process, researchers' enabling strategies, and obstacles and opportunities. This analysis was mainly performed by TN, and intersperesed with extensive reflection among all authors throughout the analysis process. --- Results In line with PAR, the process is a part of the result and thus described in this section. The three PAR sub-cycles that together made up one over-arching PAR cycle is addressed in chronological order, and lastly the created work model is presented. All of the enablement foundations and facilitators of enablement described by Rensburg [41] were utilized in the overarching PAR cycle, but they varied in pertinence over the course of the PAR process. At the beginning of each sub-cycle, all participants were provided a folder with information and writing material, to use as they liked. All workshops were structured with a warm-up phase, a working phase, and an ending phase. Ongoing engagement was also expected between workshops, such as reflecting on a specific part of the model in their daily work. --- Questioning the present and envisioning an alternative future: first round of workshops This round consisted of two sequential sub-cycles of workshops with similar layouts. Both sub-cycles included reflecting upon loneliness among care recipients, envisioning a "social future" for older care recipients and then modeling a concrete plan for change . The creative assignments used to explore topics and questions were inspired by creative group work and process mapping [42], to stimulate reflection and operationalization. Since the project and relationships was in its initial stages, two of the "enablement foundations" [41] were particularly relevant: creating a 'shared vision of possibilities' and exploring how 'change, transformation, liberation, and actualization' could come about. In addition, two "facilitators of enablement" [41] were often utilized in the first round: using intentional 'communication' and 'fostering relationships' . In the interdependent relationship between researchers and participants, researchers took on a relatively active role in introducing objectives and activities. --- Generating an initial model of change with group A This sub-cycle corresponded to the first phase of the overarching PAR cycle: reflecting upon loneliness among care recipients and investigating how social participation could be supported within the existing organization of home care services. The sub-cycle also included the initial steps of development of an action plan and the "implementation" of this plan into a first model draft. --- Objectives and activities The objective of group A's four workshops was to generate an initial work model. Firstly, the participants reflected on their own social lives through mind-mapping. After a short lecture about research on older adult loneliness, participants explored their perceptions of older care recipients' loneliness and social needs . Family, friends, home care workers and people of the same age were described as important for providing support to older care recipients to do social activities. Hinders included lack of strength, feeling nervous or being uninformed about local events. They summarized their discussion as follows: "Maybe it isn't so important what you do, but that you get to go outside your home, see something else, meet people. They are missing someone to encourage them and come along, maybe the first time. Tell them about upcoming activities for older people" The group then created a fictive care recipient for whom they envisioned a rich social life through drawing, discussing and writing. The participants mapped current work procedures and examined how those could be enhanced to identify, address, and evaluate social needs. They sketched a five-phase pie-chart structure to depict their enhanced work process. They also wrote a short description and fictive case example for each phase. Finally, the participants made a video presenting their draft and formulated suggestions for further development for the next group. --- Facilitators of enablement and group climate The assignments were intentionally concrete to make the process manageable, and encouraging communication were carefully exercised to foster positive relationships. The participants seemed enthusiastic toward the matters at hand, and worked relatively independently and goal-oriented during the work-phases. The suggested questions and assignments seemed to fit the participants' competencies and successfully contribute to the positive and creative climate. Reflecting on own social preferences produced subsequent discussions on care recipients' variations in social needs. Creating a fictive care recipient concretized the visionary discussion, which has been previously described as well [43]. Participants showed confidence and competence in discussing the concrete details of supporting social participation, whereas mapping and abstracting these competences proved more challenging, which was reflected when discussions became tangential and their progress slowed down. --- Further developing the initial model of change with group B This round corresponded with the middle phases of the overarching PAR cycle: continuing with developing the plan and initializing implementation and refinement. --- Objectives and activities The objective of group B's four workshops was to refine and informally test group A's initial model. This group began with examining their perceptions of older care recipients' social situation and envisioning a positive future through brainstorming and collaging. They reviewed group A's problem and vision formulations, model draft and video, and discussed how well this fit their own perceptions of the problem and visions. They then reflected on facilitators and hinders of each phase, the model's overall feasibility. For example, a challenge that was discussed was care recipients' lack of knowledge about their rights regarding services that home can provide, and they emphasized the value of information. One participant explained an example of lack of information like this: --- "they don't know that they can request … what's it called … well a staff member comes along to the city for a day, to go shopping with them. Many don't know that" The group also developed changes and additions. The model's descriptive text was elaborated, a symbolic color scheme and a symbol for person-centeredness was added, and pie-chart design was changed into a circle of action points with an additional inner circle depicting a smaller process. The participants also attempted to plan informal testing between the third and fourth workshop. Last, the group identified conditions important for further testing , and prepared a video presenting their refined model. --- Facilitators of enablement and group climate It quickly became clear that the sequential setup of this round gave group B a more challenging start. Also, two out of the five participants were not able to attend the first workshop, Table 1 Important conditions when testing the model in a larger scale, as identified by participants Conditions identified by the participants as important to consider when testing the model in a larger scale. Hyphens [x] represents original wording in Swedish. The translation to English was done for this article with the support of a professional language editor Important for future testing ➢Managers' involvement in the decision to implement is crucial ➢Some extra time is needed in the beginning, to develop the frame of mind [få in tänket] ➢Try to integrate the work with existing structures and tools, such as recurrent quality of care-meetings ➢Potentially using the work phone to increase the model's accessibility in daily work ➢Collegial discussions in small groups, about how to do it in practice, and preferably using case examples that sparks imagination and comprehension ➢Documentation of actions done in the Stay In Touch process are crucial ➢Language matters; wordings in the model, in home care assessor grants [biståndsbeslut] and in direct communication with care recipients. Loneliness can be a sensitive issue that requires a delicate approach, and the standardised wording of case manager grants can be difficult to understand for care recipients. which prolonged the group's formation process. Participants showed engagement and competence, but independent work proved more challenging in this sub-cycle, especially regarding abstraction of their practice-based knowledge. Therefore, the researchers changed approach and participated more actively: interdependence and collaborative planning and doing became the prominent strategies. A successful approach became the preparation Fig. 3 Stay In Touch Circle and Chart. This chart is a detailed description of the content of each phase in the Stay In Touch Process, formulated by the participants. The original chart was done in Swedish and translation to English was done for this article with the support of a professional language editor of visual concretizations; i.e. making several design examples that captured the participants' previous discussions. This strategy supported critical reflection and sparked creative thinking. Initially, sub-cycle 2 was intended to encompass informal testing of the model, but the participants needed all four workshops to reach a model they were comfortable with. The suggestion to prepare small scale testing between third and fourth workshop was received with caution, and ultimately, little testing was carried out. Researchers concluded that testing would require additional preparation, and therefore, both groups were invited to another round of workshops. --- Testing and refining the model: second round of workshops This round consisted of two parallel sub-cycles of workshops. In the over-arching PAR cycle, this round corresponded with the last phase: implementing and refining the plan. Although 'communication' and 'fostering relationships' remained important, the relationships between researchers and participants felt relatively established, and 'collaborative planning' and 'monitoring the process' became more pertinent facilitators of enablement. The researchers increased encouragement for participants to take on a more active role in the interdependent relationship. Towards the end of the round we also developed 'strategies for sustainability and handover' . --- Testing and refining the model with groups A and B simultaneously In this cycle, the two groups worked simultaneously and transferred suggestions, questions, and changes through the researchers. This aimed to align the groups' preconditions and enable a sense of community. The participants tested the work model in everyday home care work between workshops, and a typical workshop began with a participant-moderated reporting session , followed by refining details in the work model according to needs discovered during testing. --- Objectives and activities The objective of this round was to test and refine the model and produce case examples. Both groups' initial tasks encompassed making a plan for the workshops and for testing the model in practice. Group A decided to focus on the small-scale process , due to their restrained work situation, and group B decided to strive for three full-scale examples and one small-scale example. Both groups wished to receive reminding weekly text-messages. Transfers between groups concerned problematic areas and/or suggestions for changes to text and graphics. They discussed, for example, how to enable planned activities in practice, through verbal and non-verbal communication: Group A: "you have to show engagement in the activity, that's what's needed" Group B: "you need to act inviting in some way" Communication with other professionals, such as home care assessors was also identified as a potential threshold, and was thus emphasized more strongly in the model. One participant described how power differences can affect care recipients' expression of needs to different professions: --- "it can become another type of conversation between the care assessor and the care recipient. [---] often, I talk a little differently to the care recipient, we get sort of a closer relationship, but when the care assessor comes, it's almost like with the nurse: 'no no everything is just fine'" The testing process resulted in 24 case examples of varied completeness, and the work model was elaborated with more explicit delineations of person-centeredness and care recipient agency, and was more strongly tied to existing structures like care meetings and the contact care worker's responsibilities. They also formulated questions for identifying loneliness and wishes for specific support, need for documentation, and discussed and determined a Swedish name for the work model: "Håll kontakten". --- Facilitators of enablement and group climate In this round, one of the groups had a new manager, which seemed to alter the groups' mood: participants appeared down-hearted, but were nonetheless engaged in the process. In both groups, testing still seemed somewhat difficult to grasp, why researchers prepared notetaking booklets, containing spaces for noting phases of concern, description of actions, and experienced challenges and opportunities. The researchers' attempts to encourage participant leadership sometimes generated insecurities rather than empowerment. The participant moderation of test reports worked unevenly: while some adopted the task with confidence, others seemed insecure. To meet these insecurities, researchers strived to convey availability and support without taking over. The preparation of concrete summaries and design alternatives continued to be successful strategies for enabling creative and critical thinking. Weekly text messages were described as helpful for remembering and prioritizing testing among their regular work tasks. --- The stay in touch work model The over-arching PAR cycle, consisting of three subcycles, resulted in a work model called 'Stay In Touch' ['Håll kontakten']. It describes how home care workers can, within the boundaries of their role, act as discoverers of unmet social needs, employ intentional communication, and link to other professions in order to facilitate more person-centered support for social participation among older care recipients. The model can, in a way, be seen as a frame of mind, which illuminates loneliness and social support within in the regular organization of home care and provides guidance in day-to-day contact with care recipients. The Stay In Touch model consists of a process of five phases, depicted as a large circle with an additional inner circle and a chart describing each phase . Symbols were carefully chosen by participants to convey, for example, iteration, early withdrawal and person-centeredness, and the traffic-light color scheme symbolizes the process moving from a bad to a good situation. Being attentive, responsive, encouraging, adaptive, and exercising professional judgement are strategies emphasized in the participants' description of how to employ the Stay In Touch process. The model describes actions from the care worker's position, but participants were adamant about the care recipient's agency, which is mirrored in their formulations in the chart. The model begins with phase Present situation, and conveys importance of being attentive to signs of loneliness and using ordinary small talk to learn if the person experiences problems with loneliness . If the person confirms loneliness, phase Analyze follows. The inquiry continues by asking what the care recipient enjoys doing, which relationships they value, and if they think home care could provide support. The care worker can also, with the care recipient's approval, discuss potential support with colleagues or the person's next of kin. One care worker will be assigned to monitor the process, preferably the 'contact care worker' . Phase Plan includes examining potential support to suggest to the care recipient. In this phase, colleagues or other relevant professions can be involved with the care recipient's approval. The phase might require application for additional service grants, in which case, a home care assessor will perform planning. However, it is also possible that the care recipient's aspirations fit within existing grants , and planning can be done informally or via structures for individual care planning. Clear communication between different professions is emphasized. In phase Implement, the care worker's role depends largely on the result of previous phase, but emphasizes using judgement and showing that the person's chosen activities are valued and prioritized. The last phase, Evaluate, encompasses dialogue with the care recipient and home care colleagues, and distinguishes four aspects of evaluation. Depending on the outcome, the process can be closed or start over at a suitable phase. The model also contains an inner circle, Here & Now, which represents a shorter series of actions that reflects a small-scale Stay In Touch process that can be done immediately. For example: a person expresses feeling lonely and longing for a relative , the home care worker asks/suggests a telephone call and help finding and dialing the number and the person seems satisfied for the moment . --- Discussion The activities in this process led to achieving it's goal of generating an improved structure for identifying and alleviating loneliness among home care recipients, and this paper explores this co-creative process. However, the journey was not without its challenges. PAR is well known for being an unpredictable and time-consuming research style [3], and reaching a tested and refined final version that participants were satisfied with, required an additional round of eight workshops. Participants struggled with both abstracting their knowledge, and putting their abstraction back into practice. The researchers' strategies to meet these struggles and facilitate an affirmative and progressive group climate were illuminated through the 'enablement foundations' and 'facilitators of enablement [41]; in the secondary data analysis of this article. This framework has, to our knowledge, never been used to guide or analyze a PAR process before, and proved useful in supporting understanding of our enabling process. The testing phase required extensive reminding and encouraging participants to keep the project in mind between workshops and to prioritize their planned testing, and the researchers had initially aspired for a more exhausted testing. Similar experiences have been described in other PAR processes [3]. A possible explanation for this engagement-drop might be the well-known precursors in home care contexts: stress [26,27] and low focus on social issues [22,33]. Such preconditions will likely hamper engagement in adding social tasks when they are competing with more strongly incited tasks and values. Therefore, creating preconditions where care recipients' social well-being is formally acknowledged as a home care concern, is likely an important aspect of successful implementation of the Stay In Touch model. Power dynamics within the project could also have affected the participants' engagement. It is well known that PAR processes are susceptible to power imbalances [3], and that this can decrease feelings of meaningfulness and active participation [41]. 'Power sharing' is one of the central foundations in the enablement model [41], and throughout the process, we strived to flatten power and empower participants to feel ownership. This was, however, rather challenging: when the researchers attempted to move to the background, participants often expressed unease. Similar dilemmas have been previously described [3,44], along with the need for a fluid shift between participants' and researchers' 'expert' perspectives. McIntyre [3] describes how expectance to reflect and take responsibility often generates anxiety, and that joint responsibility can require extended support and time. Rensburg [41] delineates importance of participants' opportunities to define objectives, plan activities and evaluate their engagement. We strived to utilize these values within the inevitable project boundaries and our suggested activities and objectives aimed to crystallize the participants' views within this frame. This orchestration contributed to the model progress, but might also have hampered feelings of ownership. It is possible that even more time together could have enabled naturally occurring doldrums to proceed and eventually resolve into consensus and empowerment. It was, however, not possible to extend the time frame beyond what we already had done, but the importance of a large and flexible time frame should be considered for future research. Manager involvement is another aspect that might have impacted participant engagement. One of the groups had different managers in first and second round, which gave us an opportunity to meet the same participants under two leaderships. The former manager had initiated participation in the project, whereas the latter expressed lower priority of the same. In this shift, the group's atmosphere changed visibly from strongly enthusiastic to more muted engagement, and two participants in this group also decided to end their participation before the end of the round. Leadership involvement and support have been identified as crucial for engagement and change when care workers participate in research, both by current participants and in other research [45]. The possibility of increasing manager involvement was repeatedly discussed among researchers during the cocreation process, and we held verification meetings with the managers before and after each round. But in retrospect, it might have been beneficial if managers had also been involved during workshops in some way, in order to support empowerment within the power dynamics of the organization. Rensburg [41] describes the importance of involving all relevant stakeholders, which became clear in the current project, but it is also evident that effectively applying this in practice is a challenge. One way to support identification of stakeholders, power structures, and change-relevant positioning, might be to perform a power analysis of the organization [46,47] prior to the project or in collaboration with participants. Despite struggles, participants identified a way to support social participation through existing structures of home care. Their produced model corresponds well with Swedish social services' foundational values for elderly care; for example, emphasizing care recipients' rights to a meaningful existence with others, respect for care recipient's autonomy, and capitalizing on the care recipient's own social resources [21]. It also fits well with the required competencies for staff in elderly care [48], which emphasizes supporting social participation, adaptive communication with care recipients, their relatives, and relevant professions, and documentation in the patient journal. Interestingly, participants identified communication with other professions as a potential barrier, particularly that a difference between the lay-language used when talking about a care recipient's needs and the formal wording of written home care grants sometimes caused care recipients to decline granted support. Participants also identified care recipients' insecurities as possible hindrances during the implementation phase, and they accentuated the importance of care workers conveying that they value and prioritize the care recipients' chosen activities. Another interesting trait of the participants' model is their explication of tacit knowledge in general and the small-scale process Here and Now which positions the smaller, "extra" tasks, done while doing other tasks, as an important part of meeting social needs. To our knowledge, this is the first co-created work model for supporting social participation in a home care context. It must, of course, be tested and validated on a larger scale, but it offers a first step toward increasing systematic approaches in assessing loneliness and addressing social needs within the vast and complex context of home care. Likely, such testing would identify opportunities for further refinement, which is an expected and positive continuation of participatory action research. --- Methodological discussion This paper attempted to provide vivid descriptions of the PAR process, our facilitative approaches, and the opportunities and challenges met during the journey. Home care workers match the type of vulnerable and low-power populations that PAR was developed to reach, but paradoxically, low power also brings challenges in the research process and might limit the potential for change [3]. Throughout the collaboration, the researchers strived to learn about the context, through for example auscultations and engaging in casual conversation during snack breaks. The researchers' summaries and examples nourished critical reflection among participants and sparked both rejection and elaboration of elements in the work model, as did the testing in practice. Reflexivity between the researchers was cultivated through de-briefing sessions where facilitating approaches were scrutinized . These discussions were immensely valuable, and in hindsight, they could have been audio-recorded to provide further insights for secondary analysis. There were relatively few drop outs, but three participants left the collaboration before the end of a round, which could be considered a limitation. The researchers' impression was, however, that their adjournment did not cause friction in the groups. The slight change in the groups' constellations between first and second rounds could be viewed both as a limitation and a strength. The majority remained, which allowed a continuation in group development, while the few newcomers provided appreciated perspectives. All participants and home care managers who initiated collaboration expressed interest in improving social support for care recipients, which is crucial for successful PAR research and was a strength in the PAR process. --- Conclusions This paper describes and analyzes a participatory action research process, where home care workers and researchers collaboratively created a work model that aims to guide home care workers in supporting social participation among older care recipients. This paper explores the research process's intrinsic objectives, activities, and facilitators of enablement, and discusses opportunities and challenges. We met challenges including maintaining active participation between workshops and participants struggling with moving between theory and practice, and empowerment where participants felt ownership of the process and the model seemed unfulfilled. Nonetheless, the project also contained opportunities for engaging home care workers who demonstrated competence in their field and provided opportunities to highlight their tacit knowledge, describe ways to traverse care recipients' loneliness and support social participation within the boundaries of the home care worker's roles. The participants identified potential barriers for example regarding communication between professions and addressed it in their work model. The produced work model resonates well with the foundational values and skills required in elderly care, and voices that tacit knowledge of experienced home care workers. The model is unique in its kind, and could comprise a first step toward a more systematic approach to assessing and addressing loneliness in the home care context. The vivid delineation of the PAR process as well as its challenges and opportunities that is provided in this paper, can aid other researchers in navigating participatory research in home care contexts. --- --- Additional file 1: Appendix 1. Authors' contributions I.N. and T.N. planned and designed the study and A-B.C. functioned as method expert. I.N. and T.N. participated in the workshops and the primary actionoriented analysis. All authors contributed to the secondary analysis for this article, while T.N. wrote the manuscript draft and prepared figures and tables. All authors provided critical revision of the manuscript, all additional material and read and approved the final manuscript. --- Funding Open access funding provided by Umea University. This study was funded by grants from the Swedish Research Council for Health, Working Life and Welfare , Ref. no.: 2016-07089, and, furthermore Strategic Research Area Health Care Science . --- --- --- --- Competing interests The authors declare that they have no competing interests • fast, convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year --- • 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: ---

Background: Participatory research is particularly suitable in adressing know-do gaps in health systems. There is a disparity between what is known about the benefits of social participation and home care's responsibility to provide conditions amenable to older adults' social participation, and what is accomplished in home care practice. Home care workers are a large, low-power group, whose competences should be better harnessed. We carried out a participatory action research (PAR) project with the goal of generating an improved structure for identifying and alleviating loneliness. This article aims to explore the co-creative process of designing a work model that guides home care workers in supporting social participation among older care recipients. Methods: Multimodal data from 16 PAR workshops with 14 home care workers were described and explored through the 'recursive PAR process' and the 'framework for occupational enablement for change in community practice".The PAR process is outlined through the objectives, activities, and work model, as well as enablement strategies employed throughout the PAR process; as are its opportunities, challenges and implications. The work model describes how care workers can act as discoverers of care recipients' unmet social needs, employ intentional communication, and link to relevant professions or community services to alleviate loneliness among older home care recipients. Conclusions: This research process included opportunities of collaborating with enthusiastic and competent home care workers, but also challenges of moving between theory and practice and maintaining active participation between workshops. The resulting work model is in step with the requirements of elderly care, is unique in its field and could comprise a first step toward a more systematic approach of assessing and addressing loneliness. The vivid delineation of the PAR process provided in this paper can aid other researchers in navigating participatory research in home care contexts.

INTRODUCTION Despite the most current estimate of 190 maternal fatalities per 100,000 live births, Indonesia's MMR continues to be among the highest in Southeast Asia. Safe delivery ensures that all birth attendants have the knowledge, skills and tools to provide assistance which is safe and clean, and provides postpartum services to mothers and babies . Personnel who can provide birth assistance can be divided into professional staff and traditional birth attendants. The target coverage for delivery assistance by health workers in order to achieve Healthy Indonesia 2010 is 90% . However, data from Basic Health Research in 2010 recorded that delivery coverage by trained health personnel only reached 82.3% . From the Riskesdas data, 43.2% of pregnant women gave birth in their own homes, of which only 2.1% received help from doctors, 5.9% from midwives and 1.4% from other medical personnel, the remaining 4% received help from family and at most 40.2% were helped by traditional birth attendants . According to health status data in Indonesia, the MMR in 2010 was 228/100,000 live births, with the National target being 118/100,000 per live birth in 2014 while the MDGs target was 102/100,000 live births. The infant mortality rate is 34/1000 live births, with the MDGs target in 2015 being 32/1000 live births. Maternal mortality is closely related to birth attendants and delivery places/facilities. Childbirth assisted by health workers has been proven to contribute to reducing the risk of maternal death. Likewise with the place/facilities, if delivery is carried out in a health facility, it will also further reduce the risk of maternal death. Therefore, the Ministry of Health's policy is that all births must be assisted by health workers and strive to be carried out in health facilities. In some areas in Indonesia, the coverage of births assisted by health workers is still low because the public still believes in giving birth assisted by a traditional birth attendant. In an effort to improve midwifery services and child health, health workers such as midwives invite traditional birth attendants to undertake training in the hope of improving their ability to assist with childbirth, as well as being able to recognize danger signs in pregnancy and childbirth and immediately ask for help from midwives. In 2017, the Bandung District Health Center UPT alone contributed to the deaths of 3 mothers caused by births by labor with traditional birth attendants and health workers helped with various delays due to the patient arriving in an emergency condition . According to an interview conducted with the Head of the Bandung District UPT Health Center, he said that there are still around 38 traditional birth attendants in the work area of the Bandung District UPT Health Center who are still active in helping with childbirth. So there are still people who give birth with the help of a traditional birth attendants. Apart from family support and also the cultural factors of the community which state that if the birth is not carried out by a traditional birth attendants then when someone in the family dies the death will not be taken care of by traditional birth attendants. Furthermore, from all the pregnant women in the Bandung Community Health Center, Bandung District, Serang Banten Regency, they carry out Ante Natal Care diligently with health workers, which is Midwives and there are also community health centers or Independent Practicing Midwives. However, from the number of people who carry out routine check-ups, it turns out that there are still many pregnant women who give birth by traditional birth attendants. In 2017, the number of women giving birth was 561 people, 160 people gave birth by traditional birth attendants and 401 people gave birth by health workers. And 2018 data from January to March of 115 people, 50 people gave birth by traditional birth attendants and 65 people gave birth assisted by health workers. This study aim to analyze factors associated with women choice of traditional birth attendants in Bandung Health Centre, Serang Banten in 2018. --- METHOD The design of this study is a cross-sectional study. The population is all childbirth women in UPT Bandung Health Centre during January and May 2018, comprising 115 women. The sample is total population. The study site is in the UPT Bandung District Health Centre Serang Regency Banten in 2018. The dependent variable is the women's choice of traditional birth attendant, and the independent variables are education, knowledge, social economy status, and accessibility to health care facilities. The instrument used is a questionnaire about the knowledge of women regarding the choice of birth attendants. The researcher developed this instrument, which has been tested for validity and reliability. Data were analyzed by using nonparametric statistic. This study has gained the ethical approval. Table 1 shows the respondents characteristics based on choice of birth attendants, education, knowledge, socio-economic status, and accessibility to health care facility. Out of 115 respondents, more than half of respondents chose health care worker in childbirth , 40.9% was graduated from Junior High School, 58.3% have high level of knowledge, 51.3% have low socio-economic status which is under the minimum standard, and 53% of them have house that is far from health care facility. Table 2 shows that three of the independent variables are related to women's choice of birth attendants in childbirth. They are education , knowledge , and Accessibility to Health Care Facility . There is no relationship between socioeconomic status and women's choice of birth attendants in childbirth . --- RESULT Respondents Characteristics --- Bivariate Analysis --- DISCUSSION Traditional birth attendants, or TBAs, have historically been the primary human resource available to women giving delivery. Even now, they accompany most deliveries in rural areas of underdeveloped countries, though their function varies among cultures and at different times . A Traditional Birth Attendant is one form of caregiver in Indonesia's rural communities. TBA is a person who aids the mother during childbirth and who learned her skills by birthing her own children or through an apprenticeship with other TBAs. TBAs are mostly older ladies who learned their trade from their elders. In this study, most respondents gave birth by health workers compared to births by non-health workers. Traditional birth attendants have since ancient time provided care to pregnant women. As such, the collaboration between midwives and traditional birth attendant can be an essential effort towards the reduction of the maternal and neonatal mortality and morbidity rate especially in low-and middle-income countries . Traditional birth attendants, or TBAs, have historically been the primary human resource available to women giving delivery. Even now, they accompany most deliveries in rural areas of underdeveloped countries, though their function varies among cultures and at different times. Based on the results of this study, the majority are helped by health workers because the higher a person's education and knowledge, the more they will choose to give birth by a health worker. However, 2 respondents have been researched who choose birth help from non-health workers, this is due to family customs which influenced the respondents to choose birth assistance by non-health workers. A study conducted in Bangladesh found the reasons why did women choose home birth with TBA are traditional views prevail, religious beliefs, poverty, literacy and lack of knowledge, religious belief, poor road conditions and lack of available transports, and fear regarding cesarean delivery . Other study found that charisma and trust were related to women choice of TBA . Lien and Cao defined public trust as a condition of the outcomes of interactions between one party and others with the ability and integrity. Because of previous experiences and interactions, where expectations are met and satisfaction is obtained, which eventually builds a community perspective and emerges trust . Another study from Ghana found that the key motivator for conventional birth attendant delivery services was the quality of care . Obstacles to skilled delivery included midwives' poor attitude, abuse, and fear of caesarean section. Community conventions dictate that womanhood is associated with vaginal delivery, and women who deliver through caesarean section are not treated with the same respect. Traditional birth attendants, as opposed to younger midwives, were thought to be more experienced and understand the psychosocial requirements of women during labor. Furthermore, the impossibility of women to obtain all of the items needed for delivery at biomedical institutions emerged as a driving force behind traditional birth attendant delivery services. The preference for squatting position during labor, as well as the social support provided to mothers by traditional birth attendants, are important considerations for the usage of their services. Previous research conducted by Masita & Puspita found that 46.9% of births were helped by health care workers. They found that most contributed factors is education . Childbirth assisted by a traditional birth attendant is one of the health cases that still often occurs in Indonesia. In fact, almost all Indonesian people, whether living in rural or urban areas, prefer to be helped by traditional birth attendants. This is caused by local traditions and customs. Health problems for residents in cities and rural areas of Indonesia are still a complicated problem. This can be seen from the many health programs that continue to be implemented and continue to be developed that are not working well, whether they are new health programs or health programs that are modifications of old health programs. One of the government's strategies to reduce the time it takes for health workers to respond is to form alliances with traditional birth attendants. In practice, untrained birth attendants were taught and accompanied by midwives. Training sessions held once a month improve traditional birth attendants' knowledge of mother and child health. Traditional birth attendants have access to up-to-date information, allowing them to make swift decisions in practice . A previous study conducted in West Java found that Traditional birth attendants worked actively with midwives . Traditional birth attendants now infrequently attend births, despite the fact that a significant number of community members sought their assistance for birth attendant. Community people believe that these traditional birth attendants have charisma and some supernatural power. Typically, traditional birth attendants participate in cultural ceremonies. Community members sometimes seek out traditional birth attendants for advice. The mother or grandmother of the laboring woman decided to appoint a birth attendant in an extended household. The laboring mother chose to pick a birth attendant in a smaller family. --- CONCLUSION Factors that contributed to women's choice of traditional birth attendants in this study are education, knowledge, and accessibility to healthcare facilities. The factors identified in this study for the preference for TBA could assist policymakers and program implementers in implementing socially and culturally appropriate community-based interventions that can contribute to the reduction of maternal mortality and morbidity and increase maternal health service utilization in Indonesia. To promote competent attendance at birth and reduce dependency on TBAs, suitable interventions that address traditional and cultural delivery misunderstandings and address culturally informed demand development activities for facility delivery are crucial. Future study is needed to identify other variables which might contributed to women choice of TBA in childbirth. --- CONFLICT OF INTEREST There is no conflict of interest in conducting this study.

The number of birth deliveries attended by unskilled traditional birth attendants was still high. A lot of women like to do ANC, but eventually, they choose traditional birth attendants to help them in the childbirth process. The research aims to analyze factors related to women's choice of traditional birth attendants in the childbirth process at the work area of Bandung Health Center, Serang, Banten, in 2018. This is descriptive quantitative research with a cross-sectional approach. The population is 115 women who gave birth in the work area of Bandung Health Center, Serang, Banten, during May and June of 2018. The sample is a total population. The dependent variable is the women's choice of traditional birth attendants, and the dependent variables are education, knowledge, socio-economic status, and the distance of the women's houses to the Health Center. The results show that among all independent variables, three of them are related to women's choice of birth attendants in childbirth. They are education (p=0.036), knowledge (p=0.015), and Accessibility to Health Care Facility (p=0.008). There is no relationship between socioeconomic status and women's choice of birth attendants in childbirth (p=0.148). Future research should explore more variables that might contributed to women's choice of traditional birth attendants. Education intervention is needed to increase the knowledge of the community regarding the importance of using healthcare facilities during childbirth.

Introduction Any network found in the literature is inevitably just a sampled representative of its real-world analogue under study. For instance, many networks change quickly over time and in most cases merely incomplete data is available on the underlying system. Additionally, network sampling techniques are lately often applied to large networks to allow for their faster and more efficient analysis. Since the findings of the analyses and simulations on such sampled networks are implied for the original ones, it is of key importance to understand the structural differences between the original networks and their sampled variants. A large number of studies on network sampling focused on the changes in network properties introduced by sampling. Lee et al. [1] showed that random node and link selection overestimate the scale-free exponent [2] of the degree and betweenness centrality [3] distributions, while they preserve the degree mixing [4]. On the other hand, random node selection preserves the degree distribution of different random graphs [5] and performs better for larger sampled networks [6]. Furthermore, Leskovec et al. [7] showed that the exploration sampling using random walks or forest-fire strategy [8] outperforms the random selection techniques in preserving the clustering coefficient [9], different spectral properties [7], and the in-degree and out-degree distributions. More recently, Ahmed et al. [10] proposed random link selection with additional induction step, which notably improves on the current state-of-the-art. Their results confirm that the proposed technique well captures the degree distributions, shortest paths [9] and also the clustering coefficient of the original networks. Lately, different studies also focus on finding and correcting biases in sampling process, for example observing the changes of user attributes under the sampling of social networks [11], analyzing the bias of traceroute sampling [12] and understanding the changes of degree distribution and hubs inclusion under various sampling techniques [13]. However, despite all those efforts, the changes in network structure introduced by sampling and the effects of network structure on the performance of sampling are still far from understood. Real-world networks commonly reveal communities , described as densely connected clusters of nodes that are loosely connected between [15]. Communities possibly play important roles in different real-world systems, for example in social networks communities represent friendship circles or people with similar interest [16], while in citation networks communities can help us to reveal relationships between scientific disciplines [17]. Furthermore, community structure has a strong impact on dynamic processes taking place on networks [18] and thus provides an important insight into structural organization and functional behavior of real-world systems. Consequently, a number of community detection algorithms have been proposed over the last years [19,20,21,22] . Most of these studies focus on classical communities characterized by higher density of edges [24]. However, some recent works demonstrate that real-world networks reveal also other characteristic groups of nodes [25,26] like groups of structurally equivalent nodes denoted modules [25,27] , or different mixtures of communities and modules [29]. Despite community structure appears to be an intrinsic property of many real-world networks, only a few studies considered the effects between the community structure and network sampling. Salehi et al. [30] proposed Page-Rank sampling, which improves the performance of sampling of networks with strong community structure. Furthermore, expansion sampling [31] directly constructs a sample representative of the community structure, while it can also be used to infer communities of the unsampled nodes. Other studies, for example analyzed the evolution of community structure in collaboration networks and showed that the number of communities and their size increase over time [32], while the network sampling has a potential application in testing for signs of preferential attachment in the growth of networks [33]. However, to the best of our knowledge, the question whether sampling destroys the structure of communities and other groups of nodes or are sampled nodes organized in a similar way than nodes in original network remains unanswered. In this paper, we study the presence of characteristic groups of nodes in different social and information networks and analyze the changes in network group structure introduced by sampling. We consider six sampling techniques including random node and link selection, network exploration and expansion sampling. The results first reveal that nodes in social networks form densely linked community-like groups, while the structure of information networks is better described by modules. However, regardless of the type of the network and consistently across different sampling techniques, the structure of sampled networks exhibits much stronger characterization by community-like groups than the original networks. We therefore conclude that the rich community structure is not necessary a result of for example homophily in social networks. The rest of the paper is structured as follows. In Section 2, we introduce different sampling techniques considered in the study, while the adopted node group extraction framework is presented in Section 3. The results of the empirical analysis are reported and formally discussed in Section 4, while Section 5 summarizes the paper and gives some prominent directions for future research. --- Network sampling Network sampling techniques can be roughly divided into two categories: random selection and network exploration techniques. In the first category, nodes or links are included in the sample uniformly at random or proportional to some particular characteristic like the degree of a node or its PageRank score [34]. In the second category, the sample is constructed by retrieving a neighborhood of a randomly selected seed node using random walks, breadth-first search or another strategy. For the purpose of this study, we consider three techniques from each of the categories. --- Random selection From the random selection category, we first adopt random node selection by degree [7] . Here, the nodes are selected randomly with probability proportional to In breadth-first sampling, a seed node is first selected uniformly at random, while its broad neighborhood retrieved from breadth-first search is included in the sample. In forest-fire sampling, the broad neighborhood of a randomly selected seed node is retrieved from partial breadth-first search, where only a fraction of neighbors is included in the sample. In expansion sampling, the seed node is selected uniformly at random, while the remaining nodes are selected from the neighborhood of sampled nodes with probability proportional to their contribution to the expansion factor . their degrees, while all their mutual links are included in the sample ). Note that RND improves the performance of the basic random node selection [7,35], where the nodes are selected to the sample uniformly at random. RND fits better spectral network properties [7] and produces the sample with larger weakly connected component [35]. Moreover, it shows good performance in preserving the clustering coefficient and betweenness centrality distribution of the original networks [35]. Nevertheless, it can still construct a disconnected sample network, despite a fully connected original network. Next, we adopt random link selection [7] , where the sample consists of links selected uniformly at random ). RLS overestimates degree and betweenness centrality exponent, underestimate the clustering coefficient and accurately matches the assortativity of the original network [1]. The samples created with RLS are sparse and the connectivity of the original network is not preserved, still RLS is likely to capture the path length of the original network [36]. Last, we adopt random link selection with induction [10] , which improves the performance of RLS. In RLI, the sample consists of randomly selected links as before, while also all additional links between their endpoints ). RLI outperforms several other methods in capturing the degree, path length and clustering coefficient distribution. It selects nodes with higher degree than RLS, thus the connectivity of the sample is increased [10]. Techniques from random selection category imitate classical statistical sampling approaches, where each individual is selected from population independently from others until desired size of the sample is reached. --- Network exploration From the network exploration category, we first adopt breadth-first sampling [1] . Here, a seed node is selected uniformly at random, while its broad neighborhood retrieved from the basic breadth-first search is included in the sample ). The sample network is thus a connected subgraph of the original network. BFS is biased towards selecting high-degree nodes in the sample [37]. It captures well the degree distribution of the networks, while it performs worst in inclusion of hubs in the sample quickly in the sampling process [13]. BFS imitates the snowball sampling approach for collecting social data used especially when the data is difficult to reach [38]. Selected seed participant is asked to report his friends, which are than invited to report their friends. The procedure is repeated until the desired number of people is sampled. Next, we adopt a modification of BFS denoted forest-fire sampling [7] . In FFS, the broad neighborhood of a randomly selected seed node is retrieved from partial breadth-first search, where only some neighbors are included in the sample on each step ). The number of neighbors is sampled from a geometric distribution with mean p/, where p is set to 0.7 [7]. FFS matches well spectral properties [7], while it underestimates the degree distribution and fails to match the path length and clustering coefficient of the original networks [36]. However, FFS corresponds to a model by which one author collects the papers to cite and include them in the bibliography [8]. The author starts with one paper, explores its bibliography and selects the papers to cite. The procedure is recursively repeated in selected papers until desired collection of citations is reached. Last, we adopt expansion sampling [31] , where the seed node is again selected uniformly at random, while the neighbors of the sampled nodes are included in the sample with probability proportional to 1 -β |N -∪S)| , where v is the concerned node, S the current sample and N the neighborhood of nodes in S ). Expression |N - ∪ S)| denotes the expansion factor of node v for sample S and means the number of new neighbors contributed by v. The parameter β is set to 0.9 [31]. Note that EXS ensures that the sample consists of nodes from most communities in the original network and that the nodes that are grouped together in the original network, are also grouped together in the sample [15]. EXS imitates the modification of snowball sampling approach mentioned above, where for example we want to gather the data about individuals from different countries. Thus, on each step we include in the sample the individuals, which knows larger number of others from various countries. --- Group extraction The node group structure of different networks is explored by a group extraction framework [29,39,40] with a brief overview below. Let the network be represented by an undirected graph G, where V is the set of nodes and L the set of links. Next, let S be a group of nodes and T a subset of nodes representing its corresponding linking pattern , S, T ⊆ V . Denote s = |S| and t = |T |. The linking pattern T is selected to maximize the number of links between S and T , and minimize the number of links between S and T C , while disregarding the links with both endpoints in S C . For details on the group objective function see [29,41]. The above formalism comprises different types of groups commonly analyzed in the literature . It consider communities [15] , defined as a group of nodes with more links toward the nodes in the group than to the rest of the network [24]. Communities are characterized by S = T . Furthermore, the formalism consider possibly disconnected groups of structurally equivalent nodes denoted modules [25,27] , defined as a disconnected group of nodes with more links towards common neighbors than to the rest of the network [24]. Modules have S ∩ T = ∅. Communities and modules represent two extreme cases with all other groups being the mixtures of the two [29], S ∩ T ⊂ S and/or S ∩ T ⊂ T . The reader may also find it interesting that the core-periphery structure is a mixture with S ⊂ T , while the hub & spokes structure is a module with t = 1. The type of group S can in fact be determined by the Jaccard index [42] of S and its corresponding linking pattern T . The group parameter τ [29], τ ∈ [0, 1], is defined as τ = |S ∩ T | |S ∪ T | . Communities have τ = 1, while modules are indicated by τ = 0. Mixtures correspond to groups with 0 < τ < 1. For the rest of the paper, we refer to groups with τ ≈ 1 as community-like and groups with τ ≈ 0 as module-like. Groups in networks are revealed by a sequential extraction procedure proposed in [39,29,40]. One first finds the group S and its linking pattern T with random-restart hill climbing [43] that maximizes the objective function. Next, the revealed group S is extracted from the network by removing the links between groups S and T , and any node that becomes isolated. The procedure is then repeated on the remaining network until the objective function is larger than the 99th percentile of the values obtained under the same framework in a corresponding Erdős-Rényi random graph [44]. All groups reported in the paper are thus statistically significant at 1% level. Note that the above procedure allows for overlapping [45], hierarchical [46], nested and other classes of groups. --- Analysis and discussion Section 4.1 introduces real-world networks considered in the study. Section 4.2 reports the node group structure of the original networks extracted with the framework described in Section 3. The groups extracted from the sampled networks are analyzed in Section 4.3. For a complete analysis, we also observe the node group structure of a large network with more than a million links in Section 4.4. --- Network data The empirical analysis in the following sections was performed on four real-world social and information networks. Their main characteristics are shown in Table 1. The Collab [8] is a social network of scientific collaborations among researchers, who submitted their papers to High Energy Physics -Theory category on the arXiv in the period from January 1993 to April 2003. The nodes represent the authors, while undirected links denote that two authors co-authored at least one paper together. The PGP [47] is a social network, which corresponds to the interaction network of users of the Pretty Good Privacy algorithm collected in July 2001. The nodes represent users, while undirected links indicate relationships between those, who sign each other's public key. The P2P [8] is an information network, which contains a sequence of snapshots of the Gnutella peer-to-peer file sharing network collected in August 2002. The nodes represent hosts in the Gnutella network, which are linked by undirected links if there exist connections between them. The Citation [8] is an information network, again gathered from the High Energy Physics -Theory category from the arXiv in the period from January 1993 to April 2003 and includes the citations among all papers in the dataset. The network consists of nodes, which represent papers, while links denote that one paper cite another. --- Group structure of original networks We first analyze the properties of groups extracted from the original networks summarized in Table 2. The number of groups differs among networks, still the mean group size s is comparable across network types. Groups S in social networks consist of around 64 nodes, while s in information networks exceeds 150 nodes. The mean linking pattern size t of social networks is comparable to s . The latter relation t ≈ s is expected due to the pronounced community structure commonly found in social networks [48]. On the other hand, t > s is expected for information networks, due to the abundance of module-like groups. Table 2: Groups of nodes extracted from social and information networks. We report the number of groups #, the mean group size s, the mean pattern size t, the mean group parameter τ , the median group parameter denoted mτ and the distribution over different types of groups . Notice that social networks consist of smaller groups with larger τ than information networks. The characteristic group structure of networks is reflected in the group parameter τ . For social networks, its values are around 0.556, which indicates the presence of communities, modules and mixtures of these. In contrast to social networks, the information networks have τ closer to 0 and consist mostly of module-like groups. To summarize, social networks represent people and interactions between them, like a few authors writing a paper together, therefore we can expect a larger number of community-like groups in these networks. On the other hand, in information networks the homophily is less typical and thus the structure of these networks seem better described by module-like groups. --- Group structure of sampled networks Sampling techniques outlined in Section 2 enable setting the size of the sampled networks in advance. We consider sample sizes of 15% of nodes from the original networks, that provides for an accurate fit of several network properties [7,35]. Table 3 and 4 present the properties of the node group structure of sampled social and information networks, respectively. Notice that RLS and FFS show different performance than other techniques. The samples obtained with RLS and FFS contain less groups, which consist of no more than 36 nodes. Additionally, almost all groups in these samples are modules, which reflects in the mean group parameter τ approaching 0 for all networks. To verify the above findings, we compute externally studentized residuals of the sampled networks that measure the consistency of each sampling technique with the rest. The residuals are calculated for each technique as the difference between the observed value of considered property and its mean divided by the standard deviation. The mean value and standard deviation are computed for all sampling techniques, excluding the observed one . Statistically significant inconsistencies between techniques are revealed by two-tailed Student t-test [50] at P -value of 0.1, rejecting the null hypothesis that the values of the considered property are consistent across the sampling techniques. Statistical comparison of sampling techniques for the number of groups and the mean group parameter τ is shown on Fig. 4. We confirm that the samples obtained with RLS and FFS reveal significantly less groups with significantly smaller τ than other sampling techniques. Moreover, if we compare the number of links in the sampled networks, RLS and FFS create samples that contain on average 3% of links from the original networks. In contrast, the samples obtained with RND, RLI, BFS and EXS consist of around 16% of links from the original networks. As mentioned before, the sizes of all samples are 15% of the original networks, thus the sampled networks obtained with RLS and FFS are much sparser than others. In addition, the performance of RLS and FFS can also be explained by their definition. Since in RLS we include only randomly selected links in the sample, the variance is very high, while it commonly contains a large number of sparsely linked components, whose structure is best described as module-like. On the other hand, the samples obtained with FFS consist of one connected component with a low average degree of 2.33. Thus, the sparsely connected nodes also form groups, which are more similar to modules. Due to the above reasons, we exclude RLS and FFS from further analysis. We focus on RND, RLI, BFS, and EXS, whose performance is clearly more comparable. The selected sampling techniques perform similarly across all networks as shown in Table 3 for social and Table 4 for information networks. The samples consist of various number of groups, still in most cases less than the original networks. The mean sizes s and t are around 40, in contrast to groups with 143 nodes on average in the original networks. Still, s ≈ t irrespective of network type and the sampling technique, which implies stronger characterization by community-like groups, as already argued in the case of social networks in Section 4.2. Indeed, the majority of groups found in sampled social networks are community-like, which reflects in the parameter τ > 0.7. In sampled information networks the number of mixtures decreases and communities appear, thus τ is larger than in the original networks. Fig. 5 shows a clear difference in the distribution of τ between the original and sampled networks. Furthermore, to confirm that differences exist between the structure of the original and sampled networks, we compute externally studentized residuals, where we include the value of considered property of the original network in computing the mean over different sampling techniques. We compare the number of groups and the parameter Table 4: Groups of nodes extracted from sampled information networks over 100 realizations of different sampling techniques . We report the number of groups # and standard deviation, the mean group size s, the mean pattern size t, the mean group parameter τ and standard deviation, the median group parameter denoted mτ and the distribution over different types of groups. Notice that sampled networks expectedly consist of smaller groups, but with larger τ than original information networks . τ for the original networks and their samples . The results prove that the original networks contain a significantly larger number of groups with significantly smaller τ than the sampled networks. Yet, larger parameter τ and consequently more communitylike groups in sampled social networks and less module-like groups in sampled information networks indicate clear changes in the network structure introduced by sampling. We conclude that these changes occur regardless of the network type or the adopted sampling technique. Notice that the largest τ and thus the strongest characterization by communitylike groups is revealed in the sampled networks obtained with both random selection techniques, RND and RLI. In RND nodes with higher degrees are more likely to be selected to the sample by definition, while RLI is biased in a similar way [10]. Thus, densely connected groups of nodes have a higher chance of being included in the sampled network, while sparse parts of the networks remain unsampled. On the other hand, BFS and EXS sample the broad neighborhood of a randomly selected seed node and thus the sampled network represents a connected component. In the case of BFS, all nodes and links of some particular part of the original network are sampled. The latter is believed to be representative of the entire network [37], yet BFS is biased towards sampling nodes with higher degree [51] and overestimates the clustering coefficient, especially in information networks [1]. On the other hand, EXS ensures the smallest partition distance among several other sampling techniques, which means that nodes grouped together in communities of sampled network are also in the same community in the original network [31]. Therefore, the stronger characterization by community-like groups in sampled networks can also be explained by the definition and behavior of the sampling techniques. . We show externally studentized residuals that measure the consistency of each sampling technique with the rest and expose statistically significant inconsistencies between the techniques with two-tailed Student t-test at P -value of 0.1 . Notice that sampled networks obtained with RLS and FFS reveal less groups ) with significantly smaller parameter τ ) than other sampling techniques. --- Group structure of a large network Due to the relatively high time complexity of the node group extraction framework, we consider only networks with a few thousand nodes. However, our previous study [35] proved that the size of the original network does not affect the accuracy of the sampling. Still, for a complete analysis, we also inspect the changes in node group structure introduced by sampling of a large NotreDame network with more than a million links. Due to the simplicity and execution time, we present the analysis for two sampling techniques, RND from random selection and BFS from network exploration category. We also limit the number of groups extracted from the networks to 100 . The NotreDame data are collected from the web pages of the University of Notre Dame -nd.edu domain in 1999. The network contains 325,729 nodes representing individual web pages, while 1,497,134 links denote hyperlinks among them. Table 5 shows the properties of groups, found in the original and sampled networks. The samples consist of smaller groups, still the mean size s remains larger than the mean size t. The majority of groups extracted from the original network are modulelike, which reflects in the parameter τ slightly larger than 0. On the other hand, the changes introduced by sampling are clear, since the samples contain less modules, which is revealed by a larger parameter τ . These findings are consistent with the results on smaller networks from previous sections. The NotreDame as an information network expectedly consists of densely linked groups similar to modules, while the structure of sampled networks exhibits stronger characterization by community-like groups. That is again irrespective of the adopted sampling technique. . We show externally studentized residuals that measure the consistency of each network with the rest and expose statistically significant inconsistencies between the networks with two-tailed Student t-test at P -value of 0.1 . Notice that original networks reveal more groups ) with significantly smaller parameter τ ) than the sampled networks. --- Conclusion In this paper, we study the presence of characteristic groups of nodes like communities and modules in different social and information networks. We observe the groups of the original networks and analyze the changes in the group structure introduced by the network sampling. The results first reveal noticeable differences in the group structure of original social and information networks. Nodes in social networks form smaller community-like groups, while information networks are better characterized by larger modules. After applying network sampling techniques, sampled networks expectedly contain fewer and smaller groups. However, the sampled networks exhibit stronger characterization by community-like groups than the original networks. We have shown that the changes in the node group structure introduced by sampling occur regardless of the network type and consistently across different sampling techniques. Since networks commonly considered in the literature are inevitably just a sampled representative of its real-world analogue, some results, such as rich community structure found in these networks, may be influenced by or are merely an artifact of sampling. Our future work will mainly focus on larger real-world networks, including other types of networks like biological and technological. Moreover, we will further analyze the changes in the node group structure introduced by sampling and explore techniques that could overcome observed deficiencies.

Any network studied in the literature is inevitably just a sampled representative of its real-world analogue. Additionally, network sampling is lately often applied to large networks to allow for their faster and more efficient analysis. Nevertheless, the changes in network structure introduced by sampling are still far from understood. In this paper, we study the presence of characteristic groups of nodes in sampled social and information networks. We consider different network sampling techniques including random node and link selection, network exploration and expansion. We first observe that the structure of social networks reveals densely linked groups like communities, while the structure of information networks is better described by modules of structurally equivalent nodes. However, despite these notable differences, the structure of sampled networks exhibits stronger characterization by community-like groups than the original networks, irrespective of their type and consistently across various sampling techniques. Hence, rich community structure commonly observed in social and information networks is to some extent merely an artifact of sampling.

Introduction This paper considers how a diagnosis of dementia affects people's planning for future social care needs and associated costs. Social care in England is funded through a combination of state funding and individuals' private resources. Eligibility for state-funded social care involves a needs test and a means test. The majority of older people pay a means-tested contribution towards their social care, but people with savings and assets above a nationally set threshold pay all of the costs themselves; the latter are known as 'selffunders'. The threshold, known as the upper capital limit, is currently £23,250 . There are plans to introduce a new £86,000 cap on the amount anyone in England spends on personal care over their lifetime and the upper capital limit will be increased from £23,250 to £100,000 . This means that people with up to £100,000 in savings and assets will pay a means-tested contribution to personal care costs rather than automatically paying the full amount. Those with above £100,000 will still pay the full amount. People will continue to pay until they have spent £86,000 on eligible personal care. Accommodation and living expenses are not included in the £86,000 cap. There are no precise figures for the number of older self-funders in England. The Office for National Statistics estimated 35 per cent of care home residents in 2020/21 were self-funders. But care homes are only part of the story; many more people receive care in their own homes, typically from private or third-sector agencies or individuals. There are no up-to-date estimates of the number of people selffunding in their own homes, but Henwood et al. suggest there are around 350,000 self-funders in England, with 50 per cent more people self-funding care at home than in residential care. People living in their own homes also rely on unpaid care from family and friends. The National Audit Office cites data suggesting between 10 and 17 per cent of people aged over 16 provide unpaid care to adults. Furthermore, it is estimated that 7 per cent of the population aged 65 and over has some unmet needs . Social care is expensive. Home care costs in England are currently around £25 an hour. Self-funding care home residents typically pay over £3,500 a month for residential care, and substantially more for nursing care. Thus, the cost to individuals over a number of years can reach tens, and for some people, hundreds of thousands of pounds. Running out of money to spend on care or leaving no inheritance are common concerns . However, despite these potentially huge sums, there is evidence that self-funders do not think in advance about the costs of their care or plan how they will manage their finances to pay for it . One reason for failing to plan is that people often do not understand the social care system and so do not realise that they may need to pay for care . Another is that people do not expect to need care. About 7 per cent of people aged over 65 in England in 2020 were receiving home care , and only 4 per cent of people aged 65 or over in the United Kingdom live in care homes, rising to 15 per cent aged 85 or over . It is therefore understandable that people see little reason to plan for something they perceive as unlikely to happen. A further reason is that people place a higher value on the present than on the future, so incentives to take action now which have an impact on the future are weak . There is also research suggesting people struggle with navigating the complex UK care systems . The challenges of doing so as a person with dementia can create additional uncertainty and concern about making the 'wrong' choices as well as continued reflection on decisions after they have been made , potentially perpetuating any feelings of uncertainty and/or regret. In addition, fear of being dependent, anxieties about care costs and fear of being unable to pay can deter people from thinking about future care needs and can 'paralyse' people into inaction . Yet lack of planning for care and its costs can mean people feel ill-prepared and pressured into making care choices at crisis points when emotions are already strained and options limited. Some people are diagnosed relatively early with conditions that increase their chances of needing care in the future. There are important questions about whether such diagnoses might motivate planning for the costs of care. Dementia is one such condition. People with dementia face an increased possibility that they will need social care support. It is estimated that about 60 per cent of people receiving home care in the UK and 70 per cent of people in care homes have dementia . However, there is a high level of uncertainty about how quickly, for any particular individual, dementia will progress and the nature of increased need. There is evidence that many people with dementia prefer to focus on the here and now or actively avoid people and places associated with more advanced dementia in order to maintain some distance from their potential futures . But it is also increasingly clear that many people with dementia are concerned about their future living arrangements, often expressing a preference to stay living independently at home rather than move to residential care . Therefore, although people may actively avoid thinking about the future, the fact that they are aware of potential changes and have preferences for how they wish to live, suggests they might also see the value in planning to make these preferences a reality. That they do not do so now may represent a failure of current systems of diagnosis and support. It is axiomatic that people with dementia's cognitive capacity to engage with decision-making declines over time. This applies to many entering the last stages of life, not just those with moderate to severe dementia . It can therefore be argued that people with dementia should be helped to engage in planning as early as possible to ensure that their wishes for future care and associated financial arrangements are known and can be met. Indeed, evidence suggests that people recognise this need to engage whilst still capacitous and operate 'under the assumption that their future ha[s] already shrunken' . There are over 200,000 new cases of dementia each year in the UK . Just over half of people aged over 60 and living with dementia are estimated to be in the early stages . Thus, there is a substantial number of people with the opportunity, and possibly the motivation, to consider their future care needs and the associated financial implications while still able to engage. Following a diagnosis, people with dementia typically attend follow-up appointments with specialist services such as a memory clinic or are discharged to the care of their general practitioner. These follow-up appointments are opportunities to assess the progress and impact of the condition, and to discuss its implications for the short, medium and long term. There are chances to talk about issues such as Lasting Power of Attorney , welfare or financial needs, and opportunities to make advance statements about future care wishes. However, such conversations, despite being recognised as important, are rare . Many people who receive a diagnosis of dementia will have a partner or other family member who supports them and whose role often develops into that of unpaid carer as the individual requires greater support to remain independent. Over time, the carer's role can develop into decision-maker with or on behalf of the person with dementia. The decision-making process for carers of people with dementia has unique elements that make this process time-consuming and emotional, including difficulty accepting the diagnosis and the progressive nature of dementia . Furthermore, carers can feel too drained by the day-to-day issues and tasks of caring for a relative with dementia to think about the future . However, some later-life or postmortem events are more commonly planned for, e.g. wills, LPA and funeral costs . Engagement with care-related planning, including advance care planning, is limited , despite evidence to suggest that carers of people with dementia feel that they can benefit from knowing what the future holds . Even the difficult experience of acting as an attorney for a relative with no advance care plan can be insufficient motivation for carers to make their own advance plans . Furthermore, when people do want to have conversations about advance care planning, opportunities can be missed because there are no formalised processes to share wishes, or people make assumptions that professionals already know what they want . The evidence is therefore mixed, with some demonstrating that people in later life, and their families, do engage with planning about legal and financial issues, and that a diagnosis of dementia can foreshorten people's views of the future, which, in theory, could encourage active planning. But there are also barriers to planning and limited evidence that people do, in practice, engage in activities such as advance care planning. There is even less evidence that people with dementia and their carers engage actively in planning to find and fund social care, should they be ineligible for state support. Here we address the gap in knowledge about if, or how, people recently diagnosed with dementia, and their family carers, engage with planning for social care and its costs. The paper considers people's attitudes to planning for self-funded care, and what facilitates or hinders acting on such plans. --- Methods This paper reports findings from qualitative interviews with selected participants taking part in the DETERMIND programme . DETERMIND explores determinants of quality of life, care and costs, and the consequences of inequalities and inequities for people with dementia and their carers. A cohort of over 900 people diagnosed with dementia within the previous six months has been recruited across three sites in England. Recruitment took place from 2019 to 2023 and included people with dementia and their unpaid carers. The cohort is being followed up annually at least twice, depending on year of recruitment, completing a battery of questionnaires on each occasion. This paper reports on embedded longitudinal qualitative research undertaken for Workstream 4 of DETERMIND investigating the experiences of social care self-funders and self-funders. --- The sample Recruitment of the sample for this qualitative strand within DETERMIND is ongoing and being built over time. The purpose is to create a picture of participants' experiences of self-funded social care over three or more years. Baseline descriptive data from the wider study are used to select purposively participants who are already using social care and support or appear likely to be selffunding care they need in the future. This enables a comparison over time of people who are state-and self-funded, and those who do and do not have current care needs. The sample is dynamic; new people are recruited, people already interviewed are re-interviewed, people drop out of the study, others are interviewed only once. This is the nature of qualitative longitudinal research, during which the participants' stories and thus topics of interest develop over time . The initial interviews included in this paper were undertaken over a two-year period from 2020 and follow-up interviews were undertaken in 2021 and 2022. --- Data collection People with dementia and/or their carer were interviewed face-to-face, online or over the telephone by one of three researchers. Interviews lasted approximately one hour. Each interview followed a topic guide, but the ordering of topics and depth of answers varied according to the participants' situations. Topics included current care and support, planning and co-ordinating care, paying for care, expectations and planning for the future. Second interviews followed up on events and situations discussed in first interviews. Therefore, second interviews covered different aspects of people's experiences, depending on the nature and progress of people's dementia and their personal situations. Wherever possible, the same researcher conducted first and follow-up interviews to give continuity and aid rapport, which can be a benefit of longitudinal qualitative research . All interviewees were prompted to discuss plans for future care and the financial implications of care in each interview. Interviews were audio-recorded and transcribed verbatim. --- Analysis Data were analysed thematically, guided by Rubin and Rubin , to draw together patterns in the data to help understand the relationship between a diagnosis of dementia and planning for self-funded care. The aim of our analysis was to understand the expressed realities of a range of people newly diagnosed with dementia and/or their carers, and to categorise these into common themes. Each of the authors has research and personal experience of dementia and/or self-funded care for older people. Throughout the analysis, the authors reflected on these experiences and how they affected discussion of key themes. Data were managed using the qualitative data management software NVivo 12 . Large sections of transcripts were coded initially according to overarching topics of interest to the DETERMIND study. This highlevel coding enabled the grouping of data from first and second interviews into common themes. This was important as the range of experiences people discussed in first and second interviews overlapped. For example, some people in their first interview discussed a major transition and associated financial considerations such as a move to a care home whilst others, in a second interview, spoke about limited need for care and support. Thus, the date of interviews and whether people were interviewed once or twice was of less importance than the timing in relation to the progression of the dementia and associated events. For the purposes of this paper, data coded under the high-level codes associated with decision-making, planning for the future and financial issues were reviewed by KB to understand what shaped people's planning around paid-for care. After careful reading of the extracts, the data were re-assigned to the following codes: care plans, financial plans, reasons for plans, attitudes to planning, and awareness of diagnosis and implications. Each code contained subcodes including, for example, positive/negative, facilitator/hindrance, short/long term. Through reviewing these codes and coded segments, key themes were developed and refined in consultation with co-authors. --- Ethical considerations Ethical approval for the DETERMIND programme was obtained by the HRA Brighton and Sussex Research Ethics Committee. People included in the qualitative sample for this paper all had the capacity to give informed consent to take part. Carers were interviewed in their own right rather than as consultees or proxies for people with dementia. In follow-up interviews, interviewers checked ongoing consent with participants and were careful to consider verbal and visual clues from people with dementia that might suggest a change in capacity. Interviewers were sensitive to people with dementia's feelings about their diagnosis, using the term 'problems with memory' rather than dementia if preferred. Where possible, the same interviewer carried out initial and follow-up interviews. --- Findings The sample at the time of analysis for this paper comprised 39 interviews relating to the situations of 27 people living with dementia. Table 1 provides the demographics and related characteristics of these 27 people. All were aged over 65 years and lived in the three DETERMIND study regions of London, north-east England and southeast England. Ten follow-up interviews were undertaken approximately a year after the initial interview. Not all 27 cases were suitable for follow-up by 2022 due to the impact of recruitment delays due to COVID-19, the ongoing nature of sample recruitment , participant deaths and dropout from the wider study. Table 2 gives the number of interviews and interviewees. The majority of interviewees were carers. Eighteen were female. In all but one case, the same person took part in the initial and follow-up interviews. In that one case, the person with dementia took part in a first interview and their niece took part in the follow-up interview . Lives with spouse/partner in community 8 Lives with adult child 5 Lives in care home 4 Live-in carer in the community 1 Relationship of carer to person with dementia: No carer in the study 4 Spouse/partner 7 --- Adult child 13 Other adult relative 3 Funding status at first interview: --- Self-funder 12 Future self-funder 8 Local council-funded 7 Notes: N = 27. 1. Two people with dementia moved to a care home between their first and second interviews. Our findings indicate that whilst people recognised likely future care needs and their financial implications, this knowledge did not necessarily translate into actively planning for care or thinking about what it may cost. A key reason that recognition did not translate into action was uncertainty. Findings are presented under the following themes: recognising future care needs and financial implications, the role of uncertainty, and drivers of action. Recognising future care needs and financial implications Some people were more willing than others to talk about the future, but it was evident that participants on the whole recognised the progressive nature of dementia and expected deterioration over time: We don't have our head in the sand … people with dementia have plateaus and then it changes. This awareness of the progression of dementia translated into a recognition of the potential for increased care needs, in response to changes in both physical and cognitive abilities. Some people stated clear lifestyle-related preferences such as wanting to stay in their own homes or not wanting to be a burden on family. People also spoke about doing well now but seeing a time when they, or the person they cared for, would need additional care and support. Support was discussed in terms of the amount and location of care, as well as who would provide the care, but typically as something to consider at some unspecified point in the future: I have actually got a very busy life and I'm very grateful that I'm able, I'm not complaining, however I do see that, you know, down the track I am going to need more physical help. I suppose with the Alzheimer's you know that at some point she probably will, well she will need more care and whether that be home-based care or in a care home, you know, that's your choice later down the line. Many had taken legal advice and acted in readiness for a time when they were unable to make decisions for themselves, for example updating wills, changing home ownership from joint tenancy to tenants in common, and setting up LPA. Note: 1. Includes one carer who did not take part in an initial interview. However, when people talked about the potential financial impact of future care needs, it was frequently framed in terms of concerns. Concerns expressed by adult children whose parents lived with dementia typically stemmed from the worry of not knowing whether their parents' money would be sufficient to cover care: When they [the home care company] put their fees up, you kinda look at it and you think okay, and how much is that gonna cost me every month? So then I go away and work it out, look at mum's incomings and outgoings, what's going up and down, just to make sure that she's not passing that line… Worries were exacerbated by not knowing how long care might be needed or what level of care would be necessary. While most carers who were adult children spoke in general terms about the impact on their parents' finances, occasionally they spoke about the impact on their own circumstances. For example, a woman who lived with her husband in an annex attached to her parents' property was concerned that her parents' future needs for care might impact her own living arrangements: what we're worried about is if my parents, any, if my mum and dad had to go into a care home we'd have to sell the bungalow, which is attached to the annex, and then we'd be homeless ourselves. While this couple had not investigated whether their concerns were warranted, others had made enquiries that had set their minds at rest and enabled them to speak with confidence about the affordability of the care and support they were considering. For example, the daughter of one woman with dementia said she had 'done the sums' and was comfortable that her mother could afford to pay for care for four to five years. Similarly, a husband whose wife had dementia had alleviated his worries about the affordability of future home adaptations by investigating costs online. But others preferred not to think too much about the future costs of care and demonstrated an ostensibly relaxed attitude of 'what will be will be'. This group talked instead about taking each day at a time or living for the present: I wouldn't scrimp now to think she's got to fund a care home. So I wouldn't, I would be willing to spend what I need to spend as I go. Because nobody can see the future. She could be in a care home a year, she could be in a care home, you know, eight years. You just, you can't, you don't know, so you have to go with what is necessary at that time. She hasn't got a lot, and while she's in care she could live for quite a few years, we hope, and the money will just go down and down, and when it's gone, it's gone. People were aware that the progression of the condition might affect need for care in the future, and that this could have a financial impact, including running out of money to fund care. However, despite this, people did not readily move beyond recognition to discussing implications, such as limited funds affecting future care choices or necessitating a move to a cheaper care home. The implication was that there were too few certainties to be able to translate knowledge about condition progression into active planning. The role of uncertainty in planning for self-funded care The level of uncertainty that people felt about a future with dementia had a strong influence on whether or not they had started to plan actively for care and its costs. Analysis suggested three reasons why uncertainty led to inaction: the belief that care needs would remain manageable; concerns about the longevity of plans; and worries about personal skills, knowledge and capacity to make appropriate decisions. The belief that care needs will remain manageable A common reason for not making plans for the future was the hope that the need for formal care would never arise. People were optimistic that the progression of their, or their relative's, dementia would be so slow that if formal care was needed, it would be so far into the future that planning now would be futile. People struggled to imagine what they considered was a hypothetical situation at an unspecified time where the level, type and costs of care were as yet unknown: I do feel very protective when [husband with dementia] is being asked [about future needs], and frightened at the same time, so yeah … Because [questions about needs] seem to indicate something much further down the line … We, we don't, we don't know how far down the line or what's gonna happen do we? I'm not sure how you can plan ahead in as much as you don't know when or where, you know, the situation will arise. In many cases, the person with dementia was not yet prepared to accept help, and carers were unwilling to impose change on them without their agreement or if their wishes were not known. The following quote is from a woman whose husband with dementia had had a recent episode as an inpatient: [The hospital] said 'Do you want him to come home or do you want, want us to put him straight into care?' And I said 'I, I can't just do that to him, let him just never come home again' you know. And he was more knowing then; I mean he still, you know, he still, we still have conversations now, but I just couldn't do it at that time and nothing came of it, he came home and seemed to be coping. Whilst this carer felt her husband was still 'coping' at home, there were numerous examples of carers describing care and support that was failing to meet the person with dementia's needs, often putting additional pressure on the family to provide informal care, but those same carers generally still felt that the time to make changes was at some unspecified point in the future. People were dealing with difficult trade-offs such as their own wellbeing and ability to provide unpaid care against the person's desire to stay at home, or their capacity to pay for or provide unpaid care now against a backdrop of concern about running out of money to fund care in the future. At the same time, the motivation to make plans to safeguard future finances was weak, as people hoped that the anticipated future might never happen. As a result, people showed little interest in finances beyond the immediate future. The focus appeared for most to be on paying for appropriate care in the here and now. Prioritising the present was also in part due to difficulties in reconciling the person with dementia's independence now with the likelihood of increased dependence in the future. This resulted in people with dementia deliberately not engaging with future planning. Even where people talked about preferences for the future, this was countered by statements along the lines of 'I'm not thinking about that but…': I haven't thought about that but if I, if I need it I, I wouldn't want to be a burden on my family, I would want to be able to look after myself, with support from someone. I've not wanted to engage with all of that [planning for care], and I hold the belief that at the moment it will need to, it will happen. Thus, the combination of hope for the future and feeling unready to seek help led people to delay taking action. --- Concerns over the longevity of plans While hoping that care needs would develop slowly and far into the future, people simultaneously described a conflicting narrative about the progressive nature of dementia making them feel that as quickly as they were making plans or changes to care and support, those needs changed, making the arrangements redundant. Essentially, people were of the view that there was no point in planning too far ahead because the future was so uncertain that any plans may become irrelevant and thus be wasted effort. Unforeseen changes in the progress of the dementia could hamper long-term plans, as one woman who was a carer for her husband with dementia described. They had recently downsized and adapted a house they hoped would be suitable for the husband's physical needs for around five years, but his needs had since changed more quickly than expected: I'm not sure that I've actually come to, that I've got a definite plan. I had this house plan, as I've just described to you, I had, I had that sort of plan anyway. I was thinking probably it would be maybe five years before I have to implement that plan. Last year I was thinking that, when we moved. Now I'm not so sure. The progressive nature of dementia, which resulted in increasing care and support needs, was described as disruptive and disorientating for the person with dementia, but it also raised a dilemma for carers. The dilemma was choosing the best time to implement changes. Carers were aware that as the dementia progressed and cognitive abilities declined, making changes in care arrangements would become more difficult. But if the person with dementia was content with their current arrangements and had built good relationships with care workers, the temptation was to delay any changes, even though they might be considered as future proofing in terms of both care and finances. It is also possible that carers delayed changes until a crisis point, when there was no longer a choice, or the person with dementia was no longer able to engage. This could be especially appealing given the uncertainty about whether the need for change would ever arise. The first quote below is from a niece considering the long-term affordability of a care home for her uncle with dementia; the second is from a daughter who had some concerns about the current home care arrangements: Friends and relatives of [person with dementia] have made the decision that we don't want to move him [to a less-expensive care home] because it would be confusing. And even though he's confused about where he is a lot of the time, essentially he's quite happy and he, we're satisfied that he's being well cared for and, you know, he's in fairly good physical health in there. At the end of the day it's got to be what's right for me mum, and me mum is happy with her particular carer at this moment in and if I start chopping and changing carers again when mum's Alzheimer's is actually getting worse then I've, you know, I've got to take a lot of other things into consideration. Furthermore, where the person with dementia's health was in a period of flux, including comorbidities unrelated to dementia, carers were reluctant to instigate any plans until they knew if and to what extent the person with dementia might regain functionality or their care needs may stabilise. This daughter describes her feelings when trying to plan around multiple fluctuations in her mother's care needs: There's been three other times I've been at her bedside, liver failure, where they thought she's not going to survive. Every time she's come back … I've just realised that there's no point in really sort of planning, because it's just likeit did change all the time … it was just doing my head in. So I just think, I'll just take it as it is, and unless there'swe'll deal with whatever happens when it happens, kind of thing. Because the pre-planning is not worth it. Things always change. Balancing care, finances and other commitments during these periods was particularly stressful. --- Uncertainty about skills, knowledge and the capacity to act People spoke about their lack of confidence in their own skills or knowledge, which led them to delay planning or taking action. For example, carers worried about not knowing the costs of care or the financial implications. People did not know if the time was right for their relatives with dementia to move to a care home, or what type of care home would be suitable for their immediate needs and remain suitable in the longer term. People did not understand the financing of care, the cost of advice or what would happen if the money ran out. Some were reluctant to seek financial advice about paying for care because they found discussing finances intimidating: My mother, it's difficult cos she doesn't actually need nursing but she's probably not good [well] enough for a care home; I'm not quite sure how, where the line goes really. [Paying for care is] the one bit I've not properly engaged with and I don't feel like doing it, first of all cos part of me thinks well we'll deal with it when we get there, and the other bit is that I've never understood all that stuff anyway. I'm not very comfortable with all that kinda stuff, my talents lie elsewhere. So it's difficult really to think 'oh well if I do that…', but then in four years' time what happens, or five years, whenever the money runs out. But, but that, that's sort of what, a self-funding question mark that, you know, you don't really have an answer to until you get to that point… Many people, despite holding strong views about their preferences for the future, did little to help make those preferences a reality. For some, the perceived effort or potential negative consequences of implementing a change appeared to outweigh the benefits. In particular, people spoke about their hesitancy in selling family homes or preparing them for rental to enable downsizing or freeing up of funds to pay care fees. Part of the reluctance was attachment to the family home but for adult children of people with dementia this was exacerbated by their capacity to act due to the busyness of their lives, often caring for families and working as well as navigating the social care system. Processes that should be simple, like filling in application forms for care-related benefits and discounts, put people off acting because they were too complicated or time-consuming. --- Reasons for action Few people discussed factors that facilitated planning, but there were some exceptions where the dementia diagnosis had prompted families to gather knowledge or actively plan. A common thread across participants' views was that this propensity to plan reflected people's characters as 'planners'. Occasionally, and in contrast, external triggers were the prompt. --- Being a planner People who described themselves as planners spoke about taking one step at a time or getting gradually sorted with respect to future care and finances. For these selfdefined planners, the potential costs of care and making financial arrangements in anticipation of change, especially to maintain preferred living arrangements, were important: With the financial consultant it was more about how we could make her money last as long as possible, you know, cos we didn't know at that point whether she would be able to manage independently having, you know, and being in the wheelchair. So we, I mean as it is, as I said, because of the determination, she, that's where she wants to be, at home, and she wants to do everything she possibly can to make sure she can stay there. In some cases it was the person with dementia who was the planner, previously expressing a preference, such as not to be a burden on family, which effectively gave families permission to plan for that eventuality: Our mother's always planned ahead. She likes the flat she lives in now. She had been living in a house with a garden and she thoughtand she loves gardening -'I'm not always going to be able to manage the garden', so before she got to the point where she couldn't, she moved. She's very practical, and I think it's rubbed off on us. People also spoke about how their past experiences, some care-related but others not, prompted them to plan. These included positive experiences, whereby people would repeat earlier actions that had worked, as well as negative experiences or inaction that led to a crisis that people wanted to avoid repeating. For example, one woman learnt from her friend's experience and bought a care-related financial product, as described below: She's an intelligent lady and I think before she had dementia she realised that living alone, without children and so on, she may well need to pay for care at some point or other. I think, some years ago, I took out an insurance policy for my father and she was aware that that paid out really well and was really helpful to us and she decided to, to follow suit. Another woman, who had experienced her husband's very high self-funded care costs some years earlier, had put her house into trust for her grandchildren years before her diagnosis of dementia. Thus, being a planner could play out in multiple ways. --- External triggers Occasionally, external factors prompted people into action. This was evident particularly in relation to substantial financial decisions. For example, a daughter described slowly 'muddling through' the decision that her mother should move into a care home, but realising quite quickly that she had to sell her mother's house when it became apparent that without doing so the fees were not affordable in the long term. A niece acting for her uncle with dementia, who had previously taken out equity release loans against the value of his home , was left with no choice but to sell his house to repay the loans when her uncle moved into a care home. Neither family had planned for these events, although it could be argued that both were foreseeable, even if the timing of them was not. Other examples included carers needing operations or going on holiday, which prompted the need to pay for additional temporary care for the person with dementia. --- Discussion The analyses reported here set out to consider how a diagnosis of dementia affected people's planning for self-funded social care. The expectation was that the increased chances of needing care would motivate people to plan for the costs of care. The findings show that, in this sample, people with dementia and their carers recognised the progressive nature of dementia and its potential impact on future care needs. They also had preferences about their future, in particular about living arrangements. However, despite having concerns about the financial impact and long-term affordability of self-funded care, people did not routinely take actions to ensure their care and accommodation preferences could be realised. Instead, they hoped that they would not need care and so did not engage with planning to pay for it. A common theme linking the reasons for people not actively planning was uncertainty. Uncertainty is different from risk. Risks are known and can be planned for. Uncertainty is about the unknown. Our expectation was that a diagnosis of dementia, and thus a high likelihood of eventually needing care, would provide people with a degree of certainty on which they could base their planning for selffunded care. People with dementia and their carers felt almost universally that the future was uncertain, confirming recent findings by Campbell et al. . That is not to say that they failed to understand or accept that needs would increase , but they felt that uncertainty about the extent, timing and financial impact of care needs outweighed the certainty of declining independence brought about by the diagnosis. Despite evident worries about the affordability of care, people felt that their futures, or those of the people living with dementia that they cared for, were so uncertain that they typically focused on the present. It is possible that the unpleasant prospect of cognitive and physical decline that would precipitate a need for care also led to participants emphasising their present abilities and the uncertainty of the future. This chimes with findings from earlier studies that people, with or without dementia, live for the present and avoid thinking about a future that is both uncertain and unappealing . The findings also confirmed research that people are uncertain about their skills and knowledge for making appropriate decisions or seeking relevant advice ), and this uncertainty can lead to hesitancy. The diagnosis of dementia and its follow-up presents a possibility for professionals to engage with family uncertainty and help move from inaction to action, but such opportunities are seldom offered with no clear ownership of this support role . A second theme was timing, which was evident in a number of ways. People felt that the effort of planning now would outweigh any future expected benefit of decisions about paying for care and so they delayed decisions. This perception is also linked to the uncertainty discussed above; spending time and energy planning for something that may not happen can be seen as fruitless. It may also limit people's future options by closing certain avenues. For example, people may be concerned that once financial decisions have been made they cannot be reversed. Lemos Dekker and Bolt discuss this in relation to advance care planning; they call it a paradox of controltaking control now by putting in place plans for the future means losing control over the future. The question is whether money is different from care. A decision not to plan now for future care does not necessarily rule out any options; if additional or a different form of care is needed, decisions can be made later. But as personal finances are limited, a decision not to plan now for funding care in the future means that those resources may be spent on other things and so no longer be available for funding care. In the extreme, spending money on care in the present without considering the future could result in the depletion of resources and therefore loss of control over future care and funding decisions. However, despite concerns about expected future benefits, people in this sample talked about how their previous experiences of paying for care affected their current decisions. These experiences appeared to make people think differently about the impacts of not acting, even though the future was still seen as uncertain. For example, the people in our sample who had, or knew of others who had, experienced what they considered substantial care costs in the past felt prompted to make decisions to avoid those situations themselves. In effect, these experiences tipped the balance in favour of acting. This is in contrast to Kermel Schiffman and Werner's finding that carers chose not to make advance care plans for themselves even after negative experiences of making decisions for relatives without an advance care plan. The difference may be due to finances and people's fear of 'losing' their savings. There is a literature about anticipated regret that sheds light on this. Anticipated regret is a negative feeling that people have at the time of making a decision if they think they may regret that decision in the future . Many care-related decisions are difficult and people feel or anticipate feeling regret; housing decisions and location of care are examples . Decisions, as discussed above, may involve doing something or doing nothing. Both can induce anticipated regret. Anticipated regret from doing something can discourage behaviour as people fear the consequences of their decision. Our findings support this; people were anticipating making decisions that may need to be changed or would not be relevant, and so may at best result in wasted effort and at worst be costly and/or shoehorn people into paths they could not change and may regret. Brewer et al. , in their meta-analysis of anticipated regret and health behaviour, found anticipated inaction regret was felt more strongly than action regret. In other words, people felt more responsible for inaction than action. The authors explained inaction as defying medical authority , leaving the decision-maker open to self-blame. But for self-funded social care there is often no authority advising what course of action to take. The exception would be people who had a needs assessment or guidance on appropriate care and support; this is rare for self-funders . It follows in this context then that inaction becomes the most blameless thing to do. Finally, timing was important because people with dementia expressed a preference to manage without formal, paid-for care. They wished to maintain their current situations for as long as possible and some spoke about actively avoiding thinking about the future, as found by Hellström and Torres . Carers were typically not willing to impose self-funded care or changes in living arrangements on the person with dementia without that person's agreement, but deciding on the right time to obtain this agreement was not easy. Heaton et al. , in their secondary analysis of experiences of people with dementia and their carers, similarly concluded that it was perceived to be either too soon or too late to make changes. That is, either the person with dementia was not ready for change or their carer felt that their condition had progressed too far and that change would be too disruptive. --- Strengths and limitations This analysis is based on 39 in-depth interviews about the care, support and future plans for 27 people with dementia. Almost half the sample comprised people who were currently self-funding their social care, with the remainder divided equally between those who expected to pay for care in the future and those receiving local council-funded care. This reflected the focus of the research but does not necessarily reflect the wider population of people with dementia and their carers. The majority of interviews were with carers. There were only five initial and two follow-up interviews where the person with dementia was interviewed and a carer was not. Interviews with carers were longer and more detailed than interviews with people with dementia. Thus, the analysis is weighted towards the views of carers. It was not possible to discern any differences in how people with dementia and carers viewed or experienced planning for self-funded care from the interview data collected. While this is a limitation, the reality is that carers undertake much of the decision-making for or with the person they care for, especially as care needs progress. Where there were differences in experiences or the preferences expressed, these have been included. Furthermore, if care and funding decisions are not taken early, delayed instead until the person with dementia is no longer able to play a meaningful role, it is the carers who take the lead. Thus, understanding carers' views on planning is crucial. --- Implications for practice Our findings show that, in this sample, people with dementia and their carers largely do not wish to engage in thinking about a future of self-funded care or planning for that eventuality. Yet they do have views about how they want their future to be lived, in particular about where they wish to reside. Failing to make care and financial decisions while they are able may jeopardise these preferences. The way in which people spoke about decisions being unnecessary until things changed, or chose not to think beyond a point where funds for self-funding care were depleted, suggests a degree of naivety about the social care system and the complexity of making care and funding decisions. When people's money runs out or their care needs change, the process of re-arranging care takes time and involves a range of professionals as well as family; necessity and urgency may limit choices at this point. The task for those involved in the care of people with dementia in the heath and adult social care sectors is therefore to identify the points and places in the system where worries about future self-funded care can be addressed, and carers and the people they care for can be prompted and supported to act. There is a lack of programmed help and support, and little work to ensure that professionals feel confident and competent to undertake such sensitive and potentially distressing discussions. This leads to the perception that providing such support is somebody else's role. Opportunities could also be sought to help people understand the benefits of financial guidance or advice to maintain preferred self-funded care choices for as long as feasible. The effect of not helping people to plan is that carers inherit the decision-making role if the person with dementia becomes unable to participate, and they may have to make decisions in the absence of clear preferences from the person with dementia. Towsley et al. found many people wanted to be asked about advance care plans but there were missed opportunities because of a lack of formalised processes. The same appears to be true for self-funded social care. All people with potential care needs are entitled to an assessment by the adult social care section of their local council, but self-funders often do not approach their council for help, or report being signposted elsewhere when it becomes apparent they will be self-funders . Opportunities need to be created within the system to think about the self-funding journey for people with dementia and consider who is best placed to raise these issues, and when. Lessons about moving to more active planning might be learned from the palliative care context where, though a very different situation from self-funded social care for people with dementia, national policies aim to promote care from the point of diagnosis . A review of evidence on the impact of public messaging about palliative care, advance care planning and hospices found that public-facing messaging focused on death and dying, albeit 'a good death' . However, the review concluded that as people are generally reluctant to talk about death and dying, this messaging failed to encourage people to talk about, or actively plan for, these types of care, even though their awareness was high. People are similarly reluctant to talk about personal finances and may not want to think about having to depend upon care services in the future . In England, government plans for social care funding changes have received much public attention, meaning that people are aware of the possibility of depleting resources to pay for care. Changing the messaging from avoiding 'catastrophic costs' to the more positive prospect of managing funds to maintain preferred care options could be one way to encourage more active engagement. --- Competing interests. The authors declare no competing interests. Ethical standards. Ethical approval for the DETERMIND programme was obtained by the HRA Brighton and Sussex Research Ethics Committee .

This paper considers how a diagnosis of dementia affects people's planning for future social care needs and associated costs. It addresses the gap in knowledge about how people recently diagnosed with dementia, and their family carers, engage with planning for social care needs that are uncertain in timing and scale. The paper also considers people's attitudes to planning for care that they may need to pay for privately, and what facilitates or hinders acting on such plans. We conducted and undertook thematic qualitative analysis of 39 in-depth interviews with 27 people newly diagnosed with dementia and/or their carers over a twoyear period. Topics included current care and support, planning and co-ordinating care, paying for care, and expectations and planning for the future. The research took place in England. Our findings indicate that whilst people recognised they would have future care needs, with associated financial implications, this knowledge did not necessarily translate into actively planning for care or its cost. A key reason that recognition did not translate into action was uncertainty, manifested in three areas: the timescales and trajectory of their dementia and thus need for care; the potential for care needs to change and so negate care planning efforts; and uncertainty over their own capabilities to plan for and access paidfor care, given the perceived complexity of social care and associated financial arrangements. The paper discusses how anticipated regret may affect decision-making and contributes to debates about appropriate professional support for older self-funders with dementia. It suggests the task for those involved in the care of people with dementia is to identify the points and places in the care system where worries about future self-funded care can be addressed, and carers and the people they care for can be prompted and supported to act.

INTRODUCTION Maps, diagrams, illustrations, and other visual materials have long been part of cultural institutions. In fact, much of the work of cultural heritage in the past decade has gone into digitizing, preserving, and liberating these materials for use by the public. So too have academic disciplines relied on visual materials to document, defend, and disseminate their work. One need only think of the vast influence of weather maps for bringing meteorology into public awareness, or the value of photographs, illustrations, and moving images for creating a more public history of labor movements, human rights struggles, and political resistancesespecially ones that challenge established and official narratives of power. In the past several years, these visual materials have been increasingly centered on quantitative data, with sensors, geotags, social networks, and "big data" now occupying the forefronts of research and public engagement, in tandem with the massive digitization of print documents. Birth certificates and census records are, in one sense, textual documents. Their characters may be decoded and their contents, transformed into large datasets of demographic information; even handwritten records may now be automatically minded for data. But at the same time, these records are also visual materials, whose structural layouts and aesthetic conventions allow for such datamining to take place. There is a field for "given name" or "race" or more administrative metadata, such as record number or preparer. So-called "born digital" documents are even richer in quantitative information. Many photos, tweets, and posts now carry embedded geospatial data, and the platforms that host them capture relationships between people and groups, forming large-scale social networks, the documentation of which is unprecedented in human history. With this use of quantitative data comes the need for more sophisticated and adequate visual representations. In many of these cases, one simply cannot process such high-volume longitudinal data in a textual form. Attempting to do so would exhaust cognitive resources of working memory and attention long before detailed relationships and patterns could be extracted. Think of the difficulty of understanding even one major artist's trajectory as understood through a collection of a few hundred works. The art community may spend years, even decades attempting to construct such a narrative, let alone situate that narrative within the context of other artists and thousands of their works. And all this for only one medium! There are countless writings, sounds, and other information that could be brought to bear on the problem, many of them in digital form through "linked data" or the semantic web. Though the metadata standards and technologies for implementing them may still be years away, such possibilities are on the horizon, and there are already more specialized topics for which curated, linked data exists. The point of this thought experiment is not to overwhelm the tasks of interpretation, knowledge creation, and aesthetic enjoyment; it is simply to bring home the magnitude of information that exists in digital form at presentand the inadequacy of many existing interfaces for capturing that complexity. The field of information visualization can make a helpful intervention here. Infovis, broadly defined, sits at the center of cognitive science, computer visualization, and data analysis. According to Ware , the term 'visualization' is understood as "a graphical representation of data or concepts. It attempts to harness the powers of human cognition for the task of comprehending information, especially largescale data. Infovis allows viewers to browse through such datasets, noting top-level patterns and trends and often drilling down into more detailed information. Lin identifies five conditions in which browsing techniques are especially useful: • when there is a good underlying structure so that items close to one another can be inferred to be similar, • when users are unfamiliar with a collection's contents, • when users have limited understanding of how a system is organized and prefer a less cognitively loaded method of exploration, • when users have difficulty verbalizing the underlying information need, and • when information is easier to recognize than describe. All of these have wide application to the visual materials found in cultural institutions and academic settings, and the last two conditions in particular are especially relevant for quantitative data. The remainder of this paper discusses five ways in which infovis can enrich the visual culture of libraries, museums, and the academy: adding context through linked data, providing a macroscopic perspective. extending working memory and amplifying cognition. reducing biases, and facilitating more ethical and inclusive representations. Each section further introduces infovis and provides an example in which infovis is capable of enriching cultural information. --- LINKED DATA While the major uses of infovis are analytic, Pousman, Stasko and Mateas identify "casual" uses of information visualization, which include ambient infovis, social infovis, and artistic infovis. These uses engage with a wide spectrum of users including novices; are "repeatable , or contemplative ;" and are personally important or relevant to the use. Still, casual uses of infovis deliver insight about information, albeit non-analytic insight. Casual infovis may be especially well suited for creating interactive displays that draw in linked data to provide participants with richer, contextualized experiences. A key, macroscopic component to both of tees projects is their focus on high-level trends, structures, and patterns, rather than the individuals that compose and exist within those larger elements. Such visualization is no substitute for detailed analysis but rather an alternative method for understanding the phenomena at hand. The thousands of individuals and hundreds of thousands of connections between them could not be apprehended in textual form, yet visualization renders them quite saliently at a glance. --- EXTENDING MEMORY AND AMPLIFYING COGNITION As previously noted, infovis aids human understanding of complex datasets that cannot always be comprehended in textual form. This function is facilitated by the cognitive science foundations of infovis, which attempt to harness quick perceptual systems for the purpose of processing information. Card, Mackinlay and Shneiderman even define 'visualization' as "the use of computer-supported, interactive visual representations of data to amplify cognition." In discussing this definition, they list a number of ways in which visualizations can accomplish this, including increasing memory and processing resources available, reducing search for information, enhancing the recognition of patterns, enabling perceptual inference operations, using perceptual attention mechanisms for monitoring, and encoding information in a manipulable medium. According to Larkin and Simon , many of these benefits are achieved by substituting rapid perceptual inferences for more difficult logical ones. This substation is made possible by preventive processing, low-level tasks in the human visual system that occur in less than 200-250 milliseconds from the time an observer is exposed to a visual stimulus. Healey summarizes a range of psychology experiments that have used preattentive visual features to perform the following preattentive tasks: • target detection: users rapidly and accurately detect the presence or absence of a "target" element with a unique visual feature within a field of distractor elements, • boundary detection: users rapidly and accurately detect a texture boundary between two groups of elements, where all of the elements in each group have a common visual property, • region tracking: users track one or more elements with a unique visual feature as they move in time and space, and • counting and estimation: users count or estimate the number of elements with a unique visual feature. Though all of these are relevant for identifying general trends, patterns, outliers, and differences in visual displays, they are particular well-suited for quantitive information, which relies on differences in magnitude between values. An added bonus of preattentive processing in visualizations is the ability of many viewers to grasp large, complex datasets for the first time. As Plaisant --- BIAS REDUCTION The problem of bias has long been discussed in reference to acts of collection and curating, especially where cultural materials are concerned. Whether this problem is as well recognized with quantitative data is less certain. However neutral or objective a dataset or collection purports to be, there may be certain residual biases in measurement design, modeling techniques, or background assumptions about the phenomena observed. Cathy Davidson puts the point more strongly in saying, "Data transform theory; theory, stated or assumed, transforms data into interpretation. As any student of Foucault would insist, data collec-tion is really data selection. Which archives should we preserve? Choices based on a com-plex ideational architecture of canonical, institutional, and personal preferences are constantly being made." Infovis, rather than ameliorating this problem, brings it to the fore in visual representations. If large portions of continuous data are missing or a significant number of outliers present, such omissions or deviations will be visible in faithful representations. As Huff pointed out long ago, it is always possible to lie with statistics, and so, too, is it possible to lie with the datasets that form the basis of visualizations. In this respect, a more robust "ethics of visualization" is needed. At present, it is worth noting that the shift toward quantitative data provides a level of empirical verifiability that is not found in many nonquantitative forms of visualization. This shift provides any wronged parties a framework in which to question inferences and conclusions, seek redress, and present counter-narratives to restore balance-not unlike cases of human rights violations, though of significantly less magnitude. In addition to the injunction, "When counting, count everything ," an ethics of visualization would also likely include the rule, "Visualize uncertainties as well as certainties." Clues to facilitating this latter task, are found in a study by Skeels, et al. , which examined uncertainty in 18 different subject domains and developed five cross-domain categories for understanding uncertainty: measurement, completeness, inference, credibility, and disagreement. Though visual techniques may not be able to address all types or degrees of uncertainty, they can represent many of them more fully than statistical measures , helping to reduce the impression that findings are determinate or at least more certain than they are. --- MORE ETHICAL AND INCLUSIVE REPRESENTATIONS The empirical basis of infovis data may be able to do more than simply reduce harm through bias, error, and false completeness; it may also be able to produce visualizations that are more ethical in the sense that they are more inclusive of various groups, especially those that go unrepresented or underrepresented in many cases. A prominent example of this use of visualization is Invisible Australians , which documents Indigenous Australians and thousands of non-Europeans, including Chinese, Japanese, Indians, Afghans, Syrians and Malays, who faced discriminatory laws and policies for not being white. The site draws together government records documenting these people, and attempts to "link together their lives." While the site currently focuses on more qualitative aspects of these individuals, the quantitative infovis possibilities abound, from frequency charts and line graphs of their history, to geospatial mapping and network graphs making visible their activities and connections. Another example is the Transborder Immigrant Tool, a digital art project by Micha Cardenas and Jason Najarro at the University of California San Diego, which uses cracked Nextel cell phones to track immigrant's geolocations across the Mexico/U.S. Border. In addition to allowing would-be illegal immigrants access to map information, the application's creators hope it will "add an intelligent agent algorithm that would parse out the best routes and trails on that day and hour for immigrants to cross this vertiginous landscape as safely as possible." --- CONCLUSION Though academics and cultural institutions are faced with a deluge of digital objects information, the process of presenting such materials is greatly facilitated by information visualization, particular in the case of quantitative data. Infovis holds vast potential for providing context, insight, and perspective of large-scale datasets, and the empirical foundations of such datasets support visualizations that reduce bias and represent individuals, groups, and events more fully. Though significant work remains in developing and preserving such visualizations, the interdisciplinary foundations of the field provide robust ground for the task of quantifying-and visualizing-culture.

Maps, diagrams, illustrations, and other visual materials have long been part of cultural institutions, as well as the academic disciplines of the arts, sciences, and humanities. In the past several years, these visual materials have been increasingly centred on quantitative data, with sensors, geotags, social networks, and "big data" now occupying the forefronts of research and public engagement. With this use of quantitative data comes the need for more sophisticated and adequate visual representations, particularly through the field of information visualization (i.e., infovis). In this paper, I explore five ways in which infovis can enrich the visual culture of libraries, museums, and the academy: (1) digital, interactive visualizations can take advantage of linked data to provide participants with richer, contextualized experiences; (2) high-volume, longitudinal datasets can be seen from a macroscopic perspective, in which patterns, processes, and systemslevel phenomena all become visible; (3) the cognitive science foundations of infovis help produce designs that extend working memory and amplify cognition, allowing many viewers to grasp large, complex data for the first time; (4) the empirical foundations of quantitative data collection help to reduce biases in representing events; and (5) this empirical validity helps to produce visualizations that are more ethical in the sense that they are more inclusive of various groups and disinterested on the whole-the victors can still write history, but only insofar as they can measure it (and cannot avoid all measurements of it).

Introduction Several investigations have studied student conceptions about science, the work of scientists, and what type of person does science. In the pioneering study developed by Mead and Métraux , a questionnaire was applied to 3500 students from 145 secondary schools in the United States of America to characterize their image of scientists. Although the results indicated that students perceived science positively, scientists were seen as boring people who neglect their families and have "no social life, no other intellectual interests, no hobbies or relaxations" . Other stereotyped images of scientists emerged, such as that of an old or middle-aged man, wearing a lab coat and glasses, who works in the laboratory carrying out experiments. These results were corroborated by other studies carried out between the 1950s and 1980s . Later, Chambers developed the Draw a Scientist Test , where students are asked to draw a scientist and elaborate a short explanation. He used the DAST with 4807 children, from preschool to the 5th grade. Chambers analyzed the results based on the presence of seven indicators of the "standard image" of a scientist: laboratory coat; glasses; facial hair; symbols of research ; symbols of knowledge ; symbols of technology; and relevant captions . Alternative images were also detected, with scientists portrayed as magical or fictional characters, such as Frankenstein. To facilitate the interpretation of drawings Finson et al. created the Draw a Scientist Test Checklist , adding eight new stereotyped indicators: male gender; Caucasian; indications of danger; light bulbs; mythical stereotypes; indications of secrecy; scientist doing work indoors; and middle age or old scientist. Other data collection methods have been developed, such as questionnaires with multiple-choice items, open-answer questionnaires, interviews, as well as the analysis and discussion of stories written by students. However, DAST is the most widely used instrument to investigate the image students have of scientists and their work, especially with children of young age with underdeveloped written skills, having been applied in many different countries . While stereotypes regarding scientists persist, evidence suggests that how children view scientists and their work is changing . For example, the metaanalysis performed by Miller et al. demonstrated that, over the last 50 years, the likelihood of children representing female scientists has increased. This may reflect the increase of female research scientists in Western countries. Studies also reveal a decrease in the frequency of mythical stereotypes, light bulbs, as well as indicators of danger and secrecy, suggesting that these indicators no longer characterize the stereotype of the modern scientist . In addition, children seem to more frequently draw scientists that are young, casually dressed, and without facial hair or glasses . The influence of different variables on the appearance of stereotypes in the DAST has been analyzed over the last few decades. Several studies suggest that the children's gender influences the stereotypes in the drawings. First, male children tend to draw more stereotyped elements than female children, particularly in Western countries . Furthermore, boys more often portray scientists with technology/science-related products, indicators of danger and mythical stereotypes, while girls portray scientists with symbols of knowledge . Although male figures predominate in drawings by both male and female students, differences are detected: while boys tend to draw, almost exclusively, male scientists, girls draw female scientists more frequently . Finally, there also seem to be differences regarding the environment where scientists are represented: boys more often represent the scientist working outdoors while girls place them working indoors . The influence of grade level on the development and/or reinforcement of children's stereotyped images of scientists has received less attention in the literature. Some studies have detected a positive correlation between the number of stereotypes and grade level , while others identified no differences or significant differences between only some grade levels . Bozzato et al. suggested that the relationship between grade level and the image of scientific researchers and their activity may be mediated by the type of science activities performed in the school, which varies each year according to the local curriculum. Cultural context also seems to influence children's perceptions of scientists . For example, compared to Western children, Turkish and Navajo children's drawings present less stereotyped images ; Taiwanese and Navajo children tend to portray more female scientists and more female scientists in outdoor settings . Moreover, students incorporate elements of their own culture when portraying scientists . Increasing our knowledge of how children see scientists is important, as it allows teachers and trainers to guide their intervention to reduce stereotyped ideas. The maintenance of stereotyped and inappropriate ideas of science and scientists is likely to lead children to lack interest in learning science and choosing a scientific career . For example, students who have a negative image of scientists are less likely to find science subjects interesting or a future career option to pursue in the future. Furthermore, more realistic conceptions of scientists are needed to understand the nature of science. In Portugal, there was some research in this area, particularly with children in the first years of schooling . In a recent study using drawings about STEM professionals, students revealed a set of stereotyped ideas about the appearance and work of these professionals, including scientists . The study highlighted the need to change teaching practices to improve student views of these professionals. The study assessed differences between male and female students but did not analyze possible differences according to grade level, a relevant aspect considering the atypical organization of the Portuguese education system in the first years of schooling. Contrary to many countries, the 1st cycle only covers 4 years in Portugal. In this first cycle, a single teacher is responsible for teaching all curricular areas. The Physical-Natural Sciences are taught together with History and Geography in the curricular area of Environmental Studies. The following cycle, the 2nd cycle, with only two years, is the first with a multi-teacher regime. For the first time, students have a subject -Natural Sciencesexclusively dedicated to the physical and natural sciences. The scarcity of data on the influence of grade level in the Portuguese context was one of the incentives for carrying out this study. This study aimed to analyze the images of scientists and their work drawn by 289 students from the 1st to the 5th grade, using DAST. For this purpose, the following research questions were defined: i) What are the students' conceptions about scientists and their work?; ii) Is there any relationship between the presence of stereotyped images about scientists and grade level?; iii) Is there any relationship between the presence of stereotyped images about scientists and the gender of students? --- Method Participants A convenient sample of 289 Portuguese students, between 6 and 12 years old participated in this study. All participants were enrolled in public schools in the Lisbon metropolitan area. Consent was obtained from the school headmasters and class teachers where the study was carried out. Moreover, all participating children and their families were informed about the objectives and nature of the research and their consent was obtained. One hundred and forty-four of these participants were male students and 145 were female . Fiftysix participants were attending the first grade, 59 the second grade, 45 the third grade, 55 the fourth grade and 74 the fifth grade. --- Data Collection A modified version of the DAST , created by Farland-Smith , was employed in the present study. Following the instructions on mDAST administration, instead of just asking students to draw a scientist, participants were asked to draw a scientist busy doing their work. This provides more detail about the task and requires the drawings to incorporate not only aspects of the scientist's appearance, but also the location and nature of the scientific activity . Children were also told to answer questions about themselves and the drawing . All data were collected between March and June 2021. --- Data Analysis The participants' drawings and responses to the open-ended questions were analyzed together, taking into consideration three different features: stereotypical indicators, specialized research fields, and scientists' activity. Regarding the first feature, 14 of the 15 DAST-C indicators were analyzed . As in other studies the indicator "Caucasian" was not considered, as some drawings were not performed with coloured pencils, making a rigorous analysis of the indicator unfeasible. In each drawing, and for each indicator, a score of 1 or 0 points was given, depending on its presence or absence in the drawing. After the analysis, three summary variables were created: the variable "DAST-C upper scale -standard image", corresponding to the sum of the scores in the first seven indicators of the DAST-C ; the variable "DAST-C lower scalealternative images", corresponding to the sum of the scores in the remaining indicators ; and, finally, the variable "DAST-C total score" corresponding to the sum of the scores in all 14 indicators analyzed. Higher scores indicate highly stereotyped images of scientists, while lower scores indicate less stereotyped representations. In addition to the DAST-C indicators, the presence of scientists with crazy hair was also analyzed. The area of specialization depicted in each drawing, as well as the type of activity performed by the scientist, was determined based on an adapted version of the coding scheme developed by Christidou et al. and by Fralick et al. , respectively. Initially, the authors jointly scored 20 drawings and established clear criteria for the analysis of each item. Then, each drawing was independently analyzed by both authors. Lastly, the results of each analysis were compared. Inter-rater agreement ranged from 86% to 100% for each category. When codes differed, researchers discussed until a consensus was reached. Data analysis was performed using SPSS Statistics® . Univariate and, then, bivariate descriptive statistics were performed to explore the relationship between the students' views about science and scientists and gender and grade level . To compare the scores obtained in the DAST-C between different grade levels, the one-way ANOVA was used, followed by multiple comparisons. To assess whether the distribution of scores obtained in the DAST-C varied according to the student's gender, the Mann-Whitney test was used. Finally, to examine potential differences between categorical variables, Pearson's chi-square and Fisher's exact test were used. Moreover, a cell-by-cell comparison of observed and estimated expected frequencies was used to understand the nature of the association. To identify those specific cells most contributing to the significance of the chi-square test, standardized residuals were calculated. When necessary, Cramer's V test was used to determine the strength of the relationship between the variables. The significance level of α=0.05 was used as a reference for all hypothesis testing. --- Results --- Stereotypical Indicators The first seven indicators of the DAST-C, relative to the standard image, had a mean score of 2.62 , while the remaining indicators had a mean score of 2.27 . The mean total score was 4.89 , indicating each drawing had, on average, almost five of the 14 indicators analyzed . --- Specialized Research Field The drawings represented different areas of expertise . A large group of drawings involved activities within the scope of STEM disciplines. Chemistry was the most frequently represented specialization , closely associated with the idea of mixing liquids . Biomedical researchers were present in 15.2% of the drawings. Although some students stated that these scientists were studying and trying to find a cure for diseases, in general, most of them made explicit references to the discovery of a cure for COVID-19 . Biology was the third most frequent area of expertise, present in 11.1% of the drawings, covering different disciplines, like zoology , as well as botany . Finally, while engineering was present in 5.2% of the drawings, areas such as physics, geology and mathematics were practically absent. In some cases, although the drawings included a volcano, they were coded as depicting chemistry, as the associated description underlined the chemical rather than geological elements, particularly the mixture of vinegar and sodium carbonate in a volcano experiment. In 17% of the drawings, no specialized research field could be determined. This was largely due to generic references to scientists doing experiments, without any further explanation. In 6.2% of the drawings, student descriptions indicated science fiction/magical activities . Finally, a minority of the drawings were coded as "omniscient" research, with references to elements of different disciplines, from biology, astronomy, and biomedical sciences. Some stereotypical indicatorssuch as lab coat =10.425; p=0.032), symbols of research =9.570; p=0.023), symbols of knowledge =11.545; p=0.020) and technology =21.231; p<0.001), male gender =11.175; p=0.023), indications of danger =22.524; p<0.001) and crazy hair =9.960; p=0.040)were not uniformly distributed across drawings depicting different STEM-related subjects . Chemists tended to be surrounded by indications of danger more frequently than expected ; engineers tended to be male and were more often surrounded by technology , although less surrounded by symbols of research and less likely to be wearing a lab coat and eyeglasses ; biomedical researchers tended to have less crazy hair ; and researchers of other STEM areas tended to be surrounded by symbols of knowledge more frequently . --- Action Developed by the Scientist About 30% of the students indicated that the scientist was doing experiments/experimenting . Students rarely described the experiment in detail, but when they did, the term experiment seemed to be used in a very vague way and not only for activities where scientists are controlling and manipulating variables. More technical actions, such as mixing liquids, producing solutions or tidying up laboratories, were mentioned by 29.1% of the students. In 17.3% of the drawings, students mentioned that the scientist was researching/discovering something, especially the solution for societal problems, like diseases. Although many drawings coded in this category also explicitly indicated products of the research/discovery process, like vaccines and medicines, the student descriptions alluded not only to the production of the product but also to the scientific knowledge necessary for its construction. However, in the drawings classified as designing/inventing products , the focus was merely on inventing technology, such as a computer or robot, and not scientific knowledge. Additionally, 8.3% of the drawings indicated other activities, mostly unrelated to scientific activity and in 6.2% of the drawings the activity could not be identified because the drawing was not clear enough and the written description didn´t mention any activity. Finally, observation was mentioned only by 3.8% of the students. --- Gender Differences --- Stereotypical Indicators The Mann-Whitney test was used to examine potential differences in DAST-C scores between male and female students. As shown in Table 1, there was no difference in the DAST-C upper scale, regarding the standard image, between boys and girls . However, the distributions of the DAST-C lower scale and DAST-C total scale differed significantly between the two groups. Drawings by boys were more likely to present alternative images , but there were no significant differences between genders in the use of standard stereotypes . According to table 2, there were significant associations between a student's gender and the presence of the following stereotyped indicators: male scientists = 110.114; p<0.001), elderly =8.247; p=0.004) and crazy hair =27.785; p<0.001). Boy students drew scientists that were old , male and had crazyhair more often than girls . --- Specialized Research Field and Action Developed by the Scientist There was not enough evidence to suggest an association between gender and the specialized research field or the scientist's actions . --- Grade Level Differences --- Stereotypical Indicators The analysis of variance showed that the mean scores for the DAST-C upper scale = 9.499; p<0.001) and DAST-C lower scale =2.883; p=0.039) were statistically different between grade levels. The results show that fifth-graders tend to draw more standard stereotyped indicators than 1st , 2nd and third-graders . Regarding alternative stereotyped images, significant differences were only found between two levels: fifth-graders produced significantly fewer alternative stereotyped elements than fourth-graders . However, results revealed no significant differences between grade levels in DAST-C total score. --- Figure 3. Means of DAST-C Subscales and Total Score by Grade Level There was a significant association between grade level and the presence of the following stereotyped indicators: lab coat =30.614; p<0.001), eyeglasses =14.430; p=0.006), symbols of knowledge =13.153; p=0.011), relevant captions =15.710; p=0.003), male scientist =11.126; p=0.025), indications of secrecy =17.645; p=0.001), indoor location =14.000; p=0.007) and crazy hair =10.575; p=0.032). Students enrolled in fifth-grade drew scientists wearing lab coats and glasses and surrounded by symbols of knowledge more often than expected, but drew male scientists less frequently . In turn, fourth-grade students drew male scientists and crazy hair more than expected. Furthermore, second and third-grade students depicted significantly fewer scientists with lab coats and working indoors , respectively. Finally, children enrolled in the first-grade drew relevant captions , symbols of knowledge and scientists with eyeglasses less frequently than expected . --- Specialized Research Field Statistically significant differences were found between grade level and research fields among STEM disciplines =29.538; p<0.001). As shown in Table 6, students in fifth grade drew more researchers working in STEM areas while first and fourth-grade students drew them less frequently than expected. In addition, the representation of chemists =25.366; p<0.001) and biomedical researchers =19.396; p<0.001) was not uniformly distributed across grade levels: chemical researchers were depicted more often by fourth-grade students and less often by fifth graders ; biomedical researchers were depicted more frequently by fifth-grade students and less among first and fourth-grade students . --- Action Developed by the Scientist As shown in Table 6, differences were found between grade level and the following scientist activities: researching/discovering =34.088; p<0.001) and no action/not determined =29.353; p<0.001). Scientists doing research/discovery were mentioned more often than expected by fifth-grade students but less by first and fourth-grade students . Drawings scored as no action/not determined were more frequent among first-grade students and less among fifth-grade students . --- Discussion In this section, we try to discuss and respond in a systematic way to the three research questions that guided the study. --- What are the students' conceptions about scientists and their work? The results indicate that the drawings of the Portuguese students participating in this study include, on average, approximately the same number of DAST-C stereotyped elements as those reported in investigations with American and Greek children , but more than in research with Italian students . The results also suggest that Portuguese students tend to report the same stereotyped images of scientists described in other countries . Typically, students illustrated male scientists working in closed environments, namely laboratories, surrounded by symbols of research, suggesting that these students rarely associate scientific research with fieldwork. In addition, the scientist usually wore a lab coat and glasses and had crazy hair. Although the male gender was still the dominant stereotype, about 40% of the drawings represented female scientists. This is in line with recent studies that suggest the male stereotype is eroding, possibly as a reflection of a greater representation of women in science . Finally, some stereotyped indicators, namely mythical stereotypes and indicators of secrecy, were rare in the sample analyzed. Therefore, the present study supports the idea that these indicators are becoming obsolete . Concerning the specialized research field, our results show a high awareness towards STEM disciplines; a predominance of chemistry among the science disciplines; and an increase of biomedicine compared to studies conducted before the COVID-19 pandemic . The former increase seems to reflect the context of the pandemic experienced during the DAST application. As expected, students incorporated references to health situations related to COVID-19. Notably, research fields related to the human and social sciences were absent and the environmental sciences had a residual appearance. This asymmetrical presence of scientific fields corroborates the suggestion made by Leavy and Hourigan regarding the "importance to maintain a balanced and more expansive view of the work of scientists" . Regarding the scientist's activity in the drawings, the results also denote the influence of the pandemic context. Like in the study conducted by Quílez-Cervero et al. and Leavy and Hourigan , students' descriptions incorporated references to activities like searching/discovering a vaccine against COVID-19. Although this context seems to have contributed to expanding the notion of a scientist's work, students' knowledge of scientific practices seems to be limited. Indeed, in-depth descriptions of the scientist's activity were the exception. Moreover, some descriptions seem to portray the activities conducted in the classroom, but not in the science community. Is there any relationship between the presence of stereotyped images about scientists and the gender of students? Results indicate differences according to the gender of the students. In general terms, drawings made by male students presented more alternative stereotyped indicators than those made by girls. This trend was also evident in a study carried out in the Portuguese context , as well as in other countries . In contrast to earlier findings , however, there were no differences between boys and girls regarding the environment where the scientist is working . These trends may result from the influence of different agents of socialization. Besides parents' and peers' influence, mass media also has an important role in shaping students' views of science . Moreover, several international studies have shown that students' conceptions are influenced by films, series, books, and magazines where a stereotypical image of scientists is conveyed and reinforced . However, the student's exposure to these different agents of socialization is not the same between gender, which can explain why boys have more stereotyped views of scientists than girls. Therefore, we suggest future research to understand how students' images are shaped, which sources of information are more relevant and contribute to more informed views among girls. --- Is there any relationship between the presence of stereotyped images about scientists and grade level? There were also differences among student grade levels. As in other investigations , an association was detected between the grade level and the appearance of stereotypes in the drawings. However, the association depended on the type of indicators: first, the number of standard stereotyped indicators increased as students advanced grade level; second, students in the fifth grade tended to represent fewer alternative indicators and greater diversity of research fields and scientific activities. The reduced number of stereotypical images of scientists among students in grades 1 and 2 may be due to the specific characteristics of the Portuguese educational curricula. In the first cycle, science is taught in Environmental Studies, which includes contents from the History of Portugal, Physical and Human Geography, and different fields within the Natural Sciences . In addition to the minimum hours of the Environmental Studies subject, only 3 hours per week, evidence indicates that teachers in the first years of schooling pay little attention to science compared to other subjects. This is especially relevant in the first two grades, where the main concern of many teachers is to focus on helping students develop their knowledge of reading, writing and math. So, although the Environmental Studies subject starts in grade 1, it is reasonable to think that only in grade 3 or 4 do students begin to confront representations of science more frequently. Moreover, introducing a Natural Sciences subject in the fifth grade promotes, or at least does not dilute, stereotypes already created about the image of scientists, such as wearing lab coats and eyeglasses and being surrounded by symbols of knowledge and relevant captions. However, the greater exposure to scientific activities within the scope of the Natural Sciences discipline, as well as the greater maturity of the students, contributes to reducing alternative images and broadening the STEM disciplines portrayed, as well as the type of scientific activities. --- Conclusion The present study sought to investigate Portuguese primary school students' images of scientists and their work. Portuguese students participating in this study tended to report the same stereotyped image of scientists described in other countries. Moreover, students' knowledge seems to be limited to a few fields of specialization and to be influenced by the pandemic context experienced during the DAST application. The results also showed differences according to the student's gender and grade level that may result, among other factors, from the influence of the atypical organization of the Portuguese education system in the first years of schooling. These findings suggest that teachers should promote a more realistic and humanized view of the scientist and scientific activity. Considering the evidence that many teachers share the same stereotype as children , one of the great challenges is to improve initial and continuous training of teachers. This training should not only demystify possible stereotypes the teachers themselves might have, but also raise awareness of the importance of working with students on both science content and the nature of scientific activity. Teacher training should also increase the confidence and autonomy of these professionals to plan and implement strategies that promote more informed views of the scientific enterprise among elementary students. Among the various possible strategies, we highlight the importance of promoting discussions about science and scientists, as well as the establishment of partnerships between schools and scientific institutions/ scientists. The establishment of interactions between scientists and students must, naturally, seek to challenge the most stereotyped elements of the scientist's image. For example, it will be important to establish contact with researchers who develop part of their work in the field, thus seeking to portray a more diversified image of the activities and environments of scientific work. This study also suggests the relevance of further studies, namely with a larger sample and one that is representative of the entire Portuguese territory. Furthermore, future research could analyze, in more detail, other factors that may affect the images that students have of scientists or the impact that interactions between scientists and students might have on their images of scientists. --- Author Information Catarina

Several empirical studies reveal that students are poorly informed, and often hold stereotyped views of science and scientists. The present study aimed to investigate the Portuguese elementary school students' images of scientists and their work and the influence of gender and grade level on the development of these images. Two hundred and eighty-nine elementary school students enrolled in grades 1-5 in urban public schools participated in the study. Students were asked to draw a scientist and to answer questions about the drawing. The data collected were analyzed, considering three different features: stereotypical indicators, specialized research fields, and scientists' activity. Several descriptive and bivariate analyses were performed. Portuguese students tended to report the same stereotyped image of scientists described in other countries, and students' knowledge seems to be limited to a few fields of specialization and influenced by the pandemic context experienced during the DAST application. Moreover, the results showed differences according to the student's gender and grade level that may result, among other factors, from the influence of the atypical organization of the Portuguese education system in the first years of schooling.

Introduction Digitalization and globalization of the job market are leading to changes in job roles and new demands on employment . At the same time, workers are increasingly faced with challenges of organizing care for their children and elderly relatives as societies age [1,2]. Particularly for parents an increased flexibility at the workplace and extended availability of institutional childcare provide opportunities to reconcile work and family roles. In Germany, for example, the reconciliation of work and family lives is supported by governmental structures, e.g., with a parental leave scheme for mothers and fathers that covers up to twelve months of paid parental leave for one parent, which can be extended by two months of parental leave for the partner [3]. Since 2013, children from one year of age are also legally entitled to institutional childcare [4]. Besides these positive developments, new conflicts arise as the boundaries between work and family become blurred and the demands of both areas of life overlap. Theoretically, such conflicts are anchored in role theory. They are defined as inter-role conflicts in which demands from both work and family roles are not or only partially compatible. The resulting conflicts can act in two directions: 'Work-to-family' conflicts arise when demands at work disrupt family life. 'Family-to-work' conflicts occur when demands in the family reach into the work sphere. Both directions of conflict are mutually dependent [5]. In the following introductory sections, we will refer to work-family conflict as the general variable of exposure when describing findings from previous work. Conflicts while reconciling work and family roles present themselves differently in the everyday lives of mothers and fathers: Although, in 2019, 77.5% of mothers in Germany between the ages of 15 and 64 were employed, more than two-thirds of them worked part-time only. For fathers, the employment rate was 85.7% in 2019, but less than one in ten of the actively employed fathers were part-time workers [6,7]. Similar to the employment rate, gender differences in paid parental leave also exist: In 2019, mothers planned to take an average of 11.7 months of paid parental leave, while fathers only intended to take 2.9 months on average [8]. Moreover, in 2019, only 34.3% of children younger than three years of age were in institutional care [9]. In summary, the political action to improve the reconciliation of work and family lives in Germany is limited and used to varying degrees by mothers and fathers. This might be one reason why about one third of parents in Germany report that their work frequently or permanently affects family life [3]. Additionally, nearly half of the employed women in Germany state that they were very often or often too exhausted after work to be able to take care of private or family affairs; while this affected only one-third of men [10]. In addition to these differences by gender, there are also differences within the groups of mothers and fathers [11]. For example, the maternal employment rate is particularly dependent on the education of mothers [12]. Accordingly, it can be assumed that WFC do not only occur among working mothers and fathers to varying degrees, but may also be influenced by social determinants such as education or household income. --- Work-Family Conflicts and Health Stress process theory assumes that stress is a causal antecedent of individual health and well-being [13,14]. It proclaims that stressors can result from various sources. One type of stressor stems from the reconciliation of work and family settings and is referred to as WFC. Empirical reviews have already shown that WTFC and FTWC are associated with general, mental, and physical health [15][16][17][18]. Studies on the longitudinal association of WFC and health are, however, rather scarce. The few existing publications show that WFC leads to poorer self-reported general and mental health over time [19][20][21][22][23][24]. However, none of the existing studies looked at the level of reported WFC across different points in time, leaving out the potential to examine cumulative effects. From stress process theory, it is assumed that experiencing WTFC at more points in time leads to worse health-related outcomes, compared to experiencing WTFC never or less often. In addition, the majority of the available evidence is based on data from the U.S. and Canada. Since the political and cultural backgrounds play an important role for understanding the association of WFC and health these results can only be transferred to the German context to a limited extent [15]. Here, we contribute to the existing research by using longitudinal data from Germany and, thus, adding to the few studies available [25][26][27]. --- The Role of Social Determinants According to stress process theory, larger structures of society shape how stress is experienced individually [14]. As the same stressor can have a different impact depending upon characteristics such as gender, mothers and fathers may perceive detrimental effects of WFC on their health to varying degrees since work and family roles are highly shaped by gender norms [28]. Prior research partly supports this association and shows that health burden caused by WFC differs between mothers and fathers, whereas mothers report stronger effects of WFC on e.g., physical health than fathers [16]. Other studies show no differences according to gender [29]. However, most of the other publications on WFC and health do not differentiate the results by gender [17,30,31]. Hence, the existing evidence does not permit a clear conclusion concerning differences between mothers and fathers with regard to the health effects of WFC [32]. One cause of the inconclusive results on gender differences can be a lack of differentiation within the groups of working mothers and fathers: reviews postulate that insufficient data is available to investigate the health effects of WFC, for example among single-parent families or parents living at risk of poverty [17,31]. In addition, only few other social determinants of health have been taken into account: One study showed that people with lower formal education were more affected by the health effects of WFC [19]. Another study from Japan presented that the association between WFC and self-reported general health was more evident among women with low household income, compared to women from higher-income groups. This interaction was not observed among men [32]. That differentiation in health research beyond pure stratification by gender categories can be of analytical importance has already been argued in various places [33,34]. Thus, we extend prior research as we present a differentiated view of the gender groups by adding the level of education to the longitudinal analyses. --- Contribution and Research Questions We contribute to the existing literature by combining population-level cohort data from Germany with a longitudinal analytical approach. Thus, we add to the limited number of longitudinal studies from Europe and Germany. We also present the first analysis looking at cumulative effects of WTFC on health. Furthermore, and also novel to the field, we employ an intersectional approach to identify subgroups among mothers and fathers by an intersection of gender and education. This allows us to further differentiate the subgroups of working mothers and fathers and thus contribute to disentangling the inconclusive evidence on gender differences presented in prior research. The following questions guided our research: Research question 1: To what extent are WTFC and self-reported general health associated? Are differences between working mothers and fathers observed? Research question 2: Does WTFC have an effect on self-reported general health over time? Is this different for working mothers and fathers? Research question 3: To what extent is the association of WTFC and self-reported general health moderated by education? Is moderation different for working mothers and fathers? --- Materials and Methods --- Data Data were drawn from the relationship and family panel "pairfam" , which collects data on partnership and family dynamics in Germany [35]. The longitudinal survey started in 2008 with randomly selected persons from the birth cohorts 1971-1973, 1981-1983, and 1991-1993. From these cohorts, stratified random samples of approximately 4000 interviews each were generated in wave 1 . The population consisted of all German-speaking persons living in private households in Germany. Personal interviews were conducted using the CAPI method and lasted about one hour on average. The study participants have been surveyed yearly since 2008. So far, data from wave 1 to wave 9 have been published. In addition to the interviewees, who are referred to as "anchor persons", their partners, parents, and children aged nine and over were also interviewed in each wave. Pairfam was approved by the ethics committee of the Faculty of Management, Economics, and Social Sciences of the University of Cologne. Further technical details on the collection of pairfam data are reported elsewhere [36]. For this study, all persons who completed wave 6 and wave 8 of the survey were included , as only waves 6 and 8 included data on WTFC. To limit the analysis to working parents, all persons who stated that they were inactive, in education, or without children in the household at either time were excluded . In addition, those persons were excluded for whom no data on self-reported general health, on WTFC, and on the selected control variables were available . The data for the remaining 1514 persons were checked for completeness, and no further exclusions had to be made. --- Dependent Variable Health was operationalized with self-reported general health at T1. This general health indicator has been proven to be a sufficient proxy measure for general, physical, and mental health [37]. All participants were asked the following question: "How would you describe your health status in the past four weeks in general?" The response was "bad", "not so good", "satisfactory", "good", and "very good". The answers were grouped into "very good/good" and "satisfying/not so good/bad". Dichotomization was implemented to provide results that are comparable to prior research and easy to interpret [20,32,38]. Categorizing the ordinal scale into a binary response does not have an impact on the estimated effects of covariates [39]. --- Independent Variable In the pairfam dataset, a total of eight items on WFC were collected, four of which referred to WTFC and four to FTWC, respectively [40]. The scale was adapted from Carlson and Grzywacz [41] and translated into German by Wolff and Höge [42]. The focus of the present analysis lies on the four items measuring WTFC. For FTWC not enough variation was observed in the respective waves, as only about 10 percent of men and women reported high FTWC across waves 6 and 8. Following the question "Now we would like to know how your personal life and your work influence one another. To what extent do the following statements apply to you?" answers were collected for the following four items: Because of my workload in my job, my personal life suffers. Even if I do something with friends, partners, or family, I must often think about work. After the stress of work, I find it difficult to relax at home and/or to enjoy my free time with others. My work prevents me from doing things with my friends, partner, and family more than I'd like. The response options were on a Likert scale from "not at all" to "absolutely" . A sum index was formed, with a minimum of 4 and a maximum of 20 points. Cronbach's alpha of this scale was 0.80 and 0.77 for mothers and 0.74 and 0.75 for fathers, indicating good internal reliability. The index was dichotomized with 11 and more points being interpreted as "high WTFC" and 4 to 10 points as "low WTFC". The cut point guarantees that participants have scored a 3 on the Likert scale in at least three items. To allow for longitudinal analyses, participants were divided into four groups based on the prevalence of WTFC at T0 and T1: Persons with low WTFC at both times , persons with high WTFC at both times , persons with high WTFC at T1 only , and persons with high WTFC at T0 only . From a theoretical point of view, the groupings assume that people with high WTFC at both T0 and T1 experienced increased exposure compared to persons who reported high WTFC only once or never. In addition, the time gap between exposure and outcome was taken into account by differentiating between exposure to high WTFC at T0 and at T1 only. Thus, the division of participants into these groups allowed for analysis not only of longitudinal effects of WTFC on health over time but also for cumulative effects of WTFC on health at T1. --- Control Variables Models were controlled for age at T0 and area of residence at T1. The area of residence was included dichotomously as the residential region in Germany with the values "West" and "East" . Models 1 to 5 are also controlled for self-reported general health at T1. Education and household income were integrated into the models as sociodemographic control variables. Education was coded dichotomously as "low and medium education" and "high education", with "high education" covering all tertiary educational qualifications. To categorize household net income, respondents were divided into three income groups of equal size. Dichotomization was achieved by combining the two low-and middle-income groups and contrasting them with the third of participants with the highest income. Family-related variables taken into account were the number of children under 18 years of age in the household , age of the youngest child in three age groups and marital status with the values "never married", "married/registered civil partnership" and "divorced". Furthermore, information on living with a partner in the household was included as well as the division of childcare tasks among couples. Three categories were formed for the latter variable: "anchor person is primarily responsible", "partner is primarily responsible" and "50% division of labor is carried out by both partners". Single parents were assigned to the category "anchor person is primarily responsible". As factors related to employment, the following variables were included: Employment status as "full-time", "part-time", and "self-employed", with less than 30 h worked per week being considered "part-time". Shift work was included as well as the self-assessed working time of the partner in the categories "full-time", "part-time", "self-employed", and "not employed". Unless otherwise specified, all variables have been included at T1. --- Statistical Analyses Point estimates with corresponding 95% confidence intervals show the between-groups association of WTFC and self-reported general health at T1 stratified by gender . In order to answer research question 2, a logistic regression with the four time-based values of WTFC as the independent variable was calculated. Odds ratios were estimated for self-reported general health at T1. The odds ratio indicates the factor by which the odds for health impairments among persons with high WTFC is elevated or reduced compared to persons with low WTFC at both times . Model 0 included age and area of residence as control variables. Model 1 was additionally controlled for health at T0. As for models 2, 3, and 4, the variables described in Section 2.2 were included stepwise in addition to the control variables from model 1: In model 2, the variables household income and education were added. Model 3 included family-related variables, i.e., the number of children under 18 in the household, age of the youngest child, information on the division of labor between partners for childcare, and marital status, and whether the respondent lives with a partner in the household. In model 4, work-related variables were integrated: employment status, shift work, and the employment status of partners. Model 5 included all the variables mentioned, excluding whether the respondent lives with a partner in the household, as this information was already included in the employment status variable of the partners. In a further step , stratification was carried out within the groups of mothers and fathers with high and low WTFC by highest educational attainment. This was done by including the interaction of WTFC and education and estimating predictive margins. Predictive margins are the probabilities for self-reported general health predicted in the controlled model for each subgroup . The models for predictive margins were controlled for self-reported general health at T0, age, and area of residence. To avoid statistical misinterpretations, no significance level was defined for the point estimators, but results were assessed by calculating the 95% CIs [43,44]. To test differences by gender, interaction terms were included in the regression models. Corresponding p-values from the Wald test are reported. All statistical analyses were performed with RStudio . --- Results --- Sample Description Table 1 describes the stratified sample for mothers and fathers according to high and low WTFC. Mothers and fathers with high WTFC reported slightly higher levels of education and a higher net household income compared to parents with low WTFC. Mothers with high WTFC also worked full-time more often, and shift work was more common among those with high WTFC. --- Work-to-Family Conflicts and Health at T1 In all, 32.7% of working mothers and 40.7% of working fathers from the pairfam panel reported high WTFC. Figure 1 shows that 48.7% of mothers with high WTFC reported satisfying-to-bad self-reported general health, compared to significantly fewer mothers with low WTFC . A significant difference was also shown within the group of fathers: 36.4% with high WTFC reported satisfying-to-bad self-reported general health in contrast to 21.2% of fathers with low WTFC. The interaction of WTFC and gender was not significant , indicating no systematic differences regarding the association of WTFC and self-reported general health between mothers and fathers. --- Work-to-Family Conflicts and Health over Time The analysis of WTFC over time at T0 and T1 is shown in Figure 2 . Compared to persons who reported low WTFC at both times , mothers with high conflicts at T0 and T1 as well as mothers who reported high conflicts at T1 only showed significantly poorer general health. This difference was not apparent in mothers who reported high WTFC at T0 only. A similar picture emerged for fathers: Statistically, however, the difference in self-reported general health compared to the reference group was only confirmed for those fathers who reported high WTFC at both points in time. Furthermore, the association of WTFC and health did not differ between mothers and fathers, as the interaction between WTFC and gender was not significant . . A significant difference was also shown within the group of fathers: 36.4% with high WTFC reported satisfying-to-bad self-reported general health in contrast to 21.2% of fathers with low WTFC. The interaction of WTFC and gender was not significant , indicating no systematic differences regarding the association of WTFC and self-reported general health between mothers and fathers. --- Work-To-Family Conflicts and Health over Time The analysis of WTFC over time at T0 and T1 is shown in Figure 2 . Compared to persons who reported low WTFC at both times , mothers with high conflicts at T0 and T1 as well as mothers who reported high conflicts at T1 only showed significantly poorer general health. This difference was not apparent in mothers who reported high WTFC at T0 only. A similar picture emerged for fathers: Statistically, however, the difference in self-reported general health compared to the reference group was only confirmed for those fathers who reported high WTFC at both points in time. Furthermore, the association of WTFC and health did not differ between mothers and fathers, as the interaction between WTFC and gender was not significant . These results were confirmed in multivariable analyses. Table 2 shows that in the crude model the odds of reporting satisfying-to-bad general health at T1 were more than threefold higher for mothers with high WTFC at times T0 and T1 . When including health at T0 in the model , the odds were slightly reduced but remained almost 2.8 times higher compared to the reference group and significant. Mothers who reported high WTFC at T1 only also showed a more than 2.4-fold higher odds of reporting poor health in model 1. On the other hand, no significant differences in health at T1 were shown when mothers reported high WTFC at T0 only. In models 2 to 4 socioeconomic , family-related , and work-related variables were added. In addition, a fully adjusted model was calculated . In all five models, the described associations between WTFC and health remained significant. Table 2. Results from the logistic regression with self-reported general health at T1 as the dependent and WTFC at T0 and T1 as the independent variable for mothers. These results were confirmed in multivariable analyses. Table 2 shows that in the crude model the odds of reporting satisfying-to-bad general health at T1 were more than threefold higher for mothers with high WTFC at times T0 and T1 . When including health at T0 in the model , the odds were slightly reduced but remained almost 2.8 times higher compared to the reference group and significant. Mothers who reported high WTFC at T1 only also showed a more than 2.4-fold higher odds of reporting poor health in model 1. On the other hand, no significant differences in health at T1 were shown when mothers reported high WTFC at T0 only. In models 2 to 4 socioeconomic , family-related , and work-related variables were added. In addition, a fully adjusted model was calculated . In all five models, the described associations between WTFC and health remained significant. Table 3 shows a similar picture for fathers: Here too, significant associations between WTFC and health were shown for the groups in which high WTFC occur at T0 and T1 or at T1 only. As for mothers, the variables included in the models did not fully explain the associations between WTFC and self-reported general health. Table 3. Results from the logistic regression with self-reported general health at T1 as the dependent and WTFC at T0 and T1 as the independent variable for fathers. --- WTFC Family Work Full --- WTFC T0:T1 --- Crude Model --- Health at T0 --- Socio-Demographics Family Characteristics --- Work Characteristics Full Model Interactions of gender and WTFC were calculated for all five models. Wald tests showed no significant interactions . This indicates that no differences between mothers and fathers in the associations of WTFC and health were present in the data. For fathers, on the other hand, the results appeared to be somewhat different. In the group of fathers who reported high WTFC at T0 only, fathers with a high education tended to show the same level of satisfying-to-bad health as those who had never reported high WTFC. In contrast, however, the interaction of WTFC, education, and gender was not statistically significant , i.e., no systematic differences in the association of education and WTFC between working mothers and fathers were detected. --- Discussion Our analyses are the first to show that parents with high WTFC living in Germany report significantly poorer self-reported general health than mothers and fathers with low WTFC. This confirms results from European and U.S.-American studies in which high WTFC was associated with poorer self-reported general health [16,38]. Considering WTFC as a source of stress, the results are consistent with stress process theory [13,14], which argues that stress is a significant predictor of individual health. From a longitudinal perspective, parents with high WTFC at T0 and T1 or at T1 only showed significantly poorer general health compared to parents who reported low WTFC at both points in time . This result partially confirms previous work by Leineweber et al. , who presented significant associations for WFC and self-reported general health for women and men over time. These, however, were to a large extent explained by the health status at T0 [20]. A publication looking at the association between WTFC and health in a fixed-effects model also found a strong association of WTFC and self-reported general health [45], supporting our finding of a negative association between WTFC and health over time. Future research, however, should aim at a deeper understanding of the etiology of health burdens that stem from WTFC. In our data, WTFC seems not to have a cumulative effect on self-reported general health. Hence, parents with high WTFC at both T0 and T1 did not report worse health than parents who reported high WTFC at one point in time only. The results also showed that the assessment of self-reported general health at T1 improved significantly when WTFC only occurred at T0. As far as we know, this is the first analysis indicating a rather short-termed effect of WTFC on health. However, further analyses should examine this result in detail and analyze more points in time. In our multivariate analyses, the association between WTFC and health was not explained by the inclusion of health at T0 or demographic, family, and work-related variables. This may suggest that the association of WTFC and health is independent of the social determinants included in the For fathers, on the other hand, the results appeared to be somewhat different. In the group of fathers who reported high WTFC at T0 only, fathers with a high education tended to show the same level of satisfying-to-bad health as those who had never reported high WTFC. In contrast, however, the interaction of WTFC, education, and gender was not statistically significant , i.e., no systematic differences in the association of education and WTFC between working mothers and fathers were detected. --- Discussion Our analyses are the first to show that parents with high WTFC living in Germany report significantly poorer self-reported general health than mothers and fathers with low WTFC. This confirms results from European and U.S.-American studies in which high WTFC was associated with poorer self-reported general health [16,38]. Considering WTFC as a source of stress, the results are consistent with stress process theory [13,14], which argues that stress is a significant predictor of individual health. From a longitudinal perspective, parents with high WTFC at T0 and T1 or at T1 only showed significantly poorer general health compared to parents who reported low WTFC at both points in time . This result partially confirms previous work by Leineweber et al. , who presented significant associations for WFC and self-reported general health for women and men over time. These, however, were to a large extent explained by the health status at T0 [20]. A publication looking at the association between WTFC and health in a fixed-effects model also found a strong association of WTFC and self-reported general health [45], supporting our finding of a negative association between WTFC and health over time. Future research, however, should aim at a deeper understanding of the etiology of health burdens that stem from WTFC. In our data, WTFC seems not to have a cumulative effect on self-reported general health. Hence, parents with high WTFC at both T0 and T1 did not report worse health than parents who reported high WTFC at one point in time only. The results also showed that the assessment of self-reported general health at T1 improved significantly when WTFC only occurred at T0. As far as we know, this is the first analysis indicating a rather short-termed effect of WTFC on health. However, further analyses should examine this result in detail and analyze more points in time. In our multivariate analyses, the association between WTFC and health was not explained by the inclusion of health at T0 or demographic, family, and work-related variables. This may suggest that the association of WTFC and health is independent of the social determinants included in the models, thus affecting mothers and fathers with diverse social backgrounds to a similar extent. The results also implicate no gender differences in direction and strength regarding the association of WTFC and health. This is in line with an internationally growing number of studies that do not show differences in health-related consequences of WTFC by gender [38]. On the other hand, this seems remarkable against the background of the different work-and family-related circumstances mothers and fathers are facing in Germany. We interpret that different role distributions and burdens of employment and family roles among mothers and fathers mean that differences may appear earlier with relation to the occurrence of WTFC than differences in health-related consequences. It is also conceivable that mothers and fathers react differently to WTFC: Mothers might, e.g., reduce their working time when WTFC arises, an aspect that could not be taken into account in the present analysis, partly due to the small number of cases. Future research should consider this aspect as well as its impact on the prevalence of WTFC. Adding another perspective, Kobayashi et al. claim that the existing instruments measuring WTFC do not equally apply to mothers and fathers, producing mixed results regarding gender differences in WTFC and health [32]. With regard to the interactions between WTFC and education, no significant result among mothers was found. This indicates that the effect of WTFC on health exists regardless of educational attainment. Within the group of fathers reporting high WTFC at T0 only, however, those with intermediate and lower educational levels may be more affected by health effects than fathers from the high educational group. We suspect that higher education is associated with higher financial and psychosocial resources that may buffer the health effects of WTFC. With great caution, we further derive that this buffer effect seems to be absent among mothers, suggesting that financial and psychosocial resources do not protect mothers from detrimental effects of WTFC on health. Overall, the interpretation of the predictive margins has to be carried out with care: Low case numbers and very large confidence intervals may lead to overlooking educational differences. Further research on the role of resources is urgently needed to deepen the understanding of these findings. --- Limitations Although the analyses of the association between WTFC and health over two points in time represent a special quality of the present work, it should be critically assessed that WTFC may not be reliably measured by a two-point assessment. Thus, the grouping of persons by exposure to high and low WTFC at both points in time are theoretical to a certain extent as it remains unclear, e.g., since when the conflicts existed and whether they persist between the measurements in the survey. In addition, the rather small number of cases of working mothers and fathers should be mentioned, which particularly affected parents with a high level of education. These led to very large confidence intervals and corresponding inaccuracy of the point estimators. Future studies can counter this by implementing measures for WTFC early on in longitudinal studies, when sample sizes are still large. Health was measured with a self-reported single-item question. Although this general health measure is considered to be a valid proxy for both physical and mental health [37], future research should study different health outcomes separately and in more detail. It would be interesting, for example, to distinguish whether there are greater effects of WFC on physical or mental health. Moreover, our finding on WTFC and health should be substantiated by including objective health measures, e.g., through physiological indicators. In addition, there may be an association of WTFC and health in the reverse causal direction , where poorer general, physical, and mental health leads to more WTFC [19][20][21][22]. The present sample from waves 6 and 8 of the pairfam data set might also be a very selective group due to drop-out from the study. Therefore the prevalences, as mentioned above, are not representative for the total population of working mothers and fathers in Germany. The present work also focused exclusively on WTFC. However, more research is needed regarding the health-related consequences of FTWC, particularly with a perspective on differences by gender. Furthermore, it should be noted that the scientific community is increasingly publishing work on the concepts of "work-family enrichment" and "work-life balance". As a continuation of the long research tradition on multiple roles and the perspective of the "role enrichment thesis", these show that for many working mothers and fathers the reconciliation of employment and family roles has positive effects on health [46][47][48][49]. --- Conclusions The relevance of this analysis should be emphasized despite the methodological limitations. Against the background of increasing international demands for intersectional perspectives in public health, the calculation of complex interactions in quantitative research allows readers to differentiate within the groups of women and men, thus identifying particular burdens and adapting prevention measures accordingly. In addition, strategies such as the one presented also allow for identifying groups that are less burdened due to personal and social resources, leading to starting points for resource-oriented health promotion. Future studies should therefore further investigate differences within the groups of working mothers and fathers. These can provide information on how individual social determinants, such as income and occupation, interact with gender. Furthermore, structural characteristics such as social deprivation of the area of residence should be included in order to investigate interactions of these with individual preconditions. In addition to the required differentiation of the groups, datasets should be available that allow calculations of intra-individual variation to investigate causality in the context of WTFC and health. For this purpose, longitudinal cohort studies with sufficiently large numbers of participants are required. In the development of measures to reduce WTFC between family and work, the results presented here can provide an initial indication that the level of education plays a role in the context of WTFC and health for fathers. Against this background, existing measures both at the political level and in occupational health management should not only be implemented and evaluated for working mothers but also for fathers.

The combination of work and family roles can lead to work-to-family conflict (WTFC), which may have consequences for the parents' health. We examined the association between WTFC and self-reported general health among working parents in Germany over time. Data were drawn from wave 6 (2013) and wave 8 (2015) of the German family and relationship panel. It included working persons living together with at least one child in the household (791 mothers and 723 fathers). Using logistic regressions, we estimated the longitudinal effects of WTFC in wave 6 and 8 on self-reported general health in wave 8. Moderating effects of education were also considered. The odds ratio for poor self-reported general health for mothers who developed WTFC in wave 8 compared to mothers who never reported conflicts was 2.4 (95% CI: 1.54-3.68). For fathers with newly emerged WTFC in wave 8, the odds ratio was 1.8 (95% CI: 1.03-3.04). Interactions of WTFC with low education showed no significant effects on self-reported general health, although tendencies show that fathers with lower education are more affected. It remains to be discussed how health-related consequences of WTFC can be reduced e.g., through workplace interventions and reconciliation policies.

Introduction The topic of self-identity has become a topic that has received great attention in psychology, especially related to discussions regarding the development of adolescents in preparing for adulthood . The image of self that was previously possessed by individuals, both from self-knowledge and from interactions with parents, becomes challenged or shaken by the existence of various alternative identities faced during adolescence . Adolescents who are able to achieve successful self-identity formation are associated with various positive psychological conditions, such as self-esteem , self-efficacy , social adjustment and academics , life satisfaction , and personality maturity . The development of self-identity is also an important part of the learning and education process . The implementation of identity development in educational practice is carried out in various forms, for example through developing identity as a learner Theoretically, there are many studies that attempt to explain self-identity , such as offering definitions of identity ), the content of identity , the process of identity formation , identity style , social identity , and identity function . Doeselaar et al. summarized the existence of several intrapersonal component similarities in various theories regarding self-identity, such as self-uniqueness, self-coherence, and self-sustainability. In addition, just as humans are inseparable from cultural influences , self-identity also has two other levels of analysis that are social in nature, namely the interactional and sociocultural domains . Doeselaar et al. states that the existence of various theories of self-identity also implies that the studies that have been carried out tend to be partial and there is a possibility that each researcher does not know the results of research between researchers, thus allowing for a reduction in the definition of self-identity constructs . "To what extent have self-identity theories explained the complexity of human self-identity? Is there a fundamental and comprehensive theory of self-identity?" are some follow-up questions related to the possibility of a partial self-identity study. To answer this question, an evaluation of the theories of self-identity needs to be done. One theory that can be used as an analytical framework for self-identity theories is the mental programming theory of Hofstede et al. . This theory was chosen because it explains that cultural processes can influence individual thoughts and actions in a comprehensive manner, including how individuals view themselves, through three factors, namely human nature, or the universal nature of all humans, culture, or influence from the social environment, such as the family environment, neighborhood environment, or other social environment; and personal , or unique traits that are owned by individuals and not shared by other people. Based on this framework, self-identity theories are only limited to explaining personal and cultural or social factors in the formation of self-identity, while universal factors are not included in it , so that the theory can be used to provide a broader perspective for the development of identity theory. Markus and Kitayama explain that the perspective of human nature influences self-conceptualization, including self-identity. The emphasis on discussing self-identity on personal traits tends to be influenced by the perspective that humans are independent and autonomous beings, who have unique internal attributes , and their behavior is determined by internal attributes only, which tend to be influenced by by Western culture. Meanwhile, self-identity as a social construct developed from the field of social psychology which discovered the influence of interactional processes on individuals . Personal identity 2 BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct and social identity are important findings in constructing self-identity to optimize the development of self-identity . Nonetheless, self-identity that only emphasizes personal and social identity or one of them can also raise problems, for example stereotype problems between certain social groups or excessive feelings of uniqueness . In addition, various problems due to partial identity are also found in cases of development, for example the development of self-identity in adolescents. Fuadi et al. found that the emphasis on social identity in the 'klithih' group is a strong determining factor in this form of juvenile delinquency. In addition to these examples, a psychological experiment from Zimbardo also shows the negative impact of fabrication on social identity which leads to brutal acts against prisoners. These problems provide reinforcement regarding the absence of discussion of more basic self-identity. The existence of human nature has been mentioned by the United Nations through the Universal Declaration of Human Rights Article 1 which states that every human being has certain basic characteristics that are universal. This basic nature is inherent in and also influences the individual's perspective on himself and others. The existence of discussions about this has also become an important issue in the history of human thought, such as by philosophers, religionists, and scientists, including in the scientific field of psychology . Watanabe states that there are several basic concepts regarding human nature in psychology, such as those based on psychoanalytic, behavioral, and humanistic perspectives. Nevertheless, human nature is not specifically and explicitly discussed in the topic of self-identity, which is often narrowed down in the context of ethnicity , nor is it reflected as the understanding behind the theory of self-identity . Based on these conditions, this study aims to answer the research question in the form of, "What is the essential psychological construct of self-identity that is fundamental?". This study seeks to find common threads from various theories of self-identity to be integrated into a more comprehensive and coherent model, and tries to consider the existence of human nature factors in human self-identity. The existence of a more comprehensive theory of self-identity can then be used as a theoretical basis for interventions in the development of self-identity, for example regarding the problem of the low number of adolescents who have succeeded in forming self-identity and the factors that influence it . --- Method This study uses a qualitative approach using meta-ethnography in order to be able to carry out a synthesis analysis to find the common threads and essence of self-identity theory . Operationally, this study deconstructs psychological constructs to be reconstructed as done by Riyono . Data source. The data in this study are in the form of research journals and books related to the BULETIN PSIKOLOGI Data analysis and interpretation. Noblit and Hare formulated seven main stages in the meta-ethnographic method, namely: identifying "intellectual interest" or certain concepts to be studied, namely identity, determining matters relevant to intellectual interest, examining the texts of research results, determining the interrelationships between research results, translating back and forth from one research result to another, synthesizing the results of the mutual translation, and formulate the results of the synthesis. Construct validity is carried out through sequential and back and forth analysis and triangulation of data on the works of the same figures, internal validity is developed through coherent and logical explanations, logical validity is developed from re-confirmation of self-identity theories, and interpretation validity is developed using consensual expert validity. --- Result Erikson and Marcia as originators of the basic theory of self-identity --- Erik H. Erikson Discussion of self-identity is a complicated and complex discussion because it needs to touch on the essence or core of the individual as well as his communal culture and is related to the discussion of self, both in the form of self-concept, self-system, and self-experience ). The complexity of discussions related to self-identity often creates a tendency to interpret it broadly or narrowly, including by reducing meaning due to practical purposes in the form of measurement . Erikson's theory about self-identity is based on the perspective of humans as 'pseudospecies' or humans do not have a certain universal similarity to be able to categorize them in one species, but also not as living beings of different species. At first, Erikson mentioned self-identity with the term 'ego identity' because it is closely related to ego function, but then it was revised to 'identity' to accommodate other discourses related to the comparison between ego and self. Self-identity processes an individual's image of himself , while self is a reflection of what 'I' witnesses to himself in various forms , which are synthesized into a composite self-image . A healthy self-image is a cohenerent one. It is integrated with each other and forms a complete picture of oneself, so that individuals are able to recognize themselves, their position, nature, and purpose in life, in the midst of various self-experiences in various situations . Erikson ) describes self-identity as the result of self-definition that is coherent and consistent, thus giving rise to an awareness of self-sameness that continues between different situations and times to be a complete self-definition and affirmed by the surrounding social environment. 'Coherence' includes all the results of identification that occur in individuals since childhood. Meanwhile, 'similarity' is not only to oneself, but also certain similarities to groups, for example similarities in race, intelligence, values, culture, physical form, language, and various other characteristics. Self-identity emphasizes three meanings, namely uniqueness, continuity of experience, and similarity with the group. Self-identity as self-uniqueness requires a long process and efforts to achieve and maintain the continuity of self-uniqueness in different situations and times . Every individual has two types of self-identity, namely personal identity and cultural or group identity. Personal identity is a unique individual characteristic of an individual and becomes a differentiator between individuals, for example physical condition, personality and intellectual ability. Meanwhile, cultural or group identity is the similarity and adjustment of individuals to certain cultures or groups, for example ethnicity and race . There are several principles emphasized in the process of forming self-identity from Erikson ), namely the ego as an inner agency that synthesizes self-identity, the formation of self-identity based on the principle of sociogenetic evolution, a strong self-identity is the unique one, and the development of self-identity is psychosocial. The formation of identity is determined by the quality of the ego in carrying out the functions of selection, integration, synthesis, up to the reconstruction of existing identification, both existing and newly existing, into a new 'unique' identification. The identification process takes place from the time an individual is born and interacts with others, until it becomes diverse as the individual experiences and interactions with his social environment increase . The environment and social institutions play a role in the development of individual self-identity as a provider of means to learn and try various roles and positions, or what is called a moratorium. The moratorium period is needed for adolescents because it provides an opportunity to BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct find the most appropriate and specific position for them ). The many choices of roles allow adolescents to be unique, but often also cause problems in the form of confusion due to role uncertainty . Success in undergoing the moratorium is determined by the dynamics between fidelity and a sense of diversity so as not to experience confusion of values ), and is marked by a new identity configuration based on identifications that have been exist . The process of diffusion between self-identifications is a normal process, but under certain conditions it can take place abnormally or is called identity confusion which is characterized by discontinuities in the development of self-identity. Identity confusion can be followed by neurotic and psychotic disorders when they are severe . Some of the characteristics of identity confusion are feelings of self-alienation towards the nature of oneself and the social environment, as well as an inner vacuum, intolerance of differences, inability to commit to something and make decisions, moratorium extended, conflict in identity selection ). James E Marcia's explanation of self-identity was developed based on Erik H. Erikson's theory by focusing on the task of ego development . Nonetheless, Marcia narrowed her perspective on self-identity as a self-structure that organizes various components within, including drives, abilities, beliefs, and individual experiences, which are dynamic and can change gradually . Self-identity is also explained as an intrapsychic process in organizing and constructing self-identification, which is experienced by individuals with a certain style that can be observed by others. Marcia uses a status approach in self-identity theory , although Erikson disagrees with this approach . The development of a good self-identity is determined by ego strength and is characterized by self-coherence, unique feelings, not experiencing confusion in self-definition, and freedom from adaptation anxiety . The process of forming a good self-identity is the result of active construction, not just a gift, so that it involves a process of exploration, self-reflection, and integration between individual abilities and the roles provided by the environment . This process lasts a lifetime, but is more crucial in adolescence because of physical, psychological, and social changes ). Every teenager can show a certain style in the process or referred to as 'status', which is determined by the presence or absence of 'exploration' and 'commitment' components on a continuum . Exploration aims to determine choices that will be lived in adulthood, such as in the form of vocational, ideological, and interpersonal relationships, while commitment is to determine a choice from various alternative choices and direct individual behavior according to the choices that have been made. Exploration and commitment are at the cognitive and behavioral level . These two components must exist in two main issue areas faced by adolescents, namely occupational issues or work problems, and ideology or problems related to perspectives on life . Based on the presence or absence and high or low of these components in adolescents, --- BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct Marcia categorizes identity status into four groups, namely Identity Achievement, Foreclosure, Moratorium, and Identity Diffusion. Identity Achievement and Foreclosure have a high level of commitment, in which Identity Achievement has explored or experienced a crisis so that its identity is constructed, while Foreclosure has not experienced it and its identity is a gift. Meanwhile, Moratorium and Identity Diffusion both have low levels of commitment, but Moratorium shows concern and effort to increase its commitment, while Identity Diffusion ignores and shows no interest in increasing its commitment. In addition, Moratorium is also facing a crisis and is exploring, while Identity Diffusion may or may not experience a crisis. In an effort to increase the validity of the self-identity construct, found a link between identity status and various other psychological constructs, such as family characteristics, anxiety, cognitive abilities, conformity, locus of control, moral development, autonomy, authoritarianism, ego development, and self-esteem. Another Theorists --- Michael D. Berzonsky Differences in identity status according to Marcia are influenced by differences in the processing of self-relevant information based on a constructivism perspective or individuals who actively play a role in themselves and their lives . Self-identity is explained as a cognitive 'structure' or framework used in interpreting self-related information, solving problems, and making decisions, as well as a 'process' that regulates cognitive-social strategies in constructing, maintaining, and reconstructing self-identity . Self-identity is also called self-theory, which is a certain cognitive conceptual structure that is formed by individuals towards themselves, which consists of various constructs, assumptions, hypotheses, beliefs, schemes, and postulates related to oneself in interacting with the social environment ). Self theory is said to be effective when it can solve individual problems pragmatically because it cannot be ascertained whether it represents the real self . The optimal self-theory construction process is one that carries out cognitive processes in the form of assimilation and accommodation in a balanced way . The process of assimilation takes place when the information that comes becomes a positive feedback to the existing identity structure, whereas accommodation takes place when there is a negative feedback to the individual in adapting . Cognitive processes in self-construction theory are carried out by the brain automatically, which naturally has the ability to organize and synthesize various self-constructs into higher cognitive structures . --- Harold D. Grotevant Grotevant introduced a process model of identity exploration as a framework for understanding the process of self-identity. There are four themes in the framework, namely individual characteristics that influence the process, process context, process identity, and the interrelationships between process domains. Individual characteristics that influence the process of self-identity are personality factors and cognitive abilities . These individual characteristics interact with the social context, including BULETIN PSIKOLOGI 7 Fachrunisa & Riyono Human Nature in Self-Identity Construct the culture of society, family, peers, and the environment. The self-identity process then takes place involving six domains, namely orientation to engage in exploration, exploratory processes, affective outcomes, cognitive outcomes, identity consolidation, and identity evaluation. The exploration process is triggered by identity disruption when interacting with the social environment . Alan S. Waterman Waterman ) developed identity theory by adding a eudaimonistic philosophy through the construct of personal expressiveness, namely when individuals live and act in harmony with their daimon or 'true self'. Daimon is the potential possessed by all humans as a species at once and the unique potential that distinguishes between individuals. Daimon makes individual activities meaningful and directs individual life. Daimon is universal because it is owned by everyone, while expressions that show daimon or individual actions in realizing their potential can vary. The variety of expressions towards daimon shows that there is a certain psychological process that underlies the realization of daimon and influences the process of choosing in the formation of self-identity. A healthy self-identity is when the individual realizes the daimon within himself. --- Dan P. McAdams McAdams' explanation of narrative identity is based on the view that humans are whole. McAdams , McAdams andCox specifies the process of forming self-identity in adolescence, because adolescence is a period in which individuals begin to act as 'authors' of their life stories, which include themselves in the past, present, and future, and have reach a stage of cognitive development that supports the meaning of life experiences. Self-identity is referred to as 'narrative identity', namely self-identity as a life story of an individual which is an individual's construction of himself, in which the story is made based on selective reconstruction of past experiences and images of the future. This identity includes various 'selves' or 'identifications' that appear throughout an individual's life, and provide a coherent framework for interpreting various events in life . Individual life stories can develop dynamically, but still provide a feeling of unity for oneself, purpose in life, and meaning . McAdams view of self-concept is influenced by the views of William James, who explained self as a combination of 'I ' or self as a subject and 'about me ' or self as an object. The self as 'I' learns about self as 'about me' through self-perception. Self can also play a role in three forms, namely as an actor , or self who does something to interact and adapt to the social environment; as an agent , or self who has desires, plans, and tries to achieve something in his social environment; as well as being the author, or the self that determines the story of his life, regarding how he was in the past and what he wants to be in the future. --- Mental Programming Theory as An Analytical Framework Every human being has certain patterns of thinking, feeling, and acting. Hofstede et al. introduced a mental program construct to make it easier to understand human behavior patterns tendencies. These behavior patterns tend to be stable in various situations, although they are not 8 BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct completely predictable . There are three levels of mental programming based on Hofstede's level of uniqueness and programming process , namely: individual level or personality level, namely programming that is the least inherited between individuals, so it is very unique and distinguishes one person from another, for example the personality factor as a genetically inherited trait, which can also be learned from experience; collective or cultural level, namely programming that is shared with several people in a group and can be learned through social interaction, including attitudes and behavior in social interaction, language, and ethics, and is usually related to intergroup culture ; and universal or human nature level, namely programming that is owned by everyone, and is inherited through genetics that determines certain biological conditions and physiological processes, such as laughing, crying, aggressive behavior, or other behaviors that are also found in animals, and not studied. The Interrelationships Between Self-Identity Theories The theory of self-identity has developed since the 1950s until now, namely since Erik H. Erikson Erikson raised the discussion of self-identity using a psychoanalytic approach. Various figures then continued to discuss self-identity . Apart from these figures, there are also several other figures who have consistently conducted studies on self-identity . The forms of self-identity theory development vary, showing two patterns of development, namely extension or studies that complement the self-identity theory rather than reconceptualizing it, as well as expansion or studies that make Marcia's identity status theory a component of the discussion but the theories put forward tend to closer to Erikson's original ideas . Conceptualization of self-identity needs to consider the foundational ideas of Erikson and Marcia. Meanwhile, other theories have a position as a complement, organizer, as well as a critic who dialogues with the initial idea of self-identity. There are a number of similarities stemming from the similarity of the theoretical foundations for self-identity from Erikson and Marcia, but there are also several points of ideas that do not show coherence, so further discussion is needed in order to find more coherent and comprehensive ideas to understand self-identity. The similarities between self-identity theories include the meaning of identity as an individual's attempt to define himself into a definition that represents himself consistently and coherently across time; the process of forming self-identity lasts a lifetime, with the adolescent stage as a more crucial period; inter-theory of self-identity implies the existence of 'something' that actively processes, integrates, and synthesizes self-identity, and self-identity includes things that are 'personal' and 'social', both as levels of identity and factors influencing identity formation. The ideas that do not show suitability and coherence raise further questions, namely, there is an inconsistency in human nature, in the form of claims that humans do not have universal similarities but the discussion of the process of forming self-identity explains a condition of similarity which BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct everyone has, for example Erikson's idea that individuals do not have anything in common, but his explanation of the process of forming self-identities also implies that there are certain basic conditions that allow individuals to form their own identities, as well as the views of constructivists who explain that humans have the same potential to actively construct themselves; inconsistency regarding 'something' that plays a role in the synthesis of self-identity, which is referred to as ego by Erikson, brain by Berzonsky, and self by McAdams, in which these three things are out of sync in explaining the part of the self that acts as main regulator of human psychological processes. This inconsistency is fundamental because it is related to the basic human condition and the basic process of forming self-identity. Incoherence between theories that are not discussed and criticized will lead to difficulties in drawing common threads and conclusions and become separate and unrelated discussions which can eventually lead to confusion in theoretical developments and their practical implementation. This study continues with a critical study of each of the causes of differences between theories in order to discuss and position each theory appropriately. The differences that are criticized are those that are fundamental and have major implications for the main ideas of each theory. There are four points of ideas that are criticized, namely there is no similarity or human nature in self-identity, the ego as the main synthesizer of self-identity, the brain as the main synthesizer of self-identity, and self as the principal synthesizer of self-identity. --- Criticism of The Absence of Human Nature in Self-Identity The view that humans do not have a universal identity or a fundamental similarity in discussing self-identity originates from the idea of pseudospecies by . Humans survive by being part of certain groups and being superior to other groups , which is then manifested based on religion, social class, nation and state. Nevertheless, later realized that, in fact, humans are the same species based on genetic integrity . This view indicates the existence of Erikson's thought journey on whether or not there is a universal similarity in humans. Erikson's journey of thought led to the conclusion that there are certain universal similarities between humans, even though in reality humans behave as pseudospecies so that similarities between humans are very difficult to recognize. This idea is clarified through Hofstede's view , that there are elements of universal / human nature in humans, although limited to biological factors. Similarities at the biological level are not enough to explain the psychological conditions needed in the process of self-identity, for example the freedom to choose in exploring, willingness, awareness, learning ability, ability to organize oneself, and hope), as explained by self-identity figures that each individual can actively construct his own identity. Criticism of The Ego as The Main Synthesizer of Self-Identity The explanation that the ego is the main synthesizer of self-identity uses the psychoanalytic approach by Freud . Erikson emphasized that the ego is the main synthesizer of self-identity by referring to the function of the ego as an organizer of mental processes. Nonetheless, these explanations apply 10 BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct when the underlying theory used has a strong scientific basis. So far, there have been various studies criticizing Freud's psychoanalytic theory, in which these criticisms are fundamental, ranging from the philosophical to the methodical side of Freud's psychoanalytic theory. Paris states that the current psychoanalytic theory has become a marginalized approach and has difficulty surviving. Several figures and/or institutions also mention psychoanalysis as pseudoscience, such as Wolpert and Fonagy , which states that psychoanalysis has no scientific basis, there are no certain principles that can be used as a basis for treating patients, is subjective, and ignores other approaches to mental disorders. Broadly speaking, there are 4 main figures who criticized Freud's psychoanalysis, namely Ellenberger , Sulloway , Grünbaum , and Oliva et al. ). This criticism highlights a number of things, such as the philosophical basis for the emergence of psychoanalytic theories that do not meet the principles of falsification and are epistemically flawed, not supported by scientific evidence, studies that cannot be replicated, and fact fabrication to support the theory. In addition, Crews collaborated with 20 other figures who criticized Freud's psychoanalytic theory, and concluded that although Freud had made a major contribution to the history of world psychiatry, there were various fundamental criticisms that made psychoanalytic theory completely unacceptable. Over time, Freudians have responded to criticisms of psychoanalysis, although they have failed to touch the heart of the matter, namely problems related to the epistemology used, the methods and results in the theory put forward . This condition also has an impact on the theory of 'ego' which has a large portion in the whole theory, which is not supported by scientific evidence, including in the process of self-identity synthesis. Erikson also did not conduct studies using the scientific method to prove that the ego is the main synthesizer of self-identity, but only used the idea of 'ego' in explaining the formation of self-identity. By considering these criticisms, the explanation that the ego is the main synthesizer in the formation of self-identity is weak and fragile, and does not yet accommodate other factors in the process of self-identity, such as awareness in thinking, freedom in making choices, motivation, and will . Criticism of The Brain as The Main Synthesizer of Self-Identity The explanation of the brain as the main synthesizer of self-identity is influenced by materialism or physicalism, namely the understanding that nothing plays a role in an individual's mental condition other than the brain . Materialism emphasizes that everything is physical, and all events can be explained as physical phenomena . There are various criticisms of the view that the brain is the determinant of every human experience, in which these various criticisms lead to a consistent conclusion, namely that the brain does not work alone, so that explanations about individual experience cannot be reduced to the condition of the brain alone. The first criticism came from Wilder Penfield who carried out electrode stimulation to make individuals do something, such as turning their heads, raising their arms, speaking, or swallowing, but failed to influence 'willingness', so it was concluded that the mind or mental is not the brain, but something else that has its own existence. The second criticism Fachrunisa & Riyono Human Nature in Self-Identity Construct comes from John C. Eccles , namely that the brain cannot explain the process of unification of various human experiences . Humans experience various experiences throughout their lives, of which these experiences need to be considered, selected, ignored, analyzed, and synthesized into a unified experience and individual uniqueness. 'Something' that can unify various human experiences is referred to as psyche, self, or soul, namely as the essence or nature of an individual that makes him unique and influences the brain in processing information or experience, and cannot be explained through genetics alone. The next criticism is that the mind affects the brain. The study of Jeffrey M. Schwartz regarding brain plasticity shows changes in the brain that are influenced by mental . A study by Hans Strausburger on patients with Dissociative Identity Disorder also found that mental personality can affect the condition of brain areas. The next criticism came from Roger Sperry who conducted a study on split brain in the 1950s and found that damage to the corpus collosum had no effect on consciousness or an individual's perception of the world and himself. Consciousness is found as something unique and transcends neurological processes in the brain . The studies above explain that there are conditions that cannot only be explained by the brain, such as those related to awareness, sense of self, will, attention, decision, as well as experience unification. This is the basic process that occurs in the formation of human self-identity, because the formation of self-identity requires the process of collecting, sorting, synthesizing experiences or identification that has existed before to become a certain identity that distinguishes itself from other people. The process also requires a will, for example in exploring and receiving experience; aware of what is happening, choose events that get attention, to determine the experience to be synthesized. Thus, the study of the brain can describe the cognitive processes that occur in processing information related to self-identity, but the brain is not the sole synthesizer of self-identity. --- Criticism of The Self as The Main Synthesizer of Self-Identity Discussion of the self has a long history in the discourse of psychology . Initially, James raised the subject of self as the core of discussion in psychology which was eventually ignored by the development of a positivistic view, as well as the influence of the views of social psychology which explained self as a self-image that can change in order to gain social acceptance . The view that leads to the absence of coherent awareness of self has reduced William James' explanation of self, because self is not only social but also should also be able to provide a sense of connectedness and unity . In addition, individuals also have enduring self-schemas, which include a unit of self-information that also functions as a determinant of the relevance of other information. The inability of individuals to integrate themselves and form self-unities is one of the unhealthy personal characteristics, for example in the form of personality disorders . The important role of the self in the formation of self-identity is stated by based on James view of the self. William James's theory of self is a theory that has been developed by many subsequent researchers in defining self . James' conception departs Fachrunisa & Riyono Human Nature in Self-Identity Construct from a radical experientialism approach by viewing the self as a stream of thought or awareness that exists in everyone . James mentions two dimensions of self that are interdependent, namely self as I and About Me . Self is conceptualized not as a substance, but as an activity that is carried out by individuals so that self has an active nature and is not only explained based on human physical . The connection between the concept of self and the process of forming self-identity is through the existence of consciousness or thought that works actively and freely in selecting experiences related to oneself. Self-identity is conceptualized as a feeling of self-similarity by thoughts based on current self and past self . The constitutional process About Me is carried out through a continuous 'introspection' process of various experiences. Self-identity is formed when I pay attention, know and define About Me . The About Me dimension includes material objects , social , and spiritual . The idea of the self as a synthesiser of self-identity provides a clearer picture of the process of self-identity formation. The process of forming self-identity involves oneself as a synthesizer and a synthesized self . The self as a synthesizer has the characteristics of being active, able to organize and unify, involves awareness, accommodates motivation, will, and freedom in choosing and determining the dynamics of self-identity. Meanwhile, the synthesized self includes everything related to oneself, such as the physical, social, and psychological characteristics of the individual. The concept of self from James provides an explanation of some of the limitations of the idea that the brain and ego are the main synthesizers of self-identity, namely I is conceived as a free and independent role in determining self-identity, self describes the position and the interaction between 'something within oneself that knows about self' and 'something within oneself that is known by oneself' , namely I has a central position in determining 'about me' actively; self accommodates the motivation and will of individuals to form, maintain, or change their identity. The Self-Identity Layer Model: A Synthesis Formulation of The Theory of Self-Identity The formulation of a synthesis of self-identity theory was developed based on pre-existing theoretical reviews regarding self-identity as well as relevant criticisms. Definitively, various theories of self-identity show a common thread in the definition of self-identity, which is about how a person can recognize and define himself. While the discussion regarding the types and processes of self-identity formation still indicates opportunities for conceptual development. The formulation of the synthesis of self-identity theory focuses on discussing the development of human nature in self-identity. --- Human Nature in Self-Identity The definition of human nature in self-identity adapts the mental programming framework by Hofstede et al. , namely as a basic condition that exists in everyone that influences --- BULETIN PSIKOLOGI 13 Fachrunisa & Riyono Human Nature in Self-Identity Construct individual patterns of thinking, feeling, and acting. Human nature becomes the basic human potential that allows humans to have and carry out the process of forming self-identity. Self-identity will not be formed without a certain human nature in humans. Human nature has existed within the individual since birth and continues to exist along with the development of the individual. Human nature describes the conditions of basic similarities that have existed between humans from birth. Since birth, humans carry two types of characteristic attributes of themselves, namely those that are the same between humans and those that distinguish between humans . Examples of human nature attributes are awareness, freedom to choose, will, and the potential to learn. These various examples are psychological factors needed in the process of forming self-identity. In the formation of self-identity, every individual basically needs awareness to actively construct his own identity, has the freedom and will to determine the process and identification that will be constructed into self-identity, and can carry out the learning process during the process. The process of forming self-identity which tends to be passive is a representation of the condition of not recognizing various attributes of human nature so that one cannot make optimal use of them, for example, unawareness of freedom of choice. In other words, even though human nature exists as individuals develop, the level of recognition and awareness and how individuals utilize these attributes may or may not be in accordance with existing human nature. As for examples of self-characteristics that are more personal and differentiate between individuals are physical characteristics, personality, and intellectual abilities. These various characteristics are categorized into personal characteristics because the introduction of these factors aims to discover the uniqueness and differences between individuals. These characteristics are not included in the discourse on human nature in this study, because the definition of human nature does not only explain the attributes that are inborn, but also emphasizes the similarities in the basic conditions that humans have. For example, individuals are born with certain intelligence abilities that can be optimized through stimulation and learning processes, but still have certain limitations that differentiate between humans, so optimization efforts remain within these limits. As for human nature, it is the basic condition that is the same between humans, although how individuals realize these attributes may vary, these differences are not fundamental in nature, for example, there is a potential for learning, so that awareness and identification of the potential for learning can always be carried out without certain limitations. Human nature in self-identity is not only at the level of biological or genetic similarities between humans, as is the case with Hofstede et al. who cite examples in the form of laughing, crying, and aggressive behavior, as well as Erikson who cite examples in the form of the mother's instinctive response when the baby cries. This considers the existence of certain psychological conditions and variables needed in the formation of self-identity, for example the existence of awareness, will or motivation and freedom to choose. The results of the synthesis that has been carried out show that there are several characteristics of self-identity that are human in nature, namely: as a form of basic similarity between humans that allows the formation of self-identity, determines the continuity of the process of forming self-identity, includes something in self that can synthesize and unify various 14 BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct experiences about oneself into a self-identity, accommodate the process of forming self-identity through awareness, freedom to choose, will, and motivation that regulates and directs the active formation of self-identity. Based on these four characteristics, human nature in self-identity can be described as a similarity of basic conditions between humans to form self-identity. The results of a critical study that has been carried out on the process of forming self-identity, especially based on the view , shows that self-identity is formed through interactions between self as a synthesizer and self that is synthesized . The interaction between I and Me continues as long as humans live and is dynamic. I is an essence in human beings that can 'manage', 'control', and 'master' various forms of Me. James explained I as an awareness or thought activity that exists in every person. While Me is everything that can be identified with oneself. In the discourse of self-identity, self-identity theory explains the types of self-identity as part of Me, especially those in the form of personal and social self-identities. Personal identity includes a variety of physical, psychological, personality, emotional, and intelligence characteristics. Whereas social self-identity includes the interaction and connectedness of individuals with other people, such as through the identity of ethnicity, race, religion, citizenship, social status, or other group categories. --- Figure 1 The Self-Identity Layer Model Based on the existence of human nature in self-identity, as well as the existence of two types of self-identity in the existing discussion of self-identity, self-identity can be described in a 'self-identity layer model' that accommodates both . Human nature's self-identity becomes the basis of other self-identities so that it is fundamental in the formation of self-identity. Human nature along with individual growth and development and the results of interactions with other people. The placement of human nature, personal and social elements in self-identity takes into account the nature of the interactions needed to form it, ranging from intrapsychic to social. Human nature's self-identity can be included in I and Me. Human nature as I means leading to the existence of the essence or basic human nature that forms self-identity. Discussion of human nature as I is inseparable from the basic human concept which leads to activities of thinking , self and soul . Human nature as I is a central discussion in psychology, complex, and has a high level of abstraction that often causes debate . Human nature as I is the self that is capable of supervising, controlling, and evaluating Me. The existence of I allows individuals to change and construct their identity. Based on Eccles' explanation, self I is something in the form of psyche or soul, which influences various dynamic processes that occur within the individual. The complex nature of "I" implies that the conceptualization of human nature as "I" needs to be studied as the basic concept of human development in psychology. Whereas I in this study is reviewed based on the characteristics needed in the formation of self-identity. This research focuses on the study of human nature as Me. Human nature as Me means the introduction of the individual to the basic condition so that he can optimally support the process of forming his identity. When individuals know and are aware of the potential within themselves to form self-identities actively and make optimal use of it, then the development of personal and social identities can also take place optimally because individuals can use the psychological modalities that already exist within them. Based on the characteristics of human nature self-identity that has been mentioned, there are several things that individuals need to recognize and be aware of in order to be able to develop their own identity, namely: each individual can actively form his own identity, the formation of self-identity requires awareness to manage and direct efforts to form self-identity, there is freedom in choosing, accepting, disposing of, organizing, evaluating, and building self-identity, self-identity formation needs to be accompanied by willingness, identity formation The self takes place continuously and as a lifelong process In addition to the recognition of the potential and basic conditions that support the development of self-identity, human nature as Me also includes recognition of the essence of self . This kind of recognition is the goal of basic questions related to self-identity, such as, "Who am I?", "What is my purpose in life?", and "What do I need to do for the rest of my life?" . This recognition can only be achieved when the individual is able to understand and accept his essence as a human being through the process of forming a dynamic self-identity. --- The Dynamics of Self-Identity The previous explanation shows that there is an interaction between I and Me in the formation of self-identity that lasts a lifetime and is dynamic. Individuals can experience changes in the attributes of self-identity along with their life journey. Under certain conditions, these changes are needed in order to strengthen the self-identity that is being formed. However, there are also certain conditions that indicate unhealthy changes in self-identity for individuals, for example reflected in the phenomena 16 BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct of culture shock, racism, feelings of alienation, crime, and other problems that reflect a weak human nature self-identity. With these problems, the discussion regarding the process of forming a healthy self-identity by considering the existence of human nature self-identity becomes important. There are several conditions that characterize the formation of a healthy self-identity, namely: there is recognition and acceptance of human nature self-identity, there is congruence between self-identity as Me and self as I, the process of forming self-identity takes place continuously. The process of forming self-identity begins with the existence of I as a human nature that has been possessed by humans as a potential in dealing with various kinds of experiences since the individual was born. Along with increasing experience and starting to interact with other people , the Me attribute in individuals is also growing. I begin to recognize anything that can be identified with him, for example physical characteristics such as one's limbs, or personal characteristics such as his tendencies, or based on his social relations such as family and friendships. Not only that, individuals also begin to be able to question and recognize their true nature, such as regarding their life goals as well as their capacities and potentials. The existence of the process of recognizing the essence of oneself also means the introduction of the I within oneself. When an individual can identify himself with the conditions of his human nature , then the individual can take advantage of the potential that exists in his human nature to form his identity actively. For example, individuals who recognize the freedom to choose within themselves, individuals can choose and determine the direction of exploratory experiences, and learn from these experiences. Meanwhile, individuals who are not aware of this potential tend to be passive. When the Me dimension which is related to the individual's recognition of his human nature shows compatibility and congruence with I, then this condition indicates a process of forming a healthy self-identity in the form of a strong self-unity. The concept of a healthy self-identity has several implications. First, efforts to recognize human nature's self-identity are crucial for humans. The efforts made can vary in order to know and understand the nature of the individual and the potentials they have to develop their identity. Second, this effort requires individual openness to always learn to understand yourself throughout his life. A sense of contentment in learning about oneself indicates an unhealthy process of forming self-identity. Third, the purpose of establishing self-identity is to achieve congruence and integrity towards human nature's self-identity. Human nature's self-identity as I becomes a benchmark in determining the selection and formation of self-identity, including those that are personal and social. If there is incongruence towards human nature self-identity, then the individual needs to reinforce awareness of his human nature, namely that he has the potential to learn and form a more congruent self-identity. --- Discussion This study discusses the fundamental and comprehensive conceptualization of self-identity by developing a layered model of self-identity that involves the human nature of self-identity. The BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct element of human nature in self-identity is a form of self-identity that is shared between humans and becomes the core of the development of a strong self-identity. Human nature in self-identity explains the individual's awareness and recognition of the basic conditions of one's human nature which supports the formation of one's identity as a whole, including personal and social self-identity. Based on the results of the study, self-identity is defined as recognition and awareness of one's condition, which includes the nature of oneself , personal characteristics, and social characteristics of oneself. This research departs from the inconsistencies in the discussion of self-identity, which originates from the idea that humans do not have universal similarity characteristics , even though the discussion of the process of forming self-identity basically emphasizes the existence of certain characteristics or conditions. Which allows the process of forming self-identity to take place, such as the potential for an active attitude in forming self-identity . Human behavior in the personal and social contexts also involves the existence of human nature, although the discussion is limited to genetics , which ultimately was also affirmed by Erikson . Discussion of human nature in the form of genetic or biological influences is not sufficient to explain all of the dynamics of human psychology . Such a conception is not comprehensive and tends to be followed by various problems, for example by making biological and genetic factors the main benchmarks of human quality, through studies that compare moral and mental functions between groups of people based on IQ levels between ethnic groups, until then such research received rejection in academic discourse . The existence of human nature in self-identity through this research has become a novelty in the discourse on self-identity which previously tended to focus on personal and social identities . This novelty can be used in examining problems that arise as a result of an emphasis on self-identity which tends to be partial, for example racism and discrimination . Based on this self-identity layer modeling, racism and discrimination are consequences that arise when individuals only see differences between humans and do not accept the existence of identity similarities between humans. As is the case with the racial ideology sparked by which then triggered various racist and discriminatory actions against certain groups of people who were considered not to be part of their best race. This view only emphasizes identity that is social because it only accepts the similarities between groups and rejects the differences that belong to other groups, which also gives rise to feelings of superiority due to comparisons between these groups. This view ignores the existence of fundamental similarities between humans, namely that humans are not superior to one another because basically they have the same human nature. It is this fundamental similarity that is emphasized by the United Nations through the statement, "All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in the spirit of brotherhood. Human nature as certain basic conditions that already exist in humans are also explained through various literatures. Riyono et al. explained that one form of human nature is the 18 BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct freedom to choose. This freedom is not only manifested through the activity of making a major decision, but also takes place intrapsychically in the form of a process of choosing and regulating mental processes that occur within oneself, for example the ability of individuals to manage sources of motivation within themselves. A study by Fachrunisa and Chizanah also found freedom to choose as a characteristic of human nature, which then supports the willingness to choose, evaluate, and direct human thoughts, feelings, and behavior. The existence of freedom and will as characteristics of human nature in I is also a modality for individuals in the process of paying attention to existing experiences and self-identification to be reconstructed into a self-identity. This study does not make a dichotomy between explanations regarding human nature as nature and nurture. The process of forming self-identity involves both of these processes, because individuals are born with the same human nature between individuals, along with the personal characteristics they are born with, for example their physical condition, which will then interact with the environment along with their development through the nurturing process. This view is in line with James' idea of self, namely that every person is born in a state of awareness as one's human nature , but the form of the Me dimension can be influenced by interactions that occur with the environment. Human nature in humans explains the interaction between I and Me in the process of forming self-identity. Human nature as I is the self that controls and controls Me. The interaction between I and Me is known through the psychological activity of I in individuals to recognize, test, and evaluate self experiences. An explanation of these activities was raised by Wilhelm Wundt and William James through a process of introspection or observation of mental processes that occur within oneself . In addition, this process is also demonstrated through reflection; reflexivity, or the ability to recognize and understand one's own thoughts, feelings, and behavior , thus enabling oneself to become 'the one who recognizes' as well as 'the one who is recognized'. The ability to reflect is needed in the process of learning from experience, because individuals can form meaning or complete connections from their experiences . This study also emphasizes the explanation of the active and dynamic formation of self-identity with the interaction between I and Me in the process. This explanation also complements Grotevant explanation regarding the factors that trigger individuals to explore identity, which are not only influenced by identity disruption caused by social interaction factors, but also intrapsychic factors that determine whether or not there is an exploration process in individuals, for example factors willingness to think reflectively or awareness of inner freedom. Based on the explanation of human nature in the framework of interaction between I and Me, differences in intrapsychic factors that influence the formation of self-identity are influenced by two things, namely potential I which is not realized optimally, namely due to weak I function, and individuals lacking recognize and identify himself with I so that there is incongruence between human nature as I and Me. Discourse about the universal nature of human beings and the existence of a self that has dual conditions in discussions about self is not only found in literature with a Western perspective, for example James , but also in scientific literature from non-Western psychology. One of the figures who explains it is Ki Ageng Suryomentaram ), Fachrunisa & Riyono Human Nature in Self-Identity Construct as a figure in the science of soul science from Indonesia who has an Eastern perspective in explaining human self-concept and found some similarities with the Western perspective . His perspective on the existence of two self-conditions as 'I' and 'About Me' is in line with the perspective of fundamental self-identity, or human identity, which is self in the fourth dimension, or a soul that has been able to research and master its kramadangsa. The human soul is categorized into four sizes, namely the first size, namely the size of plant life, the second size, namely the size of animal life, the third size, namely the size of human life, and the fourth size, namely the size of a 'featureless human'. The feeling of kramadangsa is a sense of self in the third dimension and is formed from various 'records' of experiences throughout life. Kramadangsa needs to be recognized in order to become a human without characteristics by doing 'introspection'. The process of introspection is successful when the individual does not reject himself and when the individual finally realizes that the sense of 'I' is not his true self . Meanwhile, true self-identity is about 'I' which is universal and free from its own record and can control itself . A similar view is also found in the view of Imam Al-Ghazali , a thinker who has influenced many discussions of psychology with an Eastern perspective. Fundamental self-identity is awareness of the essence of human beings, including answers to questions such as, "What is human? What distinguishes humans from other living things? who am i? Where did I come from and where will I go after I die? What is the reason behind my life in this world? What is my life goal? What things are good for me, and what are bad for me?". These questions naturally arise in every human being, and have answers that are essential and universal. Meanwhile, other attributes about oneself, such as physical condition, psychological response, and social characteristics of humans are not fundamental self-identities, but can help individuals to achieve fundamental self-awareness. Self-knowledge is successful when there is self-awareness that is transcendental and includes recognition of the existence of God. This research has several limitations. First, this study does not aim to specifically study human nature as an I, because the discussion of self-identity places more emphasis on the Me dimension of self. Future research can develop an explanation of human nature as I by accommodating various related literature which can be sourced from the fields of psychology, philosophy, education, anthropology, sociology, and religion. Second, the validity test conducted on the self-identity model was carried out based on a qualitative approach. Future research can also develop model tests using a quantitative approach and develop measurement tools for the model. --- Conclusion This study attempts to find a fundamental and comprehensive concept of self-identity by using Hofstede view of the existence of human nature elements as an analytical framework for developing self-identity theories. The discussion about human nature in self-identity has become an important implicit discussion, but does not get special recognition in the development of optimal 20 BULETIN PSIKOLOGI Fachrunisa & Riyono Human Nature in Self-Identity Construct self-identity. The results of the research show the existence of human nature self-identity as a fundamental element of self-identity and formulate a layered model of self-identity which consists of three layers of self-identity, namely human nature, personal, and social. In addition, this study also explains the process of forming a dynamic self-identity as a result of the interaction between self as I and About Me , including regarding the formation of a healthy self-identity based on this framework. This study provides an explanation of the fundamental self-identity model and enriches the idea of the theoretical development of self-identity theory in order to respond to criticism about self-identity theories that are partial and less comprehensive. --- Recommendation This research provides several implications for the study of self-identity. First, the process of developing self-identity needs to pay attention to and strengthen the self-identity of human nature in individuals. This can be done in several ways, namely optimizing function I, for example through honing reflective thinking skills and increasing literacy regarding human nature and nature, periodic evaluation of the congruence between human nature as I and Me by doing introspection. The development of self-identity needs to be supported by a nurturing process, for example through education, which accommodates efforts to strengthen the human nature self-identity, such as by conducting learning that emphasizes understanding of human concepts based on scientific, philosophical and religious insights as a field of knowledge that discussing this, improving self-reflective thinking skills at least through learning that emphasizes thinking and feeling, providing assistance to individuals in order to align what is known about oneself with the nature of oneself so that self-identity congruence occurs. In addition, the existence of human nature self-identity can also reduce problems that arise as a result of partial self-identity, for example discrimination and bullying, namely by emphasizing the similarities that exist between humans, so that differences do not become a single benchmark for humans. The formation of a comprehensive self-identity will bring about mutual respect and acceptance of the differences and uniqueness of each individual. This study provides a strategy for implementing character education in Indonesia. Strengthening the human nature aspect of character education will strengthen the formation of a whole self-character. This means that aspects of faith and relationship with God are the foundation of the next five characters. Strengthening this aspect should be the main focus in character education in order to the developing other characters that are personal and social . Strengthening this aspect needs to be conducted comprehensively, not only in a ritualistic way, but more fundamentally to self-awareness as a servant of God. --- --- Acknowledgment Researchers express their gratitude and appreciation to the thesis supervisor lecturer, the entire family of the UGM Master of Professional Psychology, and LPDP RI. --- Author Contribution RAF contributed to data collection, data analysis and manuscript writing. BR contributes to conceptualizing research and data analysis. --- Conflict of Interest The researcher stated that there was no conflict of interest in this research. --- Orcid ID Rahma Ayuningtyas Fachrunisa https://orcid.org/0009-0002-8105-3245 Bagus Riyono https://orcid.org/0000-0003-1172-8526

The development of identity theories in psychology tends to be partial and incoherent, and are followed by various problems. This study uses meta-ethnography to deconstruct theories of self-identity in order to find common threads and relation between theories, including main theories on identity (Erikson's; Marcia's), and other related theories (Berzonsky's, Grotevant's, Waterman's, McAdams's), This study uses Hofstede's view on identity theories, and formulates a fundamental and comprehensive conceptualization of identity theory. This study formulates a model of the layers of identity which includes the identity of (1) human nature, (2) personal, and (3) social. This study also explains the dynamics of the self as 'I' and 'Me' in the formation of identity. This study discusses human nature in the discourse of identity and this provides further implications in the field of developmental psychology and educational psychology.

Individual differences in acculturative status can also impact health outcomes. The Latino Health Paradox states that the longer Latino immigrant populations remain in the US, their health outcomes worsen [6,28]. Following this theory, less acculturated Mexican-Americans report better health despite lower socioeconomic status, limited education and decreased healthcare access [6]. As generations of immigrants acculturate to mainstream US culture, they are more likely to engage in unhealthy behaviors, including substance use, unhealthy eating and a less active lifestyle [6,29]. During pregnancy, more acculturation is also associated with adverse health behaviors [30,31] and negative perinatal outcomes, such as early gestational age and low birth weight [4,14], declines in breastfeeding [32,33] and postpartum depression [2,34]. However, the exact mechanisms of these acculturation-related health declines are unknown. One important factor to consider in the relationship between acculturation and behavioral health outcomes is social support. Women of low SES and racial/ethnic minority status may particularly benefit from social support [35,36], a factor that improves health behavior [37,38]. Acculturation is generally associated with low levels of social support [39] despite the collectivistic nature of Mexican culture [40] and strong associations with familial and community support [41,42]. Social support has been shown to buffer against the negative effects of acculturation on mental health [43,44]. In addition, social support increases positive sleep behaviors [45,46] and is protective against perinatal outcomes [21,47]. Close supportive relationships may be particularly important in promoting healthy sleep habits [48]. Thus, for a pregnant mother who is struggling with sleep issues, support from their social network may be critical [49]. Therefore, lack of social support might play a role between acculturation and maternal-child health, but this is not yet known. Sleep may also be altered by acculturation [50][51][52]. For example, Mexican immigrants are more likely to have longer sleep duration relative to Mexican-Americans [53]. Sleep disturbances can also be predicted by high acculturation levels [54], low socioeconomic status and increased depressive symptoms [9]. Thus sleep may be a mediator between acculturation and adverse health [50,51]. Given the commonality in sleep disturbance among pregnant women, poor sleep during pregnancy may also be a moderator. For example, clinically diagnosed insomnia during pregnancy was related to maternal depression and acculturation in a low income sample of Latinas, including Mexican-Americans [55]. Despite this initial report, research is lacking on the moderate but more common subdiagnostic sleep disturbance often seen in pregnancy and vulnerable high risk populations. The current study explores the relationship between acculturation and daily sleep measures in a sample of low income pregnant Mexican-American women and tests the hypotheses that sleep is a mediator and/or moderator between acculturation and one important pregnancy outcome, maternal depressive symptoms. Specifically, elevated scores on the Short Acculturation Scale for Hispanics will be related to less hours slept, more time to sleep onset, more sleep disruptions and decreased satisfaction with sleep as well as be associated with increased maternal depressive symptoms. As social support is often hypothesized as a protective factor on acculturation [31,56] and pregnancy outcomes [57], the role of social support on sleep outcomes will also be examined. It is hypothesized that adverse sleep outcomes will be related to less satisfaction with social support. --- Materials and Methods --- Sample Seventy Mexican-American pregnant women , without current or past illicit drug use, were recruited at a local county hospital. Visits occurred between February 2009 and July 2010. The hospital was in an urban setting, in which 92% of patients live below the poverty line and 42% are uninsured [58]. One participant withdrew due to lack of availability and seven participants switched to other clinics. One participant tested positive for an illicit substance and one participant failed to provide sleep diaries at one time point. A final sample of 60 mothers was evaluated. An apriori power analysis determined that for a multiple linear regression analysis with 4 predictors based on a medium-large effect size [47,59], 58 participants would have had 80% power to determine study outcomes. Thus, the 60 reported had adequate power to address the current hypotheses in a cross-sectional manner. This work was conducted in accord with ethical principles approved by the Institutional Review Board. --- Procedure Participants were seen during early, mid and late pregnancy . All participants provided informed consent. --- Surveys Surveys were presented to participants in their preferred language. Questionnaires were translated from English to Spanish using a double translation procedure [60]. Depression and social support questionnaires were collected at early, mid and late pregnancy; As pregnancy lasts ~9 months, changes in acculturation were expected to be minimal and measured once in late pregnancy. --- Maternal acculturation status Acculturative status was measured using the 12-item Short Acculturation Scale for Hispanics [60]. The SASH evaluates language use, media and ethnic social relations on a 5-pt Likert scale and has evaluated health outcomes [61] and acculturation [14,62] in Mexican-American mothers. SASH has good reliability α=0.92 and higher scores indicate higher acculturation. --- Maternal depressive symptoms The Edinburgh Postnatal Depression Scale [63] is a 10-item self-report measure of depressive symptoms. Responses were anchored to 7 days prior and sleep diary collection occurred the following day. Responses were scored 0-3. The EPDS has been translated and validated in Spanish [64,65] and effectively detects perinatal depressive symptoms [66][67][68]. As disrupted sleep is a symptom of depression and to adjust for potential collinearity, question 7 was omitted "I have been so unhappy that I had difficulty sleeping." A modified EPDS with nine questions was analyzed as in previous studies of sleep and perinatal depression [69]. This version showed an acceptable reliability of α=0.819. --- Prenatal Social Support Prenatal social support was measured using the Prenatal Social Support Instrument -Revised [70,71]. Satisfaction of social support received was measured on three subscales. The first has eight items measuring received social support . Participants responded if they received support in the previous week and if yes, rated their satisfaction on a 4-point scale. The second subscale referred to the child's father and the third subscale addressed support received from medical providers. The scale was developed for use in both English and Spanish [70]. Higher scores indicate higher satisfaction with social support. --- Maternal sleep diary collection Sleep diaries were collected on three consecutive days at each phase . Mothers reported bed and wake times and total hours slept calculated. They also reported minutes to fall asleep , times woke during the night , and refreshed feelings upon waking from 1 to 7 . Similar sleep diaries relating sleep in pregnancy to maternal depressive symptoms have been used [47]. --- Statistical Analysis To address the relationship between age on outcomes of interest , a correlation was used. One-way analyses of variance analyzed categorical variables including education, employment status, marital status, family income, on outcomes of interest and a t-test evaluated previous depression. Only age was significantly related to acculturation, thus controlled for in all analyses. Modified EPDS score of depressive symptoms, SASH score of acculturation, PSSI score of social support, and self-reported sleep outcomes were evaluated as continuous. Longitudinal analyses were performed to determine the predictive utility of acculturation on trajectory of sleep outcomes from early to late pregnancy. Slopes of hours slept, minutes to sleep, number of times up and feeling refreshed upon waking were compared using repeated measures multilevel modeling in SPSS with an unstructured covariance pattern. In all analyses with depression, previous depression was accounted for. Repeated measures ANOVAs compared depressive symptoms and sleep outcomes across three pregnancy phases. As there were no differences in depressive symptoms or sleep outcomes , scores across pregnancy were averaged and a cross-sectional analyses was performed. All averaged variables of interest were correlated. Separate multiple linear regressions were performed using SPSS to determine the roles of acculturation and social support on each sleep outcome as the dependent variable. Multiple linear regressions also determined the effects of acculturation, sleep outcomes and their interactions on depressive symptoms. Mediational analyses on the effects of acculturation on maternal depressive symptoms through sleep outcomes were performed according to Preacher and Hayes and statistical significance of the indirect effects tested via bootstrapping [72]. --- Results --- Maternal demographic characteristics Maternal age was not correlated to sleep outcomes during pregnancy , however, younger women were more likely to be acculturated . All other demographic variables in Table 1 were also analyzed and unrelated to sleep outcomes or acculturation . --- Pregnancy timing differences amongst self-report sleep, support and depressive symptoms There were no differences between depressive symptoms, social support or sleep variables across pregnancy for hours slept, minutes to sleep onset and feeling refreshed upon waking as determined via RM ANOVA . There was a significant difference in pregnancy phase with times up at night. Post-hoc tests suggest a non-significant trend that women reported more times up at night in late relative to early and mid-pregnancy , but not between early and mid-pregnancy . --- Correlation between acculturation, depressive symptoms, sleep and social support variables Less acculturation and more depressive symptoms were significantly correlated with feeling less refreshed upon waking. More depressive symptoms were associated with more times up at night and less satisfaction with the child's father. Time to sleep onset was negatively correlated to satisfaction with received support. Lastly, more satisfaction with received and medical support were positively associated . --- Role of acculturation and social support on sleep outcomes Cross-sectional-There was no effect of either maternal acculturation or prenatal social support on hours slept, number of times up nor number of minutes to sleep onset. However, higher acculturation, but not social support, significantly predicted feeling less refreshed upon awakening . Longitudinal-Multilevel modeling analyses revealed a significant effect of acculturation on times up at night and feeling refreshed upon awakening across pregnancy. For times up during the night, time showed a significant linear decrease and there was a marginally significant trend of acculturation , indicating that those acculturated reported more times up during the night. There was also a time x acculturation interaction , indicating that acculturated mothers experience increased sleep disruptions more quickly during pregnancy . For feeling refreshed upon awakening, time showed a linear decrease and acculturation was significant , indicating that those acculturated report lower feelings of being refreshed. The time x acculturation interaction was significant , indicating that acculturated mother's perceived quality of sleep increased more quickly over time. . There were few significant effects of social support on sleep outcomes. Less satisfaction with support from the child's father was associated with more time to sleep onset overtime and satisfaction with medical support for mothers with more sleep disruptions increased more quickly over time . --- Role of acculturation and sleep variables on maternal depressive symptoms Cross-sectional-The number of times a pregnant woman was up at night significantly predicted depressive symptoms during pregnancy. Women that reported more sleep disruptions also exhibited elevated depressive symptoms . Analyses were controlled for previous depression and maternal age. Longitudinal-For times up during the night, multilevel modeling showed that the time effect was not significant . However, the effect of times up at night was significant , indicating that women with more times up tended to have elevated depressive symptoms. There was a marginally significant effect of times up during the night by time interaction , indicating that mothers with increasing sleep disruptions experience increasing depressive symptoms more quickly over pregnancy. Moderation-A moderation analysis determined a marginally significant effect of acculturation by average minutes to fall asleep on maternal depressive symptoms . More acculturated pregnant women reporting more minutes to sleep onset also reported elevated depressive symptoms . No other interactions were found. Moderation analyses were also performed with depressive symptoms as the potential moderator between acculturation and sleep outcomes, but no significant interactions were found . Preacher and Hayes , a bootstrapping approach was used with the PROCESS computational tool in SPSS 19.0 to test whether the relationship between acculturation and maternal depressive symptoms was mediated by how refreshed a women felt upon awakening. There was no direct effect of acculturation on depressive symptoms, however, a direct effect between predictor and outcome is not a prerequisite to determine indirect effects via a mediator [73][74][75]. The proper estimate of indirect effects via a mediator is with a single inferential test of ab [75,76]. Thus, there was an indirect effect of acculturation on depressive symptoms such that with those with greater acculturation reported feeling less refreshed upon waking , which translated to more depressive symptoms . This indirect effect is statistically different from zero as realized by a 95% confidence interval that does not include zero while controlling for maternal age and previous depression. The normal theory-based Sobel Test agrees with the inference made using a biascorrected bootstrap confidence interval. Analyses were also performed with depressive symptoms as the potential mediator between acculturation and sleep outcomes, but no effects were found . --- Mediation-Following --- Discussion and Conclusion This study examined self-reported sleep during pregnancy as a contributor to the negative association between acculturation and maternal depressive symptoms in pregnant Mexican-American women. As this was an initial investigation, both cross-sectional and longitudinal analyses were used in a small high risk sample with similar results. Acculturation, but not depression, was related to the trajectory of how woman felt about her sleep quality. However, both acculturation and elevated depressive symptoms were associated with increased nighttime disruptions throughout pregnancy. In addition, increased time to sleep onset moderated, while feeling less refreshed upon waking mediated, the relationship between greater acculturation and elevated maternal depressive symptoms. This research is important as disruptions in sleep and maternal depression have adverse consequences for offspring [11,21,77], particularly in low SES high-risk populations. As increases in the Mexican-American population are driven by high birth rates [12], perinatal healthcare needs of Mexican-American women must be addressed in a culturally sensitive manner. Perception of one's sleep is associated with acculturation in non-pregnant populations. For example, acculturated Mexican-American women with lower income and high depressive symptomatology reported greater sleep disturbances [9]. Studies have found that subjective sleep reports rather objective measures of sleep are related to postpartum depressive symptoms [69,78] and explain most variance in maternal depressive symptomatology [79]. As disrupted sleep quality is a symptom of depression [80], it is important to note, in the current study when the EPDS sleep question was omitted, perception of sleep independently predicted prenatal depressive symptoms. In addition, acculturated women reported lower sleep quality throughout pregnancy, though by late pregnancy, non-acculturated women reported equally as low levels. This is in line with other studies that report decreased sleep quality late in pregnancy [19][20][21], however, the current study points to acculturation as an additional risk factor in the perception of sleep quality in Mexican-Americans during pregnancy. The mechanism by which acculturation may be affecting sleep quality is not clear. The Latino Health Paradox suggests the longer generations of Mexican immigrants spend in the US, the worse their physical and mental health outcomes [81][82][83]. These health declines may be due to US lifestyle adoption and subsequent unhealthy behaviors [6] with particular detriment during pregnancy. For example, acculturated Mexican mothers are more likely to engage in alcohol and substance use during pregnancy than those less acculturated [31]. It is possible that acculturation is representative of reporting bias, such that less acculturated women may be less likely to "complain" of sleep problems. However, acculturation is related to adverse objective measures of health during pregnancy [14] and non-pregnancy [6,84]. This suggests acculturation status and subsequent health behaviors maybe a relevant risk factor for both perceived and objective health outcomes in the perinatal period. Social support has been suggested as another means by which acculturation may affect health [43,44]. In the current study, there was a null finding between social support and sleep outcomes when acculturation was in the model. This is significant as acculturation to US culture is often associated with a social network loss [31], even though Mexican culture is considered collectivistic [40]. In addition, previous studies suggest social support buffers against the effects of stress on sleep deficiencies [85,86]. However, satisfaction with social support was not protective of adverse sleep outcomes in the current study nor associated with acculturation. This is noteworthy as our work suggests that the role of acculturation in sleep outcomes is above and beyond that of social support. However, the measure used, PSSI [71], is specific to pregnancy-related issues. A global non-pregnancy measure of support may have revealed protective relationships. Maternal depressive symptoms were negatively associated with sleep quality, but not with acculturation alone. Sleep disturbances contribute to depression during pregnancy [47,77,87,88], however, the role of acculturation in maternal depression is less clear [2,4,34]. In the current study, while acculturation was not directly associated with increased depressive symptoms, acculturation had an indirect negative relationship on acculturation via feeling less refreshed upon awakening as a mediator. This suggests sleep quality could be the behavioral mechanism by which acculturation exerts adverse effects on depressive symptoms, however, work addressing causality is needed. In addition, increased time to sleep onset moderated the relationship between increased acculturation and elevated depressive symptoms. Difficulty falling asleep is associated with poor health outcomes [89], insomnia [90,91] and is a risk factor for maternal depression [92,93]. Temporal association of these factors should be investigated in a larger sample, however, this study was one of the first to relate acculturation and sleep to elevated depression symptoms in pregnant Mexican-American women. While this study points to important relationships between acculturation, sleep and maternal depressive symptoms, there are limitations. Sleep self-reports were used rather than objective measures such as actigraphy. However, sleep perceptions are important to daily functioning [69,78,79] and highly correlated to objective measures [79]. We also assessed sleep for three days at each phase. Collection of sleep variables for a week or longer is common and might be more sensitive to uncovering relationships between prenatal sleep and depression. As well, acculturation was only measured once during pregnancy. Acculturation is often tied to generation [94] and likely to remain stable during the short time of pregnancy. Yet, as social pressures change, acculturation status may differentially affect sleeping patterns. There are many ways to measure acculturation and there is considerable variability amongst the measures [13,95]. Future work should investigate aspects of acculturation, such as acculturative stress, discrimination and ethnic identify, to identify which components are detrimental to maternal mental health. It will also be important to collect objective sleep measures as well as potential biomarkers that are related to sleep and depression, i.e. cortisol [11,96,97] and inflammatory markers [21,98,99]. Lastly, larger samples should be obtained with sufficient power to fully address temporal relationships between variables and path analyses to determine indices of fit. Although the current results are preliminary, important information about the impact of sleep patterns and acculturative status on maternal depression was obtained. This initial work points to acculturation as a risk factor for women of Mexican descent susceptible to adverse outcomes during the prenatal period. The current study suggests that together reports of sleep quality and acculturation may provide a means for assessing risk for perinatal outcomes, such as depression, in high risk pregnant Mexican American women. Such work can begin to identify if sleep is the behavioral mechanism by which acculturation-related processes may have negative effects on the mother-child dyad. The current work extends our knowledge to the interaction between cultural risk factors, sleep behavior and maternal mental health in high risk populations with implications for healthy mother/child dyads. A) Relationship between acculturation and number of self-reported times up during the night by pregnant Mexican-American women. Pregnant acculturated women reported an overall increasing trajectory of increased nighttime awakenings relative to non-acculturated women during pregnancy . B) Relationship between acculturation and selfreports of feeling refreshed upon wakening by pregnant Mexican-American women. Selfreports occurred in a 7 point Likert from 1 to 7 . Pregnant acculturated women reported overall lower feelings of being refreshed upon waking , however, non-acculturated women showed a significant decrease in sleep quality over pregnancy . For graphical representation only, dichotomous categories of levels of acculturation levels and cultural values were created via median splits. Interaction between acculturation and time to sleep onset in pregnant Mexican-American women. There was an interaction between acculturation and time to sleep onset . More acculturated women who took longer on average during pregnancy to fall asleep reported elevated depressive symptoms relative to those less acculturated. For graphical representation only, dichotomous categories of levels of acculturation and time to sleep onset were created via median splits. Unstandardized regression coefficients of the relationship between maternal acculturation and maternal depressive symptoms as mediated by how refreshed a woman felt upon waking. Using the PROCESS computational tool in SPSS 19.0 [75], the proposed mediator, how refreshed a women felt upon waking, is regressed on acculturation to produce a and depressive symptoms is regressed on both feeling refreshed and maternal acculturation, which yields b and c′ , respectively. This indirect effect of ab=0.664 means that two mothers who differ by one unit in their reported acculturation status are estimated to differ by 0.644 units in their report of maternal depressive symptoms as a result of the tendency for those who are more acculturated to feel less refreshed upon awakening, which translates into elevated maternal depressive symptoms. This indirect effect is statistically different from zero as realized by a 95% confidence interval that does not include zero . *p<0.05 Pearson correlation coefficients between acculturation, depressive symptoms, sleep outcomes and social support averaged across pregnancy --- Supplementary Material Refer to Web version on PubMed Central for supplementary material. Multiple regression models explaining maternal sleep variables averaged across pregnancy . Bold indicates significant predictor variable, p<0.05. ---

Purpose-Greater acculturation is associated with adverse perinatal outcomes in Mexican-American women, but the mechanisms by which acculturation influences perinatal outcomes are unclear. Pregnant acculturated Mexican-American women are more likely to engage in unhealthy prenatal behaviors relative to those less acculturated, including poor sleep. As sleep disruptions are associated with acculturation and negative perinatal outcomes, particularly maternal depression, alterations in sleep may adversely affect pregnant Mexican-American women. Methods-Sixty pregnant women of Mexican descent completed surveys about sleep, acculturation, depressive symptoms and potential protective factor of social support. Results-Acculturation, but not social support, significantly predicted increased sleep disruptions as well as overall feeling less refreshed upon waking across pregnancy. Moderation analysis indicated that more acculturated women who took longer to fall asleep reported increased depressive symptoms. Feeling refreshed upon waking also mediated the relationship between increased acculturation and elevated maternal depressive symptoms. Conclusions-Acculturation and altered sleep contribute to greater risk in Mexican-American women for maternal depressive symptoms in the perinatal period. These findings have implications for prevention and treatment of maternal mental health disorders, which may adversely affect perinatal outcomes in the vulnerable Mexican-American population.

Introduction: Although the Covid-19 pandemic ceased in the numbers of the affected patients, especially the ones with severe manifestation of the disease, its influence on health still remains, affecting not only the somatic but also mental wellbeing. This global crisis impacted almost every person, but not equitablethe mental distress consisted of many, often synergic, risk factors which are not easily identifiable. The analysis of causal elements for aggression and fear deriving from the pandemic was conducted among Polish students, enabling thorough examination. Objectives: The aim of the study was to analyse the risk factors contributing to the deterioration of mental health, especially presented as elevated fear and aggression levels. Methods: Examination of fear and aggression levels was conducted on the group of Polish students using Fear of Covid and STAXI-2 questionnaires. Initially, 906 participants took part in the first round of the study. Four rounds were conducted, finally extracting a group of 231 participants tested in the four different time points of the pandemic in Poland, during the second and the third waves of the pandemic. Results: Among the studied factors that have impact on the decline in the state of the mental health, statistically significant were female sex, being overwhelmed by the amount of news found in various mediaa phenomenon called "infodemic" -altogether with poor health condition, both of the participants' and their relatives. Obtaining vaccination was a factor that lowered aggression in participants, but only the ones that were primarily eager to get one. Conclusions: The present deterioration of mental health in society was largely fuelled by the initial disturbance arising from global pandemic, general lockdown and financial crisis bound with it. The discrimination of risk factors for inefficient resilience was not possible on such a huge scale before. Unfortunately, as new challenges arise, the knowledge about the social groups most prone to mental crisis is necessary, as this is the only way to elaborate the proper procedures and guide a successful diagnostic process and treatment. Introduction: Assessment of social and emotional wellbeing of Aboriginal people is challenging. A The culturally appropriate screening instrument for SEWB in Aboriginal adults entitled Here and Now Aboriginal Assessment , has been developed and evaluated. The HANAA explores ten key domains and adopts a yarning process to initiate a semi-structured interview that covers each domain. This is recorded in narrative form and each domain rated as 'problem' or 'no problem' and a 'recommended action' is determined. The HANAA is widely used by Aboriginal mental health service providers around Australia. Objectives: There have been multiple requests by service providers for a similar instrument to be developed for young Aboriginal people. This study aims to develop a youth version of the instrument abbreviated as HANAA-Y. Methods: A Working Group comprised of Aboriginal and non-Aboriginal psychiatrists and mental health professionals with expertise of SEWB in Aboriginal youth was established and a draft version of the HANAA-Y has been produced. Evaluation od cultural applicability, reliability and validity of HANAA-Y is underway in metropolitan, rural and remote locations across Australia. Results: The original HANAA structure, yarning style, and rating has been retained. However, new domains and probe words relevant to young people have been selected. The new domains are as follows: somatic complaints; emotional issues; suicide risk and selfharm; alcohol and drug use; cognition and activity; behavioural and legal issues; strange thoughts and unusual experiences; functioning; stressful life events; and resilience and healing. The HANAA-Y administration guidelines have also been amended to be of relevance to Aboriginal youth. Conclusions: It is expected that HANAA-Y will be a culturally appropriate and useful instrument which can be used by a range of service providers with differing levels of mental health training to screen for SEWB among young Aboriginal people. Introduction: The Portuguese writer and Nobel prize winner José Saramago, is well-known for his sharp depiction and reflection of human condition. The recent events of the COVID pandemic juxtapose with his novel "Blindness" original title: "Ensaio sobre a Cegueira"-, where the expression of fear of dehumanization in a globalized world where any contemporary society may lead to the obligation to follow what power structures define and establish. In his epidemic of blindness, an abandoned psychiatric asylum was chosen by the author as a quarantine ward and the centre of the plot. A question imposes: why an asylum? What is the focus of such a place in a cultural postmodernism message? Objectives: An historic background revision is proposed, glancing at the evolution of the architectural concept of asylum evolved until modern times, while setting a reflection towards today's mental health services and European models. Methods: A narrative review was performed, gathering points of view in the fields of Literature, Architecture, Philosophy, Politics and Economics. Results: Bertolt Brecht claims that "all art is political and the question is simply whether art attacks existing structures of power or refuses such attacks and thereby contributes to the continuation of those structures". Regarding evolution of Asylum Architecture, and the principles which ought to control Modern Construction, In "Blindness", the thematic of space appears above all through the reference of Marc Augé's Non-Place. Initially extended to the city, gives way to the funneling of the space that leads to the "asylum" -a space that centralizes all the action. Through Saramago's description, the floor plans were designed by Portuguese architect José Cardoso. As the first waves of blind people are imprisoned, it is characterized as a heterotopia, the embodiment of Foucaudian panopticism, as it is constituted as a prison whose role is to isolate, even if this attitude is motivated by despair of the government. A mental healthcare system assumes a multidisciplinary approach to psychiatric disorders. Evidence points to a balance between community-based and modern hospital-based care, with frontline services based in the community and hospitals playing a more specialized role. For most European countries, mental healthcare is financed in the same way as other healthcare services, using either national, regional or local budgets and four ways to purchase mental health services are looked at in depth. Therefore, general decisions about such financing may not be in line with mental health policy-maker or planner. Conclusions: Where culture meets anthropology, social policies, legal boundaries and ethic reflections, a time for a joint dialogue arises. How to surpass the differences and heterogeneity between countries? Is there a place for a common system in mental health care? Introduction: Approximately 21.2 million people with im-migrant backgrounds live in Germany, which constituted 26% of its total population in 2020. Approximately 67% of immigrants are from European countries, including Turkey. Turks account for 13.2% of immigrants and constitute one of the largest immigrant groups . The integration processes and life satisfaction of new wave Turkish immigrants are differ from the first and second generation Turkish immigrants. Objectives: The aim of this study was to investigate the impact of perceived discrimination on their integration process and life satisfaction of new wave Turkish immigrants living in Germany. Methods: The Community Integration Measure , Satisfaction with Life Scale , The Perceived Discrimination Scale were used. Pearson correlation and Regression tests were used in our analyses to observe the differences in scale scores according to the variables. The relationship between the scale scores was analysed with the Pearson correlation test. The effect between the scale scores was analysed with the regression test. Results: The findings demonstrated that there was a significant negative relationship between perceived discrimination and social integration as well as life satisfaction . In addition, there was a significant and positive relationship between social integration and life satisfaction of new wave Turkish immigrant participants. Conclusions: The integration process and life satisfaction of new wave Turkish immigrants decreased when they perceive discrimination --- Disclosure of --- Disclosure of

In this study, we aimed to assess 1) the mental health of students from nine countries with a particular focus on depression, anxiety, and stress levels and their fields of study, 2) the major coping strategies of students after one year of the COVID-19 pandemic. Methods: We conducted an anonymous online cross-sectional survey on 12 th April -1 st June 2021 that was distributed among the students from Poland, Mexico, Egypt, India, Pakistan, China, Vietnam, Philippines, and Bangladesh. To measure the emotional distress, we used the Depression, Anxiety, and Stress Scale-21 (DASS-21), and to identify the major coping strategies of students -the Brief-COPE. Results: We gathered 7219 responses from students studying five major studies: medical studies (N=2821), social sciences (N=1471), technical sciences (N=891), artistic/humanistic studies (N=1094), sciences (N=942). The greatest intensity of depression (M=18.29AE13.83; moderate intensity), anxiety (M=13.13AE11.37; moderate intensity ), and stress (M=17.86AE12.94; mild intensity) was observed among sciences students. Medical students presented the lowest intensity of all three components -depression (M=13.31AE12.45; mild intensity), anxiety (M=10.37AE10.57; moderate intensity), and stress (M=13.65AE11.94; mild intensity). Students of all fields primarily used acceptance and self-distraction as their coping mechanisms, while the least commonly used were selfblame, denial, and substance use. The group of coping mechanisms the most frequently used was 'emotional focus'. Medical students statistically less often used avoidant coping strategies compared to other fields of study. Substance use was only one coping mechanism that did not statistically differ between students of different fields of study. Behavioral disengagement presented the highest correlation with depression (r=0.54), anxiety (r=0.48), and stress (r=0.47) while religion presented the lowest positive correlation with depression (r=0.07), anxiety (r=0.14), and stress (r=0.11). Conclusions: 1) The greatest intensity of depression, anxiety, and stress was observed among sciences students, while the lowest intensity of those components was found among students studying medicine. 2) Not using avoidant coping strategies might be associated with lower intensity of all DASS components among students. 3) Behavioral disengagement might be strongly associated with greater intensity of depression, anxiety, and stress among students. 4) There was no coping mechanism that provided the alleviation of emotional distress in all the fields of studies of students.

Introduction The coronavirus disease pandemic forced people worldwide to refrain from going outdoors and partake in outdoor activities to prevent the spread of infection. As a result, the elderly in the community were particularly deprived of their important outdoor activity and social interactions in the wake of COVID-19 [1]. In Japan, the infection rate began to soar by the end of March 2020, with an alarming increase in severe infections. Eventually, the government declared a state of emergency in April 2020, soliciting voluntary restraint from unnecessary activities and interpersonal exchanges [2]. Although the activity restrictions were voluntary in Japan, based on individual judgment and not strong curbs by the government, such as a lockdown, the physical activity time of community-dwelling elderly strongly decreased [3]. Meanwhile, depression in the elderly increased during the COVID-19 pandemic [4]. A study investigating the relationship between physical activity and depression in the elderly during the COVID-19 pandemic reported that elderly individuals who were more physically active had lower levels of depression [5]. Similarly, a rapid systematic review suggested that community-dwelling elderly who frequently engaged in multiple physical activities during the COVID-19 pandemic were less likely to experience depressive symptoms [6]. Numerous studies have examined the relationship between activity or participation and depression among the elderly. They concluded that factors inversely associated with the degree of depression include the duration, intensity, and level of physical activity [7,8], participation in various leisure activities [9], different health-promoting behaviors [10], and the frequency of and variation in social activities [11]. In addition, some studies have described that a higher satisfaction with participation in leisure and other activities was associated with lower rates of depression [9,12]. However, previous studies examined the association between depression and activities such as games, social activities, cultural activities, outings, communication, lifestyle, volunteering, and hobbies individually [9][10][11]. An examination of few activities may confound the effects of other activities. For example, a review on mental health during the COVID-19 pandemic has stated that lifestyle changes have influenced mental health deterioration [13], but the scope of activity domains examined was limited to sleeping and eating habits. Community-dwelling elderly usually engage in multidisciplinary activities in their daily life, including the instrumental activities of daily living, leisure activities with low or high physical demands, and social interactions. Therefore, it is important to reveal what domain of activity or participation affects their mental health to make interventions that consider their actual situation. Activity Card Sort can be used to assess the activity and participation quantitatively. Since physical activity intensity is associated with depression [7], this study used the activity items included in the Activity Card Sort-Japan version [14] for the assessment of leisure activities by distinguishing them into those with high-and low-physical loads in order to have a detailed understanding of the impact of the COVID-19 pandemic on the elderly who were forced to restrict their activities. The ACS was primarily developed in the United States and has since been modified worldwide based on cultural and social contexts [15][16][17][18][19]. The ACS-Australia was also used as an evaluation index to examine the relationship between physical function and activity or participation in the community-dwelling elderly [20]. Furthermore, behavioral restrictions to prevent COVID-19 infection caused social isolation among community-dwelling elderly [21]. As social isolation is associated with a poorer mental health and is one of the risk factors for depression [22][23][24], undesirable physical and mental health effects are significant problems faced by the community during the COVID-19 pandemic [4,25]. The previous study has indicated that objective social isolation includes a lack of social networks and social inactivity [26]. Similarly, previous studies before the COVID-19 pandemic reported that a lack of social networks and social inactivity, indicators of social isolation, were associated with the quantity and quality of activity or participation among community-dwelling elderly [27,28], and voluntary work, cultural activities, hobbies, and shopping successfully predict social connectedness among elderly [29]. However, the avoidance of direct interpersonal relationships and the digitization of interpersonal relationships in the current epidemic situation may change the nature of both social networks and social activities. Therefore, social isolation should be divided into two concepts: a lack of social networks and social inactivity. Moreover, their relationship to depression should be examined. Therefore, this study included the extent of social networks and the extent of social participation as independent variables. This study aimed to understand the changes in the activities and participation patterns of community-dwelling elderly during the COVID-19 pandemic and to identify the activity domains that might lead to depression. --- Materials and Methods --- Study Design A cross-sectional study was conducted using a questionnaire survey from August to October 2020 during the COVID-19 pandemic, and the collected data were analyzed using statistical methods. We followed the Strengthening the Reporting of Observational Studies in Epidemiology guidelines for conducting and reporting the results of this cross-sectional observational study [30]. --- --- Procedure and Outcome Measures From August 2020 to October 2020, the club officers distributed envelopes containing the survey forms to all club members, and collection boxes were set up in the community meeting places. The envelopes contained the questionnaire, a letter explaining the purpose and nature of the study, the possibility of publishing the results, the option to voluntarily withdraw from answering the questions, and a return envelope. The letter and questionnaire clearly stated that responding to these questions would be considered as consent for this study. The ACS-JPN was used to investigate the changes in activities and participation among community-dwelling elderly due to COVID-19. The ACS was initially developed in the United States to evaluate the implementation of a wide range of activities among adults [32] and has since been used as an important assessment measure for community-dwelling elderly [33][34][35]. The ACS has already been used in over ten countries, including Australia, the United Kingdom, and Hong Kong, considering different cultural and historical contexts. The reliability and validity of ACS and its versions have been thoroughly examined. Cronbach's alpha coefficients for the four ACS domains show a high internal consistency of instrumental activities of daily living : 0.93; leisure activity with low-physical demand : 0.92, leisure activity with high physical demand : 0.94, and sociocultural activity: 0.83 [34]. The intraclass correlation coefficient for retest reliability was 0.79 for all domain activities score; domain-wise, IADLs had the highest ICC , whereas the H-leisure domain had the lowest [34]. The ACS-JPN comprised 72 items of occupation, including 26 IADLs, 18 L-leisure, 10 H-leisure, and 18 sociocultural activities; the number of current and previous activities can be quantitatively evaluated in each of these four domains [14]. Furthermore, the activities included in the ACS-JPN were selected from the everyday activities of communitydwelling elderly in five diverse regions of Japan, allowing for sufficient content validity of the scale [14]. Participants were asked to select from the following five alternatives about each activity included in the ACS-JPN compared to the year before the COVID-19 pandemic: "I do the same", "I do less", "I have stopped doing", "I have newly started", and "I have never done before". Then, as per Baum et al.'s manual, the rate of changes in the activities performed before and during the COVID-19 pandemic was calculated by dividing the activity performance score at the time of the survey for each occupation by the score collected before the pandemic [32]. The activity implementation status score at the time of the survey was calculated as 1 point for "I do the same", 0.5 points for "I do less", 0 points for "I have stopped doing", and 1 point for "I have newly started" [32]. Activities that have never been performed before were excluded. Moreover, as for the implementation status score for the year before the pandemic, activities for which the subject answered, "I do the same", "I do less", or "I have stopped doing" were regarded as implemented before the pandemic and were scored as 1. For the scores calculated this way, the activity retention rate was calculated by dividing the implementation status score at the time of the survey, excluding "I have newly started" activities, by the pre-pandemic implementation status score [32]. In other words, the maximum value of the activity retention rate was 1. For each type of activity and participation status, ACS-JPN determined the rate of activity continuation compared to the implementation status at the time of the survey and before the pandemic. The Lubben Social Network Scale-Japanese short version was used to assess the number of social networks. The LSNS-6 is a 6-item 6-point Likert scale used to examine the size and frequency of the respondent's interpersonal interaction networks. A score of ≤12 points indicates that the person is socially isolated [36,37]. The LSNS-6 has a Cronbach's alpha of 0.82, a correlation coefficient for repeatability, r = 0.92, and excellent interrater reliability [37]. Recent studies have frequently used the LSNS-6 to examine the degree of social isolation of communitydwelling elderly in Japan [38,39]. Next, the 15-item Geriatric Depression Scale-Japanese version was used to investigate the level of depression. The GDS-15-J comprises 15 questions to be answered as "yes" or "no" ; the higher the total score , the greater the level of depression [40]. The GDS-15-J has a cutoff point of 6/7 when used as a clinical screening test for depression [41]. The scale has high internal consistency , a significant item-total correlation , and >0.30 for all items, except item 15. It is frequently used to examine depression levels among community-dwelling older adults in Japan; for example, it has been used in cross-sectional studies of the relationship between mindfulness and depression among community-dwelling older adults in Japan and studies of factors affecting social frailty [42,43]. The sociodemographic characteristics of the participants were collected, which included age, sex, living arrangements , usage status of care insurance, employment status, history of hospitalization within the past year, previous medical record, and whether they receive assistance from others to perform their daily activities. Additionally, to ascertain the level of independence in everyday life and leisure activities and suitability to the study criteria, we used the Japan Science and Technology Agency Index of Competence . The JST-IC is a self-administered questionnaire developed in response to recent lifestyle changes in community-dwelling elderly due to technological advancements and measures their ability to relate to this modern life [44,45]. It comprises 16 items to be answered as "yes" or "no", with one point given for "yes": the higher the total score, the higher the activity capacity. The reliability and validity of JST-IC have been examined , and standardized values have been developed for ages 65-84 years based on data obtained from 2573 elderly individuals in Japan [45,46]. Furthermore, in a large Japanese longitudinal study of community-dwelling older adults, the JST-IC was used as an index of activity capacity among this population to analyze the relationship between activity capacity and cognitive frailty and to extract factors that influence participation in meaningful activities [47,48]. --- Data Analysis All statistical analyses were carried out using the Statistical Package for the Social Sciences for Windows . In addition, continuous variables of the eligible participants were tested for normal distribution using the Shapiro-Wilk test. We conducted a group comparison to confirm whether attributes such as age, sex, and living arrangements affect depression, the number of social networks, and activity retention rate before and after the pandemic. Pearson's correlation, unpaired t-test, and one-way analysis of variance were used for normally distributed data. In contrast, Spearman's correlation, Mann-Whitney U, and Kruskal-Wallis tests were used for non-normally distributed data. In addition, the Friedman test was used to compare the activity retention rate for the four ACS-JPN domains compared with pre-pandemic levels, and Wilcoxon's signed-rank test with Bonferroni correction was used for the post hoc test. Next, factors affecting depression during the pandemic were examined using Poisson regression analysis with a generalized linear model , with the GDS-15-J as the dependent variable, the LSNS-6 and ACS-JPN activity retention as independent variables, and age, sex, and living arrangement as the adjusted variables. Poisson regression was selected because the GDS-15 data had a non-normal Poisson distribution. Poisson regression can simultaneously handle categorical and continuous variables as explanatory variables. The crude model revealed the ways in which the focal factors of this study affected the participant's depression levels without covariates of other demographical factors. Further, models 1, 2, and 3 adjusted for age, sex, and living arrangement were tested and compared with the crude model to determine whether these focal factors affected the depression levels via correlation or cross classification with respect to each demographical factor. Model 1 was adjusted for age, Model 2 was adjusted for age and sex, and Model 3 was adjusted for age, sex, and living arrangement. There are some studies reporting the association between the characteristics of the older adults and their activity and participation [1,49]. Missing data for dependent, independent, and adjustment variables were excluded from the sample. A p-value of <0.05 was considered as statistically significant. --- Ethical Considerations This study was approved by the Ethical Review Committee of Chubu University . We verbally explained the purpose and content of this study to all officers of the senior citizen clubs. Each member was enclosed with an explanatory note and a questionnaire, and it was clearly stated that the answer to the questionnaire would be regarded as consent to participate in this study. The study instructions also indicated that participation in this study was voluntary and that no one would be disadvantaged if they did not participate; that they could withdraw from this study at any time; that they could not delete the data after the analysis was completed; that all data would be handled in encrypted form; that the questionnaire would take approximately 20 min to complete; and that they would not be forced to answer the questionnaire if it was physically or mentally demanding. --- Results --- Participant Characteristics and Activity Implementation Status Of 107 community-dwelling older adults from the senior citizens club, 81 responded to the questionnaire . Four of these respondents required nursing care, and three had missing values in the responses. Therefore, 74 people were included in the final analysis years, 40 males, 34 females). None of the respondents were working full-time. A total of 20 people lived alone, of which, 15 were females, 36 lived with a spouse only, and 18 with other family units. The mean JST-IC score was 11.4 , which was higher than the national mean score of 9.7 , indicating that our study sample had activity capacities that exceeded the national average for daily living capacities of community-dwelling elderly [46]. Using the 6/7 cutoff value for the GDS-15-J, 12 participants were depressed [41]. Meanwhile, the LSNS-6 cutoff value showed that 16 participants were in the socially isolated category [36]. Moreover, 15% of the elderly living alone and 24.1% of the elderly living with a family were socially isolated. The mean activity and participation scores as measured by the ACS-JPN at the time of the survey were: IADLs : 14.90 , L-leisure : 8.64 , H-leisure : 3.67 , and sociocultural activity : 7.20 . During the pandemic, five respondents did not perform H-leisure activities, and one did not engage in any sociocultural activity. All data collected from the 74 respondents are summarized in Table 1. 3 11.41 12.00 5.00 5.00 16.00 0.001 GDS-15-J 4 -3.14 2.50 4.00 0.00 12.00 0.000 LSNS-6 5 - Age, LSNS-6, and implementation of L-leisure, H-leisure, and sociocultural activity were usually distributed. However, data distribution had non-normality in GDS-15-J, IADL implementation, and the four domains of activity retention calculated by ACS-JPN. A sex-related difference was noted only in the status of IADL implementation at the time of the survey. Among the 26 IADLs in the ACS-JPN, men showed a mean of 13.6 , and women showed a mean of 16.5 ; the difference was significant . Accordingly, Table 1 shows the results by sex for the status of IADL implementation. There was no statistically significant relationship between these demographic factors and the activity retention rate calculated by ACS-JPN, the level of social isolation by LSNS-6, or the level of depression evaluated using the GDS-15-J. The results of the analysis of the effects of different demographics such as age, sex, and living arrangement on the GDS-15, LSNS-6, and ACS-JPN are listed in Table 2. 2 Spearman's Chi-square test. 3 Non-paired t-test. 4 Mann-Whitney test. 5 One-way analysis of variance. 6 Kruskal-Wallis test. . --- Changes in the Number of Activities Compared to Pre-Pandemic Status The mean activity retention rates at the time of the survey compared with those before the COVID-19 pandemic were 0.86 points for IADL, 0.82 points for L-leisure, 0.67 points for H-leisure, and 0.64 points for sociocultural activities; in all activity domains, decreases occurred during the pandemic, according to the pre-pandemic reference value of 1. Items with a ≥30% decrease in activity retention were "shopping for clothes/shoes" and "using public transport" in IADLs, "taking photographs", "handcrafting/knitting", "coloring books/collage of pieces of colored paper", and "karaoke" in L-leisure, and "taking a day trip", "going to a garden/park", "going to a spa", and "traveling" in H-leisure. The maximum number of activities affected was in the sociocultural domain: "visiting family/friends who are ill", "visiting friends/acquaintances", "eating out", "doing activities with children/grandchildren", "going to places of worship", "gathering with family/relatives", "going to a coffee shop with family or friends", "attending a community/senior group", "going to alumni", "studying for personal advancement", "volunteering", and "going to the library" . In the activity domains, there was a statistically significant difference in the activity retention rates, with H-leisure and sociocultural activities being significantly lower than IADL and L-leisure . --- Effect of Activity Retention and the Number of Social Networks on Depression in the COVID-19 Pandemic The Poisson regression analysis using a GLM showed that activity retention rates of L-leisure and the number of social networks were significant, influential factors for depression during the pandemic . The results were similar with and without the age, sex, and living arrangement as adjustment variables. quaintances", "eating out", "doing activities with children/grandchildren", "going to places of worship", "gathering with family/relatives", "going to a coffee shop with family or friends", "attending a community/senior group", "going to alumni", "studying for personal advancement", "volunteering", and "going to the library" . In the activity domains, there was a statistically significant difference in the activity retention rates, with H-leisure and sociocultural activities being significantly lower than IADL and L-leisure . --- Effect of Activity Retention and the Number of Social Networks on Depression in the COVID-19 Pandemic The Poisson regression analysis using a GLM showed that activity retention rates of L-leisure and the number of social networks were significant, influential factors for depression during the pandemic . The results were similar with and without the age, sex, and living arrangement as adjustment variables. --- Discussion --- Participant Characteristics and Activity Implementation Status Globally, the prevalence of depression among community-dwelling elderly has been reported to be 17.1%, while 28.1% of the community-dwelling Japanese elderly have depression [50,51]. At the same time, the prevalence of depression among our study participants was relatively low, at 16.2%. In previous studies measuring social isolation among community-dwelling elderly using the LSNS-6, a 21.2% prevalence was reported in Germany and 49.8% in Malaysia, 31.0% of elderly living alone and 24.1% of those living with family in previous Japanese studies [52][53][54]. However, in this study, only 15.0% of the elderly living alone and 24.1% of the elderly living with their family were judged as socially isolated. A possible explanation for this low prevalence of depression and social isolation among the elderly who lived alone in this study is that the participants belonged to a senior citizens club, which comprises a group of people who participate in activities and interpersonal relationships, allowing them to interact with other members of the society outside of their family. Furthermore, the results of the JST-IC activity capacity analysis showed that the mean score was 11.4 , which was higher than the national mean score of 9.7 [46], indicating that our study sample had a higher activity capacity than the standard Japanese community-dwelling elderly. It is known that socially active people have a lower risk of developing depression, which was further corroborated by our results [55]. However, it is noteworthy that the statistics for the prevalence of depression and social isolation were based on the studies conducted before the COVID-19 pandemic, and their results may not be completely comparable. The levels of depression and social isolation in society have changed drastically compared to the pre-pandemic era [56]; however, since ours is a cross-sectional study during a COVID-19 pandemic, the extent of change remains unexplored. Furthermore, a sex-related difference was observed only in IADLs measured using the ACS-JPN, and the number of IADLs in women was higher than in men. However, no sex-related differences were observed in L-leisure, H-leisure, or sociocultural activities. Moreover, age and living arrangements did not affect any of the four domains of ACS-JPN. Previous reports suggest that women traditionally tend to perform household chores as part of their role at home [57], which may explain the women's participation in IADLs, even among the elderly. In addition, IADLs is one of the activities necessary for maintaining community life among the domains of "activities and participation." Women formed a more significant proportion of the elderly living alone, which might influence this result. --- Comparison of Activity Retention Rates before and during the Pandemic Compared to the pre-pandemic status, we found a considerable decrease in activity retention rates in all domains of the ACS-JPN. After the Japanese government declared a state of emergency in April 2020, all activities of the senior citizens' clubs were suspended. At the time of this study, some activities had resumed with restrictions, such as limiting the number of participants. However, curbs on activities with a high infection risk, such as eating, drinking, and karaoke, were still in place. The H-leisure and sociocultural activities of the ACS-JPN included several activities that were performed outside the home and involved interpersonal interaction [14]. During the survey, the government continued to call for self-restraint in activities; accordingly, the community-dwelling elderly avoided "going out" as a leisure activity and social interaction with others, which lowered the overall activity retention rate in all four domains. Furthermore, comparing the four activity domains, the activity retention rate was significantly lower for H-leisure and sociocultural activities than for IADLs and L-leisure. Since it was not the purpose of this study, the reasons for the decrease in outdoor activities and activities involving interaction with others could not be found in this study. However, the decline in the retention rate for these domains was greatly influenced by the environmental impact of infection prevention measures put up during the pandemic. This could be due to requests from the local government for infection prevention [2] or the fear of infection [58]. The correlation between the frequency and anxiety of going out among community-dwelling elderly detected in a survey conducted during the COVID-19 pandemic [1] supports this consideration. This study quantified the activity retention rates using the ACS-JPN to classify and measure activity or participation in four domains to understand the specific changes in activity or participation patterns during the pandemic. In addition, the more affected activities in the four ACS-JPN domains included IADLs of "shopping for clothes" and "using public transportation" and the L-leisure, "karaoke", both of which were deemed unnecessary outings and activities by the Japanese government associated with a high risk of infection, probably decreasing the activity retention rate. Notably, "karaoke" was eliminated due to the associated high infection risk, even though it is commonly performed by the Japanese elderly, resulting in lower retention rates for L-leisure [14]. --- Factors Associating Depression in the Community-Dwelling Elderly during the COVID-19 Pandemic The GLM results show that the activity retention rate of L-leisure activities and social isolation as the number of social networks were associated with depression during the pandemic. Among the four domains, only L-leisure activities were significantly associated with depression during the COVID-19 pandemic, suggesting the importance of low physically demanding leisure activities at home for mental health. A study investigating leisure activities and well-being during the pandemic suggested that maintaining time for leisure activities that were easy to perform during the pandemic can help to maintain a sense of general well-being, which concurs with our study results [59]. In addition, the number of social networks was a factor influencing depression. This factor is a variable determined by the frequency of interpersonal interactions and the number of partners. The effects of the degree of social isolation on depression are supported by the existing literature [60]. Social isolation comprises two factors: the number of social activities and social networks [26]. In this study, social activity was not associated with depression, but the social network was. The reason why the number of social networks was associated with depression was that, although electronic media such as telephones and videophones were frequently used as interaction tools during the COVID-19 pandemic [61], there were individual differences in the social interactions that community-dwelling elderly had with family, relatives, and friends using these electronic media [62]. Those who could use electronic media may have maintained a greater number of social networks than those who could not, despite restrictions on going outside and direct interpersonal interactions. There was a strong sense of anxiety in Japan about infection due to the lack of information on COVID-19 and the lack of prevention and treatment for COVID-19 . Therefore, social networks shared the sense of anxiety that both sides had and may have had a buffering effect on these anxieties. It is possible that social networks led to a decrease in anxiety, which, in turn, led to the prevention of depression. In this study, neither H-leisure and sociocultural activities nor IADL retention rates were associated with depression. Opportunities for social participation and physically demanding activities are often reported to prevent depression since they involve a change in scenery outdoors and interaction with others [55,63,64]. On the other hand, an IADL decline has also been reported to correlate significantly with depression [65]. These differences may be attributed to the cross-sectional nature of this study during the COVID-19 pandemic; when the highly infectious virus was widespread, there was no obvious treatment, and the elderly at a high risk of serious illness refrained from acting anyway [66], which was significantly different from the previous studies. In this study, all participants uniformly stopped performing H-leisure and sociocultural activities to prevent infections, so this study did not identify the association with depression. In addition, the type and content of H-leisure and sociocultural activities conducted, as well as the preparedness of participants, may have changed during the pandemic. A qualitative study during the COVID-19 pandemic revealed that community-dwelling elderly avoided interpersonal interactions for fear of infection and had negative psychological conditions such as anxiety [67]. In addition, community-dwelling elderly took a new perspective on activities and participation, such as re-engaging in creative leisure activities [68], rediscovering family time and bonds [69], and innovating communication and using technology [70]. Therefore, sociocultural activities, a variable that affected depression before the COVID-19 pandemic, were not found to be an influencing factor in this study, not only because of a consistent and significant decrease in the number but possibly also because of qualitative changes. Furthermore, the participant was originally a group of physically and mentally functional people who could perform IADLs well. Even with COVID-19, they needed to perform them for their lives and had a high activity retention rate. Hence, it was challenging to find an association with depression. In this way, it is important for the quality health promotion of community-dwelling elderly to discuss the relationship between activity participation, social isolation, and the degree of depression in light of such an infectious pandemic. Further prospective longitudinal studies are warranted to consider the long-term impact of the COVID-19 pandemic. --- Practical Implications and Future Research In this section, we discuss the assessment and practical interventions by rehabilitation professionals to prevent a decline in L-leisure activities and social isolation during such pandemics for reducing the risk of depression based on existing evidence and the results of this study. Recently, the concept of health promotion has gained popularity, emphasizing that true health is not merely the absence of a disease but involves the promotion of a better state of being and the provision of support to the elderly in living a life with purpose [71]. However, despite the spread of this concept of health, more efforts from the geriatric rehabilitation professionals are needed to analyze the relationship among activity or participation, the number of social networks, and depression levels in the community-dwelling elderly, especially now that their activity has been restricted to prevent the spread of COVID-19 infection and social isolation has increased [21]. By incorporating the unique perspective obtained by performing a comprehensive activity assessment and activity domain-specific examination, this study examined the relationship between activity restraint and mental health during the COVID-19 pandemic. Furthermore, we aimed to provide essential information on rehabilitation intervention based on the activity or participation to minimize or eliminate the negative impact of COVID-19 on the communitydwelling elderly. Therefore, our result will help the rehabilitation professionals in selecting appropriate intervention methods during and after the COVID-19 pandemic. The results of this study emphasize the importance of maintaining low-physical-load activities and the number of social networks to prevent depression when individuals, regardless of sex, are forced to refrain from their daily outdoor and interpersonal interactions. Monitoring participation in physical and leisure activities has been reported to be a predictor of mental health status and is thus essential for depression prevention [8,72]. In addition, those who exercise more frequently were more strongly associated with depression than those who carry out only housework [73]. When external factors limit outdoor activities during a disaster such as COVID-19, it is important to prevent depression by maintaining, at a minimum, low-physical-load activity and personal interaction with others via video calls or letters. Fortunately, this has been possible recently using digital platforms, phones, and the Internet [74]. The effectiveness of technology to allow interpersonal interaction without physical contact has been realized during the pandemic and must be extensively employed to improve the health of the elderly. However, some elderly cannot adapt well to these new digital communication tools; therefore, the cultivation of information technology literacy is an issue for the future [75]. In contrast, the importance of direct interpersonal interaction has also been reaffirmed by research reports that show that face-to-face interactions are more beneficial to the mental health of the elderly than digital interaction [76]. In the event of a disaster, such as the COVID-19 pandemic, rehabilitation professionals should collaborate with local public health professionals and policymakers to contribute to the development of elder-friendly community networks and recreational facilities from the perspective of a population approach to combat the social isolation of the elderly. They can also work with population-based approaches to assess the physical and cognitive abilities of individual community-dwelling elderly and consider activities, events, transportation, and communication methods that meet their unique needs [77]. Hitherto, promising practices by geriatric rehabilitation professionals have resulted in an improved participation in social activities, social interaction, QOL, and reduced healthcare costs. Still, these are often marred by organizational and institutional barriers [78,79]. Therefore, post-COVID-19 geriatric rehabilitation practice requires a community-centered approach that assesses the local stakeholder's needs and collaborates with the local government and the community while utilizing existing welfare programs for the elderly [80]. Future research should be conducted to study different interventions, test their effectiveness, and develop strategies based on our results to prevent depression among community-dwelling elderly in the post-COVID-19 era based on the results of this study. For example, by comparing changes in the number of activities or extent of participation and the number of social networks of community-dwelling elderly after the COVID-19 pandemic and examining the causal relationship with depression, areas in need of specific support can be found in detail. In addition, direct support can be considered by finding participants who do not recover in the number of activities or extent of participation and the number of social networks among the community-dwelling elderly after the COVID-19 pandemic. Thus, longitudinal studies evaluating different factors affecting depression among community-dwelling elderly during and after the COVID-19 pandemic must examine the long-term effects of social isolation and physical activity restrictions and identify specific support. --- Limitations In this study, activity retention during and before the COVID-19 pandemic could be calculated retrospectively, but there were no pre-COVID-19 pandemic data for depression and social isolation. In other words, it is impossible to genuinely discuss whether the depression and social isolation scores in this study were affected by the COVID-19 pandemic. This cross-sectional survey included a small number of subjects recruited from a single senior citizens' club in a specific area, and the club members may have been a highly active group to begin with, as indicated by the results of the JCT-IC. Participation in the club activities was freely chosen by the members; although there were some restrictions due to the prevalence of COVID-19, opportunities for social participation were provided. These factors may have introduced a selection bias, which limits the generalizability of this study. Moreover, since this was a connectable survey and we had to get the survey questions approved by the senior citizens' club officers, educational history and income were not included in the survey items at their request. However, when considering interventions for the elderly, attention should be paid to lifestyle, educational history, and income as critical social determinants of health [81,82]. Therefore, future studies should include these factors in their purview. Lastly, because we could not conduct a GLM with standardized independent variables, we could not compare the coefficients among the independent variables. --- Conclusions This study revealed that the COVID-19 pandemic led to a significant decline in the overall rate of activities and participation in the community-dwelling elderly in Japan. Notably, participation in high-physical-load and sociocultural activities, expected to be conducted outside the home and involve physical interactions, was decreased. This decline was in response to the government's request suggesting people to stay at home and refrain from participating in activities to prevent COVID-19 infection. Furthermore, among the different activities, a low retention rate for activities involving a low physical load and a high degree of a lower number of social networks were associated with depression during the COVID-19 pandemic. Therefore, even in social situations where people are forced to refrain from activities due to infectious diseases or disasters, it is necessary to provide community support to enable people to enjoy activities that can be conducted indoors and foster interpersonal interactions. Appendix A provides the detailed results obtained for the sub-items of the four activity domains studied for analyzing the activity retention rate using ACS-JPN. The activities were ordered from highest to lowest activity retention. For example, an activity retention rate of 0.5 means that only 50% of the activities were implemented compared to before the COVID-19 pandemic. See Section 2 for the method used to calculate activity retention rates. --- Data Availability Statement: The data supporting the findings of this study are available from the corresponding author, M.T. , upon reasonable request. --- --- Appendix A

We determined the changes in the activity or participation of the community-dwelling elderly in Japan during the COVID-19 pandemic and identified the activities leading to depression. This will allow us to evaluate rehabilitation interventions that can be used to minimize or eliminate the negative impact of COVID-19 on today's community-dwelling elderly. Herein, demographics, activity or participation (Activity Card Sort-Japan version: ACS-JPN), the number of social networks (Lubben Social Network Scale: LSNS), and depression (Geriatric Depression Scale: GDS) were examined in 74 community-dwelling elderly in Japan from August to October 2020. A statistical analysis was conducted to determine the effect of demographics on GDS, LSNS, and ACS-JPN, to compare the activity retention rates of the four domains using ACS-JPN, and to extract the activities that might affect depression using a generalized linear model. The results show that the retention of leisure activity with a high physical demand (H-leisure) and sociocultural activities was significantly lower than instrumental activities of daily living and leisure activity with a low physical demand (L-leisure). L-leisure and the number of social networks were possible risk factors for depression during the pandemic. This study highlighted the importance of maintaining the number of L-leisure and social networks at home to prevent depression in community-dwelling elderly when they could not perform outdoor activities and direct interpersonal interaction.

Background During the 1980s, a period of cultural and religious oppression of the Lhotshampas resulted in the relocation of over 100,000 refugees to neighboring Nepal [1]. Between 2008 and 2011, around 49,000 Bhutanese refugees were resettled to the United States [2]. In 2011, the Office of Refugee Resettlement began receiving reports of suicides amongst the resettled Bhutanese population. During 2009-2012, the rate of suicides among Bhutanese refugees relocated to the United States was 20.3/100,000 persons, nearly twice the rate of suicide in the US population as a whole [3,4]. Alarmed by the elevated suicide rate among the Bhutanese refugee population, ORR requested the Refugee Health Technical Assistance Center and the US Centers for Disease Control and Prevention to conduct an investigation into the suicide deaths in this community. The following study is a summary of the findings from this investigation spearheaded by the CDC. Mental illness is an important risk factor for suicidal behavior, particularly depression and substance abuse [5][6][7][8]. Refugees are considered to be at higher risk for mental illness than the general population [6,9]. Risk may stem from events in their country of origin that led to emigration, such as violent acts or torture [10][11][12][13][14]. Relocation toa new country may result in lack of social support, economic instability, and difficulties integrating into a new culture [12,15], which may further exacerbate risks for mental illness among refugee populations. Socioeconomic problems alone-including financial problems and substance abuse-have been found to contribute to suicide risk [16]. The experience of ethnic discrimination is associated with poor mental health [17]. These factors, along with the stigma that often accompanies mental illness, can complicate efforts to seek treatment after resettlement [13]. Trauma has been linked to suicidal behavior in refugee populations [18,19], however, more research is needed to better understand related pathways and more precise risk profiles. Suicide is a leading cause of death in many South Asian countries [20][21][22][23], however there is little research exploring risk factors [24]. Due to the dearth in literature related to suicide amongst refugee populations and varying findings related to risk factors for suicide around the world [24][25][26][27], dynamic investigation methods are needed to better disentangle circumstances precipitating lethal self-harm. The psychological autopsy method provides an opportunity to gather specific detail about the lives of the decedent individuals, and the events surrounding their deaths [28,29]. The method has been successfully used across cultures [30,31]. In this study, we applied the PA approach to understand factors associated with suicide among Bhutanese refugees resettled to the United States. Psychological autopsies were conducted with family members and close associates of the decedent to elicit underlying motivations and circumstances of each suicide and to identify potential avenues for prevention or intervention. --- Methods --- Participants and Procedures Between 2009 and 2012, 16 Bhutanese refugee suicide deaths were identified through the ORR and reported to the US CDC. CDC investigators traveled to the location of each reported deaths and, working alongside the decedent's local resettlement agency, identified one proxy informant, a family member or close contact over the age of 18 who knew the decedent well. Following informed consent, the survey protocol was conducted face-to-face by a trained interviewer in the participant's preferred language in the participant's home. Interviewers were recruited from the Bhutanese refugee community in each city and trained in research ethics, interview techniques, and referral procedures in the event that a respondent became distressed during the interview. Only deaths reported by ORR were investigated in the study. The study was approved by the CDC's Institutional Review Board . --- Instruments The investigation conducted modified psychological autopsies among the completed suicides, which were designed to describe the suicide circumstances, demographic and psychological characteristics, post migration experiences, and elicit cultural perspectives and experiences surrounding the suicides. The questionnaire employed a mixed methods framework in order to garner sufficient contextual information and provide cultural perspectives on suicide and the refugee experience. Selected questions and instruments were included from autopsy interviews conducted by Appleby et al. [32] and a previous investigation in Bhutanese suicides in Nepal [6]. The questionnaire included demographics, mental health history, details of the suicide, and pre/post migration difficulties. The following standard tools, previously validated against clinical diagnoses and utilized in culturally diverse groups, were used to assess the extent of possible mental illness and trauma. --- Hopkins Symptom Checklist-25 Assessed symptoms of anxiety, depression, and psychological distress. The instrument has been employed with culturally diverse groups, including refugee populations [33][34][35] and was validated against clinical diagnoses [36,37]. --- Harvard Trauma Questionnaire Enumerated traumatic events experienced in Nepal/Bhutan and assessed symptoms of posttraumatic stress disorders . The instrument has been used extensively in refugee populations, including Nepali [34,37]. Open ended questions were included to elicit additional information on the circumstances of the death, perceived causes and precipitating events, help-seeking behaviors, migration difficulties, and potential prevention strategies. --- Analysis Due to the small sample size, simple descriptive analysis was conducted for quantitative data. Qualitative data were analyzed using content analysis [37] by coding common themes related to perceptions of suicide causation, presence of suicide communication, warning signs, and informantidentified resources for the prevention of future suicides. Data were entered into Microsoft Access . Analysis was performed using SAS for quantitative data and MaxQDA 10.0 for qualitative data. --- Results Of the 16 confirmed suicides, 14 close contacts of the suicide decedent consented to be interviewed. Psychological autopsies were conducted in Arizona, Colorado, Kansas, Maryland, New York, Ohio, Pennsylvania, Tennessee, Texas, and Washington. Proxy informants were mostly male and knew the decedent before resettlement in the United States . Relationships between the proxy informants and the decedent varied across cases, including spouse , parent , sibling , other relative , son/daughter , close friend , and neighbor . Thirteen had known the decedent for more than 1 year, and 6 lived with the decedent. --- Participant Characteristics The majority of decedents were males , married , completed primary or secondary school , and Hindu . Most decedents were reported to identify as Brahmin or Chhetri. Ten did not have regular income, and 10 were not providers of the family . Five were said to have been in fair or poor general health before death. Open ended responses indicated that many of the decedents were having financial trouble and experienced extreme stress related to work. One respondent indicated that, '' did not get what he expected when he arrived in the US; didn't have a job, and the 9 months of support he received was not enough to enable him to make a transition.'' Shifting to a different occupation, schedule, and social setting was difficult for many cases. A wife of one case noted that, ''I guess it was his work. He had to stand all day, he got tired. He used to say that when he was in Nepal, he didn't have to stand all day.'' Another mentioned that the decedent was ''stressed about his new job, paying the bills and being able to support his parents.'' --- Details of Suicide Median time from arrival in the United States to death was 4.2 months. This varied by gender where women had a shorter time frame compared with men months). Hanging was the only method reported amongst the informants. Most deaths occurred within the home . Five suicides occurred while the decedent was completely alone and seven occurred while someone else was in another part of the house. Only one case ever talked about suicide. Two were reported to have consumed alcohol on the day of suicide. A close friend of the decedent remembered, ''He used to drink in the camp. He would threaten his wife with suicide. The day he died, he was already drinking at 11 a.m.'' Most informants believed that the suicide was unplanned, but they did state that warning signs included social withdrawal and frustration with current situation. No cases left a suicide note. --- Health, Mental Health Symptoms, and Family History One case had a family member who was treated for a mental health condition, and seven had experienced the suicide of a family member or close friend. Three had previously attempted suicide, of whom, only one was reported to have sought professional help. One case with a previous suicide attempt, subsequently lost two of his four children to suicide. The family member interviewed commented that, ''he never talked about his emotions directly; he never said he wanted to commit suicide''. Two were thought to have been using illicit drugs. Because some respondents in the psychological autopsies did not know about the mental status of the decedent, we were only able to assess symptoms of all mental health conditions in some of the decedents . Seven of the 14 individuals screened positively for any symptoms of the 4 conditions . Four decedents had reported symptoms suggestive of anxiety; three of five cases had symptoms suggestive of depression; two of five met the definition for being distressed; and one of 13 had symptoms of PTSD. 2 weeks before the suicide, this individual with symptoms of PTSD had run out of medication; family members were unable to navigate the health system to obtain refills. Another individual was reported to have exhibited some symptoms of confusion. The interviewee reported, ''A few times in the previous months he had become disoriented-he went out and ended up at a neighbor's house. He talked to himself. He would feel that he had to go away from and flee. His wife would have to go retrieve him.'' The most prevalent traumatic events endorsed in the HSC were lack of nationality or citizenship and having to flee suddenly . --- Post Migration Difficulties and Social Support The most common post-migration difficulty listed was language barriers , where respondents commented that the immediate need to speak and understand English was frustrating and seemed to contribute a sense of hopelessness . One respondent mentioned that, "The prxoblem of language, it's difficult to get a job…having to talk to people in English, only English. There's no Nepali speaking ESL teacher. It makes it too difficult." One female case was described to be a result of barriers to education. The informant described that, "her desire was to be in school, her sister was enrolled and she really wanted to go and do well. If she had gotten the chance to study, suicide would not have happened." Many of the respondents stated that the decedent experienced difficulty maintaining cultural and religious traditions. Half of the respondents reported the decedent having a person to confide in. Two cases were thought to be isolated individuals. One informant noted that the decedent was, "always alone, indoors, and stayed at home." Separation from family and worrying about family back home were commonly endorsed as factors deeply contributing to the individual's suicide . Familial fragmentation not only caused worry and anxiety about missing family members, but also forced some individuals to take on untraditional family functions. For example, one young female was mentioned to be the only employable person in a household, and thus was required to take on the role of wage-earner. This was cited as a contributing factor to her suicide. In another case, the young woman wanted to pursue an education, but was required to take a job to support her family. The interviewee noted, "Life in America was hard…Her brother could have taken a lot of that pressure off her. If all the family members could have been brought together, not fragmented, this could have been prevented. Separation from family is huge in our community…" Many respondents admitted frustrations regarding family fragmentation, stating that resettlement agencies should prioritize placing families in the same city and claiming that this might help prevent future suicides. Despite the emphasis on family separation, few cases reported there being relationship conflicts at home. --- Prevention Strategies Informants commented readily on needed support to prevent and intervene in suicidal behavior. Participants noted a lack of necessary resources to help families through the refugee transition. One informant reported that suicides could be prevented through "more guidance and support from agencies. Refugees are expecting more than is available to them." This reflects a feeling that the process had been insufficient, and that the refugees had not been given enough money or education to allow them to make a new start. Locally identified prevention measures included training the community in communication strategies to address suicide, engaging newly resettled families immediately into social and educational opportunities, and enhancing and improving resettlement services and support. --- Discussion Within the recent suicides amongst Bhutanese refugees in the United States, most decedents were unemployed men who committed suicide within 1 year of arrival, and who experienced post migration difficulties including language barriers, employment and financial problems, worries about family back home, and difficulty maintaining cultural and religious traditions after resettlement. From the broader epidemiological investigation of Bhutanese refugee suicidal behavior in the United States, the prevalence of reported suicidal ideation was low , but likely underestimated due to stigma, while other symptoms of anxiety, depression, PTSD, and mental distress were found to be higher [4]. In this refugee population, significant risk factors for suicidal ideation included: not being a provider of the family, having low perceived social support, screening positive for anxiety, depression, and distress; and increased family conflict after resettlement. In Nepal, and in our study population, the most common method for suicide is hanging [20]. Previous reports found that suicide in immigrant and refugee populations may be less common compared with the general population [38,39]. However, studies have also indicated that suicidal ideation may be higher in camps prior to migration where one study reported that, among women who screened positive for a common mental disorder, 91 % reported having had thoughts of suicide in the previous month [14]. Recent reports in Nepal identified suicide as the leading cause of death amongst women of reproductive age [21,40]. Further investigation found mixed relationships between caste and suicide where more deaths occurred among higher castes, but more suicidal thoughts were endorsed in lower castes [20,21]. Other studies have indicated that, in south Asia, suicide is often a performative act used for social protest [41], a reaction to strained relationships and violence [20,23,42], and impulsive reactions to trying social circumstances [43,44]. The Institute of Medicine investigated 12 suicides within the refugee camps in Nepal and found that older men were more likely to have completed suicide compared with those that attempted and failed [6]. Moreover, all known cases used hanging and there were no caste, ethnic group, or religion associated with suicide. Similarly, in our study, no suicides occurred within individuals that were identified as lower caste. This is consistent with previous reports that more suicides are documented amongst high caste individuals in Nepal [20,21], however, suicide deaths are difficult to capture in Nepal as there is no vital surveillance system. It may be that lower castes tend to live in more remote regions and have less access to infrastructure . Additionally, Kohrt et al. [45] found that lower castes in Nepal are more likely to suffer from depression, likely due to poverty. Further investigations into caste and poverty will shed more light on the complex relationship. Finally, the IOM investigation in Nepal found that those who experienced gender-based violence and lived in poor conditions were more likely to attempt or complete suicide [6]. Although gender-based violence did not surface as a perceived driver of suicide, post migration difficulties and vulnerabilities were a concern. Interestingly, despite the existence of a Nepali word for suicide, aatmahatya , the term was not used by the participants. The preferred term used to describe suicide and suicidal behavior was jhundera maryo, literally meaning "to hang oneself". This reflects the commonality of the particular method and may serve to distance the moral implications that the term aatmahatya carries. Bruffaerts et al. [46] found that only 14 % of persons exhibiting suicidal behavior in low and middle income countries pursue medical treatment, compared with 52 % in highincome countries, and low-income country informants are less likely to disclose need for treatment. This is corroborated in our findings as few individuals communicated intent to die and very few sought professional help. Lack of help seeking behavior may highlight a gap between the need for mental health services and their use, as well as the availability, accessibility, and perceived efficacy of such services. Also, within our sample, time between arrival and suicide varied across gender where women appeared to be more vulnerable closer to arrival. Historic legislation has also compounded the refugee resettlement experience. In 1996, the Public Responsibility and Work Opportunity Reconciliation Act reduced the duration of federal support services available to refugees and shifted focus away from education and vocational training programs [47][48][49]. This may increase stress on resettled individuals during their most vulnerable period as they now must support themselves much faster. Prevention and intervention programs may be well suited to monitor refugees closely within the first year and continue to screen for depression and suicidal intent. Separation from family and community was endorsed widely as a significant contributor to most suicides within our study. After 20 years in the camps, many social ties and professional identities were rebuilt, only to be dissolved again in the process of third-country resettlement [6]. Terheggen [50] noted similar findings in Tibetan refugees. Individuals that were unable to speak their native language and faced threats to their cultural and religious traditions had significantly worse health and well-being. In addition to cultural assimilation barriers, refugees experience a devaluation of their professional skills and face subsequent economic challenges both in refugee camps and after migration where language skills and institutional barriers must be overcome before employment is viable. Chase et al., found that Bhutanese refugees preferred to cope independently and tended to blame themselves for failures [51,52]. Additionally, findings from Sri Lanka suggest that suicides are understood and used as performative acts of protest or retaliation, often following family conflict [44,53]. Informants suggested that resettlement programs consider better placement so that families and previously developed social ties remain intact, language courses be taught by instructors with similar cultural background, and social services be made more accessible to migrants. Improved social support is shown to enhance physical and mental health as well as increase quality of life [54,55]. Therefore, improved community-based support, outreach , and social support; enhanced mental health screening [56]; and person-centered mental health programs, might help to build resilience in this group. --- Limitations While the PA method is valuable, all findings were elicited from interviews with family members, friends, and community members of the decedent and were therefore, limited in depth and may be biased. The results of this investigation describe a specific cluster of refugee suicides in the US and cannot be generalized. Only those suicides that were reported to ORR were included in the investigation, and the researchers did not undertake any active case finding. The survey instrument included tools that explored symptoms of depression, anxiety, and PTSD. It is possible that these diagnostic categories are not sufficient to describe the experiences of the resettled population. --- New Contribution to the Literature As suicides continue to climb as a public health threat, such events in refugee populations are understudied. This unique multi-state investigation suggested that suicides within the Bhutanese refugee populations may be connected with experiences of family withdrawal, integration difficulties, and perceived lack of existing care. It is important to assess the effectiveness of improving refugee services on the mental health of migrants. More research is needed with larger samples in order to better understand, and respond to, suicide risk factors in resettled populations. ---

An increase of Bhutanese refugee suicides were reported in the US between 2009 and 2012. This investigation examined these reported suicides in depth to gain a better understanding of factors associated with suicide within this population. The study employed 14 psychological autopsies to elicit underlying motivations and circumstances for self-inflicted death and to identify potential future avenues for prevention and intervention among refugee communities. Disappointment with current (un)employment, lack of resettlement services and social support, and frustrations with separation from family were believed to contribute to suicidal acts. Suicide within refugee populations may be connected with experiences of family withdrawal, integration difficulties, and perceived lack of care. It is important to assess the effectiveness of improving refugee services on the mental health of migrants. More research is needed in order to better understand, and respond to, suicide in resettled populations.

INTRODUCTION Cigarette prices are associated with smoking behavior among youth and adults. 1,2 Estimates show that a 10% permanent increase in cigarette prices is associated with 4% short-term and 7.5% long-term reductions in demand for cigarettes. 3 Governments affect price through taxation and non-taxation strategies to curb smoking initiation among non-smokers, and reduce consumption and encourage quit attempts among current smokers. These strategies are particularly effective with price-sensitive populations such as youth, minorities, and low-income individuals. [4][5][6][7][8] Tobacco companies, conversely, use price-based strategies to incentivize initiation among experimenters and those susceptible to smoking, and to reward current smokers for repeated purchases. 4 Price promotions -also known as promotional discounting -reduce the cost of cigarettes where tobacco companies offer retailers and wholesalers discounts to boost sales. 9 Consumers can acquire these discounts through direct mail, email/websites/mobile phones, and point-of-sale. 10,11 Repeated receipt of coupons tailored to consumers' needs and socioeconomic levels leads to brand loyalty and long-term relationships between tobacco companies and their customers. 12 More importantly, price promotions can undermine price-based tobacco control policies that have been at the forefront of smoking prevention and cessation efforts. [13][14][15][16][17][18] Further, they compensate for increasing bans on cigarette advertising in mass media. 4,19,20 Retail and wholesale price promotions accounted for $7.6 billion of tobacco companies' expenditures in the U.S. in 2013. 21 The World Health Organization enacted a Framework Convention on Tobacco Control in 2003. 22 To implement provisions related to tobacco advertising, promotion, and sponsorship in Article 13 of FCTC, WHO introduced six tobacco-control strategies, abbreviated as MPOWER, to limit both demand and supply arms of tobacco use. One of these strategies focuses on enforcing advertising, promotional, and sponsorship bans, 23,24 which remains the least adopted MPOWER strategy. Only 24 countries have a complete ban on advertising, promotions, and sponsorship. Further, 84 countries have bans on price promotions. 23 Ecological models emphasize the influence of concentric intrapersonal, interpersonal, organizational, community, and public policy factors and their interaction on health behavior. 22,25,26 Past research examined the characteristics of price promotions' recipients; 27 and established a causal link between tobacco promotions and consumption 28,29 and an association between bans on advertising, promotions, and sponsorship and low awareness of pro-tobacco marketing and consumption. [30][31][32] However, the influence of policy-level regulations on the association between exposure to price promotions and smoking-related beliefs and behavior has not been fully examined. Policy regulations reach entire populations and become the setting where intrapersonal-level variables operate. 26 The purpose of this study is to examine whether the associations between exposure to tobacco price promotions and smoking-related beliefs and behavior differ by whether countries ban or allow price promotions. 33 Price promotions are banned under the Tobacco Act of 1997 in CA 34 and the Tobacco Advertising and Promotion Act of 2002 in UK. 35 Specifically, in CA, 1997, c. 13, c. 25; 1998, c. 38. S. 2 prohibits sales promotions where manufacturers and retailers are not to "offer or provide any consideration, direct or indirect, for the purchase of a tobacco product, including a gift to a purchase or a third party, bonus, premium, cash rebate or right to participate in a game, lottery or contest." 34 In UK, 2002c. 36, Section 9 prohibits free distributions of " any product or coupon away to the public in the United Kingdom or causes or permits that to happen … to promote a tobacco product." 36 Conversely, price promotions are allowed under the Tobacco Advertising prohibition Act of 1992 in AU 37 and the Master Settlement Agreement of 1998 in US. 38 We extend previous literature on tobacco price promotions in three ways. First, whereas previous studies focused on examining individual-level smoking beliefs and behaviors, we use a quasi-experimental design to examine the influence of national price-promotions policies on the associations between exposure to price promotions and smoking beliefs and behavior. This design overcomes methodological challenges of ecological models where it is difficult to experimentally manipulate factors at multiple levels. Second, we examine a multitude of smoking-related beliefs around social and injunctive norms, perceived functional value of smoking, misconceptions around smoking, and beliefs of tobacco industry and its regulations. Previous studies showed that smokers have misconceptions around smoking [39][40][41] and associate functional values to smoking. 42 Other studies showed associations between tobacco-control policies and norms around smoking and support for regulating the tobacco industry. 43,44 However, few studies explored the associations between exposure to price promotions and psychosocial antecedents of smoking behavior . 45,46 Third, we examine repeated exposure to price promotions, which has not been examined despite evidence of a dose-response relationship between exposure to both pro- 47 and anti-tobacco messages 48 and beliefs and attitudes. --- METHODS We used data from the International Tobacco Control Four-Country Survey , an international cohort study of adult smokers in CA, UK, AU, and US. ITC's longitudinal, quasi-experimental design affords the potential to examine psychological and behavioral outcomes of national tobacco control policies over time. Each ITC 4C wave consists of approximately 2000 adult smokers per country who are recruited using probability sampling procedures. Within each country, geographic regions are stratified and eligible households are randomly selected using random-digit dialing of landlines to ensure proportional representation of population size within each stratum. Within each eligible household, one respondent is selected using the next birthday method. After recruitment, smokers who quit are retained for comparison with smokers and discovery of relapses and transition to alternative tobacco types. Each wave is replenished with new recruits to account for attrition using the same sampling procedures. Age and gender were used to generate weights for samples from all four countries. Additionally, ethnicity was used in weighing US sample. Participants complete surveys in English or French using assisted telephone interviews or on the web. Complete information on the ITC Project is available elsewhere. 49,50 We used data from Waves 7 and 8 , the most recent ITC 4C waves after CA and UK enacted price-promotion bans and data were collected simultaneously across all four countries. Analyses were limited to participants who completed both Waves 7 and 8 surveys . In AU, we included only 855 participants whose Wave 8 data were collected before state-level point-of-sale signage against price promotions in the Australian Capital Territory, New South Wales, and Western Australia despite a no-ban national status. Advertising and promotions at point-of-sale are under the jurisdiction of the States and Territories in AU. Participants surveyed after statelevel laws became effective were less likely to be exposed to price promotions at both Waves 7 and 8 compared to participants surveyed before the law signage. Participants were current and former smokers at Wave 7. Former smokers at Wave 7 were retained because previous studies show that only 3-5% achieve long-term abstinence. 51 Although current smokers at Wave 7 and 8 were more likely to be repeatedly exposed to price promotions at Waves 7 and 8 compared to former smokers, no significant differences were detected between current and former smokers at Wave 7 and 8 in single exposure to price promotions at either Wave 7 or 8. In countries that ban price promotions , no significant differences were detected between current and former smokers in repeated and single exposure to price promotions . Attrition analyses showed no significant differences between participants who completed Wave 8 and those who did not based on gender, education, survey mode at Wave 7, smoking status at recruitment and at Wave 7, and exposure to price promotions at Wave 7 . Significant differences were detected based on age, ethnicity, income, marital status, and recruitment wave . --- Measures Exposure to price promotions was assessed at Wave 7 and 8 using a yes/no item, "In the last 6 months, have you noticed special price offers for cigarettes?" We categorized exposure to price promotions into: repeated , single , and no exposure. Smoking beliefs were dichotomized into yes/no where "strongly agree" and "agree" responses were coded "yes" and "neither agree nor disagree," "disagree," and "strongly disagree" responses were coded "no." This scheme follows previous research 52 where only affirmative responses counted as dismissing or acknowledging smoking-related beliefs. Two statements gauged social and injunctive norms . Three statements gauged perceived functional value of smoking . Two statements gauged misconceptions around smoking . Five statements gauged beliefs of the tobacco industry and its regulations . The first four items were measured using a five-point Likert scale. "Strongly agree" and "agree" responses were coded "yes," whereas "neither agree nor disagree," "disagree," and "strongly disagree" responses were coded "no." The last policy-related item was a four-point Likert scale where "strongly support" and "support" responses were coded "yes" and "oppose" and "strongly oppose" responses were coded "no." Smoking behavior was coded into current and former smokers. Data on gender, age, ethnicity, income, education, and marital status were collected. --- Analyses Using SAS® version 9.3, 53 we conducted weighted multinomial regression to test variations in exposure to price promotions by country. CA served as a reference group because its participants had the lowest exposure to price promotions at Wave 7 and/or Wave 8 of the two countries that ban price promotions. We used weighted multivariate logistic regression models to examine individual-level prospective associations of repeated and single exposure to price promotions in the past 6 months on smokingrelated beliefs and behavior at Wave 8 stratified by whether countries ban or allow price promotions adjusting for age, gender, ethnicity, income, education, marital status, survey mode at Waves 7 and 8, wave of recruitment, smoking status at Wave 7, and belief at Wave 7. --- RESULTS --- Self-reported exposure to price promotions Sample characteristics appear in Table 1. Multinomial logistic regression showed that selfreported exposure to price promotions differed by country . Relative to participants in CA, those in UK were more likely to report being exposed to price promotions at both Waves 7 and 8 than not being exposed to any price promotions . Participants in US were more likely to report being exposed to price promotions at both Waves 7 and 8 and at either Wave 7 or 8 . Conversely, participants in AU were less likely to report being exposed to price promotions at either Wave 7 or 8 . --- Associations between self-reported exposure to price promotions and smoking beliefs and behaviors Associations between exposure to price promotions and smoking-related beliefs and behavior for individual countries appear in Table 3 and by ban/no-ban status appear in Table 4. In countries without bans on price promotions , participants exposed to price promotions at both Waves 7 and 8 were more likely than those who reported no exposure to agree that people thought that they should not smoke and that smoking calmed them down when stressed . Those exposed to price offers at either Wave 7 or 8 were more likely to agree that smoking was an important part of their lives . Exposure to price promotions at both Waves 7 and 8 was associated with being a current smoker at Wave 8 . In countries with bans on price promotions , participants exposed to price offers at Waves 7 and 8 were less likely to hold misconceptions around smoking. They were less likely to believe that lighter taste meant less tar and that harsher smoke was more dangerous . Participants who were exposed to price promotions at either Wave 7 or 8 were more likely to support not allowing tobacco companies to promote cigarettes . Exposure to price promotions was not associated with smoking behavior in countries with bans on price promotions . --- DISCUSSION Price promotions are powerful marketing tools in tobacco companies' arsenal to promote smoking. 4 Current and former smokers in CA, UK, AU, and US were exposed to price promotions. One potential reason for variations in self-reported exposure to price promotions within and across price-promotion policies is between-country variations in legislative extent and compliance with tobacco-control measures. 54,55 Associations between exposure to price promotions and smoking-related beliefs differed by price-promotions policies. Exposure to price promotions in AU and US was associated with pro-tobacco beliefs related to the functional value of smoking. These associations were not observed in CA and UK. Further, exposure to price promotions was associated with antitobacco beliefs, particularly lower misconceptions around smoking and an endorsement for banning the tobacco industry from promoting cigarettes in countries that ban price promotions. These findings align with ecological models of behaviors, 26 which emphasize the impact of policy-and social-level factors on individual-level psychological and behavioral variables and their interactions. 32,56,57 Smokers exhibit anti-smoking beliefs and support tobacco regulations progressively over time when such regulations exist. 55,58 This might explain the non-intuitive association between exposure to price promotions and anti-smoking beliefs in countries that ban price promotions. Research is needed to examine the synergic impact of simultaneous factors that can reinforce or undermine national tobacco-control policies. 59 Anti-smoking efforts should focus on beliefs that were significantly associated with exposure to price promotions in our study: smoking-related myths, which sustain smoking and discourage cessation; [39][40][41] tobacco industry techniques; 60 and perceived social unacceptability of smoking, which is a protective factor against smoking based on theories that emphasize the importance of normative belief 61 and is associated with increased exposure to anti-tobacco messaging, increased intentions to quit, and long-term abstinence. 43 Exposure to price promotions was associated with smoking behavior only in countries that allow price promotions. From an economic standpoint, smokers acknowledge the financial burdens of smoking. 62 A US regional study showed that 80% of adults who receive price promotion redeem them, which allows them to continue smoking. 45 We did not examine coupon redemption, which might explain the significant association between exposure to price promotions and smoking behavior in counties that allow price-promotions. 45 Research is needed to identify factors that mediate the relationship between exposure to price promotions and smoking behavior . Repetition is a staple of tobacco industry advertising practices. 63 Repeated exposure to price promotions, defined as exposure at both Waves 7 and 8, was associated with smoking-related beliefs and behaviors in countries that allow price promotions with the exception of importance of smoking in life that was associated with single exposure to price promotions. Based on cognitive psychology literature, repeated exposure to price promotions makes smoking salient, which affects expressed beliefs and behaviors. 64,65 Further, price promotions represent naturally occurring smoking cues in one's social environment that can trigger cravings 66 and activate smoking goals and behaviors. 67 Research should further explore the impact of national price-promotion policy on the amount and venues of exposure to price promotions and their associations with smoking beliefs and behavior. --- Policy implications Price promotions undermine general and price-based tobacco-control policies. In countries with no promotional bans, tobacco companies redirect their budgets to circumvent advertising and sponsorship bans 13,68 and cushion the effects of price-based tobacco-control policies. A US study showed that 86.5% of tobacco companies' direct mail contained coupons that offered an average of $4.17 price reductions. 69 Redeeming price promotions represents one of several price-minimizing behaviors that consumers, especially from low socioeconomic statuses, engage in to control their expenditures when confronted with a price increase. [70][71][72] These price-minimizing behaviors are detrimental to smoking cessation. --- 73 A comprehensive ban on price promotions as a component of broader tobacco-control policies should be implemented as recommended by the WHO. 23,74 Such national policies could dampen exposure to price promotions and create an anti-smoking environment. Finally, increasing awareness of and enforcing current/proposed bans remain important factors to achieve high compliance. 23,54,60 --- Strengths and limitations We relied on representative samples of current and former smokers to examine associations between exposure to price promotions and smoking-related beliefs and behavior. The quasiexperimental design of ITC 4C allowed us to examine these associations in countries with national policies prohibiting or allowing tobacco price promotions. Although country-level analyses did not reveal meaningful results , stratifying countries based on ban/noban status allowed for significant associations to emerge based on repeated vs. single exposure to price promotions and smoking-related beliefs and behaviors. Second, in addition to smoking behaviors, we examined smoking-related beliefs, which are important cognitive antecedents to smoking behaviors per theoretical frameworks such as the Theory of Reasoned Action. 75 Further, we examined different smoking-related beliefs, whereas other studies focused on one type such as industry and tobacco policy related beliefs. 45 The ITC longitudinal design allowed us to examine exposure to price promotions on smoking-related beliefs and behaviors over time. The study has several limitations. Emphasis on context in ecological models, while considered a strength, is methodologically challenging because it is difficult to disentangle and isolate complex multi-level interactions on health behaviors. 26 Accordingly, associations between exposure to price offers and smoking-related beliefs and behavior could be attributed to several factors other than price-promotions bans such as enactment and enforcement of tobacco control measures that vary within and by country over time. 76 For example, despite the ban on price promotions in UK, tobacco companies are engaging in alternative price-promotion strategies such as cheaper price-marked packs at launch and bolded price in point-of-sale advertising. AU has complete bans on advertising and sponsorship, high tobacco tax, and cigarette pack warning labels among other tobacco control measures. 77,78 This might explain our results that showed that compared to CA, participants in AU were less likely to be exposed to price promotions despite a national ban on price promotions in CA and a no-ban in AU. Additionally, cultural differences between countries could affect the associations between exposure to price promotions and smokingrelated beliefs and behavior even among the four countries examined here that are comparable on basic indicators . 79 However, sensitivity analyses showed no significant country by exposure interactions on smoking-related beliefs and behavior . Finally, two tobacco-control policies were introduced during data collection period 81 that could have affected the results. Results were based on self-reported exposure to price promotions, which are subject to recall error and misinterpretations. For example, participants in UK could have mistaken bolded price in point-of-sale advertising for price promotions. Explicit measures of smoking-related beliefs are subject to social desirability biases and measurement limitations. 82 We lack information on venues of exposure to price promotions especially in countries that ban price promotions. Finally, samples were not adjusted by ethnicity for CA, UK, and AU and were based on random-digit-dialing of landlines only. --- Conclusion Associations between exposure to price promotions and smoking-related beliefs and behavior differed by national policies on price promotions. Repeated exposure to price promotions was associated with favorable smoking beliefs and behavior only in countries without bans on price promotions. These results suggest that adopting a price-promotions ban with adequate enforcement, as recommended by the WHO FCTC, could mitigate the effect of price promotions on smoking beliefs and behavior. --- What this paper adds We examined the impact of national-level price promotion bans on the association between exposure to price promotions and smoking-related beliefs and behavior. This study showed prospective associations between exposure to price promotions and pro-smoking beliefs related to the functional value of smoking and smoking behavior. These associations were observed only in countries without bans on price promotions. The findings are consistent with calls for a comprehensive ban on price promotions as a component of broader tobacco-control policies as outlined in the World Health Organization's Framework Convention on Tobacco Control. --- Additional support was provided to Geoffrey T. Fong from a Senior Investigator Award from the Ontario Institute for Cancer Research and a Prevention Scientist Award from the Canadian Cancer Society Research Institute. --- ---

Background-Ecological models emphasize multi-level influences on health behaviors. While studies show that exposure to price promotions is associated with smoking behavior and its antecedents, less is known about whether these associations differ by macro-level factors such as national price-promotion policies.

INTRODUCTION Maternal and child death is a global problem and is highly overwhelming in low-income and middle-income countries. An estimate of 303 000 pregnant women and 8.4 million under 5 children died in 2015. 1 Low-income and middle-income countries account for approximately 99% of maternal and child deaths. 2 3 In Tanzania, the maternal mortality rate is 556 per 100 000 live births while the infant and under-5 mortality rates are 43/1000 and 67/1000, respectively. 4 The neonatal mortality rate is 25 per 1000 live births. 4 Low utilisation of maternal and child health services is mentioned as one of the root causes of maternal and child deaths. [1][2][3] In Tanzania, for example, though over 90% of pregnant women attend antenatal care at least once, only 51% complete four or more recommended visits. Additionally, only 24% of women attend their first ANC before the fourth month of pregnancy. 4 5 Health facility deliveries were 63% and 37% were home deliveries. Sixty-four per cent of deliveries were assisted by health professional and 36% were not. 4 Furthermore, only 13% of women who delivered at home attended postnatal care within the recommended timeline of 48 hours after delivery. 4 In Tanzania, like in other African countries, the adverse effect of socioeconomic factors on maternal, newborn and child health is compounded by gender inequalities that limit women's autonomy and decision-making power. 4 This prevents women and their families from practising healthy behaviours as well as seeking and receiving life-saving care --- Strengths and limitations of this study ► This study is one of the few to have used action research approach to promote male involvement in maternal and child health. ► The findings reported are based on the initial stages of the participatory action research. ► Another limitation of the study is lack of independence of the data collection because data collection was carried out by the researchers who were part of the action research team. Open access at and around the time of birth. 4 6-9 The delay in seeking care and delay in reaching healthcare facilities occurs when women lack support from male partners, especially when the situation involves the need for money. 9 10 Male involvement has been reported to improve MCH outcomes. Among the perceived benefits associated with increased male involvement include increased access to ANC and delivery at the health facility with assistance of skilled birth attendants 11 ; increased knowledge of both women and men on the obstetric care emergencies 12 13 ; increased use of family planning methods 14 15 and decreased gender-related barriers to MCH services. 16 17 Globally, a number of strategies have been implemented to increase male involvement in MCH services. The strategies include health education campaigns on the mass media, at work places, community outreach and counselling of couples at health facilities. 18 19 Others are fast tracking to couples who attend clinics together [18][19][20][21][22] and denying services to women attending ANC without male partners. [19][20][21][22][23] In Tanzania, policies, guidelines and strategies emphasise male involvement in MCH services. The focused ANC guidelines require pregnant women to attend clinics with their partners as part of the prevention of mother to child transmission of HIV. Pregnant women are, therefore, required to attend the first ANC visits with their male partners for HIV testing. [24][25][26] Despite these strategies, only 30% of male partners participate in the couple counselling and HIV testing. 26 While there is a growing interest in the involvement of men in MCH, little is known on how male involvement can be effectively promoted in settings where entrenched unequal gender roles, norms and relations constrain women from effectively inviting men to participate in MCH. Most policies take a narrow definition of male involvement focusing more on clinic attendance. In this study, male involvement refers to provision of social, informational and psychological support to pregnant women. This paper makes a valuable contribution to the literature on male involvement in MCH because it addresses the question of how male involvement can be promoted. --- Methods --- Study settings and design This study was part of the large project under the Innovating for Maternal and Child Health in Africa programme, which is being implemented in Kilolo and Mufindi districts in Iringa region, Tanzania. IMCHA programme aimed to improve maternal, newborn and child health outcomes by strengthening health systems to become more equitable, using primary healthcare as an entry point. Iringa region was selected because of the earlier research collaboration between some of the IMCHA researchers and the regional and district decision-makers on strengthening decentralised district health management. The districts are predominantly rural and the majority of the population rely on agriculture for subsistence and production. Table 1 shows MCH indicators in the study districts. A participatory action research design was adopted in this study. 27 Action research is the research conducted in partnership with members of the community mainly aimed at bringing about structural or cultural change. 27 28 In PAR, researchers do not just conduct studies on community rather they form partnerships with community members to identify issues important to the local community, develop ways of studying them and take actions on the resulting knowledge. 28 The PAR process consisted of a series of meetings during which women, men and community stakeholders identified barriers to male involvement in MCH; and then designed strategies to promote male participation. The action research team led by the researchers from the University of Dar es Salaam, in collaboration with the regional and district health managers from Iringa Region facilitated the PAR. As indicated in figure 1, the PAR process involved five phases. As indicated in online supplemental file 1, in order to complete one cycle Women and men groups conducted eight meetings on a monthly basis. --- Introduction and formation of women and men groups We conducted a series of consultation meetings with the community members in 20 intervention villages. Prior to our first community, we had several discussions within our team of how our social identities with respect to education, gender, sexual orientation and material resources would influence the PAR process. This was an important process as most of the research team members had not worked with communities. Before starting community meetings, we conduct previsits in all 20 intervention villages to discuss our research with community leaders. On entering the community, the ART first introduced the project to the community and facilitated the formation of women and men groups in 20 intervention villages. We used community leaders mainly village chairperson and Open access village executive officers to persuade other community members to attend an initial meeting. In each village, women and men groups comprised 20 and 10 members, respectively, who were selected during community meetings facilitated by the ART. The criteria for selecting women included: age 15-49 years, experience in using MCH services, and women who were pregnant or had given birth in the last 12 months preceding the study. However, in a few villages women who were above 50 years were selected by community members. These were mostly traditional birth attendants and the community considered them important to be included in the women groups in order to share their experience. The criteria for selecting male participants included: having a wife/ female partner and experience with childbirth. In total, 400 women and 200 men were identified in 20 intervention villages. These 400 women and 200 men made up several groups of 20 and 10 respectively. In addition, 40 community health workers ; 2 from each village were identified and included in the women groups. The selected women, men and CHWs were given training on how they could diagnose various barriers to the access and use of MCH services in their community; and then design strategies to address these barriers. The training was standardised and was provided by the experienced qualitative researchers in collaboration with the district health managers. --- Diagnosing and prioritising problems In phase II, the ART led the women groups in identifying and prioritising barriers to male involvement in MCH in their community. This phase involved two different meetings. In the first meeting, women were able to identify barriers without the presence of men. In the next meeting, the ART facilitated women groups to share and discuss the identified barriers with a group of 10 men in their community. The rationale of including men in the meetings was to give them an opportunity to share their views as key stakeholders and decision makers in MCH matters. This process also aimed to prepare men to actively participate in designing and implementation of the strategies. --- Designing male engagement strategies In phase III, women and men together developed strategies to promote male involvement in MCH. In addition, the ART facilitated community meetings where women groups and male champions shared the barriers and strategies designed to promote male involvement. The key stakeholders who participated in the community meetings included the government and community leaders, religious leaders, health providers and members of the Health Facility Governing Committees. The objective of the community meetings was to give stakeholders an opportunity to discuss and refine the problems, root causes and strategies identified by women and men groups. In addition, the community meetings aimed at actively involving community stakeholders in the implementation of the strategies in their respective areas. As indicated in table 2, a total of 450 stakeholders from all 20 intervention villages participated in community meetings. --- Implementing and evaluating strategies In phase IV, women and men groups developed plans and led the implementation of the strategies to promote male involvement in MCH. In phase V, women groups and male champions together evaluated the effectiveness of the strategies. In this paper, we report the first three phases of the PAR as the last two phases were not yet completed. As indicated in table 3, in total, we facilitated 102 meetings between February 2017 and March 2018 for the first three phases. --- Data collection techniques As part of the PAR intervention, the researchers conducted a series of research activities. All the meetings conducted with women, men and community members were documented. In some cases, the discussions were audio recorded with permission from the participants. Where recording was not possible, notes from the Open access discussion were taken. In addition, trained research assistants prepared reports for the meetings. Similarly, all the presentations made by the women groups during community meetings were audio-recorded. Additionally, interviews and structured questionnaires were administered to a subset of men and women group members. Furthermore, a structured questionnaire was used to collect data on sociodemographic characteristics, men's knowledge and awareness of FP and ANC services and their practices in relation to prenatal care and childbirth, and related decision-making power. Data were collected through digital tablets using Open Data Kit software by five local interviewers between June and July 2018. The same interviewers covered all 20 villages. Researchers got verbal consent from all the prospective respondents. Verbal consent was preferred because in these settings the use of written consent forms might be perceived by participants to be threatening. --- Data analysis All recordings from the women, men and community meetings were transcribed verbatim by trained transcribers. The transcripts were reviewed by the core research team members and notes were made for each transcript. The transcripts and summaries of the stakeholders' meetings were analysed using a thematic approach. 29 First, the principal investigator developed a code manual based on the objectives of the study. The coding framework was further discussed and refined by the research team members. PJ and SM manually coded the transcripts and summaries of the meetings to the identified codes. Additional codes, which emerged during coding process, were added along the way. PK cross-checked the coding process. Responses were then compared across different categories of participants. Finally, data were summarised and synthesised, keeping the key expressions of respondents as illustrative cases. Quantitative data analyses were performed using StataV.15.0 . --- Patient and public involvement This study was conducted in partnership with members of the community. The PAR process consisted of a series of meetings during which women, men and community stakeholders identified barriers to male involvement in MCH and then designed strategies to promote male participation. Findings were shared during stakeholders meetings held in the respective communities. --- FINDINGS This section presents the key findings of the study. The key themes covered are: characteristics of women and men groups, barriers to male involvement in MCH and strategies designed to promote male involvement. --- Characteristics of the women group members The mean age of the women respondents was 35.7±9.4 . Most of the women were between 26 and 49 years of age. About 78% of the women were married, and most of them were living with their husbands . Among the married women, 21% reported that Open access their husbands had more than one wife. Table 4 shows the main characteristics of the women group members. In terms of ANC and childbirth, around 9% of the women group members were pregnant during the interviews, and 19 of them reported to attend ANC. We also explored prenatal and childbirth care practices of these women during their immediate pregnancy. Although around 96% of the women attended ANC at health facilities, only about 72% of them had had four or more ANC visits and 93% gave birth at health facilities. The prevalence of ≥4 ANC visits and facility births were low among all the women interviewed-69% and 91%, respectively. --- Characteristics of male champions As indicated in table 5, about 51% of the male champions were between the age range of 20 and 39. Moreover, 82% had completed primary education and nearly all were married. As for women group members, the majority of the male champions relied on agriculture for subsistence and production. We also assessed the awareness and knowledge of male champions on various MCH matters. As indicated in table 6, nearly all participants were aware of the FP. However, most men only mentioned condom as the main FP method. Other methods of FP planning were rarely mentioned. The majority of the participants understood the role of ANC as taking care of pregnant women and their fetus. However, only 21% agreed that men were required to accompany their wives for ANC visits. Furthermore, 80% had knowledge of exclusive breast feeding and 78% had knowledge of the duration of the EBF. --- Barriers to male involvement While majority of women preferred to attend first ANC appointment with their partners, men did not wish to be actively involved in ANC and delivery. Participants perceived men as breadwinners and their main role in pregnancy and child birth was to support their partners financially. There were contradicting views regarding the need for men to assist their wives with household chores; while women preferred to be assisted with household chores during pregnancy and early days after birth, majority of male participants felt that this was mainly women's responsibility. Furthermore, it was evident that men did not prefer their wives to use modern FP methods due to fear of side effects. Men also had the perception that the use of FP would increase cheating for married women. Table 7 provides a summary of the barriers to male involvement as identified in most of the intervention villages. --- Strategies designed to promote male involvement The key strategies which were commonly proposed were: engaging health facility governing committees; use of male champions and gatekeepers; and using women champions. --- Engaging health facility governing committees In all public primary healthcare facilities, there are health facility governing committees. The committees Open access are composed of representatives of the community and health facility. The health facility governing committees have the mandate of overseeing the delivery of quality healthcare services and mobilising the community to finance and manage healthcare services. The use of health facility governing committees was identified as a potential strategy to promote male engagement in MCH services. Participants reported that actively engaging health facility governing committees would help address health facility related barriers to male involvement including long waiting time, disrespectful languages of the health providers, and lack of physical space to accommodate men and women concurrently as exemplified by one of the stakeholders: The health governing committee should be coached on their roles and responsibilities to ensure they properly supervise provision of services at the health facility. If they are engaged, the committee will be able to talk to the health care workers not to harass pregnant women and their partners. The committee can also tackle other supply side related problems which hinder use of health care services. This will attract men to attend clinics . --- Engaging male champions and gatekeepers There was consensus among participants that men do not accompany their wives to ANC clinics; and fear to use FP methods because they lack education. While women most often get health education in health facilities, particularly during ANC visits, men rarely receive health education. In addition, traditional gender roles and norms hinder men's participation in MCH matters. Men's perception of superiority makes it difficult for wives to pass the message from health providers to their husbands. Most often wives fear to discuss FP, pregnancy and child birth-related matters with their husbands due to culturally entrenched power differences between wives and husbands. In this context, male champions are better positioned to educate their fellow men and ultimately break the entrenched cultural gender roles and norms. Participants suggested that male champions should be identified in each village. They should also be facilitated in terms of key messages to be delivered to men. Male champions should deliver key messages through bars, football matches and other social gatherings in the villages as explained by some participants: Men have inherited the beliefs that they are superior to women. Women are voiceless in making and influencing decisions at the household. Even the young generation has inherited the same cultural beliefs. It is difficult for women to educate or communicate to men the information they receive from the health facilities. We need to identify male champions who will talk to their fellow men in their social gatherings . Other participants added: Most of the maternal and child health programmes are directed to women. Men do not get opportunities to receive health information becuaes they rarely attend clinics. Unfortunately, when women get the knowledge, they cannot deliver to their partners. --- Open access They always fear to talk to their husbands . We request IMCHA project team to focus mostly on men so that we can get first-hand information instead of waiting for female partners. We have always been excluded when it comes to maternal and child health education. Women are given education in health facilities. Men rarely get these opportunities . Closely connected to the above, participants in various meetings underlined the importance of engaging male gatekeepers particularly religious and community leaders. It was highlighted that religious and community leaders are highly respected in the community. They have the power to convey health information to men and women alike. According to our participants, male gatekeepers should be actively engaged in the sensitisation campaigns or in providing education to men and women in their communities as explained by some respondents: We should think very carefully about people who will deliver messages or education to the community. Others are an obstacle and using them as champions will end up losing instead of gaining. People will not listen; instead they will start whispering. But if we use influential people like religious leaders, elderly, or government officials, we might be able to increase the acceptability of the messages . --- Another respondent added: Women have presented the truth. The challenge is to get the right people who will deliver the key messages to the community and men in particular. I think if we work with religious and community leaders, the messages can easily be accepted by men . Almost all participants requested the IMCHA project team to provide training to male champions and gatekeepers. They also requested to provide them with key messages that should be delivered to the community, particularly to men. The key messages should focus on the importance of men to attend ANC clinics along with their partners, birth preparedness including shared decision making during pregnancy and child birth and the importance of FP use. This sensitization and training should not stop today. Women have presented very important issues which need to be addressed in our communities. We request researchers to provide more training to men, religious, and community leaders so that they can deliver these messages to the community. We have ► Male champions providing education to men on importance of couple HIV counselling and testing ► Community and religious leaders providing education during community meetings on importance of couple HIV counselling and testing Low birth spacing makes men fear to accompany their wives. Men think that they would be reprimanded by health providers and fellow men ► Male champions providing education to men on the importance of family planning ► Sensitising healthcare to provide friendly services to couples attending clinics Couple relationships may encourage or hinder male participation in maternal and child health matters. The better the relationship, the higher the male participation and vice versa. ► Women group members sensitising fellow women on the importance of better couple relationship Unfavourable environment in the health facilities. Most mentioned environments including long waiting time, disrespectful languages of the health providers, and lack of physical space to accommodate men and women concurrently. ► Healthcare workers to provide friendly services to couples attending clinics ► The local government to improve physical space to accommodate men and women concurrently ► Engaging health facility governing committees to improve health facilities ANC, antenatal care; PMTCT, prevention of mother to child transmission. on May 6, 2024 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2020-038823 on 14 November 2020. Downloaded from Open access various platforms in our communities which can be used to communicate this information . --- Women champions and education of fellow women There was consensus among participants that relationships among couples may encourage or hinder male participation in MCH matters; on the one hand, unfriendly relationship will hinder active participation of men. On the other hand, good couple relationship will facilitate male involvement in MCH. In this context, the use of women groups was considered important, particularly to provide education to their fellow women on the best practices. It was reported that women have many social platforms where they could share and discuss the information related to couple relationships during pregnancy and child birth. Improved couple relationships will increase male participation in MCH as elaborated by some participants: Men are like children. When you need to talk to them, you should read their mind and feelings. If they are in bad mood don't say any thing to them, wait until they feel better. We need to understand the moods of our husbands and the best occasion that men can listen and understand our needs . Other participants added that: We, women, have problems. When a man agrees to do some household chores, we still want to make it public. We speak to our friends, neighbours or in saloons that, you just make my hair slowly, no need for hurry; my husband is taking care of children…. Even food, I will find it already cooked. If men know this, they will never support you again . The way a wife communicates information to the husband may result in participation or non participation in antenatal care clinics. Some women think that when they are pregnant it is the time to harass their husbands. Men need soft language, if you use harsh or rude language, we interpret it as a command. Usually, men need respect and love. If you show us respect and love, we are ready to accompany you to ANC clinics and assist in domestic chores . Another participant had this to say: Women are the root cause of the low male involvement because they do not communicate with their husbands in a polite language. For example, when I come back home and tell my wife, I need the night meal and the wife replies rudely that 'I'm not ready', I will keep quiet. If I get the same answer the following day….I may start thinking of alternatives, looking for other women to satisfy my sexual desire. So, women need to use soft language, and we can understand them and plan together . --- Discussion This study adds new knowledge on the strategies for promoting male involvement in MCH in low-income and middle-income countries. It is one of the few to have used action research approach to promote male involvement inMCH. While action research has been used extensively in the health sector in Tanzania [30][31][32] and in other low-income and middle-income countries, [33][34][35][36] there has been little evidence of its appropriateness in promoting male involvement in MCH. We have demonstrated how stakeholders, including men, were able to design culturally acceptable strategies to increase male involvement in MCH. The next section discusses the strategies suggested by the participants in the current study in the light of other studies in low-income and middle-income countries. --- Health education and community sensitisation Health education and community sensitisation campaigns were widely suggested in many villages as an important strategy which can be used to promote male participation in MCH. Participants felt that majority of community members, particularly men, lack MCH education. While male champions who participated in the study had adequate knowledge of ANC care, FP and EBF, this was only a small segment of the population. In addition, male champions were selected based on their interests in MCH matters. It may be possible that most of the male champions had experience in MCH matters. Health education interventions tailored to women and men have been effective in increasing knowledge, health seeking behaviour and raising awareness on issues related to MCH. 18 37-39 In our study, participants said that in order to make it sustainable, health education should be provided by healthcare workers and CHWs who already exist in the communities. They also preferred the campaigns to be integrated in the community and political gatherings in their respective villages. Participants preferred that key messages be developed to facilitate the campaigns and sensitisation programmes. Connected to the above, participants suggested the use of male champions and male gatekeepers to promote behavioural change among men. It was evident from the findings that while women had access to health education during ANC clinics, men rarely attend health facilities. However, due to entrenched gender power relations, most often women are not able to convey the health information received from health facilities to their husbands. A study in Tanzania showed that the traditional way of using women to convey health information to male partners was a barrier to male involvement because men preferred to receive the message through other men. 40 The use of male champions is an effective strategy to include and engage men by targeting men focused key messages on the importance of participating in MCH. A study in the Philippines reported that using male peer educators improved participation of men in MCH matters. 41 Similarly, recent studies in Malawi underscored the importance of male champions in facilitating men's on May 6, 2024 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2020-038823 on 14 November 2020. Downloaded from Open access participation in MCH and challenging traditional gender norms. 19 42 Men were targeted with messages focused on the benefits of utilising MCH services. 19 42 However, while in the Malawian studies male champions delivered the key messages to men secretly, 19 in our study, the participants suggested that male champions should discuss MCH openly in the men's platforms including football matches, bars and other places where men meet. Furthermore, sensitisation and support should also be provided to religious, traditional, and government leaders to spread these messages in various religious, political and social gatherings. Studies in other Africa countries have highlighted the importance of engaging religious and traditional leaders in promoting male involvement in MCH. 18 19 42 Furthermore, participants underlined the importance of managing couple relationships in order to increase men's participation in MCH services. Female and male participants suggested that women should learn how to strategically manage their couple relationships in order not to deter male men from engaging in MCH. It is absolutely the case that men's ability and willingness to be involved in MCH is influenced by couple relationship dynamics. 19 42 However, in our study, it seems that participants recommended that the burden of emotional labour involved in managing couple relationships should fall exclusively to women, and not to men. For example, it is the women and not men who are responsible for communicating with 'soft language'. While this finding is an important contribution to the literature, it implies the dominance of unequal expectations of men and women in the society. Managing couple relationships should be the responsibility of both women and men. --- Use of health facility governing committees In our study, participants suggested the use of health facility governing committees to address facility-related barriers to male involvement in MCH. Health facility governing committees have been reported to significantly facilitate access to MCH services. 43 However, in Tanzania, studies have indicated that while health facility committees exist in all public primary healthcare facilities, limited financial resources, limited capacity and skills, attitudes of health workers and lack of clarity of the role and mandate of committees affect the performance of the committees. [44][45][46] In order to maximise their performance, deliberate efforts should be made to strengthen the capacity of the health committees. Furthermore, the Ministry of Health should ensure that district Councils allocate adequate funds to the district annually to support meetings of the health committees as it is done for the council Health Services Boards . Studies have reported that CHSBs in Tanzania managed to attract members with good qualification mainly due to the availability of good incentives. 45 46 Limitations of the study The main limitation of this study is that it does not report the implementation and effects of the designed strategies. The findings reported are based on the initial stages of the PAR. The programme is now going into the fourth and fifth phases of implementation and evaluation of the effects of the strategies on male involvement in MCH. Another limitation of the study is lack of independence of the data collection. The data collection was carried out by the researchers who were part of the ART. However, the data collectors had no motivation to consciously or subconsciously skew the responses in a particular direction, although errors in data collection will always be expected. The data collectors were paid to collect the data as accurately as possible and their compensation did not depend on what data they collected. Moreover, the interviewers did not collect data from their family or friends and had no personal stake in the collected data. --- Conclusion While action research has been used extensively in the health sector, there has been little evidence of its relevance to promoting male involvement in MCH. This study is one of the few to have used action research approach to promote male involvement in MCH. We have demonstrated how stakeholders, including men, were able to design culturally acceptable strategies to increase male involvement in MCH. The use of participatory approach empowered communities, including women, to diagnose barriers to male involvement and develop culturally acceptable strategies to address these barriers. Our participatory approach to male involvement may likely increase sustainability of the interventions beyond the life span of the project. The IMCHA programme is now going into the last phase of implementation and evaluation of effects of these strategies on MCH outcomes. More lessons will be identified during the implementation of these strategies. --- Contributors SM, PK, KB and MA conceptualised the study, including developing data collection tools. SM, PK and PJ collected, coded and analysed data. PJ and SM drafted the manuscript. PK, SF, KB and MA contributed to the manuscript writing. All authors approved the final manuscript. Competing interests None declared. --- Patient consent for publication Not required. Ethics approval This study got approval from the Ethical Committee of the Medical Research Council of Tanzania No: NIMR/HQ/R.8a/Vol.IX/2119. The study was also approved by the Regional Administrative Officers in the region of study. Provenance and peer review Not commissioned; externally peer reviewed. --- Data availability statement The datasets are not publicly available since participants did not give consent for the public sharing of their information. However, summaries of the information and data collection tools are available from the corresponding author on request.

Introduction Male involvement has been reported to improve maternal and child health (MCH) outcomes. However, most studies in low-income and middle-income countries have reported low participation of men in MCHrelated programmes. While there is a growing interest in the involvement of men in MCH, little is known on how male involvement can be effectively promoted in settings where entrenched unequal gender roles, norms and relations constrain women from effectively inviting men to participate in MCH. Methods and analysis This paper reports participatory action research (PAR) aimed to promote male participation in pregnancy and childbirth in Iringa Region, Tanzania. As part of the Innovating for Maternal and Child Health in Africa project, PAR was conducted in 20 villages in two rural districts in Tanzania. Men and women were engaged separately to identify barriers to male involvement in antenatal care and during delivery; and then they were facilitated to design strategies to promote male participation in their communities. Along with the PAR intervention, researchers undertook a series of research activities. A thematic analysis was used to analyse the data. The common strategies designed were: engaging health facility committees; using male champions and male gatekeepers; and using female champions to sensitise and provide health education to women. These strategies were validated during stakeholders' meetings, which were convened in each community. Discussion The use of participatory approach not only empowers communities to diagnose barriers to male involvement and develop culturally acceptable strategies but also increases sustainability of the interventions beyond the life span of the project. More lessons will be identified during the implementation of these strategies.

Background Emergency contraception is an effective postcoital contraceptive method geared towards reducing the risk of unwanted pregnancy after unprotected intercourse or contraceptive failure. It has been estimated that its effectiveness is between 70 and 89% if taken within 72 h after intercourse [1]; its effectiveness decreases after that period. Over the past few decades, in an attempt to reduce unwanted pregnancies, governments in developed countries have made efforts to expand women's access to emergency contraceptive methods using mechanisms such as its dispensation as an over-the-counter medication [2] or through the anticipated delivery of the drug [3][4][5][6][7]. In Spain, over-the-counter dispensation in pharmacies began in 2009 [8]. These methods of increasing women's access to EC are of positive value because they decrease the amount of time necessary to obtain it, thereby ensuring its effectiveness [9]. On the other hand, over-the-counter availability of EC helps to overcome inconveniences such as the embarrassment of having to consult a health professional, thus encouraging its use in women who are reluctant to seek consultation; EC can be obtained with greater anonymity when it is available directly through the pharmacy [6]. In countries where access to the EC pill has been deregulated for many years, abortion rates have not declined as was anticipated by the drug legislation policies. Glasier [3] performed a community study whose results showed that the widespread distribution of EC pills through health services did not decrease the abortion rate in the UK. Numerous reasons may have contributed to the lack of effect of EC availability on the decline in unwanted pregnancies. Among these reasons is the persistence of erroneous beliefs caused by the lack of knowledge about the mechanism of action of EC [10]. The belief that EC is an abortion-inducing drug as well as the exaggeration of the side effects causes some women to decide not to take it [10,11]. In addition, factors such as the cost and the sense of intimidation generated by the possible moral judgements of the health professionals or pharmacists who dispense the pill must be considered [10,12,13]. In other cases, women state moral or religious reasons for not using EC, while others decline use because they think or expect that they will not get pregnant [12]. The majority of studies on this subject performed in Spain to date applied quantitative approaches, and most of those were carried out from the point of view of health practitioners. It is therefore necessary to explore the conceptions regarding EC that are elicited from the discourse of women who are users or potential users. By incorporating the perspective of young women, we aspire to improve the success chance of public policies aimed at promoting sexual-affective health. A necessary first step is the identification of the cognitive barriers that will allow the conceptual errors underlying the formation of unfavourable attitudes towards EC to be debunked. This knowledge may also be useful in understanding the discourses that lead some women to use EC. In this study, we intend to explore the knowledge of, attitudes towards and discourses regarding the use of EC in women aged 15 to 25 years. --- Methods This investigation is a qualitative study applying in-depth interviews. The study aims to unveil the discourses regarding the contraceptive pill among young women living in Mallorca, Spain. --- Population and theoretical sampling The study population was composed of young women between the ages of 15 and 25 of different socioeconomic levels who fulfilled the following inclusion criteria: a resident of Mallorca, and a native of Spain or of a Latin American country. A purposive sampling technique was used to ensure that women both with and without experience in EC use were included in the study. In addition, the following criteria were used to maximize sample diversity: level of education, occupation, age group and partnership status. Young women in Latin America have a high rate of voluntary abortion compared to native Spaniards. Therefore, to compare the discourses, both Spanish and Latin American women were interviewed. A total of 19 interviews were conducted until preliminary analysis identified the saturation of data regarding the study objectives. Even women who had no personal experience in the use of EC were aware of other experiences through their friends and were thus included in the study group. --- Data collection Information was collected through in-depth, individual, semi-structured interviews. The choice of technique was based on the intimate nature of the interview topic and the ability of this method to facilitate adaptation to the schedules and locations of the persons interviewed. For the preparation of the interview script , the literature was reviewed and contrasted with responses from key informants. The key informants were primary health care nurses who assisted young women in health promotion programmes developed in high school centres or in gynaecological consultations. The scripts were adapted during the course of the fieldwork using the results of the preliminary analysis. The participants were intentionally selected by the key informants in the health centres and by a university nurse lecturer, based on the identification of women who met the inclusion criteria and were likely to participate. The lecturer did not recruit her own students but instead asked them to invite other students to participate. Before the interviews were conducted, the key informants were contacted by the research team to facilitate the fieldwork. The key informants collaborated in recruiting the women to be interviewed during face-to-face encounters in their work locations. Once participants were identified, the objectives of the study were explained to them and they were asked to sign an informed consent document. After the consent document was signed, the research team scheduled the interviews. No selected individual refused to participate. Three female researchers who had previously been trained in the interview technique and script and who did not previously know the interviewees conducted the interviews. The emphasis throughout the interviews was empathic rather than moralistic. Interviews were performed in environments chosen by the interviewees to promote intimacy. All interviews were tape-recorded and were subsequently professionally transcribed verbatim. --- Data analysis We performed a thematic analysis of the discourse collected in the transcripts. The model of analysis used is a hybrid approach of inductive and deductive coding [14] with a previous coding tree, but open to additions of emerging categories or themes. Raw data was coded using the Atlas.ti 5.0 software in accordance with an ex ante code tree developed by two researchers on the team. During the coding process, emergent categories were progressively evident and the code tree was adapted accordingly. This way, we finally use 36 codes to label the raw data. From the process of connecting the codes and looking for patterns in the data, emerged 5 main themes which portrayed the phenomenon studied: The conception of sex and sexuality, the ideas about abortion, the perception and knowledge about EC, the reasons for using it and the barriers to using it. These topics are grouped into three large blocks in the results.We performed preliminary analyses during the course of the fieldwork to adapt the script and to assess data saturation. Differences in discourses between EC users and non-users were explored. The results were discussed and interpreted by the entire research team and were presented to selected participants in order to validate the data by triangulation. --- Results --- Population data The study population consisted of 19 women between the ages of 15 and 25. The descriptive characteristics of these women are shown in Table 2. Women of Latin American origin comprised 21% of the participants, while the remainder were natives of Spain. A large majority were students: one was a student enrolled in compulsory education, while the others were high school or university students. Most participants reported having a stable partner and only one of them was a mother. Five women reported having taken EC. --- Conception of sexuality and abortion and data regarding sexuality In exploring the meaning that sexual relations have to the interviewed women, we found that the discourses showed that sexual relations are associated with confidence in a partner, with love, and with friendship; and are seen as a way of showing affection. These discourses appeared more frequently among younger women. • With whom do you talk about sexuality? • What is the meaning of sexual relations to you? • How you have been educated? • Have you had sex with penetration? • What do you think about contraceptives, and what is your personal experience with contraceptives? 2. -Pregnancy and abortion. • Opinion about when and under what circumstances you should be a mother. • Opinion on abortion and personal experience with abortion. 3. -Emergency contraception. • What do you know about the morning after pill? • Information about your own experience and your environment. • Opinion on and experience with the dispensation of EC. • Exploration of false beliefs. However, some women, in addition to the discourses described previously, also introduced the concept of sex linked to pleasure and separated from love. A: "I have a conception that I do not care about love and sex, because I consider them separate. One thing is for pleasure and the other... Obviously you always have to have confidence. But love and pleasure are not always linked... That is, with your partner you can also share this, which is one of the most important parts, but the person you have sex with does not have to be your partner. And it is even more frequent. There are more and more cases, and I think it's the right thing to do because you do not have to have to tie yourself to a person with whom you only feel desire". . In exploring the discourses about the participants' views on abortion, we found widespread consensus in favour of abortion. Despite the strong social and emotional burden that condemns the act, the surveyed women would generally abort an unwanted pregnancy, although they classified it as a final option. It was observed that women try to overcome the contradiction that the abortion poses to them by defining the conditions in which this practice seems more acceptable. These conditions included a malformation or serious illness of the foetus, or the possession of inadequate financial resources to educate the child. A: "Because a religion, say, is something that invites you not to abort because they tell you, because it is your child, because it is the fruit of I do not know what and well, okay. I believe, I am a believer and I know perfectly the values that you are supposed to have, but you will not be able to have a child being a teenager. First, it's going to be very expensive for your parents and second, you will not know how to take care of it and, I do not know, I do not see it. I would prefer to abort because I know that that son will not be in the best conditions and to have it that way, no." . Regarding the information obtained about sexuality issues, most women reported that, to this day, these issues remain taboo within families. The peer group continues to have the greatest influence in socializing these topics. In addition, some women reported that the information they have received about these subjects has been provided in school. Q: "At home, have your parents talked to you about contraceptives and things about sex?" A: No. A: Yes, one day, yes. . Note that for those women who were sufficiently confident to talk about sexual aspects at home, the mothers rather than the fathers are the adult reference for these issues. A: "Not with my father. And with my mother, yes. My mother remembered that I started talking about sex when I first got my period and she spoke to me from a very scientific point of view, let's say, you have to use a condom and all that, but we have never spoken openly for example of masturbation or sexual pleasure or things like that, instead we've talked things like... you have to use a condom..." . --- Perceptions and knowledge related to EC All women interviewed reported hearing about the postcoital pill, even women who had not used it. They agreed that it is preferable to have access to EC rather than to have an abortion. They concluded that they have considered the option of EC and either have taken it or would take it out of a fear of pregnancy resulting from risky coitus. The issue that worried them the most was an unwanted pregnancy. In contrast, the discourse about protection against sexually transmitted diseases was not reported. Although all interviewees affirmed that they would not be reluctant to use EC, some commented that they would feel bad or even guilty about using it. "No, but what is happening is that there is this thing that is a bit weird, you know? And, I do not know, I may have taken it... six times or something like that and a friend of mine told me that she could only take it once every year, you know? Like there's something scary about it." . In exploring the participants' knowledge about how to take EC, we found that most women know that such medication should be taken within 72 h of unprotected intercourse and that its effectiveness decreases the longer the woman waits to take it. "... I think it's three days or five, I do not know very well, after having sex, but it's best to take it as soon as you've had sex and you've had some risk or something. You will not let go a month by knowing that you may have had something, and to have problems later." . Regarding the side effects that EC can produce, some women mentioned that they have heard that EC can cause dizziness and/or vomiting and that the overuse of EC should be avoided because it contains an excess of hormones. "...Is like a thing that's a little extreme because it's a hormonal bomb for your body, I do not think any woman wants to take it." Q: Do you think the pill has side effects? A: Yes. --- Q: Like? A: "I think a hormonal imbalance." . We also found references to the belief that EC is associated with abortion, although the nature of this relationship was not completely clear from the participants' discourses and may contradict reality. Q: "Do you think it's an abortion pill?" A: "Yes, because it does...that is, if you are pregnant...if you are not sure of being pregnant, you better take it. And yes, if you are pregnant, you kill the child." . We found that most of the interviewed women doubt the abortive nature of EC, but the desire to avoid an unplanned pregnancy overrides the concern about whether EC causes abortion. --- Reasons and barriers regarding EC In exploring the main reasons behind the participants' use of EC, we found that the main reasons are condom breakage or slippage. These accidents were most commonly related to the participants' first sexual experiences. Some interviewees said that either they or their friends have used EC because they had intercourse without using any contraceptive method. The participants also identified this behaviour with their first coital relations. "Well, two times I used it because I had two broken condoms. When I started having sex, I still did not know or did not control how you put it on and such. Then, one time, because I did not put it on and another because it stayed inside." . Furthermore, we discovered that some participants used EC for prevention of pregnancy because they were unsure whether they had had protected coitus. In most cases, this uncertainty was linked to alcohol or cannabis use. "I used it for safety because we had doubts whether a condom had broken or not, and I took it for safety." . "For that very reason, they were high on weed or had been drinking and it did not occur to them to use any contraceptives and, just in case, they went on to take it". . With one exception, all of the women interviewed who had taken EC the day after intercourse had taken it several times. Almost all of the interviewees had said that partners participate in the event, and even affirmed that the cost had been shared with their partner. The standard discourse was that the women make the decision of whether to use EC, and the women also involve their partners by requesting that the cost of EC be shared. A: "Yes, evidently, evidently, and he paid half each time, no way!" . When asked to identify the location from which EC was obtained, the participants stated either the health centre or the pharmacy. Furthermore, two of the interviewees indicated that health professionals in both the pharmacy and the health centre expressed moralistic messages about the use of EC and even expressed misleading messages about the number of times that EC can be taken. A: "Yes, I was told that in theory you could not take more than once in a lifetime". . A: "They gave me a pro-life speech and that it had to be what God wanted." . No differences of discourses between EC users and non users have been detected. This is explained because all the women interviewed who did not have experiences of using EC, had experiences of close friends who had used them. --- Discussion Our study shows that the women interviewed perceive EC as positive and that neither they nor their friends have issues with taking it, although some women admit to experiencing feelings of guilt. The main reason given for using EC is to prevent pregnancy. At the same time, false beliefs and misconceptions regarding EC are evident, especially those regarding its abortive effect and the exaggeration of its adverse effects. Participants stated that EC had been used because of condom-related accidents and less frequently because no contraceptive method was used. In general, the drug had been obtained either in health centres or pharmacies; some women reported that moralistic comments were made by the professionals who dispensed EC. We have compiled information regarding the conceptions of the women in our study about sexuality and sex education for use as a point of reference when interpreting the discourses. We note that younger women have a discourse relating sex to love and that they associate sex with stable partners. However, the older women and college graduates in our study tend to believe that sex is associated primarily with pleasure and that it is dissociated from love. The concept of romantic love, as much because of its internal conceptualization as because of the external experience of learning about loving others that it promotes, is considered by diverse authors to be an intrinsic part of the social subordination of women [15]. Thus, this study shows that this conception of romantic love continues to be reproduced in the current generation of young women. The peer group remain the primary source of socialization related to sexuality. Thus, Esteban affirms that networks of friends are often privileged spaces of sociability, reciprocity and encouragement for change [16]. The role of mothers as transmitters of knowledge and attitudes about sexual-affective education is important to highlight, although our results seem to indicate that such education remains a pending subject in our society. All of the women interviewed are aware of EC even if they have not used it and understand that the pill must be used within 72 h of intercourse to be most effective. These results coincide with those of similar studies [17,18]. Fontes [19] concludes that because EC is used correctly in 96.9% of users/buyers, knowledge regarding this medication may be considered as already sufficiently attained. The women in our study declared that EC is most commonly used as an immediate resource to avoid pregnancy and not as a routine contraceptive. Comparable results are widely described in other similar studies, suggesting that the myth about the misuse of this pill by the users is no longer relevant [13,20,21]. The main reason provided for the use of EC is the breakage of the condom or its slippage inside the vagina. These incidents were related to the participants' first sexual experiences and to the inability to correctly use a condom. Condom breakage seems to be a repeated theme in other studies, including a review performed by these authors [22] as well as in other international studies [6,12,23]. In addition, some participants mentioned that after a coital relationship, they were sometimes unsure that they had used the condom correctly, or they were not certain that they had used it at all. These perceptions were usually associated with the consumption of alcohol and/or cannabis. The use of alcohol and cannabis has been associated with risky sexual practices, possibly due to decreased inhibition and a lower sensation of risk [24,25] which are, in turn, factors related to the use of EC [26]. Regarding women's knowledge and misconceptions about EC, our findings coincide with previous results found by several authors [10,11,27]. A lack of knowledge about the mechanism of action of EC is present both in those who have used the pill and in those who have not. The lack of knowledge about the mechanisms of the drug in preventing conception or implantation may be why many women maintain false beliefs regarding the abortive effects of EC, as observed in our study and described by other authors [11][12][13]. However, the relationship between EC and abortion does not appear in a similar study conducted in an immigrant population [16], in which the women interviewed totally dissociate this type of pill from abortion. The findings of Ziebland et al. [6] are consistent with our findings about the exaggeration of the secondary effects of EC, describing the existence of beliefs regarding unwanted effects if EC is used repeatedly. Evidence exists that the uncomplicated dispensation of EC facilitates its accessibility, leading to an increase in its use. Since the sale of this drug became regulated in Spanish pharmacies, dispensation by pharmacies has increased and delivery provided by healthcare facilities has decreased, indicating the possible persistence of barriers to access through health care services [28,29]. Our study found that some professionals continue to impart moralistic messages about the use of EC, and even convey misleading messages about how many times it is safe to use EC. In turn, these messages reinforce feelings of guilt and false beliefs held by women, thereby hindering the proper use of EC and the consequent avoidance of pregnancy. Intentional selection of women by key informants could have resulted in a selection bias if women with more knowledge about emergency contraception were overrepresented. In that case, the discourses of more socially depressed women, with less knowledge about the different aspects of emergency contraception, which should be considered when looking at transferability to other settings. To prevent that, the theoretical sampling tried to diversify the educational levels and occupation of the women interviewed. That only 5 of the women surveyed had first-hand experience in the use of EC may be considered a limitation, but we believe that this circumstance does not adversely affect the validity of the results. The specific issues to be investigated related to the prevalent attitudes towards EC, and all of the women interviewed had either used or heard of EC. These issues include contraceptive failures; the nature of the established communication about sexuality within families, couples and peer groups; barriers to access; and the false beliefs that exist regarding contraceptive measures such as EC. All of these discourses appeared abundantly in the accounts of the women surveyed; the data are plentiful in this regard and seem to be internally consistent. Moreover, we did not identify differences in discourses between the EC users and non-users. This consistency could exist because non-users have commonly shared in the experiences of EC use by their peers. This exploratory analysis was part of a sequential mixed methods study about the emergency pill. The identification of themes and concepts has been useful in obtaining additional information about the factors related to the use of EC for inclusion in a quantitative study. The results of this study suggest the following public health implications, which are summarized in the following points, depending on whether they apply to young people, health professionals or parents: The sexual-affective health education received by young people should incorporate some of the findings of this work, such as the mechanism of action of the EC pill, to debunk false beliefs and misconceptions that may function as obstacles to its proper use. We must also design women's empowerment strategies to address guilt and moralistic messages, to promote detailed knowledge about the side effects of EC, to educate about prevention of errors in condom use and to address gender stereotypes. The use of a pedagogy based on meaningful learning would be desirable; in addition to increasing knowledge, such a technique may also further the development of appropriate attitudes and skills. The design of programmes and training activities aimed at health professionals, including community pharmacists, may also be necessary to improve the level of care that is currently provided. The tendency to exaggerate the side effects of EC should be reduced, as should the communication of moral messages for the purpose of encouraging fear and guilt; these messages represent a barrier to the responsible use of this medication. We propose that public health policies should influence how these messages are transmitted. In this respect, the contributions that are presented herein can serve as a starting point to approach the discourse of young women and to shape education and policies regarding sexual-affective health. --- --- --- --- Competing interests The authors declare that they have no competing interests. ---

Background: Emergency contraception (EC) is an effective postcoital contraceptive method for reducing the risk of unwanted pregnancy after unprotected intercourse. The estimated effectiveness of EC is between 70 and 89% if taken within 72 h following intercourse. Most of the studies carried out in Spain are quantitative and from the perspective of health professionals. In this study, we intend to explore the knowledge of, attitudes towards and discourse regarding the use of EC in women aged 15 to 25 years. Methods: Sample: A qualitative study including in-depth interviews with 19 women between 15 and 25 years of age was performed. Inclusion criteria: Participants were natives of Spain or of a Latin American country. Segmentation criteria: Participants had experience in the use of EC. Data collection: Participants were selected by health care informants and by the snowball technique among university students. Data analysis: A thematic analysis was performed. Preliminary analyses were made during the course of the field work to adapt the script and to assess data saturation. A preliminary code tree was developed by two researchers, and the coding of the text was done with the Atlas.ti 5.0 software. Results: EC is perceived positively by women. They do not express issues with taking it, although some feel guilty. The reason for taking EC is to avoid unwanted pregnancy and abortion. Women also feel that EC should be used in moderation. False beliefs and misconceptions regarding EC are held: EC delivers an excess of hormones, induces abortion and causes severe side effects. Women mention that the health professionals who provide EC have moral beliefs. Women use it because of condom breakage associated with their first coital relations. Conclusions: The results of this study have public health implications: The sexual-affective health education received by young people should incorporate clear information about the mechanism of action of the EC pill and its side effects together with empowerment strategies addressing guilt and moralistic messages. Programmes and training activities for health professionals must be designed to prevent the communication of inappropriate messages such as those that exaggerate the side effects of EC and those that promote fear and guilt, because they represent a barrier to the responsible use of this medication.

Introduction Technological innovation promises exhilaration with a backbeat of panic-everything will be NEW and DIFFERENT! EVERYTHING will be new and different! Of course neither promise nor peril are ever fully warranted or realized. When it comes to U.S. children and youth, adult responses to technology are intertwined with a sprawling panic about children's safety and well being, yet met with a differentiated and even nuanced response. In the 1980s, for instance, there was much discussion regarding how to teach children computer code . The logic at the time was that if a child learned how to program a computer, the computer would have a harder time programming the child. This idea led to largescale educational projects such as Logo that aimed to incorporate coding into play. In the No Child Left Behind era at the start of the 2000s, however, we have witnessed a reversal of such efforts. Attempts to produce media and technology literacy in classroom pedagogy run counter to the routinized and exam-oriented interests of NCLB curricula. In the contemporary educational environment where student scores on standardized tests determine a school's standing and funding, not to mention individual children's advancement, technology has become more of a vocational tool for efficient test preparation than a means of encouraging critical and creative thinking.1 Under these circumstances, playing with technologyparticularly code-or "hacking" is recast as deviant behavior. Meanwhile, parents and teachers-frequently insecure and relatively inexpert in the realms of computers and other digital technologies-all too often compensate for their lack of knowledge and skills with private surveillance and censorship technologies such as Net Nanny or CyberPatrol, which are intended to filter out putatively harmful content and interactions on children's behalf. As in other realms of contemporary life, insecurity in one arena galvanizes security practices in another . These practices imagine and invoke broad threats to children and youth, whom they cast more as witless victims than as thoughtful, informed, and often quite capable social actors. The other side of the security discourse around children and youth calls for protection from them, fostering a panoply of strategies to monitor them and their actions . Amidst such practices, hacking-discussed here as play, curious exploration, or as a puzzle solution that helps young people to better understand and control their environments -emerges as a site of invention and discovery as well as resistance to various technological fetters. When young people circumvent web filters and surveillance technologies, freely download and circulate music, or falsify information through, for example, entering incorrect information on their social profiles or trading or simply turning off their cell phones to disable GPS tracking capability, they take steps towards demystifying their technological environment. This paper examines the tension associated with children and youths' use of the Internet and computer technologies in school and at home, and the various commercial and governance practices that channel, monitor, and restrict their virtual engagements. We hope to show the benefits of young people's open-ended and unrestricted access to technological environments, the value of their learning how to manage and engage these environments and their associated technologies in an informed way, and the limits of technological strategies that filter, monitor, censor, and otherwise restrict young people's free and open engagement with their technological environment. 2 As we point to various household, corporate, and governmental encroachments on children and youths' technological encounters, we want to suggest that there is a fine and often blurry line between school and parental strategies for protecting youth in their everyday and technological environments and the sort of policing strategies associated with things like the Semantic Web or proprietary software. 3 These practices-the former associated with parents and others responsible for young people's well being, and the latter associated with the state and corporate capital-reinforce and provide alibis for one another, compromise claims to privacy by young people and others, and lubricate modes of hypervigilance that have become the new normal in the U.S. since September 11, 2001. But these relationships are anything but monological, as children and youths' playful engagements with the technological environment have made clear. Drawing upon our research with young people, we will identify some of the opportunities for and practices of reworking technological environments and their claims on children and youths' time, space, and subjectivity. --- A Laptop on Every Lap The intersection of young people and technology is a double whammy; each part of the pair is a site of anxiety. While youth are often seen as vulnerable to predators, distraction, and failure among other risks to healthy development and appropriate socialization, they are also cast as a threat to the smooth functioning of the larger society and its normative values. Likewise, technology is commonly scripted as a means to resolve social and political economic problems if not as a panacea for them, but it is also understood as a threat to social relations and wellbeing. That all of these understandings are flawed or at best partial makes them no less captivating. Here we examine the ways the relationship between young people and technology brings to the fore concerns regarding children and youth's vulnerability in and to technological environments, as well as their use of and capacities in these 2 Our criticisms of the apparatus and strategies devised for restricting young people's access to the Internet is not meant to suggest that all of the Web's content is appropriate for young people . We are pointing to the limits of technological fetters and the sort of blanket assumptions about children's critical capacities that often accompany them. As in every arena, these sorts of practices are no substitute for the social engagement of parents, teachers, and others in assisting children to mediate and manage their environments, technological and otherwise. 3 The Semantic Web , primarily conceptualized and developed by Tim Berners-Lee, can be understood as an extension of the World Wide Web that semantically codes information so it can be processed and interpreted across various platforms and programs through "automated" analysis. Whereas the WWW is designed so humans can read it, the SW formats information so computers can read it. environments. Our concern here is with the ways information technologies are deployed and understood in young people's environments, and particularly with the ways that children and youth's access to these environments is scripted and surveilled, encouraged and contained. We start with the encouragement, with a look at the vaunted One Laptop per Child Program . 4 OLPC is a case ripe for analysis due to its explicit focus on laptops as a means for education in developing nations. Its laudable aims notwithstanding, OLPC fashions the laptop as a silver bullet capable of penetrating the social, historical, and political economic factors that have hindered education in these environments. Yet, as two recent analyses highlight, OLPC's failure to address the full range of environmental factors associated with young people's learning in the global South is already limiting the project's influence , and even has the potential to have a "chilling effect" on children and youth's privacy and free speech . "Why do children in developing nations need laptops?" This seemingly rhetorical inquiry can be found atop a list of "frequently asked questions" on the One Laptop per Child website, the organization perhaps best known for its "$100 laptop," the XO Children's Machine. 5 Nicholas Negroponte, a founder of the MIT Media Lab and chairman of the OLPC initiative, responds: Laptops are both a window and a tool: a window out to the world and a tool with which to think. They are a wonderful way for all children to learn learning through independent interaction and exploration. 6 As a window implies a transparent opening and a tool implies a device used to implement certain functions, the statement warrants some unpacking with regard to the intended transparency and function of the XO. A follow-up question might ask Mr. Negroponte how transparent this metaphorical window is, and what kind of thinking this tool is intended to afford. We might ask what lessons these technologies teach young people and what we can learn from a better understanding of their playful interactions with them. As socially produced artifacts, technologies such as laptops are embedded in a particular social, historical, and political economic context. They bring with them a set of values and normative ideas that shape and are shaped by their production. What social relations these technologies in turn produce, reproduce, or challenge are objects of our concern here, and are of great importance to discussions of children and youth's technological environments. A look at the recent shift from free and open-source software to proprietary software at OLPC serves as a useful starting point in this endeavor. Our focus on OLPC's recent shift is not to argue that FOSS environments are more beneficial to children and youth, although such a case could probably be made. Rather, our intent is to unpack this particular decision in order to articulate how such a shift brings with it a set of values and normative ideas that we contend shape young people's engagement with their technological environments. Although our focus here is on OLPC, and thus children and young people's access to and use of these technologies in the global South, the concerns we address pertain more generally. With its antecedents in the 1960s, OLPC was founded in 2001 on the constructionist philosophy of learning popularized by the MIT Media Lab Professor Seymour Papert, which argues that children learn best through collaboration and creation . At its inception, the initiative's goal, at least according to its public statements, was to mass-produce low-cost FOSS laptops that would work in and be accommodated by the environments of children in underdeveloped countries and promote a constructionist learning model. 7 The XO is very light, extremely durable, and quite energy efficient. It can be foot-or solarpowered, and so can be used anywhere. 8 Most notable, and arguably most relevant to the constructionist model, is the XO's mesh-networking capability. This capability allows the machine to relay existing Internet connections, thus extending coverage via Wi-Fi, or to create autonomous wireless networks with other XOs when no Internet connection is available. All of this creative effort and thoughtful investment makes clear that at its inception, OLPC was intent on democratizing access to the technological environment by providing means to incorporate children and youth from the socalled third world. Moreover, the program-true to its constructionist philosophyencouraged children and youth's critical engagements in and with that environment. Yet, if these were OLPC's founding principles, they seem to have gotten lost along the way and even subverted in practice. Begun with FOSS, the "window" these laptops now make available to young people is increasingly a proprietary one-most notably, Microsoft's Windows operating system. Until recently OLPC had pointedly and publicly resisted bundling Windows with the XO. Even with numerous corporate partners, OLPC insisted that "software freedom" was central to their constructionist learning philosophy and necessary to give "children the opportunity to use their laptops on their own 7 Walter Bender, the former President and Chief Operating Officer of OLPC, was an advocate Papert's constructionist learning model, noting "children learn best when they are in the 'active role of the designer and constructor' and that this happens best in a context where the child is 'consciously engaged in constructing a public entity.'" Following Papert, Bender argued that "the creation process and the end product must be shared with others in order for the full effects" of the constructionist learning model "to take root" . 8 Information retrieved on May 17, 2008 from: http://www.laptop.org/en/laptop/hardware/specs.shtml terms."9 Sugar, a Linux based FOSS operating system designed by OLPC for the XO, had been described by OLPC as the "core" of their laptop's interface and essential to the sharing and learning affordances of the machine.10 And, it works beautifully. Yet in spring 2008, Microsoft, which with its legendary proprietary clout is the antithesis of OLPC's founding principles, succeeded in getting Windows onto the XO. According to a May 15, 2008 Microsoft press release, Windows will be available for the XO with "trials to begin in key emerging markets as early as next month" . 11 The move to include Windows is both material and ideological. It is sure to have a profound impact on future recipients of the XO and the continued unfolding of the OLPC project as we detail below. Its significance is underscored by a recent change in leadership at OLPC. Walter Bender, who was the president and chief operating officer of the organization until April 2008, was the lead developer of Sugar, a supporter of constructionist learning methods and principles, and a strong proponent of FOSS as congenial to these . The incoming president and COO, Charles Kane, was OLPC's finance chief and is a former software company executive. The change in leadership is not coincidental. In an interview with one industry magazine, Mr. Bender attributed his resignation to OLPC's decision to support the Windows operating system. Nicholas [Negroponte] has made it clear, at least to me, that OLPC needs to be strategically agnostic about learning-that it can't be prescriptive about learning... Nicholas had that wonderful quote in BusinessWeek about a month ago-that OLPC is going to stop acting like a terrorist and start emulating Microsoft. If you read between the lines, the idea is to stop trying to be disruptive and to start trying to make things comfortable for decisionmakers . Meanwhile, Mr. Kane noted the following in a separate interview with another industry magazine: The OLPC mission is a great endeavor, but the mission is to get the technology in the hands of as many children as possible... Whether that technology is from one operating system or another, one piece of hardware or another, or supplied or supported by one consulting company or another doesn't matter... It's about getting it into kids' hands . Of course, which software or hardware we deal with and which corporations supply or support them do matter. Kids are, after all, a rather large "emerging market." Moreover, an "agnostic" approach to either learning or technology-strategic or otherwise-further mystifies its production and "built pedagogy," which Torin Monahan defines as the "lessons taught by technological systems and spaces." The "built pedagogy" of a proprietized OLPC is utterly different than a FOSS one, and as the project goes increasingly global, virtually reaching the next generation worldwide, the consequences of these decisions will be profound. The rationale provided for this shift is revealing and central to our concerns. Mr. Negroponte cites a desire by decision-makers to see Windows on the XO before they agree to buy into the program. Indeed, Microsoft's press release includes a quote from the governor of Cundinamarca, Colombia, stating: Windows support on the XO device means that our students and educators will now have access to more than computer-assisted learning experiences. They will also develop marketable technology skills, which can lead to jobs and opportunities for our youth of today and the work force of tomorrow . The priorities implicit in such rationalizations are that an educational machine that affords learning and collaboration is not enough to warrant investment, whereas a vocational machine that will train a generation of young people for a future techbased workforce is worthwhile. This helps explain the decision to incorporate Windows even though it "cripples" the XO's mesh-networking capabilities . This is an unfortunate casualty considering that preliminary results from evaluations underway in New York City and rural Uruguay have highlighted the educational value of this feature in classroom activities . John Dewey argued that vocational training reinforces the existing industrial regime, suggesting that if it were incorporated into education it "would give to the masses a narrow technical trade education for specialized callings, carried on under the control of others." Although Dewey was discussing "industrial life," the same holds true of informational life. OLPC's aim seems more and more to be to put a laptop on the lap of every child, with less concern about how that laptop is mediated. When education takes a backseat to vocational training, it is not surprising that learning-oriented features of the XO such as Sugar or its meshnetworking capability take a backseat to corporate interests and security-after all, both Sugar and mesh-networking "terrorize," to borrow Mr. Negroponte's phrase, the security of Microsoft's intellectual property. 12 With these moves, OLPC's broad and exciting educational goals have been compromised-a curious position for an 12 It should be noted that Microsoft's Windows is widely pirated in the global South, so providing controlled versions for the XO can be seen as a counteraction to this. Additionally, by crippling the mesh-networking feature, they compromise the peer-to-peer communicative features of the machine, a feature that Microsoft has opposed in general. Finally, FOSS runs counter to the corporate philosophy of Microsoft and to the commodification and privatization of software in general. If people can get it free, why would they pay? One can read "Bill Gates's Open Letter to Hobbyists" to get a sense of his personal sentiments as well as the undergirding philosophy upon which Microsoft was built. organization whose website hypes the mantra, "It's an education project, not a laptop project."13 It took just one year for this shift to materialize and take hold against the profoundly idealistic founding principles of OLPC, which many of its supporters and participants still cherish. If the window is clouded increasingly by proprietary software and corporate interests, what sort of tool are these laptops for children? Ivan Krstić , the former top security architect for OLPC, responded to the impending switch from the FOSS platform to Windows by arguing: OLPC can't claim to be preoccupied with learning and not with training children to be office computer drones, while at the same time being coerced by hollow office drone rhetoric to deploy the computers with office drone software. Perhaps the answer to our question is: a tool of corporate subjugation. Not one that "programs the child" per se-after all, children and youth are never passive recipients of technology or knowledge but rather active participants and coconstructors-but one that by its very design privileges vocational training and seems to hamper creative play through the overlay of restrictive intellectual property rights. Close attention to the built pedagogy of the XO is needed as it shifts from an entirely FOSS machine designed for the promotion of open learning and sharing in the social and structural environments of the global South, to one that increasingly adopts proprietary software for the vocational training of a future global workforce. The lessons being taught-implicitly as much as explicitly-are of great importance to young people and the social formations in which they are coming of age. From the outset, thinkers and teachers like Seymour Papert could intuitively see the connections between hardware, software, learning, and knowledge together with their possibilities for creative engagement. Yet, this critical vision has been compromised by some of the recent decisions of OLPC, which appear to separate the means though which the hardware is produced and distributed from the ends to which it is, and can be, put. That OLPC seems increasingly to isolate its distribution goals from its learning goals raises the question of whether the program is reworking traditional modes of development, production, and use of computing or reinforcing them in the global South among the populations served by OLPC. The very subjects of computing-now and of the future-are at the heart of these matters. The almost utopian vision that initially spurred OLPC has increasingly and disconcertingly devolved to dovetail with much of the routinized and exam-oriented curricula associated with NCLB in the U.S. To treat the technological components of social formation as ends in themselves sidesteps the crucial questions of the built pedagogy of these materials for youth North and South. Simply taking the XO at face value mystifies its production and operation within particular communicative environments saturated with social relations of production and reproduction. And yet, as scholars such as Monahan argue, quite the opposite is possible if a critical approach to built pedagogy is taken. These "tools" and "windows" of young people's computing are produced and encountered within historically and geographically specific social formations, and should be engaged critically. Yet critical engagement with these technologies-in classrooms of the global North as much as in OLPC-is exactly what is now being discouraged in subtle and sometimes overt forms. Immersing people, particularly during their youth, in proprietary environments where information circulation is tightly controlled and intellectual property rights are strictly enforced helps to socialize a generation that will continue to play by the old rules for appropriation, distribution, and consumption, rather than imagine new rules and opportunities. When alternative social and technological relationships are imagined and enacted, such as in the case of the FOSS XO, they are typically perceived as a threat by government and private business, whose representatives have not hesitated to associate the supposed threat with "terrorism" in their zeal to squelch it. In this view, children and other young users are cast typically as both threatening and threatened. But it is play that is being threatened and co-opted here. Children's play in technological environments, including but not limited to the XO, is increasingly being shaped and channeled to socially reproduce behaviors and attitudes appropriate for future work in an informational economy. Again, young people are not passive in their encounter with this web of relationships and material social practices. What they do in these proprietary environments, and how they may reclaim and rework play for other creative and innovative purposes, is precisely what is at stake in key contemporary debates on youth and technology. --- Hacking It Hacker and hacking are terms that evoke wildly divergent meanings depending upon the context. In the contemporary lexicon, hacker is commonly defined in relation to computer/network security, the free and open-source software movement, and/or general computer hobbyists. Its most frequent-and deceptive-frame of reference in the post-9/11 security state has been in the context of computer/network security. 14 In this context, hacking is understood as cyber crime-politically motivated or otherwise-that is a threat to national security, corporate security, and personal safety. Websites often post a "hacker safe" or "hacker proof" banner to assure cyber-surfers that their transactions are "secure." An advertisement promoting the newly formed U.S. Air Force Cyber Command displays footage of the Pentagon while announcing, "This building will be attacked three million times today," and describing itself as "America's only Cyber Command protecting us from millions of cyberthreats everyday" . Meanwhile, network security firms such as Comodo, Network Solutions, and McAfee all offer security services to online businesses, promising them and their customers safety from the criminal activities of pesky hackers. Such framing runs counter to that of the hacker culture itself, which refers to these sorts of activities as "cracking," a neologism constructed during the early 1980s to distinguish computer crime from "hacking." The Jargon File, a prominent online resource for hacker terminology, defines a "cracker" as "one who breaks security on a system" and notes that: …while it is expected that any real hacker will have done some playful cracking and knows many of the basic techniques, anyone past larval stage is expected to have outgrown the desire to do so except for immediate, benign, practical reasons . 15 Thus, while hacking is the term most often used by those involved in "protecting" computer/network security, engendering a pejorative and criminal connotation, it would be more accurate to distinguish these activities as cracking. With "cracking" understood as the realm of criminal behaviors, the playful element of hacking associated with the FOSS movement or among general computer hobbyists comes to the fore. The MIT hackers, chronicled in Turkle's The Second Self, for instance, are presented as a geeky group of mostly young men more interested in "Ugliest Man on Campus" pageants and the wonders of technology and its possibilities than, say, cyber-attacking the Pentagon or corporate America. Turkle describes hackers as "loving the machine for itself." Torvalds suggests that for the hacker, "the computer itself is entertainment." In both cases the computer as a technological system is the object of interest-and play-for the hacker, and hacking emerges as a self-motivated and intrinsically pleasurable act. As The Jargon File presents it, "hack value" is often adduced as the reason or motivation for expending effort toward a seemingly useless goal, the point being that the accomplished goal is a hack. 16 Sounds a lot like play. Indeed, explaining how the MIT hackers were often expert lock pickers, many of whom carried picks on their key chains, Turkle notes how pleasure was derived from "beating the lock" rather than breaking-and-entering. Associating lock picking with the cliché that Mount Everest is there to be climbed, Turkle explains that to the hacker, a "closed system is a challenge." Richard Stallman, founder of the Free Software Foundation, states as much during an interview in the documentary Revolution OS . Marking his and other hackers' aversion to computer passwords and other modes of computer/network security, Stallman insists that computers should be open and available to everyone at anytime, not secretive and locked down. Turkle tells of a hacker who worked in a conservative corporate environment with a typical nine-to-five schedule, but realized that he was most efficient on a 36-hour schedule . To address the mismatch between his rhythms and the conventional spatialtemporality of his office, the hacker would pick the locked desks, file cabinets, and office doors at night, not to steal, but to work his preferred hours, achieving what he called "standard hacker time." In the prologue to Pekka Himanen's Hacker Ethic, Linus Torvalds, the creator of the Linux operating system and a famous hacker, formulates "Linus' Law" to help explain the world of hackers.17 Linus' Law proposes that hacker motivations fit three successive stages: survival, social life, and entertainment. According to Torvalds, hackers are not motivated to use their computers for survival but for social life and entertainment. Using the communal development of the Linux operating system as an example, Torvalds elaborates: The reason that Linux hackers do something is that they find it to be very interesting, and they like to share this interesting thing with others. Suddenly, you get entertainment from the fact that you're doing something interesting and you also get the social part. This is how you have this fundamental Linux networking effect where you have a lot of hackers working together because they enjoy what they do. As the Jargon File indicates, to "hack" is "to interact with a computer in a playful and exploratory rather than goal-directed way." 18 It was in this sense that OLPC held so much promise for children and young people. The computer itself as a technological system is an object of passion and entertainment for the hacker, at least in the context of the FOSS movement and among general computer hobbyists. This object-oriented pleasure and amusement along with the playfulness they promote, underlie what Himanen calls "the hacker ethic." Such modes of engagement are in a tense and even oppositional relationship with the "Protestant work ethic," which continues to undergird most corporate notions of productivity, though famously not in much of the high-tech industries. As Himanen argues, ...the information economy's most important source of productivity is creativity, and it is not possible to create interesting things in a constant hurry or in a regulated manner from nine to five. So even for purely economic reasons, it is important to allow for playfulness and individual styles of creativity since, in the information economy, the culture of supervision turns easily against its desired objectives. The tensions associated with this "culture of supervision" obtain in school and other settings where children and young people have access to electronic technologies. --- Getting the Hack of It We can see the rehearsals for and ricochets of these sentiments and practices in and around young people's lives, schooling, and computer use where the "culture of supervision' all too frequently thwarts playful learning and creative engagement with the technological environment. While space does not permit an extended discussion of children's play here, we want to underscore how thickly and fully it is intertwined with learning and experimentation and with the exploratory assimilation of knowledge. Parents, teachers, and others often hinder children's means of playing with knowledge-akin to hacking-by monitoring and channeling children's interactions with computers and the technological environment more broadly, or by not recognizing the charged relays among activities formally distinguished as work, play, or education. Apart from the ways the intrinsic pleasures of play are integral to healthy childhood development, play can also be quite "workful," while the best kinds of work share many of the attributes commonly associated with play . While this much may be obvious in the upper echelons of the high-tech industry, there does not seem to be much "trickle down" to the technological environments of young people's everyday life. Beyond this nexus between work and play but of a piece with it is recognition that in the course of play, youth enter a world of meaning, imagination, and symbolic engagement that they encounter and rework more or less on their own terms and in their own time. In the process, young people acquire all sorts of knowledge, but perhaps more importantly, they learn what it means to negotiate a social field and "move in a field of meaning" . These qualities of play mesh exactly with learning how to make sense of and build upon the capacities and possibilities offered by computers. Yet, rather than recognize and support the fine weave that joins work, play, and learning in children's technological lives, many adults-parents as much as teachers, as well as programs such as NCLB-harden the divide between what seems to be play and what seems to be the serious business of learning. The blurred boundaries between work, play, and learning-whether in time-space, in meaning, or in outcomes-are routinely ignored if not sharpened in many school settings. For example, in many computer labs, it is common for teachers to offer "play time" or "fun time" to help motivate students to do their school "work." This enticement usually boils down to ten minutes of unstructured time in the lab at the beginning or end of class when students are free to "play" on the computers. While it's meant as an incentive, this practice frames part of the class as "fun" or "playful" and the other as "work" and "educational"-separating the two realms in theory and practice as well as in time. Hiving off play from work not only drains all of the playfulness out of schoolwork, but creates a community of practice geared more to standardized tests than to learning . These regimes of practice carry over to the workplace where surveillance and censorship are often used to make sure that employees don't "goof off" at the computer while on the clock. --- ITS These monitoring systems notwithstanding, there is still plenty of "play" in the workplace, and sometimes it produces terrific "work." An example from the early days and heart of workplace computing makes the case. In the late 1960s at MIT's Artificial Intelligence Lab, hackers developed an operating system they called the "Incompatible Time-sharing System" , a play on the "Compatible Time-sharing System," an operating system in use at the time. ITS was motivated by an aversion to the development and use of Multics, an operating system that was one of earliest to be designed as a "secure" system. ITS did not require users to log on, it had no passwords, and any user could edit any file. A command called "OS" for "output spy" permitted anyone to view another's terminal while those "spied" on were notified. ITS was an example of how hacking-and the playful spirit that often accompanies it-allowed a group of people to develop a virtual time-sharing environment that was conducive to their needs and desires. Using ITS, they could really be co-workers with a more productive process than allowed by the systems that promoted security and hierarchy over cooperation and lateral connections in the electronic work environment. As Sherry Turkle put it, the development of ITS "became a model for a mode of production different from the standard, a mode of production built on a passionate involvement with the object being produced." And, one might add, with those with whom one works . Indeed, "The language, humor, and values developed by the ITS hackers form the foundation of our contemporary understanding of hacker culture" and suggest the richness of the hacker imagination . If, as Raymond suggests, the ITS hackers simply wanted a practical solution to address their immediate needs it was also the case that "ITS, quirky and eccentric and occasionally buggy though it always was, hosted a brilliant series of technical innovations and still arguably holds the record as the single time-sharing system in longest continuous use." The outcomes of such playful work and workful play shows the productivity of their combination, a productivity enhanced rather than diminished for being pleasurable. These connections and outcomes are as true for children as for adults. Indeed, this sort of philosophy drove the early development of educational technologies such as Logo and the inception of OLPC, and much in between. While youth may not hack at the same level as members of the Artificial Intelligence Lab at MIT, they are curious, creative, and capable. It is on these grounds that we urge an understanding of hacking as play, as curious exploration, and as a sort of demystifying activity that helps young people to better understand and manage their environments . The case of the "mosquito" demonstrates how adeptly young people can manipulate a controlled and monitored technological environment as they put their play to work. The Mosquito Mosquito is a classic example of a struggle between adults trying to shape the spatial-temporality of childhood in what has become increasingly a security state, and children shaping it themselves in part by hacking technology. In 2006, the New York City Department of Education began enforcing a long-standing ban on cell phones in school. Parents were vociferous in their objections, turning the ban into a safety issue that tapped easily into the free-floating terror talk of post-9/11 New York. Parents went so far as to sue the Department of Education, arguing that cell phones were "a vital communication link" between them and their children, but the courts upheld the ban. For quite other reasons, students were not about to leave their phones at home, nor forgo their use entirely during school hours. The students found an ingenious means to evade the authorities. The "mosquito" is an ultrasonic teen deterrent that was designed to promote "kid free" commercial zones by emitting a high-pitched noise that can only be heard by young ears, generally people under 30. Some students realized that they could use this ultrasonic sound for their own purposes, and made it the ring tone for their cell phones. With their phones out of earshot of most teachers, the students were able to continue to use them in school, mostly to exchange text messages. The fact that the students could have probably gotten around the restrictions by setting their phones to vibrate underscores the "hack value" of the mosquito: it was predicated on its social and entertainment value over questions of "survival." While teachers and school administrators may not have appreciated it, the students' adaptive re-use of the mosquito was deft and creative, the very essence of hacker culture, which many have argued is a key driving force of creativity and innovation in an information economy . Imagine if educators built upon such activities and the sensibility that accompanies them, encouraging these sorts of hacker ethics and practices in the classroom rather than shutting them down and continuing to sequester what they see as work from what they understand as play. Hacking, as we've suggested, can be a demystifying act that simultaneously comes out of and leads to experience-based shared learning about one's technological environment. Such collaborative cultural forms and practices create a "zone of proximal development" in which children are able to negotiate, playfully experiment with, and thus more fully understand some of the ideas, structures, and rules of the technological environment and the social practices that produce, reproduce, and alter them. Through playful exploration a young person can experience the limitations as well as the potentials of technological systems, leading to a greater awareness of their built pedagogy and social entailments. As a result, young people can begin to engage and understand the more problematic and even ominous elements of power operating in their environment, including those elements associated with government and corporate interests. An exceptional yet instructive example of this sort of engagement is provided in the case of AriX, the 13-year-old iPhone hacker. --- AriX and the iPhone On June 29, 2007, Apple released the iPhone in the U.S. to much fanfare, selling 1 million during its first 74 days on the market . Apple had signed an exclusive multi-year deal with AT&T, designating the telecommunications giant as the only carrier supported by the iPhone in the U.S. 19 -i.e., anyone who wants to "activate" an iPhone purchased in the U.S. is required to subscribe to AT&T's wireless service. In today's emerging informational economy this arrangement should be understood as a monopoly-inducing partnership. However, when Apple and AT&T began releasing sales figures for the iPhone, there was a noticeable and growing gap between the numbers of iPhones sold by Apple and the number of iPhone owners who signed up for AT&T's wireless service. According to CNET, there was a gap of 124,000 after the first weekend of sales, with that gap ballooning to 1.7 million by the end of 2007 . While part of this can be attributed to the approximately 350,000 iPhones sold in European countries in which Apple signed exclusive deals with other wireless services, there was still a gap of about 1.35 million iPhones. By design, the operating system on the iPhone discourages individuals from developing and installing third party applications. Functioning much like "parental controls," individuals are allowed to use an off-the-shelf iPhone only as Apple deems appropriate. 20 Nonetheless, the owners of the 1.35 million U.S. iPhones not using AT&T were not doing without telephone service. Rather, the majority of the phones had been hacked to allow their owners to use them with any GSM wireless provider they chose. 21 Immediately following the iPhone's release, a large and ever-growing community of hackers began to develop methods for "jailbreaking," "hacktivating," and "unlocking" it. "Jailbreaking" opens up the operating system so that third party applications can be installed, while "hacktivating" augments or bypasses the iTunes-based activation process in order to trick the iPhone into "thinking" it has been activated with the officially designated wireless carrier. "Unlocking" an iPhone releases the SIM card lock and allows an individual to use any wireless network. 22 While these interventions are practical in that they give individuals freedom of choice in regard to wireless service providers and the kinds of applications they 19 Similar deals were signed with carriers in other countries and in a few cases, such as Italy, Apple signed a deal with more than one carrier. 20 While a number of countries including Germany and France require Apple and their locally designated wireless carrier to make unlocked versions of the iPhone available to customers, albeit often at twice the price, no such requirement exists in the U.S. 21 GSM is the leading mobile communication standard in the world. Currently, of the four major wireless service providers in the U.S., only two support GSM. 22 While the exact definitions of "jailbreak," "hacktivate" and "unlock" vary and at times overlap, the definitions used in this paper attempt to summarize those used most often within the online hacker community. In particular, the post "Jailbreak is not Activate is not Unlock" from the Hackint0sh Forums, was a useful guide. The post was accessed on June 9, 2008 and can be found here: http://www.hackint0sh.org/forum/showthread.php?t=32703 want installed on their devices, they are also forms of political engagement because they challenge-often quite intentionally--the monopolistic business practices of Apple and AT&T. It was a 13-year-old boy known as "AriX" who developed iJailBreak, the first of its kind available for the iPod Touch and one of the most popular jailbreak applications available for the iPhone. iJailBreak is a FOSS application that once downloaded to and run from an individual's computer, uses an automated process to "jailbreak" an iPod Touch or iPhone. The iJailBreak application is available to all as a free download and is licensed under the GNU General Public License v2, which ensures its status as a free and open-source program. 23 At just 13 years of age, AriX had an influential and expansive digital footprint, including iJailBreak.com, the website jointly maintained by AriX and his 13-year-old friend Ben. 24 Two interviews conducted recently with AriX reveal not only a playful hacker who developed iJailBreak through personal exploration and community contacts, but also a young person who understands his own experiences in opening up and demystifying the iPhone in relation to the broader politics at play in his technological environment. Displaying a hacker ethic, AriX appears to be less interested in material gain than in the joy of hacking itself, though he also seems to enjoy the notoriety and regard associated with it as well. In one interview conducted on March 26, 2008 with a British blogger and made available as a podcast, AriX sounded every bit your ordinary 13-year-old boy. In between laughter, self-deprecating apologies, and the background screaming of his younger brother, however, AriX displayed an extraordinary knowledge of both the iPhone and the corporate policies of Apple, particularly when discussing Apple's plan to allow third-party applications on the iPhone through a more controlled and commodified process officially facilitated through an iPhone Application "Store." This sort of privileged arrangement is, of course, intended to limit the free-flowing exchange of FOSS applications available to those who have jailbroken iPhones. At the time of this interview, Apple had released an iPhone Software Development Kit that allowed programmers to build programs for use on the iPhone once Apple made its move to sanction and even facilitate third party applications. When the interviewer noted that SDKs tend to be closed, meaning that the application programming interfaces provided to participants are often heavily regulated by their provider, AriX hesitated to reply. Aware of the Non-Disclosure Agreement to which 23 The GNU General Public License v2 can be found here: http://www.gnu.org/licenses/gpl-2.0.txt. Interestingly, "GNU" itself is a hack, it is a recursive acronym crafted by Stallman who made the "copyleft." It stands for "GNU's Not Unix" since GNU is the free OS he developed in contrast to the proprietary Unix . 24 As of June 8, 2008, iJailbreak.com was linked to by 507 people on del.icio.us , had a rank of 1,092 on Digg It and had received 541 blog reactions according to Technorati . AriX's Twitter account boasted 355 "followers" . he was bound as a user of the iPhone SDK, AriX proceeded with a measured yet interesting insight: Ok, this is hard… at the announcement they said these were the same tools that they were using to develop their applications. That's not true. I'm not going to go any further. The applications that are on the iPhone are more powerful than what you can do with the SDK. At just 13, AriX had already experienced the "world of difference" Papert noted "between what computers can do and what society will choose to do with them." Continuing on this theme, the interviewer noted that he had heard rumors suggesting that only Apple's applications would be able to "multitask." AriX replied, The truth is that that's just a guideline. They are suggesting that you don't do that. Now, the sad truth may be that they won't let applications on the app store [iPhone Applications Store] that will stay open in the background; that may happen. AriX then proceeded to discuss how another SDK programmer used the jailbreak method to develop a hack that allows programs to stay open, and concluded: I'm 100 percent sure that Apple will let AOL run their AIM program in the background. The speculation among programmers and raised by the interviewer is that applications produced by third parties will not be able to run simultaneously with other programs on the iPhone, requiring the user to close one program completely before running another one. AriX's response is notable because he refutes this rumor as a "guideline" not a limitation and cites an example of a programmer who has figured out how to create a program that "multitasks." Additionally, he points out that Apple may "choose" to restrict such applications from their online store and acknowledges the likelihood that America On Line would be allowed to create an AOL Instant Messenger application that runs in the background. AriX is clearly astute in his understanding that the power of closed proprietary systems lies in controlling who has access. While corporations like AOL aren't likely to find themselves restricted by the iPhone, the "mom and pop" operations that generate the majority of FOSS applications available through hacktivated iPhones at present may well be shut out. In an article entitled "Hacking: The New Child's Play?" posted on an IT security website, AriX is associated with a list of young crackers who have engaged in malicious and clearly criminal activities. With the subtitle "Researchers worry as teens and pre-teens play an increasing role in illegal online exploits," the piece makes no distinction between the hacking of AriX and the reported computer crimes of the other youth profiled, even though the latter's activities included derailing trains in the Polish city Lodz and stealing considerable sums of money from people's bank accounts . The distinction between these activities and hacking like AriX's is clear. But even at that, the U.S. Librarian of Congress granted six exemptions to the DMCA in 2006. The fifth exemption was Computer programs in the form of firmware that enable wireless telephone handsets to connect to a wireless telephone communication network, when circumvention is accomplished for the sole purpose of lawfully connecting to a wireless telephone communication network . While jailbreaking, hacktivating, or unlocking an iPhone may void its warranty, it is not illegal. Wireless telephone communication networks such as AT&T are legally entitled to "lock" hardware into their services, but they cannot stop individuals from unlocking that hardware and legally using it with another wireless telephone communication network. Torin Monahan points out that within much of the security discourse young people are framed as either "criminals" in need of policing or "victims" in need of protection. With the criminal side of this binary inapplicable, perhaps AriX is a victim caught up in a complex and dangerous technological environment beyond his understanding? Not so, according to his mom. Dropping in for a guest appearance at the end of one interview, AriX's mother was asked how she felt about his hacking. She responded: Well, we've had some concerns about repercussions, but in general we are very proud of what he has accomplished. And he has been really careful about explaining all of the potential repercussions. And when he is not concerned, we are not concerned… he's a good kid . In a separate interview with another blogger on February 1, 2008, AriX is joined by his friend/co-hacker Ben. When asked by the interviewer what their favorite movie was, Ben exclaimed, I don't watch movies-I won't support the MPAA or RIAA-same reason I won't buy from iTunes . Based on the limitations of this particular interview it's impossible to assess whether Ben's resistance towards the MPAA or the RIAA motivates his hacking or if his hacking has motivated his resistance. What we can deduce is that there is a relationship between the two. As powerful trade groups representing the U.S. recording and motion picture industries, the RIAA and the MPAA have been at the forefront of promulgating means of ensuring copy and content protection known as Digital Rights Management . They were prominent backers of the Digital Millennium Copyright Act , which sets tight controls on the use of copyrighted works and criminalizes the circumvention of those controls. It seems that Ben would rather forgo watching movies than capitulate to the MPAA's control of their circulation. Likewise, his boycott of iTunes is due to Apple's reluctant policy of encrypting the music it sells to control the music files' circulation. 25 AriX is a skilled and savvy actor in an evolving technological environment. He is neither a victim nor a criminal. As his environment becomes increasingly proprietary and privatized, hackers like AriX and Ben make sure that vibrant avenues for free play and experimentation are still available. Through playful exploration of the technological environment they are empowered, not endangered. AriX's mom understands this, but perhaps more surprisingly, so do the researchers at the Crimes against Children Research Center whose recent findings challenge the perception of young people as naïve victims-in-waiting online. Narratives of young people victimized by sexual predators through the Internet have become commonplace, typically highlighted by politicians and sensationalized in the media. Yet a study published in 2008 by CCRC challenges this received wisdom . Among the study's findings was that the discourse around young people as "vulnerable" to online sexual predators due to "naïveté about the Internet itself is not accurate." The authors note that by early adolescence young people "generally understand the social complexities of the Internet at levels comparable to adults." Young people, it seems, are more commonly informed and self-possessed around the Internet than they are its helpless or naïve victims. Any intervention in the name of protecting young people from unwanted electronic contact should acknowledge their agency and promote their critical thinking skills. Protectionist measures such as surveillance, "filtering," and outright censorship are antithetical to this understanding and work against its grain. In the long run, such strategies can debilitate young people's critical capacities and encourage their attenuated dependence on parents and others to make social judgments and decisions on their behalf. Moreover, as the case of PeaceFire.org clearly demonstrates, filtering and censorship measures draw on methodologies that are not only somewhat omnivorous in what they block, but also can be subverted pretty easily by young people. Started by Bennett Haselton when he was 16 years old, PeaceFire.org has helped to expose the flawed practices of filtering software by revealing the blocking of human rights websites such as Amnesty International, candidate websites from the 2000 elections, and even pro-blocking websites such as FilteringFacts.org. PeaceFire.org also helps to connect children and young people with proxies that 25 We use the word "reluctant" to describe Apple's encryption policy since Steve Jobs, Apple's founder and CEO, has openly called for its change. Digital music files are typically found in MP3 format, yet digital music downloaded from iTunes includes an extra layer of Digital Rights Management encryption in the MP4 format. This extra layer of encryption limits to five the number of machines one is allowed to copy the file. Jobs wants to remove the DRM encryption layer and has cited the major record labels as the reason why Apple must include it. Steve Jobs' letter, "Thoughts on Music," can be found here: http://www.apple.com/hotnews/thoughtsonmusic/. allow them to circumvent filters. 26 While protectionist measures are often flawed and ineffective, the message they send to kids is unmistakable: you are being monitored and your access to information is being filtered, and/or censored. Whether they "work" or not, such strategies are built upon and foster a basic distrust of young people and their capacity to understand information and read social situations. Restricting the choices available to youth in their technological environments, these strategies narrow the ambit of their engagements and reinforce the tired notion that kids are always threatened and threatening. --- Conclusion The "Cookie Monster" is one of the earliest known computer viruses. Once installed on an individual's computer it would periodically interrupt computing and present a message demanding a "cookie," much like the Sesame Street muppet with whom the virus shares a name. When the individual typed "cookie," the virus would recede to the background only to return for more cookies later. According to Turkle , the Cookie Monster was used as a "hacker harassment" program to test new hackers at MIT. If an individual could slay the Cookie Monster, and thus prevent it from seeking future cookies, they proved themselves as a hacker. In the contemporary commercial and security environment we confront a new breed of "cookie monsters," much less amusing and potentially quite harmful. Most obvious are the digital cookies that have become so ubiquitous in cyberspace that few people take notice of them, which is exactly the problem. "Cookies" are digital files automatically placed on an individual's computer upon visiting most websites. These files then communicate information about an individual's online activities and preferences back to the server of the website that planted the cookie. Teens and college students combined spend nearly $400 billion a year, and now spend more time in cyberspace than in front of the TV . The information gathered by these cookies on their computers is an invaluable commodity to business and government. Classifying cookies as one of many "technologies of control," Castells notes that such technologies work only under the condition that "controllers know the codes of the network" while "the controlled do not." Ensuring that this condition is maintained, capital and the state pursue policies and programs that are dedicated to what can only be called "hacker harassment." Overcoming these "hacker harassment" programs not only would make someone a hacker but also an empowered player-an informed citizen-in the technological environments of contemporary life. And it is these sorts of possibilities, and their impediments, that we have been detailing here. Whether it is the proprietary shift in the OLPC project, the monopolistic business practices of AT&T and Apple, or the separation of play and work in the computer lab, the spatial-temporality of children and youth's technological environments is often configured to restrict their freedom of choice and behavior. These measures dovetail with others taken around children's technological and everyday environments in the name of "security." Whatever the impulse, these managed environments serve to produce and reproduce an informational ideal wherein youth are cast as complacent and vulnerable "users," with much of their potential agency underestimated and undermined rather than encouraged. Yet as we have shown, young people are often informed, savvy subjects of their technological environments who have time and again proven themselves quite capable of negotiating the various changes and challenges these environments pose. Through hacking and other strategies, young people can better comprehend and assert control over their environments , at once learning as they go and helping to ensure that the effects of the forces structuring these environments remain indeterminate. Whether playful, political, geeky, or all three, when young people manage to hack their technological environments through practices such as Logo and its descendents, subverting the Mosquito, or jailbreaking the iPhone, they are reclaiming some degree of freedom regarding their choices and behaviors in these and other settings . When they develop organizations such as PeaceFire.org or create collaborative mechanisms like ITS, young people produce opportunities for better understanding and reworking technological environments and the claims they place on their time, space, and subjectivity. As a hacker, AriX was neither threatening nor threatened in his technological environment. Rather, by challenging the "cookie monster," in this case, Apple and AT&T's lock on the iPhone, he became both empowered and empowering. Empowered by his experiential knowledge, which allowed him to increase his freedom of choice and behavior with the iPhone, AriX was simultaneously empowering-and surely inspiring-to others with his iJailbreak application. In this context, hacker culture can be understood as a source of power in the economic restructuring motivated by informationalism, as well as with regard to what Zuboff dubbed informating. 27 Informating refers to the sorts of data that become available through the use of information technologies in the workplace to transform information into action. Zuboff notes that while this information is available to people such as workers who are engaged directly in processes subject to informating, it is simultaneously available to those who would monitor and/or supervise those interactions. Zuboff's focus was the workplace and the new modes of labor, supervision, and discipline informating made possible. At a whole other scale, the Semantic Web and digital "cookies" work in a similar fashion, with similar contradictory effects on people's privacy and thus their freedom of choice and behavior as well. The extensive information aggregated by cookies, which helps open the sluices of commerce around young people, and the way the Semantic Web makes such information more circulatory, paves the way for greater state surveillance and more intimate, targeted, and seductive product marketing. 27 According to Manuel Castells , "informationalism" is "a technological paradigm based on the augmentation of the human capacity in information processing around the twin revolutions in microelectronics and genetic engineering." Hacking can be understood as part of a struggle to subvert or neutralize such attempts to control and circulate information and the myriad assaults on privacy that they represent. This is why corporate and state regulation of hacking-through the criminalization of certain behaviors in certain spaces and the commodification and privatization of technological environments through such things as proprietary software and careful restrictions around intellectual property rights-is intent on rationalizing, aggregating, and using such power to reinforce "security" rather than call it into question. If hacking, in its broadest and most creative sense, is encouraged among young people in their encounters with the technological environment at home and school, then maybe everything will be new AND different, as security measures that erode privacy and thwart autonomous initiative start to give way to open and collaborative work, play, and learning that expand kids' freedom of choice, and thus just might secure the future. --- Gregory T. Donovan

This paper examines the benefits and obstacles to young people's open-ended and unrestricted access to technological environments. While children and youth are frequently seen as threatened or threatening in this realm, their playful engagements suggest that they are self-possessed social actors, able to negotiate most of its challenges effectively. Whether it is proprietary software, the business practices of some technology providers, or the separation of play, work, and learning in most classrooms, the spatial-temporality of young people's access to and use of technology is often configured to restrict their freedom of choice and behavior. We focus on these issues through the lens of technological interactions known as "hacking," wherein people playfully engage computer technologies for the intrinsic pleasure of seeing what they can do. We argue for an approach to technology that welcomes rather than constrains young people's explorations, suggesting that it will not only help them to better understand and manage their technological environments, but also foster their critical capacities and creativity.

Introduction The currents of globalization and modernization, trigger elements of foreign cultural elements to enter the life of the community. If the elements of the foreign culture are incompatible with the local culture, then the local culture, is feared that it will gradually fade. The city of Bekasi, which has undergone modernization and globalization, is not TSBEC only characterized by physical changes in its territory, but also affects the fading of local wisdom of the community. The local wisdom of the community that was once carried out and preserved in decline is now beginning to shift and be replaced by modern culture influenced by outside culture. This day, one of the local wisdom that can still be found is mutual cooperation as a unifying form in carrying out the social life of the people. Mutual cooperation in organizing activities of the Betawi Bekasi ethnic community is known as Paketan. This type of local wisdom is what still remains today, especially in the communities of the Betawi Bekasi ethnic community who live on the outskirts of Bekasi City. Meanwhile, the people of Kranggan Village, Jatirangga Village, Jatisampurna District who are still maintaining strong and preserving cultural life and customs that are closely related to Sundanese customs are Babarit, because this village is located right on the border of Bogor Regency. They have a tradition that has been kept for generations and is said to have existed for centuries. The culture of Bekasi City itself is a mixture of Sundanese and Betawi cultures, so that the indigenous people of Bekasi City are known as the Betawi Bekasi ethnicity. The Betawi Bekasi ethnic language also has a distinctive feature, namely the dialect is Sundanese, but the diction is Betawi language. So for this reason, Betawi culture is very thickly seen in the daily life of people in Bekasi City, so the Bekasi area is called Betawi Ora or Udik. The Jati Rangon area is a village located in the Jatisampurna area of Bekasi City, West Java. Jatisampurna Subdistrict is part of the city of Bekasi which is located in the southern part of the city of Bekasi and is directly adjacent to East Jakarta. Its strategic location makes Jatisampurna district one of the buffers for the capital city of DKI Jakarta. Jatisampurna Subdistrict has an area of 1,944,013 Ha, with a population density. Administratively, the boundaries of Jatisampurna sub-district are as follows: South: Bogor Regency/ Depok City, West: East Jakarta City/ Depok City North: Pondok Melati and Districts, East: Bogor Regency. The total population of Jatisampurna is male 67,226, female 67,965 the total population as a whole is 135191. Babarit is an acronym for the word "ngababarkeun ririwit" which means eliminating trouble or in other words it can be referred to as "Salametan Earth". People will pour their gratitude towards nature, ancestors, and the Creator. The ceremony is also held to welcome the coming of the Saka New Year and takes place twice every year. While Packages can be interpreted as a form of social solidarity in society. The concept of social solidarity was first introduced by Emil Durkheim in his book entitled The Division of Labor in Society. Social solidarity according to Durkheim DOI 10.18502/kss.v8i12.13667 TSBEC is: "Fidelity which refers to a state of relationship between individuals and or groups based on shared feelings, morals and beliefs that are strengthened by shared emotional experiences." Similarly, the Babarit ceremony is to foster a sense of togetherness and instill great values in the life of social institutions. --- Research question Based on the above description is to obtain detailed and in-depth data from the Babarit tradition through Roland Bartres' semiotic analysis in local wisdom suc as such as the values contained in the babarit tradition through ethnigraphic studies, analyzing the relationship of symbolic, paradigmatic, syntagmatic signs and language, speech and culture. --- Theoretical purpose This research is expected to develop Communication Science, especially cultural communication and marketing communication and new media communication. --- Practical use This research is expected to be a reference material in promoting the village tourism based on local wisdom. --- Tourist Village Concept According to Priasukmana and Mulyadin [1], Tourism Village is a rural area that offers a whole of an atmosphere that reflects the authenticity of the village itself starting from social culture, customs, daily life, has a typical village architecture and spatial structure and from socio-economic life or activities. a unique and attractive economy and has the potential to develop various components of tourism, such as attractions, accommodation, food and beverages, souvenirs, and other tourist needs. Rural tourism development is driven by three factors. First, rural areas have natural and cultural potentials that are relatively more authentic than urban areas, rural communities still carry out cultural and topographical traditions and rituals that are quite harmonious. Second, rural areas have a relatively pristine physical environment or have not been heavily polluted by various types of pollution compared to urban areas. Third, to a DOI 10.18502/kss.v8i12.13667 certain extent rural areas face relatively slow economic development, so that optimal utilization of the economic, social and cultural potential of local communities is a rational reason for developing rural tourism. --- Village characteristics Each tourist village certainly has its own characteristics, this is seen from the potential in the village so that it is worthy of being used as a tourist village. The management of a tourist village as a tourist attraction is not only limited to its designation as a tourist village. The determination of a village as a tourism village is based on at least several supporting potential components, as follow: 1. There is something special and very unique attraction by the village itself. 2. Tourism facilities and accommodation such as lodging facilities, eating and drinking facilities, hawker or souvenir centers, visitor centers. 3. Tourist activities such as weaving, enjoying the scenery and others. 4. General development as an effort to create a tourist destination that provides the best service for tourists, including the division of zones or areas, visitor management, and communication services. --- The development of tourist villages Influence factors 1. Human resources development can be carried out through education, training and participation in seminars, discussions and so on, as well as in the fields of tourism. 2. Partnership, There is good and mutually beneficial cooperation between the tourism village manager and tourism entrepreneurs in the city or the relevant regional tourism office in several business fields, namely accommodation, travel, promotion, training, and others. --- 3. Government activities, There are activities carried out by the village government, for example, such as official meetings, development exhibitions, and traditional ceremonies held in tourist villages. 1. Tourism promotion DOI 10.18502/kss.v8i12.13667 TSBEC Promotion in the English language comes from the word promote which is interpreted as developing or increasing, i.e. such as a tool to increase sales [2]. Promotion is an activity carried out to convey a certain message about a product, either goods or services, trademarks or companies, to consumers to assist marketing to increase sales. According to Tjiptono [3], the functions of promotion are: 1. Finding and getting the attention of potential buyers is the starting point of the decision-making process in buying goods and services. 2. Creating and growing interest in potential buyers. The attention that has been given, may be continued at the next stage, namely the existence of a sense of interest in the products offered. 3. Development of curiosity of prospective buyers to own the goods offered. This is a continuation of the previous stage, after being interested in the product offered, a sense of wanting to own it arises and is followed by a decision to buy. --- Promotion purpose --- To Informing --- To Persuade That is to persuade potential consumers to want to buy goods or services that offered. 1. To Remind 2. To remind consumers of an item what is needed and where to get it. --- Media content Social media is defined as a platform for sharing text, images, audio and video with other users. The use of social media increased quite rapidly during the pandemic because it allowed humans to search for information and communicate through their mobile phones. According to Kotler and Keller [4], social media is a means for consumers to share text, image, video and audio information with each other and with companies. Social media helps tourist attractions in interacting with their potential customers. Social media content itself can be classified into two, namely, firm-created and usergenerated. With the use of good social media content, it will help to form a good destination image and increase the interest of tourists to visit. According to Puntoadi [5], social media function as follows: DOI 10.18502/kss.v8i12.13667 1. The advantage of building personal branding through social media is that there are no tricks or pseudo-popularities, because the audience will decide. Various social media have become a medium for people to communicate, discuss and even give popularity on social media. 2. Social media provides an opportunity that serves to interact more closely with consumers. Social media offers a more individualized communication content. Through social media, various marketers can find out the habits of their consumers and carry out a personal interaction, and can build a deep interest. The types of social media platforms are: 1. Facebook: a social networking service launched in February 2004 by Mark Zuckenberg has more than one billion active users and more than half of them use a mobile phone to access it. Here users can create personal profiles, add friends, exchange messages and share information. --- Local wisdom concept According to the Ministry of Social Affairs of the Republic of Indonesia 2006, local wisdom is defined as a way of life and a knowledge system as well as a variety of life strategies that can be realized in activities carried out by local communities in overcoming related problems to meet their needs. According to Said in Masruddin [6], local wisdom is a view of life, knowledge and knowledge and various life efforts that are manifested in activities carried out by local communities in overcoming various problems in an effort to fulfill their life needs. According to Marfai [7], local wisdom is a form of values, perceptions, attitudes, behavior, and responses of a local community in interacting with the living system with nature and the environment in which it is located wisely. Local wisdom is a knowledge, collective understanding, and wisdom that influences overcoming alife problem or decision to solve it. According to Haba [8], local wisdom has the following significance and functions as: --- Method This research method is using a qualitative research paradigm, ethnography. According to emzir [9], ethnography is a method used by researchers to study a social group through observation and active participation of the researchers themselves. data collection techniques used in this research are literature review and participant observation, interviews and documentation. the research instrument uses the results of interviews, while the observation guide is based on elements from Babarit. This research data analysis uses semiotic analysis techniques to understand the symbols and messages that appear in social media content. Semiotics is concerned with the meaning of signs and symbols in language. semiotic elements include signs DOI 10.18502/kss.v8i12.13667 of symbolic relationships, paradigmatic relationships, syntagmatic relationships of language, speech, culture and significance in babaritic traditions such as babarit history, cultural actors , society, as well as the time and the place of activity, as well as the tools used such as gagawer, ancak, iketobor, tapas kalapa, and incense. traditional foods such as kupat salamet, kupat gondet, halukupat keupeul kupat, free range chiken , porridge beurem bodas porridge, congcot dawegan, cai coffee, and rurujakan. Advertising semiotics can be studied through a sign system in advertising, which includes symbols, both verbal and non-verbal. Verbal symbols are the language we know. While nonverbal symbols in the form of shapes and colors are presented in advertisements that do not specifically imitate the appearance or form of reality. Nonverbal messages can be classified in various ways. Jurgen Ruesch classifies nonverbal cues into three parts: 1. Sign language, for example a thumbs up it sign for good or agreed. 2. Action language, is body movements that are not used exclusively to give signals, such as walking. 3. Object language, is the performance of objects, clothes, and other public nonverbal symbols such as room size, flags, pictures , music and so on, whether intentionally or not [10]. --- Paradigmatic -Earth Alms --- Sintagmatic -Myth -incense The syntagmatic relationship is related to the past history of the formation of the Babarit tradition which is derived from the mythical stories of the past with incense in the Sundanese Babarit. While the paradigmatic relationship is related to thanksgiving, DOI 10.18502/kss.v8i12.13667 TSBEC the village's intention. Meanwhile the significance in the Babarit tradition is implemented into the lives of its people as a gathering place for the local community. --- Result and Discussion This cultural show uses the Youtube platform "Babaritan Kampung Kranggan Lembur 2021". The video has a duration of 7 minutes 8 seconds which contains footage of Babaritan activities using the native language of the Kranggan area and the following translation into Indonesian. The scene 1. An old man held the procession talking about prayer activities held by the community, as an expression of gratitude to the creator. Source: Youtube, An elder of the Kranggan community who explained the meaning of the Babaritan tradition the purpose is to saving the earth from the disaster which is held every year in the month of Sura every first Friday which is a mandate from his ancestors, Asyura mean the tenth. --- Conclusion The results of the analysis of this study are the babarit tradition through youtube shows which is one type of social media. Video with a duration of 0:8:00 minutes with the DOI 10.18502/kss.v8i12.13667 --- Source: Youtube Traditional foods such as kupat salamet, kupat gondet, kupat halu, kupat keupeul, endog hayam kampung, porridge beurem bodas porridge, congcot dawegan, cai coffee, and rurujakan. The purpose of Alms-Earth is asking the almighty to be given safety for the people of Kranggan village and safe government and prosperous agriculture and got guidance from Mother Earth, Father Langit, good things for the people of Kranggan, Bekasi. Source: youtube Prayer, giving's tradition including salvation, feast, After slaughtering the Caucasian's buffalo and they burying the head, and then continued by holding a prayer together with all of the community member. The pray was to asked forgiveness and apologize to Mother Earth, to Father Heaven and Sanghiang Dangiang who had taken care of Kranggan village. --- No Language Symbol Meaning --- sign language The elder man, sitting crosslegged facing the Incense furnace. Shown An act of pleading with sinceritty --- Incense The meaning of this element was of the community's assumption that frankincense is a tool to convey their goal and connects the upper world and the middle world as a place for human life. --- Eggs Has meaning, the religious value of the egg is a symbol of the pioneer of humans, that humans exist and live because of Allah Subhanahu wata'ala created them. --- Bodas Poriridge/white porridge Bodas porridge is a symbol of goodness, this symbol has the value that human life must always be on the path of goodness, obeying the rules determined by Allah SWT. in order to survive the hereafter --- Iketobor symbol of faith Used by old men , the word Aki means creed which mean faith. --- Action Language Pray and shake your head with your arms crossed. Chanting prayers and mantras by burning incense asking for the safety and blessings of life for the people. --- Burning Incense Burning incense / incense asking to the God for the safety and blessings of people's lives during the Babarit tradition or during alms of the earth. Maca du'a salamet, Asking for the protection and help of the Almighty to be given the safety of the world and the hereafter. --- Maca mantra dan méré hadiah Having a religious value in reciting mantras and giving gifts is human awareness of the power of its Creator, the hope of those who are still alive that the departed ancestors will get reward and forgiveness in order to be saved from the torment of the hereafter. --- 3. --- Object \language Beras, Garam dan Air Rice, salt and water. As a symbol the unity that The three ingredients which are stirred into one so that they cannot be separated from each other. Shows a unifying meaning in a shared environment of nation and state within the frame of Indonesia. The clothes worn at the "Cele" Babaritan Traditional clothing with black and white checkered motifs. Cele, memiliki makna hitam dan putih. Menunjukkan lambang putih memiliki makna kesucian, sedangkan hitam adalah lambang yang memiliki makna kedewasaan Kupat salamet, which has five corners. The five corners of the kupat salamet have the meaning of the five pillars of Islam, it's call the creed, prayer, zakat, saum, and the pilgrimage to Baitullah. Six corners of Kupat keupeul. Kupat Kepuel have six pillars meaning of the pillars of Faith. And the advice that living in the natural world must always be sakeupeulan and should not be selfish. --- Kupat Gondet The symbol of Opat has the meaning of the four cardinal directions, that is north Kidul is south Wetan is Eaast and Kulon is West Congcot dawegan Having the meaning of prosperity, humans must always be grateful to Allah SWT For all the favors. --- Kupat Halu Having meaning, in life must be "sauyunan", which means mutual respect, respect and remembering each other. the month of Suro or Ashura. Video contains live images with text inserted along with recorded sound. YouTube has the advantage of promoting a product because it is easy for viewers to access and repeat. In analyzing these impressions, the researcher arranged three stages of image fragments. First, the prologue describes the babaritic tradition in general with traditional orthodoxy. The second shows the elements of the process of implementing the Babarit tradition which includes tools, actors, and food provided for these activities. Third, explain the purpose of the activities of the Babaritan tradition.

This research aims to determine the semiotic's analysis of online media communication to improve tourism promotion of local wisdom in Bekasi Regency. The local wisdom of the community that was once carried out and preserved in decline is now beginning to shift and replaced by the influence of modern culture. This type of local wisdom is what still remains today, especially in the communities of the Betawi. Meanwhile, the people of Kranggan Village, are still maintaining strong and preserving cultural life and customs that are closely related to Sundanese tradition. They have a tradition that has been kept for generations. Based on the above description the study aims to obtain detailed and in-depth data from the Babarit tradition through Roland Barthes' semiotic analysis in local wisdom such as the values contained in the babarit tradition through ethnigraphic studies, analyzing the relationship of symbolic, paradigmatic, syntagmatic signs and language, speech and culture. Social media helps tourist attractions in interacting with their potential customers. Social media has a great impact on people's lives. Thus, it is very appropriate to promote tourism through content so that social media still has its function and purpose, has benefits in the life of every individual, it will help to form a good destination image, and increase the interest of tourists to visit. This research method has used a qualitative research paradigm, ethnography. Ethnography is a method used by researchers to study a social group through observation and active participation of the researchers themselves. Data collection techniques used in this research were literature review and participant observation, interviews, and documentation. The research instrument uses the results of interviews, while the observation guide is based on elements from Babarit.

There are approximately 11.3 million undocumented immigrants living in the United States , representing about 3.5% of the total U.S. population . About eight million undocumented immigrants are part of the U.S. work force, making up about 5.1% of the work force in the year 2010 . Although the number of undocumented immigrants in the U.S. has been stable over the past seven years, politicians and the media continue to portray the U.S. as being overrun and overwhelmed by undocumented immigrants who are criminals, take jobs away from "real" Americans, and are a drain on the U.S. economy . The combination of an increase in fear and distrust of immigrants after September 11, 2001, as well as the Great Recession, has led to immigrants being used as scapegoats and blamed for causing the economic problems in the U.S., as well as a loss of traditional American culture . As a result of this anti-immigrant rhetoric and fear of immigrants, numerous anti-immigration policies and enforcement strategies have been enacted. During President Obama's Administration, a greater emphasis was placed on border enforcement than removals of undocumented immigrants from the interior of the U.S. As a result, a record number of removals occurred under the Obama Administration, while the number of overall deportations decreased compared to previous administrations . The increase in immigration enforcement strategies at the federal level, as well as the implementation of restrictive immigration policies in several states, have negatively impacted immigrant communities in the U.S. . Americans perceive Latinos as often being subjected to discrimination. Previous studies have found that perceived and experienced discrimination are related to negative health outcomes including stress, anxiety, and depression . The current Trump administration's immigration policies may serve to exacerbate the negative impact immigration policies and enforcement strategies have on Latino immigrant communities. As a result, Latino immigrants who viewed immigration policies and enforcement strategies as discriminatory during the Obama Administration may continue to view Trump's policies as discriminatory as well. Immigrants come to the U.S. with great optimism in search of increased freedoms and economic opportunities in order to provide better lives for themselves and their families . Unfortunately, Latinos, especially undocumented Latinos, may experience discrimination once in the U.S. because of the negative social and political discourse surrounding Latino immigrants. Immigration policies and enforcement strategies, which many perceive to discriminate against Latinos, may also negatively impact the hope and optimism of Latino immigrants living in the U.S. . Although anti-immigrant sentiment exists throughout the country, for over 15 years, Arizona has been at the center of restrictive immigration policies and enforcement strategies that specifically target Latino immigrants. Arizona has a population of 6.9 million residents with over 2.1 million Latinos . Given the increased focus on immigrants and immigration enforcement by the Trump administration, as well as Arizona's long history of anti-immigrant policies, it is important to examine the impact of immigration policies on Latino immigrants. The purpose of this study is to contribute to the knowledge base and existing literature by examining how perceived discrimination in the context of the recent immigration policies and enforcement strategies impacts participants' lives and their confidence in a better future. --- Theoretical Framework This study utilizes the legal violence theoretical framework . Violence is often defined as action motivated by the intent to cause harm . However, violence can also have non-physical impacts such as loss of earnings, imprisonment, stigmatization, and exclusion, as well as negative psychological outcomes such as fear, anxiety, shame, and low self-esteem . Structural violence describes how social structures can cause harm and negative outcomes to certain populations, such as poverty and inequality . Legal violence builds upon the definitions of violence and structural violence to examine the impacts of laws and policies, which themselves are violent in their intention to cause legal harm with their immediate and long-term consequences. As Menjivar and Abrego argue, current federal, state, and local immigration policies, "…seek to punish the behaviors of undocumented immigrants but at the same time pushes them to spaces outside of the law" which makes undocumented immigrants accountable to the laws in the U.S., without legal protections or rights . Therefore, using the legal violence framework in this study enables the examination of the impact of restrictive immigration policies and enforcement strategies on Latino immigrants. --- Anti-Immigrant Policies The Support Our Law Enforcement and Safe Neighborhoods Act, introduced as Arizona Senate Bill 1070 , was signed into law on April 23, 2010 . It is considered one of the most punitive immigration policies enacted by any state in recent history . It effectively criminalized undocumented immigrants, making it a state crime to not carry proof of legal residence and requiring law enforcement to detain anyone they "reasonably suspect" to be undocumented and ask for proof of legal immigrant status. It also allows any resident of the state to sue authorities if they fail to enforce the law . It further contained provisions penalizing state trespassing and human smuggling, as well as the hiring, harboring or transporting of undocumented immigrants . SB1070 created a great deal national and international controversy. Nevertheless, SB1070 had an impact on immigration legislation all over the country, as many other states adopted similar strategies to address the issue of immigration within their jurisdictions . Since 2010, policies modeled after SB1070 were considered by the legislatures of about a dozen states, but only 5 states enacted them into laws: Alabama's HB 56, Georgia's HB 87, Indiana's SB 590, South Carolina's SB 20 and Utah's HB 497 . Since their passage, each of these laws has been contested in court and several of their provisions have been partially or totally blocked . Although those restrictive state immigration policies were blocked by the courts, President Trump was elected in large part for his anti-immigration rhetoric. Once elected, President Trump signed an executive order to begin construction of a border wall between the U.S. and Mexico, punish sanctuary cities, and speed up the deportation process of undocumented immigrants, all of which may contribute to increased fear and anxiety in Latino immigrant communities. President Trump's focus on immigration enforcement and deportations has led to community raids, immigration detentions, and deportations. In February 2017, U.S. immigration officials raided homes across six states and arrested hundreds of immigrants, many with no criminal records . The first few months of the Trump administration have led to an almost 33% increase in immigration arrests . --- Anti-Immigrant Rhetoric Anti-immigrant rhetoric and policies to regulate immigration have been a part of American politics and public discourse since the first waves of immigrants arrived in the 19th century . American attitudes towards immigrants, both authorized and undocumented, have been inconsistent over time, sometimes welcoming the contribution of immigrants to society, and at other times fearing that immigrant communities could have a negative impact on the country . Negative attitudes towards immigrants often revolved around fears that these groups would not assimilate to American society, which would erode the traditional cultural heritage of the country, or cause divisiveness and social conflict . Historically, anti-immigrant rhetoric often took overtly racist undertones that emphasized a fear that newcomers might change American culture for the worse . Political groups that lobby against illegal immigration justify their position on the perceived negative consequences that undocumented immigration brings to this country. Although empirical research has shown these positions to be largely incorrect, one of their most common concerns is that undocumented immigrants hurt the economy by taking away jobs from American citizens or by accepting lower wages, thereby increasing unemployment levels or decreasing household incomes, particularly among Americans who work in the low wage sectors of the economy . Moreover, anti-immigrant politicians and activists incorrectly claim that the cost of providing public services to undocumented immigrant families is a significant drain on government budgets and diminishes the quality of the services provided to legal residents . Other anti-immigrant politicians and activists claim that undocumented immigration is inherently wrong because it is illegal and constitutes a crime . Some go even further, arguing that undocumented immigration is tied with other forms of illegal activity and organized crime, such as drug and sex trafficking, which eventually results in higher crime rates on American soil . Hence, they view the increase of undocumented immigrants as a threat to public safety. Indeed, in its most extreme forms, anti-immigrant rhetoric "demonizes and dehumanizes" immigrants, promoting public animosity against them . --- Consequences of Anti-Immigrant Policies and Rhetoric --- How Policies and Rhetoric Impact Perceived Discrimination Undocumented immigrants are already marginalized from mainstream society due to their immigration status . They live in social environments where they are often stigmatized, portrayed as deviant, and used as scapegoats to be blamed for numerous social problems . They may be called derogatory names , sexually harassed or physically assaulted . Discrimination may also manifest itself in unfair or abusive treatment, as employers and others may exploit the immigrants' legal status to violate their civil, labor or human rights . In addition, awareness of anti-immigrant policies such as SB1070 has been found to be positively related to perceived discrimination from law enforcement authorities, and this relationship was not moderated by immigrant generation . Anti-immigrant rhetoric inevitably affects the socio-political climate in the communities where undocumented families reside , exacerbating the stigmatization and discrimination that affect the lives of undocumented immigrants . Even when anti-immigrant laws are not enforced or when they are redundant to existing laws, "the symbolism in the passage of these laws is potent enough to influence behaviors, perceptions, and a sense of self among those affected " . Moreover, those affected by anti-immigrant climates are not limited to undocumented immigrants themselves. Family members and friends, both documented and undocumented, often experience the fear of having a loved one deported . --- Impact of Perceived Discrimination on Latinos --- Adult Physical and Mental Health The relationship between discrimination and health is well documented in the research literature. In a meta-analysis of studies that assessed the relationship between perceived discrimination and health outcomes, discrimination was associated with negative physical and mental health outcomes among diverse ethnic groups . In epidemiological studies with nationally representative samples of Latino adults, higher levels of perceived discrimination have been associated with deleterious mental health consequences, including higher incidence of depressive symptoms ; substance abuse ; PTSD ; and suicidal ideation and suicide attempts . In a national study of adults, greater perceptions of discrimination were related to 12-month and lifetime anxiety and depressive disorders, whereas lower perceptions of discrimination were related to lower risk of lifetime substance-related disorders . Among Latino immigrant parents, discrimination was associated with a higher number of depressive symptoms, even after adjusting for social support and immigration-related stressors . Moreover, discrimination may be one of the mechanisms that explains the increased relationship between time in the U.S. and risk of psychiatric disorders among Latino immigrants . Among Latina immigrants, higher levels of discrimination were related to lower self-esteem , greater acculturation stress , and lower use of healthcare services . Discrimination has also been related to negative physical health outcomes, such as a higher incidence of chronic conditions ; pregnancy distress; lower infant birth weight ; lower self-rated physical health , and worse health-related quality of life . Moreover, discrimination-related stress experienced by Latino immigrants has been found to be associated with disease risk factors, including elevated systolic blood pressure, reduced immune function , obesity, and higher fasting glucose levels . --- Children, Youth and Families In a systematic review of the literature of the impact of discrimination on children and youth, perceived racism was associated with negative mental health outcomes in most of the studies reviewed . Among Latino youth, perceived discrimination is associated with lower self-esteem , as well as a higher incidence of negative mental health outcomes, including substance use , depressive symptoms , and problem behaviors . Discrimination also increased Latino adolescents' risk of suffering PTSD, even after adjusting for exposure to traumatic events . The current social and political climate regarding Latino immigrants, as well as the new wave of immigration policies and enforcement strategies, both nationally and in Arizona, warrant further examination of the impact of perceived discrimination among Latinos in the context of the current anti-immigrant climate. --- Methods --- Sample After gaining approval from the institutional review board of the authors' university, data for this study were collected in the summer and fall of 2014 from a sample of 213 adult Latino immigrant respondents living in Arizona . Participants were recruited through social service agencies, churches, and faith-based organizations throughout Maricopa County. Participants completed questionnaires in English or Spanish, depending on their language preference. There were 72 males, and 141 females. The mean age was 38; over 58% of the participants had less than a high school diploma/GED; and 53.1% reported their current financial situation as "average." --- Measures Independent variables. The participants self-reported their gender, age, socioeconomic status, highest level of education, and years living in the U.S.. Perceived discrimination was measured using the Perceived Discrimination in the U.S. scale, a 6-item scale that has been used in previous studies with Latino populations and has demonstrated good psychometric properties . The PDIUS uses Likert responses . The scale is composed of questions such as "Mexican immigrants are treated badly by people in the U.S."; "Laws in the U.S. discriminate against Mexican immigrants"; and "Businesses in the U.S. discriminate against Mexican immigrants." Scores for the scale could range from 6 to 24, with higher scores indicating higher levels of perceived discrimination in the U.S. The Cronbach's alpha for the PDIUS in the current study was .81, with a mean score of 17.10 . A principal components analysis was conducted to explore content validity. The analysis revealed that all 6 items emerged on one component with an eigenvalue of 1.0 or greater, which accounted for 57.04% of the standardized variance. Component loadings ranged from .70 to .87, and the Kaiser-Meyer-Olkin Measure of Sampling Adequacy was .81. Rotation was not possible given that only one component was identified. Dependent variables. Participants were asked to respond to four statements regarding the impact of immigration policies on their lives. The statements they were asked to respond to were, "As a result of the current immigration policies: 1) I avoid immigration officials; 2) My family has suffered; 3) My friends have suffered." The response options were 1 = Strongly Disagree to 5 = Strongly Agree. In addition, the participants were asked to respond to four questions regarding the impact of immigration policies on their confidence in a better future. Participants were asked to respond to the following questions: "As a result of the current immigration policies how much confidence do you have in a 1) better future for yourself?, 2) better future for your family?, 3) better future for you children?, and 4) better future for the children of today?" The response options were 1 = Very little confidence to 4 = A great deal of confidence. --- Analysis This study analyzed how recent immigration policies impact participants' perceptions of discrimination, as well as the impact on their lives and their confidence in a better future. Specifically, seven sets of ordinary least squares linear regression models were run to examine the relationship between perceived discrimination in the context of recent immigration policies and: participants avoiding immigration officials; suffering of the family; suffering of friends; confidence in a better future for themselves; confidence their families will have a better future; confidence their children will have a better future; and confidence in a better future for the children of today. All models control for gender, age, socioeconomic status , highest level of education, and years in the U.S. --- Results As seen in Table 2, model 1 [χ 2 = 31.199, p < .001], the participants were asked to respond to the following statement: "As a result of the current immigration policies I avoid immigration officials." The response options were 1 = Strongly Disagree to 5 = Strongly Agree. The results indicated a significant and negative relationship between higher socioeconomic status levels and reporting avoiding immigration officials = -.066, -.001, p < .05). In addition, participants with greater perceived discrimination reported avoiding immigration officials = .128, .197, p < .001). In model 2 [χ 2 = 22.913, p < .001], the participants were asked to respond to the following statement "As a result of the current immigration policies my family has suffered." The results indicated a significant and positive relationship between greater perceived discrimination and participants reporting that their families have suffered = .251, .556, p < .001). In model 3 [χ 2 = 22.862, p < .001], the participants were asked to respond to the following statement: "As a result of the current immigration policies my friends have suffered." The results indicated a significant and positive relationship between a greater perceived discrimination and participants reporting that their friends have suffered = .252, .556, p < .001). As seen in Table 3, model 1 [χ 2 = 25.741 p < .001], the participants were asked to respond to the following question: "As a result of the current immigration policies, how much confidence do you have in a better future for yourself?" The response options were 1 = Very little confidence to 4 = A great deal of confidence. The results indicated a significant and positive relationship between being female = .791, 1.254, p < .001), having a higher SES = .136, .994, p < .01), and a greater number of years in the U.S. = .636, 1.097, p < .001), with reporting greater confidence in a better future. In addition, participants with greater perceived discrimination reported having significantly less confidence in a better future for themselves = -.962, -.374, p < .001). --- As a result of recent immigration policies… I In model 2 [χ 2 = 38.876, p < .001], the participants were asked to respond to the following question: "As a result of the current immigration policies, how much confidence do you have that your family will have a better future?" The results indicated a significant and positive relationship between being female = 3.697, 9.734, p < .001), and having a greater number of years in the U.S. = .356, .759, p < .001). In addition, the results indicated that participants with greater perceived discrimination were significantly less likely to express confidence that their families will have better futures = -1.158, -.644, p < .001). In model 3 [χ 2 = 10.813, p > .001], the participants were asked to respond to the following statement: "As a result of the current immigration policies, how much confidence do you have that your children will have a better future?" The results indicated that female participants = 3.247, 11.724, p < .001) and participants who had a greater number of years in the U.S. = .364, .930, p < .01) were significantly more likely to express confidence that their children will have better futures. Participants who reported greater perceived discrimination were significantly less likely to express confidence that their children will have better futures = -1.073, .351, p < .001). In model 4 [χ 2 = 21.057, p > .001], the participants were asked to respond to the following statement: "As a result of the current immigration policies, how much confidence do you have that the children of today will have a better future?" The results indicated that females = 1.331, 8.383, p < .01), older participants, = .100, .490, p < .01), participants with higher levels of education, = .526, 2.496, p < .01), and participants with more years living in the U.S. = .134, .605, p < .01) were significantly more likely to express confidence that the children of today will have a better future. Participants with greater perceived discrimination were significantly less likely to express confidence that the children of today will have better futures = -1.629, -1.028, p < .001). Standard errors in parenthesis Gender Table 3 Discussion The results of this study contribute to the understanding of the relationship between recent immigration policies and perceptions of discrimination among Latino immigrants. Although this study had a relatively small sample size, the sample is of a hard-to-reach population; since many of the harsh immigration policies and enforcement strategies originate in Arizona, examining the impact of increased immigration enforcement is especially important. The results of this study align with the legal violence framework because this study examined the impacts of immigration laws and policies, and found that these laws are violent in that they intentionally cause legal harm with their immediate and long-term consequences. This study found that reporting higher levels of perceived discrimination was significantly related with avoidance of immigration officials as well as with higher levels of perceived suffering of family members and friends. In addition, the results indicated a significant relationship between participants with higher levels of perceived discrimination and lower confidence in a better future for the individual participants, for their families, for their children, and for the children of the future. These findings support previous research findings on the harmful effects of discrimination on Latino communities, including: a weakened sense of identity; increased levels of stress; worsened physical and mental health; socioeconomic difficulties; isolation from police; and withdrawal from communities, as a result of recent immigration policies . Consistent with prior studies, Latino immigrants with greater perceived discrimination reported avoiding immigration officials, which may indicate that there is a lack of trust between immigration and law enforcement agencies and Latino immigrant communities . The high-profile case of Guadalupe Garcia de Rayos, who checked in with immigration officials as she had for over 20 years, but was detained and ultimately deported, may cause Latino immigrants to further avoid immigration officials. Such avoidance and distrust has not only led to a fear and unwillingness to report crimes and share information with policing agencies, but there is also the potential negative impact on law enforcement officers' ability to properly perform their duties if effective police-community relations cannot be established . Furthermore, a sense of safety is diminished if a victim of crime, regardless of immigration status, is unwilling to report the crime for fear that they or their loved ones will be targeted as a result of their immigration status. For example, women who are victims of domestic violence have dropped their cases or failed to appear in court for fear of detention and deportation . Instead of the desired effect of feeling safer with increased law enforcement involvement in communities, individuals feel less safe . This study also found that reporting greater perceived discrimination was significantly related to having lower confidence in a better future for the individual, for their family, for their children, and for the children of today. These findings are important to consider, because immigrants come to the U.S. with great optimism in search of increased freedoms and economic opportunities in order to provide better lives for themselves and their families , and losing hope and optimism for the future can have negative implications. Lower levels of hope and optimism have been found to have negative health implications . These negative health outcomes are exacerbated when a loss of hope and optimism are combined with higher levels of perceived discrimination and a fear of deportation due to immigration status . The current anti-immigration policies and increased immigration enforcement strategies, including raids, detentions, and deportations, may create further mental health issues for Latinos living in the United States. Considering the heterogeneity existing among Latino immigrants, this study included several control variables that have received limited attention in the literature examining perceptions of discrimination among Latino immigrants . In one model, having a higher socioeconomic status was related to a lesser likelihood of avoiding immigration officials, and in another model, being female was related to greater belief in a better future. In regard to the former, higher socioeconomic status and avoiding immigration officials, despite the prevailing social and political rhetoric that Latino immigrants and their children do not acculturate to the U.S., the results of this study support the notion that a growing proportion of Latino immigrants are achieving traditional American indicators of middle class status, such as incomes above the median, homeownership and employment in higher-paying occupations, which then leads to more positive outlooks on the future. In this sense, with increased social, political, economic, legal, and cultural capital, Latino immigrants of higher socioeconomic status may be less fearful of avoiding immigration officials. Being female and having more positive outlooks for a better future may indicate that the gender roles and power structures of Latino immigrants may shift once in the U.S. The effects of this empowerment can create a ripple effect, influencing greater personal autonomy and independence that enhances their spatial mobility and access to valuable social and economic resources that can increase their confidence in theirs and their children's immediate and future health and wellbeing . These results confirm the complexities that other studies have noted when investigating the relationship between discrimination and health while accounting for the mechanisms of socioeconomic status and gender . Given these findings, as well as the heterogeneity that exists among Latino immigrants, future research should examine the various characteristics and differences that exist between Latino immigrants and their perceptions of recent immigration policies, discrimination, and confidence in a better future. --- Limitations In this study, there are several notable limitations that need to be acknowledged. Participants were only recruited from the state of Arizona; therefore, the results cannot be generalized to the larger Latino immigrant population beyond this sample. Thus, findings should be interpreted in the context of this study. The findings from this study were based on self-reported data, which restricts the ability to establish causal relationships. Self-reported data also only included reports on perceptions of discrimination and confidence for a better future, but not actual behaviors. The present study included asking questions that were not specific in differentiating aspects of a better future. Further studies examining the relationship between perceived discrimination in the context of recent immigration policies should gather more information on what is meant by a better future in addition to strengthening design methods that can go beyond perceptions to measures that capture behaviors. --- Implications for Policy and Practice The intersectionality between individual wellbeing and community engagement must be taken into account when developing effective interventions to serve those affected by recent immigration laws. Findings from this study, along with past literature, indicate the need for social workers to intervene with and on behalf of Latino immigrants and communities in the U.S. . Given the established literature on the effects of discrimination on individuals, families, groups, and communities, it is crucial that social workers and policy makers stand against policies that are discriminatory. An inclusive environment can start with adopting cultural and institutional norms, policies and practices that are welcoming and protect immigrants. Evaluating and understanding the impact of current immigration policies is pertinent for social workers working with Latino immigrants on an individual level and also at a systemic level. The racial and discriminatory undertones of immigration policies perpetuate institutional systems of oppression and work against the core values of social work. Thus, social work professionals should continue to be vehemently engaged with communities on the ground level, as well as be involved with debates at the policy level. Social workers should collaborate with advocacy groups, think tanks, healthcare professionals, law enforcement, politicians, and other stakeholders to create immigration policy solutions that are grounded in social justice and human rights values. Instead of promoting legislation such as SB1070, more emphasis should be placed on policies like the DREAM Act. While working toward immigration policy solutions is valid, social workers should also educate members of the community on the harmful impacts of existing immigration policies and/or the development and implementation of economically viable and politically feasible immigration policies. Social workers should partner with immigration attorneys or other organizations in assisting individuals in understanding their rights, especially in encounters with law enforcement and the criminal justice system. Social workers can also play an important role in training health and human service personnel and law enforcement personnel in working with Latino immigrants to improve community-police relations. Doing so will not only empower individuals to seek help if they become victims of crime, but also improve the safety in communities by protecting the ability to report criminal activity. The aim of this study was to contribute to the existing literature by analyzing the impact recent immigration policies have on perception of discrimination and confidence in a better future among a sample of adult Latino immigrants in Arizona. We hope the findings from this study can serve as a foundation for future studies as well as a call to action for social workers, policymakers, health and human service personnel, and law enforcement personnel to stand against discriminatory immigration policies.

The purpose of this paper was to examine the impact of perceived discrimination among Latino immigrants in the context of recent immigration policies and immigration enforcement strategies. Data for this study were drawn from a pilot study (n=213) of adult Latino immigrants living in Arizona during the summer of 2014. The results of multivariate OLS linear regressions indicated greater perceived discrimination was significantly related to reporting: (1) avoidance of immigration officials; (2) family has suffered; and (3) friends have suffered. In addition, greater perceived discrimination was significantly related to lower confidence in a better future for the individual, their families, their children, and the children of today. Implications for social work practice, advocacy, and research are discussed.

Introduction 1 At 9 p.m., a day of summer 2012, like any other day between 2009 and 2013, tourists mostly Han middle-class vacationers from urban areas, gathered in front of the large door of the Yang house in Xiaoluoshui 小落水 Village in Yunnan Province, People's Republic of China 1 . Every night during this period, villagers held "bonfire festivities" , which became very prestigious thanks to an award for dance performances at the "circling-the-mountain" festival . Despite the disadvantageous but negotiated rates, the villagers, who belong to the Na纳 ethnicity, have started to work with travel agencies in Lijiang run by people from other minority nationalities of China to welcome more tourists and to benefit from some economic incomes. Before the festivities, most of the villagers welcomed them in their house to enjoy ethnic labelled meals . For barely a hundred RMB per group , these paying guests could eat a snack, followed by a hearty meal, and wear traditional clothing while imitating Na people way of life and posing for some photos. The locals also tried to sell some scarves, advertised as self-woven, for extra cash, which were in fact made in an industrial way and bought wholesale, as I was told. The atmosphere seemed more "authentic" as the Na publicly acquiesced to the incredible stories told by the guides about their local sexual customs or the absence of fathers, which, in fact, was often the opposite of the life they had. Since the beginning of the 1990s, Lugu Lake , located astride Yunnan and Sichuan Provinces, has gradually become a regional tourist attraction. Most of ethnic tourism 2 is concentrated in this area due to water and mountain landscape corresponding to the Chinese pictorial tradition and the presence of the Na. Also called Mosuo 摩梭 in Mandarin, they are known to be an exemplary case of matrilineal and matrilocal societies 3 . Numbering about 40 000 the Na people are famous for their institutionalised visiting system called sessee in Na language and zouhun走婚 in Mandarin. Men visit the women at night, yet each partner lives in his or her mother's house. Routinely depicted as "primitive" and "backwards" , the Na are thought to be a "living fossil society" , a judgment fostering the ideologically evolutionist discourse at the core of the ethnic distinction within China . This Chinese ethnic distinction separates the population between the Han majority and the minority nationalities . According to a strange equation, the former, considered as civilised and educated, would be the representatives of the Chinese nation and would include the latter, considered as backward and lacking civilisation . This "civilising project" that aimed at governing minorities has gradually become a consumption pattern pursuing the same objective. New romantic media representations on minority nationalities and the state's narrative of a supposedly common past, led millions of Chinese, most often from urban areas, to travel domestically each year . During these journeys to minority nationalities territories often considered as "ethnic cultural heritage" sites, or even minority theme parks, these Chinese middle-class vacationers, whatever their own ethnic origins, can experience the boundaries between "civilisation" and "primitiveness" . Since the mid-2000s, minority nationalities experiencing tourism started to perform "traditional" dances during "bonfire festivities", a standardised cultural form dating back to the 1990s . Like for many others among China's, dances have become an integral part of cultural identity construction . With the signing of the 2003 UNESCO Convention, these kinds of cultural practices have been valorised as intangible cultural heritage . In the Lugu Lake area, Na dances became one of the most famous Na intangible cultural heritages when Sichuan Province focused on labelling, inventorying, and listing cultural practices to catch up with the Yunnan part of the lake in terms of tourism development. Heritage can be considered at first as a broad institutional category of goods, practices or monuments considered as cultural. ICH is its latest trend. This is also a puzzling notion that expresses a certain cultural authority through an increasingly homogeneous, but implicit and diffuse language of what culture and tradition are. However, heritage is a set of "complex processes of selection and requalification, bringing into play more or less shared values" . Heritage commodification is also prone to bring new values to cultural practices . In the first part, I attempt to contextualise the meaning ICH takes in the Chinese heritage context characterised by tourist situations. Yet, local worlds from which cultural expressions originate often have totally different conceptual universes conveying quite dissimilar social values with heritage institutions. For example, Na dances have long played a significant role in the social reproduction of communities. They were usually performed at particular events in community life, following rituals such as year-end celebrations, the completion of house construction, and gutch ceremonies -used to celebrate cohabitation between partners and, today, marriage. This was still the case until 2014 in the non-touristy village of Lijiazui 李家嘴, located in the hinterland of the Yongning 永宁 Plain in Sichuan Province. This paper aims at comparing the festivities between two Na villages, Lijiazui and Xiaoluoshui , to grasp sociocultural changes that are gradually reshaping Na social organisation toward a market-oriented national economy . As a component of Na people's social life conveying values and norms, I argue that dances have been seriously challenged by tourism growth and heritagisation processes. Drawing on fieldwork findings that were followed by ongoing online exchanges with key interlocutors and online research on ICH processes and narratives, the article seeks to grasp both the Na people's agency and new subjectivity that have been remodelled within this new context. I ask how locals negotiate, contest, and accommodate China's ICH policies that are part of the nation-building. Throughout the article, I examine these issues by investigating the meaning that the Na people have of the core notions of ICH like culture, tradition, identity, and transmission. As part of my doctoral research investigating social change and economic transition, the collected ethnographic data comes from participant observation of daily life, festivities, and tourism activities. While I lived in two Na houses, one in each village, between 2012 and 2014, I actively participated in their daily life in many ways, such as serving tourists, cleaning, working in the fields, etc. Caught in village social relations, I was able to investigate what Walsh , following Goffman's concept , calls the "backstage", where people hold private speeches that contrast with public ones, especially those held on the tourist scene ). Such "backstage" information is particularly explicit if we observe the way the Na call themselves. They have been officially identified as Mosuo in Yunnan Province in order to differentiate themselves from the Naxi 纳西 minority nationality in the late 1980s . In Sichuan, the Na were categorised as Mongols , but an increasing number of Na also identify themselves as Mosuo because of the increasing popularity of this ethnonym in tourism. In this article, the core ethnographic material draws from daily conversations, first conducted in Mandarin, collected during multiple fieldwork since 2007. The extended period of time over which the research took place provided an emotional closeness and a high degree of trust that fostered informal feedback on tourism, with a particular focus on the festivities and the villagers' hopes and fears. This positioning allowed me to further investigate these issues in their own language, as learning the Na language was necessary to access what James Scott calls "the hidden transcripts" . The knowledge my interlocutors had of the two villages under scrutiny is central to the data collected. Their comments on my account of my activities during my stay in each village helped to capture the similar sociocultural contexts and an emic perspective on the changes occasioned by tourism. Their comparative comments on the festivities also provided insight into "the qualities and logic that guide them" and the judgments they rely on "to act in the world" ). Following Didier Fassin's revisited concept of moral economy, I thus seek to capture the grammar of emotions, values, and norms that underlie the dances and give them different efficiencies and logics in each village. I thus also use the moral economy in the same structural way as Edward P. Thompson ) and James Scott . Both authors link moral economy to economic issues while looking beyond them to lived experience. Extending this definition, Scott links moral economy to the ethics of subsistence, which, according to Karl Polanyi's idea, is embedded in broader relationships. While Scott sees it as an opportunity to explore rebellion or resistance, I also understand the notion of moral economy for its ability to highlight explainable regularities and as a part of the social fabric that can reveal antagonistic power relations. In the first part of this article, I will shed light on what is considered as heritage by the Chinese government among the Na and on how this process is closely related to tourism. The following section will cover the people's trajectories and livelihood opportunities in the two Na villages under scrutiny. I will then describe the Na dances in the non-tourist village, one among many in the hinterland, while accounting for their importance in the social organisation and Na's understanding of what tradition is. Next, I will address dances in the context of tourism to show how Na people took hold of the cultural encounter with Chinese . Finally, I will turn to the cultural heritage valorisation, more specifically to the ICH narrative to highlight the existing discrepancies with the Na's understanding of what culture and tradition are. --- Heritage and tourism strategy in China Since the four modernisation reforms 5 , China has steadily developed domestic tourism, leading millions of Chinese people to explore its historical, national, and natural sites every year. As a means for rapid economic growth and regional development , tourism became a perfect strategy to pursue the civilisation and modernisation project of the margins. The minorities summoned for decades to become more like the Han "civilized majority" rapidly got involved in tourism by marketing their ethnic potential . Boiling down to "exotic" rituals and survivals, cultural practices, once considered backward, undesirable and condemned as superstitious archaisms during the Cultural Revolution , have become valuable cultural resources to honour diversity through folkloristic representations . New forms of cultural encounters have been paradoxically triggered out from the celebration of cultural and ethnic differences . Chinese tourists have become eager for "exotic difference", while locals perform their ethnic identities through various cultural practices. As Zhu Yujie demonstrated in the Lijiang case, these two elements often intersect with broader socio-economic forces and create a local tourist culture fuelled by a "romantic consumption" of tourist places . Zhu states that romantic consumption is not only about romantic feelings and love, but "refers to individual desire, pleasure seeking and the motivation of consumption", especially through the touristic experience . Lugu Lake, located a few hundred kilometres north of Lijiang's regional tourist epicentre, opened to tourism in the 1990s. Its "water and mountain landscapes", a natural area protected by Yunnan Province in 1989, combined with the presence of the Na, quickly transformed it into an ideal tourist destination . Various administrative authorities in Yunnan beforehand engaged in tourism infrastructure construction. Ninglang 宁蒗 County authorities, mainly from the Yi minority nationality 6 , drew on public poverty alleviation funds to build the first guesthouse in Luoshui 落水 Village, and then worked with private investors to develop tourism in exchange for 30 percent of the profits . They have built a ticket gate, which clearly gave the impression that Lugu Lake had become "a closed and controlled consumption area" . By the 1990s, annually, sixty to eighty-six thousand mainly Han Chinese tourists visited the area . Under the aegis of the Chinese National Tourism Administration, in charge of tourism until 2018, Lugu Lake rated with a four A as a remarkable natural and cultural heritage site, a Chinese National Scenic Landscape 7 . In 2010, the Lijiang Management Committee estimated that more than one million people visited Lugu Lake every year, making tourism its primary income. The steady flow of tour guides at well-identified tourist spots even suggests, in Oakes' terse formulation, that Lugu Lake has become a "village as a theme park" 8 . This almost exponential growth of tourism in the Yunnanese part of Lugu Lake was due to the enhancement of Mosuo cultural practices and cultural identity following the new ICH fever. By ratifying the 2003 UNESCO's Convention in 2004, China made ICH a flagship concept 9 . Indeed, the country's effort to manage ICH these last few years has led to an upheaval in its legal apparatus, administrative structures, and regulations . A special division of ICH within the Ministry of Culture was created. The production of juridical texts that followed led to the elaboration of numerous ICH lists at all administrative levels: county, municipality, provincial, national 10 and UNESCO World Heritage level. In 2006, the centre dedicated to the safeguarding of China's ICH in Beijing proposed the first national list of 1028 Chinese ICH items. This massive identification of ICH elements and classifications generated a frenzy of media attention and widespread public interest. Regardless of the type of heritage, in 2006, a national plan systematically associated tourism with heritage . As a result, a Heritage Day and a Heritage Week were enacted. In 2018, the creation of a Chinese full-fledged Heritage and tourism ministry 11 confirmed the claim that ICH is used as a tourism strategy . ICH has indeed become public goods or commodities that can be commercially exploited through tourism . The Yunnan government first engaged with these issues at Lugu Lake to develop tourism. Na dances were valorised in the mid-2000s as Na cultural heritage with the matrilineal system, and the daba 达巴 religious practices 12 . In 2002, the Ninglang Yi Autonomous County even declared "making necessary preparations for the application of world heritage status to UNESCO", but has not yet succeeded . In 2006, Walabi Village labelled as a "centre of weaving tradition" 13 and Wenquan 温泉 Village designated as a "remarkable" hot springs site, became protected zones of traditional culture 14 . State-led initiatives for surveying ethnic cultural practices however led to another strategy in Sichuan Province. The Yanyuan 盐源 County Cultural Centre carried out surveys in the mid-2000s which led to the identification of many Mosuo cultural expressions or practices 15 . All of them have been classified on the ICH provincial list, but the dances called jiacuo 甲搓 in the naming procedure were both ranked on the Sichuan provincial list in 2007 and national ICH list in 2008, in the category of traditional dances 16 . Scholars have pointed out the direct chain of causality between China's long tradition of recording folk customs and heritagisation processes surveys . According to the well-documented long-standing state interference in minorities' cultural affairs , it is not surprising that heritage is viewed as a new cultural policy of the same order as governing minority nationalities ). Heritage is indeed often seen as China's international cultural "soft power" , and generally goes hand in hand with the ideology of the "harmonious society" promulgated by Hu Jintao . It enables the spread of a nationalist, modernising and socialist discourse linking ethnic harmony with Chinese nation-building goals . UNESCO's conceptual devices often lead to unique heritage regimes at the national level due to selective or complementary applications . Through heritage narratives, China aims to enhance cultural diversity by highlighting minority heritage and traditional culture to provide new narratives about the past that are suitable for the nation-building process . Culture and tradition , two key words in UNESCO's heritage policies, are, along with safeguarding, the best narrative tools. They became highly politicised and strategic in justifying cultural policies in China. In the Na case, the ICH narratives present their "traditional culture" as ICH according to the criteria of the ICH Law of 2011 . Dances are thus presented as "promoting national unity" and "making a positive contribution to the construction of a harmonious society" 17 . Nonetheless, using the term "traditional culture", one may wonder what exactly is at stake. "Culture" and "tradition" are actually "problem words" used nominally and "very poorly defined" . Moreover, they are inherent to the questions of transmission and thus query what Hobsbawm and Rangers called the invention of tradition . The inhabitants of the destination's villages are the most concerned by these tourist and heritage situations. The presentation of the singular kinship system of the Na and the social organisation of the two villages studied will highlight the very social fabric that underlies the festivities and dances. --- Two villages under scrutiny 19 The Na people usually reckon descents along the mother's line and live in the same house . However, multiple house configurations can be observed. Usually, three generations live together, wherein sometimes nearly twenty individuals can live in the same house. The house can be divided if it becomes too crowded . I argued elsewhere that Na houses are more than a basic social unit of social organisation, they are also a kinship group ). Hence, people from different houses might belong to the same matrilineage. Individuals are identified by the name of their house, which may be the name of the matrilineage or another name referring to geographic location. Siblings most often live together with the women's offspring. Property is transmitted collectively from one generation to the next. Daily organisation and extraordinary events are often managed by women, while men are responsible for public relations. If genitors do not belong to the same lineage they can invest time, money, and emotions on their offspring . Fathers can also live with their children, as conjugal ties are increasing. While marriage has become more common since the period of collectivisation, more Na people are getting married in tourism impacted areas. However, the institutionalised visiting system , whereby men visit women at night and live in their matrilocal houses, remains the main pattern of sexual relations. Depending on their gender equilibria or the people living together, a house can be neolocal, matrilocal, natalocal . 20 The Na people are quite different from the simplified narratives about them. Indeed, succinct tourist and heritage accounts often present them as a remnant of the past, and even as a matriarchal society. This overview of their sociological characteristics is also breaking from the popular misconception that they are a society without fathers or husbands . These narratives have so well infused popular representations that in the eyes of Han tourists, Na cultural identity is perceived as stable and almost unchanging, gliding through history sheltered from any influence, cultural contact, and social change. However, the Lugu Lake area is inhabited by many other ethnic groups. Migration patterns and ethnic contingency are such that it is doubtful that the Na have not been influenced and affected by their sociocultural environment. Even in the tourist village of Xiaoluoshui or in Lijiazui, everyday life is more complex. At that time, the few hostels were run by outside investors and the locals had to rely on displaying their culture and hosting dinners to benefit from tourism. To attract tourists, the villagers had to rely most of the time on their connections with other villages judged "more traditional" than Lige or Luoshui. If enough visitors come to eat or enjoy the few guesthouse facilities, villagers would hold a party and perform Na dances on the elementary school basketball court. Two years later, in 2009, the number of tourists had increased, due to the availability of new tourist facilities such as guesthouses, still owned by outside entrepreneurs. Some Na houses developed strong networks with Tibetan, Pumi, Naxi and sometimes Na guides from Lijiang and started a dinner hosting business while others started building hotels for their business. These guides brought more tourists from Lijiang to the houses until a contract was signed between Lijiang travel agencies and the village houses. The arrangement ran from 2009 to 2013, until the travel agencies found another, cheaper agreement in another village. 22 Lijiazui is a village of the Sichuan Province located in the hinterland of Lugu Lake, a few miles from Yongning Township in northern Yunnan Province. In this village surrounded by mountains, the inhabitants still live from a subsistence agriculture 18 . At an altitude of more than 2700 metres, they cultivate buckwheat or barley, potatoes, corn, and vegetables. However, in their houses, where sometimes more than twenty people live, some are sent to the city or to tourist areas to earn additional, albeit From social bonds to cultural identity. Changing meanings of Na dances in tou... Études mongoles et sibériennes, centrasiatiques et tibétaines, 54 | 2023 meagre, income. Young people often told me that life in the village is quite harsh. Between my various visits in 2011 and 2014, the roads that lead to the village were poorly maintained, if at all. Electricity and water facilities were non-existent. However, social organisation was still driven at that time by reciprocity patterns, such as mutual aid between people of the same house, lineage, or even between neighbours and sexual partners for house building, agricultural work, or other purposes, while symbolic exchange was driving most ceremonies and rituals ). Na people indeed have similar values to what Scott labels as peasants' moral economy, in which "patterns of reciprocity, forced generosity, communal land, and work-sharing helped to even out the inevitable troughs in a family's resources which might otherwise have thrown them" . However, Na people's reciprocity systems help to understand the extent to which the economy is embedded in broader relationships . 23 Compared to Xiaoluoshui, Lijiazui community life was, as usual, punctuated by many events. Villagers gathered for festivities held to celebrate local events such as the end of a house construction, the Lunar New Year or even a gutch ceremony . Only a few tourists ventured into the area, including the very curious anthropologist that I was, often reduced to this position at first because of the surrounding tourist context, and followed the same patterns of sharing practices. They expressed and reproduced the values associated with this form of ethics of subsistence. Like the "gift" described by Marcel Mauss as a "total social fact" , festivities give insight into a broader set of ideas and local realities, be they economic, social, or cultural. The dances performed in Xiaoluoshui for the tourists did not follow the same pattern, although I will demonstrate some Na-led cultural reinvention. Although villagers performed dances on ceremonies and rituals to celebrate coming of age or weddings, the festivities were always organised for tourists. 24 The increasing tourist activity in Xiaoluoshui Village, however, has led the villagers to hire Na from the surrounding villages and the hinterland to meet the demand for tourist hospitality. Some of them came from Lijiazui Village. Young girls were quite favoured for these jobs because they enabled to support the popular representations surrounding the Mosuo , that of a "country of daughters" . With the growing importance that dances have gained in the tourist landscape, many young Na have also learned "the value of their singing and dancing skills" and often leave their villages for other tourist destinations . In Xiaoluoshui, the hiring of young girls to dance in place of villagers too busy running their small home-based hospitality businesses has radically changed the moral economy underlying the dances. From a communal social bond to a performance linked to tourist demand and the market economy valued as heritage, dances are at the heart of sociocultural change. Young women's mobility and sometimes men's give a first insight on the new values underscoring the valorisation of this cultural practice. But let us first examine the dances as performed in the village of Lijiazui following a protection ritual for a house and the comments of the villagers from this village and from Xiaoluoshui Village. --- Dancing ties Rites, lyrics and rhythms 25 During a winter day in 2013 in Lijiazui, I attended a festivity marking the end of a house construction. During that winter day, house members organised the festivity following a propitiatory ritual led by a Na religious specialist called daba. All day long the daba practitioner affiliated to the house matrilineage conducted a ritual service to chase away evil spirits 19 . During the day-long ritual, each house sent one of its members to place offerings on the fire altar as a welcoming sign. At nightfall, when the ritual was over, the oldest villagers -namely men -were invited inside the house to drink alcohol and eat, while women attended festivities outside. This gender division corresponds to the domestic-oriented society character for which the public sphere is an extension of the domestic one. Women are in charge of the domestic space while men are in charge of public relations, as can be seen in the example. Na women are often the organisers of such events while men are those who publicly hold the event. The gender division is constructed along horizontal brother/sister and vertical mother/son relationships . Intimate relationships between nonconsanguine must be discrete and therefore public male/female relationships are highly compartmentalised. The Na women and men, also waiting in the courtyard, were dressed in their most beautiful "modern" clothes, while the younger boys and girls were wearing the traditional Na clothes, a modest headdress made of horsehair for the girls and a Tibetan hat for the boys. The wedding couple makes the junction between men and women. The husband wears a Tibetanstyle outfit, and the bride follows him in a glittering Na clothes © Pascale-Marie Milan 26 House members raised an altar in the yard in front of the bonfire, around which villagers would later dance. It resembled the main house altar where women sit, named after the hearth god Zabala 20 . The dances are a continuity of the religious rituals but take place in a rather autonomous time, without being totally independent of the moral economy of daily life and religious activity. Sharing practices are in fact at the heart of the festivities and reflect both the secular imperatives of society and the importance of daba specialists in daily life. Before beginning dancing, the daba blessed the dancers with gestures and psalmody for auspiciously opening the festivities. During the dance time, members of the house welcomed villagers with sweets, cakes, fruit juices and alcohol to show their hospitality and thank them for their gifts. However, the exchange does not stop there, almost all the young Na of the village started arm in arm to sing following the flutist: sung. However, what is really expected is a good hospitality. The hosting house must offer visitors hospitality to seal their integration into the village. After each dance sequence, two or three members of the house or helpers rush to bring the guest alcohol and sweets. On that night, this little customary game between the dancers and the people of the house lasted until late at night. Everybody, especially the dancers, could measure the satisfaction degree by the time spent together, and by the redistribution of sweets and alcohol. 28 Dances are corporal techniques, or more precisely movement techniques made of a specific form, gestures and styles and necessarily referring to a particular way of being together . Among the Na, they are usually held in the houses' courtyards, where the villagers circulate in a semicircle. Dancers hold each other by interlacing their arms to form a chain. Heads, shoulders, and torsos do not move. Interlocking steps and rolling arms are the basis of the choreography's aesthetic. Bodies are thus tightened one against the other. The right arm is along the body, under the left arm of the previous dancer and so on. The clacking steps give rhythm to the dance. Dances are structured in alternating sung and instrumental sequences. When the flutist weakens intensity, the dancers take up the song and pursue more intensive movements to motivate and wait for him, the flutist, to catch his breath. During long dances, another man can take the flutist's place, and the dancers can have difficulties to follow as the pace accelerates. At this moment, because of the fast pace, arms are frequently unlinked, and some dancing variations are introduced. One can hold someone else by the shoulder , which brings the dancers to a faster tempo. Women often escape then, because of their difficulty to follow a faster pace while maintaining what they consider as graceful motions. The dance usually ends with rude but comical steps that make the assembly laugh. Step sequencing is not easy to maintain when the entire chain of dancers moves. Each is free to withdraw from the half-circle or to reintegrate it as they want. From social bonds to cultural identity. Changing meanings of Na dances in tou... The most skilled and experienced young men placed first, followed by the youngest. The first dancer followed the flutist with a hand on his shoulder. Then came the young women. The youngest boys and girls came last. When the experienced dancers needed a rest, the younger generation willingly took over. Études Children under thirteen, who had not yet had their coming-of-age ceremony, were just watching, or playing in the courtyard 24 . However, some incursions of young boys in front of young women could disrupt this generational and gendered pattern. This usually occurred when the young people had fully acquired the rhythm. If this action did not maintain the necessary pace ensuring the graceful dance chain, the person was immediately sent back. Festivities are always much more than entertainment, as evidenced by the 2018 issue "Éclats de fête" of the French-edited Socio-anthropologie journal coordinated by Edith Lallement. Na dances actually provide insight into a broader set of social behaviours concerning gender relations and the political, economic, aesthetic, and symbolic dimensions of life. --- Actions and feedback As the evening progressed, young women were also moving forward in the dance circle. They could then entwine their arms with their beloved boys. Although they are visible here , these movements illustrate a more compartmentalised daily life. Between 2012 and 2014, I observed that youths had little opportunity to see each other except during agricultural work, usually mobilising the help of relatives from another house. The main moments they could gather without the disapproval of house members were those during the main village life events . In any case, dances were always a special timeframe where Na people could transgress bodily habits. Young people attracted to each other could flirt. The physical proximity of the young women and men and the hands' grabbing were obvious signs of emotional closeness. The comments that the girls made about the love affairs in the village during their meetings were consistent with these observations. Festivities are in this sense a libidinal space where intimate encounters can be observed and are therefore a prelude for starting a nocturnal visit relationship. At nightfall, Na men go to their partner's room. However, initiating a visiting relationship starts with an encounter, which my interlocutors attribute to such moments. During various conversations about intimate relationships, young women as well as young men told me about examples of courtship games: stealing anything from a woman that she does not take back meaning a mutual consent, standing close together as in dances, etc. But despite the transgressions of the daily body habitus, this libidinal space remains discrete. The space-time of the festivities only gives the opportunity to deploy the social norms. Gatherings such as the dances are indeed the continuity of a social organisation for which the visiting system is considered as the "pivot of Mosuo culture" . Shih argues that from the characteristics of matrilineal ideology this sexual institution maintains the matrilocal residential setting and thus what he calls household harmony . Men who circulate to visit women are simply maintaining the social norms that guarantee the matrilineal principle. An analogy between dances and society can even help to understand the special "quality of action" of the former and consequently the relational patterns of the latter . The very effectiveness of dances as rites lies in their capacity to rehearse and reactivate with authority the organised, social, and symbolic space . Their spatial deployment presents this homogeneity of atmosphere and action, rendering them like the relational framework through which community values are enacted by villagers. By dancing, Na villagers are creating a special quality of relatedness between villagers and the hosting house, or rather between the village houses. Sweets and alcohol offered to dancers, and gifts offered by dancers' houses during the ritual day, seal their place into the village. Every time I observed and participated in dances in Lijiazui, I was struck by how much they provide a snapshot of reciprocity patterns governing relationships between houses considered as a collective person. Interactions between villagers and house members remind and generate sharing values, gifts as well as return obligations and mutual aid. Their efficiency is such that the dances fully participate, as a continuous moment of ceremonies and rituals, to permanently create and recreate social bonds. In this sense, the dances mirror the Na subsistence ethic. The social imaginary of the Na takes shape through exchange practices that will continue with other events throughout the existence of the house. In this sense, the festivities are like an institution, animated by a moral economy of sharing and mutual aid practices. That is to say that the dances are generators of socio-political elements. They are structuring and are structured by the dominant realities that weigh on the villages. These social issues are also carriers of subjectivity, such as the cultural behaviours expected and understood by all villagers. Their actions as individuals, houses and village communities are part of a social whole that could be understood as their tradition. My trips back and forth between the two villages between 2012 and 2014 allowed my interlocutors to comment on what they considered culture and tradition is while asking me questions about the practices I was observing. Na folks who are experiencing new livelihood opportunities tied to tourism, often refer in their own language to Lijiazui dances as traditional . One informant from the lakeside village told me one day in July 2012: "If you go to Lijiazui, you will see our traditions. There are no tourists there". This sentence reflects the daily use of the term to comment on changes they are experiencing, but also refers to a kind of nostalgia they feel. Comments on Lugu Lake cultural life transformations were also common at Lijiazui. One Lijiazui daba told me in January 2013: "You should come back for the New Year, because here we dance real dances. It is not like in your village by the lake. There they dance for the tourists". At that time, they only used the term "tradition" to compare the dances of the two villages -I was asking them in Mandarin. They readily punctuated their answers about practices that could be considered traditional with sentences like "that's how we did it". But when I asked them in Na language to "teach me the tradition" , the word conveyed other meanings and among them the most important: to know the Na tradition is to have good manners, to behave correctly. An especially striking contrast could, however, be observed in the early 2010s between rituals and songs as practised by villagers among themselves in the village of Lijiazui and the performances staged for tourists on the shores of Lugu Lake. Despite a slightly distinctive style, the Lugu Lake dances are not meaningless. Tradition has even gradually become a term used to present the dances to tourists. From social bonds to cultural identity. Changing meanings of Na dances in tou... --- Études mongoles et sibériennes, centrasiatiques et tibétaines, 54 | 2023 Taking hold of cultural encounter --- Dancing for tourists From 2011 to 2013 in Xiaoluoshui, Yang house courtyard hosted hundreds of tourists every evening. Villagers had agreed on this place, much more suitable for performing dances than the basketball court of the school. Whatever the weather conditions, the courtyard was never empty, and the program was always the same. I had the opportunity to observe and participate in these festivities as repeatedly as the Na did during my various stays in the village. Every evening after helping my host with the reception and service of tourists, we would go to Yang's house. Ama, the grandmother of the house, only went there for special occasions, and with other women of her age. She attended the festivities only for the Lunar New Year's festivities, when thirteen-year-olds celebrate their coming-of-age ceremony. During this traditional family time, tourists are more numerous to travel to Lugu Lake and the festivities do not stop anymore in Xiaoluoshui. The same goes for the gutch ceremonies that used to take place far from the tourist areas, but now some Na bring in tourists to participate. Whatever the festivities were, two men scrupulously recorded the number of entrances to the big door of Yang's house every evening. For a fee of 10 to 20 RMB they paid, tourists would dance, sing, and take pictures with the locals, especially women. The Na women were dressed in colourful and sparkling habits, and their heads were adorned with a colossal and brilliant headdress . Na women often overly made up their "dark" complexion with a white foundation, red lipstick, and false eyelashes to imitate the Chinese criteria of beauty that the tourists expected. The two men also had to count the Na villagers present for the dance. Each house had to send a representative to the dance, and also had to take turns lighting the fire around which they took place. The inhabitants collectively agreed with the village chief on these rules. If people failed to comply, they were not compensated. Many women were busy welcoming tourists to their houses and hired Na women from other villages to replace them. Whether it is in a tourist place or not, villagers are the representatives of their house. While waiting for the progressive arrival of the tourists, people were welcomed to the sound of large speakers playing Na music sung in Chinese. Then, a man from the village in the role of the speaker would begin to explain the course of the evening. Under his direction, the flutist and the dancers would dance the same dances as in Lijiazui, except that they were significantly different with regards to gestures. In fact, dancers have modified some sequences to mobilise more spectacularly the upper body, torso, and arms . Bodies were more often able to break away. Holding other dancers' shoulders was more frequent than intertwining arms. Wide arm movements ended with ornamental hand gestures resembling the slow and graceful gestures of traditional Chinese operas. This new choreographic arrangement met various expectations of Na dancers. Most of them, however, specified that they had levelled these modifications on Naxi dances in Lijiang. Some Na who worked in the city as guides in the middle of the 2000s suggested imitating the new gestures of these dances because of the astonishing tourist success. However, one of the village dance leaders, a young man around 25-years old, often leading the dance, told me in 2009 that these new gestures were largely influenced by his sister's suggestions. She experienced some success in singing and dancing when she was a member of a Mosuo women's trio that recorded some CDs. According to him, this way of dancing attracted more tourists because it was more adapted to their aesthetic criteria. The choreography does not exist in Lijiazui. In the background women wear very elaborate and glittering headdresses © Pascale-Marie Milan 40 After the dance performance, the speaker usually invited tourists to join the circle. Under his guidance, the half-circle quickly became a dense, spiralling hodgepodge. A sound system was substituted for the traditional Na flute. No matter how loud the speakers were blaring, the speaker kept telling them how to perform the steps. After experiencing folkloric "traditional" dances, the Na invited the tourists to dance Mosuo "disco". Na people use Mosuo cultural identity to promote what they consider a modern dance, even though many minority nationalities dance modern rhythms like disco. Many tourists were amazed at the bouncy dance steps and seemed particularly surprised to see Na dancers performing this modern dance. Finally, the speaker would always end up dividing Na dancers and tourists on either side of the bonfire to start a singing contest. The dancers began with a song in Narua to which the tourists responded with a well-known Chinese song. Na dancers would then mobilise Chinese songs from other minority groups to which the tourists responded with well-known classical and popular Chinese songs, still under the speaker's guidance. The singing game would continue for a dozen songs. Tourists were enjoying the show so much that they heavily applauded 25 . Each time they seemed surprised that the "backward and primitive" Na could sing the songs praising the glorious China. From exotic to erotic representations 41 Women and men dancers were usually in their twenties, but if a house had no choice its dancer may be older. Younger people generally did not participate, except for the annual events of village life like Lunar New Year's Day. However, they waited longer than their thirteenth birthday to take part in parties. Na dancers, especially women, were often solicited by tourists to take pictures with them. However, women also attracted unwanted attention. The erotic and exotic representations were always at the core of interactions with tourists. For instance, during evening performances, male guests usually insistently asked Na women if they practise the visiting system and whether they could take advantage of it. In reaction to such unwanted interactions, women had taken to insulting them in Narua, using an equivalent term to the English slang to shut someone up , while harbouring a beaming smile… 42 Because the tourists paid the entrance to the festivities, the dancers feel like they had to make good impression: resorting to their own language, which the tourists would not understand, was a way for the female dancers to react to what they perceived as harassment, thereby displaying their agency. Some tourists would also try to scratch their hands to flirt: scratching hands metaphorically means to flirt with someone. Even if some Na told me this used to be a discreet flirting practice, it rather seems to be a story told to tease the tourists' curiosity on Na erotica. In fact, Na women did not really "flirt" anymore with Na men in this manner. They were mainly flirting through cell phones. I also mentioned above that grabbing hands during dances was a sign of emotional closeness. But as these examples show, Na dances, and especially male tourists' interactions with female dancers, were imbued with fantasies about Na sexual practices. From social bonds to cultural identity. Changing meanings of Na dances in tou... --- Études mongoles et sibériennes, centrasiatiques et tibétaines, 54 | 2023 Mosuo commodification of cultural identity is part of a complex representational space endowed with the aura of a country of women/daughters , with reference to the historical female queendom recorded in the Tang dynasty annals . This name, "country of daughters", from the Chinese records, appeared in the 2000s as a brand of the Lugu Lake area to attract tourists . The tourism industry has actually greatly benefited from the 16 th century popular fantasy novel of Wu Cheng'en, The Journey to the West ), to broadcast nationwide hypothetical links between the ancient women's queendom and the country of daughters . The same goes for the Gyalrong ethnic group, a subgroup belonging to the Tibetan minority nationality, studied by the indigenous scholar Jinba Tenzin, where a fantasy of matriarchy is instrumentalised to attract tourists . To complete that picture, idyllic love was valued as a cultural trait through the work of the indigenous scholar Lamu Gatusa on Na folk stories, songs, and poetry as well as Bai Hua 白樺's famous novel written in 1988, The Remote Country of Women . The former has nurtured a romantic picture of men practising the long-distance trading expeditions to the point that they "reenter the imaginary of the Mosuo as adventurers and seducers" , while the latter features an impossible love between a Han and a Mosuo woman. Of particular interest, and regardless of its sociological meaning, was the Na visiting system. A suggestive iconography often portrays many minority nationalities across China as feminine, wearing colourful costumes, dancing, singing, and picking fruit . These representations have notably allowed for the expression of sexual issues that would have been deemed non-moral if characters had been Han, as Vanessa Frangville has argued regarding postsocialist cinema . Tourist fantasies therefore often portray the Na women as being "Freely available for sex, to whom present lovers have no future commitments, or of a land where women rule" . The Na, aware of the tourist projections, sometimes played at titillating the tourists according to these erotic representations, without responding to their fantasies . --- Tourist tricks and new aspirations Songs and dances are so powerful and effective in today's China that minority nationalities use these simplifications of cultural identities for their own purposes, thus showing that Na people are not passive subjects. Eager to transform their economic and social conditions and reverse the stigma of "backward" and "primitive" associated with their Mosuo cultural identity, many consent in performing tactically what tourists are looking for. They indeed act as a "mimesis", a notion suggested in the Sherpa case to explain a performed virtual identity for Europeans . Keenly aware of what they pretend to be for tourist consumption, Na people instrumentalise festivities to negotiate their ethnic identity and their social positions. Onstage, Na people use conventional patterns of speech -i.e., folk songs, anthropological and official discourse -for tourists that are mainly urban Han to fit their expectations about Na's alterity. According to Scott's understanding of the subaltern mentality, "the open interaction between subordinates and those who dominate" are public transcripts . For instance, during the singing joust the Na people were mobilising songs praising Mao and praising national unity. From social bonds to cultural identity. Changing meanings of Na dances in tou... --- Études mongoles et sibériennes, centrasiatiques et tibétaines, 54 | 2023 Na people indeed use festivities as a "serious game" 26 , p. 5) to communicate values, and activate their own discourse about themselves. Festivities thus become a "public arena" In the public arena, there are power relations between strategic groups defending different material or symbolic interests that unfold in the relationship and specific positions of local power. Following Cefaï, the public arena is also a "place of combat and a performance scene" . China's action for ICH clearly expresses its will to create a new space of public action . I therefore use the term in a double sense, a scene for direct interaction but also a problematic virtual situation that has to be resolved . Throughout the festivities, the Na people try to prove to tourists that they are their contemporaries. Paradoxically, they represent themselves like the evolutionist discourse portrayed them and within the tourist erotic and exotic representations to shape their future in the national political and economic fields. Within the power imbalance, Na agents calculate that the extra income can improve their "quality" to make a living. All the villagers often repeated to me that the tricks of tourism should not come to the ears of tourists. Whether it is the scarves they sell pretending to have woven them themselves, the stories they tell about the lack of fathers or husbands, the visiting system according to the dominant metanarratives or the onstage identity they perform during festivities, tourists must believe in the cultural and social specificities of the always friendly smiling Mosuo . However, as Zhuoma Latcuo, a young woman in her thirties in 2013 told me, Na people were numerous to feel tired of this showcase. Compared to the Lijiazui dances often described as traditional, they are aware, like Zhuoma Latcuo, that dances are now only for tourists and of the changing values and meaning of dances. However, they presented the Na dances as traditional to the tourists. Tourism has become a new livelihood opportunity that improves the villagers' living conditions. Many often told me that one of the advantages of tourism is that they can go to school, access hospitals, electricity, and water facilities. Some young Na people, eighteen-year-old men have left the villages to work in China's theme parks and to take advantage of their dancing talents. Zhaxi, for example, left Xiaoluoshui for the Shenzhen theme park "to see the face of the world" . Others may be hired at Lige Village cultural centre, located on the Yunnan shore of Lugu Lake, to perform a modern dance show. Sometimes dancers come from other regional minority nationalities. Here Mosuo culture is displayed according to ICH main elements and with many romantic clichés around the purity of Lugu Lake and Na love, and customary practices represented in a folkloric way, etc. Younger people are indeed often enthusiastic to dance and use their dancing skills to earn money. For this generation, dance, however, has less of a sense of community ties and more of individual achievement. At the village level, if the houses still worked together, each one would send a person to dance, which ensured attractive festivities, or bring logs for the fire. However, each house managed its own success. Their guides' networks are quite different. Some could accommodate up to 10 groups of eight, nine or ten tourists per night, while others none. A competition between the houses to attract tourists existed. Some of the houses have not hesitated to sell off the prices to attract the regular guides of other houses. Like the concurrence between houses, dances are dis-embedded from traditional cultural logic of reciprocity. Hence, a new moral economy frames the sociocultural life of Xiaoluoshui Village. As cultural practices are enhanced at the national level, the values surrounding social behaviour are now linked to the market economy. Across China, not only dances, but also songs, have become the most effective means of presenting different ethnic cultural traditions of a unified multinational state , as observed at the opening ceremonies of the 2008 Beijing Olympic Games. However, the valorisation of the traditional culture of minority nationalities raises questions about the very local meaning that national minorities may give to their cultural practices as well as to the very words of tradition and culture. --- Cultural expressions under the spotlight Meaning gaps: about cultural tradition Dances performed at Lugu Lake are presented according to a "pseudo-culturalist" angle . This is to say, locals draw their repertoire of actions and representations into the minzu cultural and "traditional" database. This process known as folklorisation is a "the processes of selection of the most visual cultural particularities of minorities to make their 'promotion'" and that leads to homogenise cultural markers so to appear immutable for commodification of the local culture . With heritagisation processes, folklore became everywhere around the world the prerogative of official cultural identity. The latter have the particularity, as Babadzan asserts, of establishing "a relationship to culture that is uniquely modern, without equivalent in traditional societies" . If exoticisation and eroticisation processes sold Mosuo culture and gendered practices as a local renewable resource of sorts , heritagisation processes promoted their "primitive" custom as cultural tradition. Chinese tourists were bound to see in these characteristics the unique cultural identity of the Na. However, the dances, presented as a cultural tradition, have been associated with the idea of immutability, which carries romantic or ethnocentric prejudices. The online presentation of these dances illustrates these presentations. Named and recorded as jiacuo for the ICH, the etymology of the word dance is presented as follows: "jia" which would mean "beautiful" , and "cuo" 搓which would mean "dance" in Mandarin. However, a linguistic approach indicates that jiacuo simply means "to dance" , as the translation of the lyrics above also shows. Highlighting these differences shows how far the institutional necessities of heritagisation are from the meaning that the Na give to dances. In other words, while dances are meant to structure the social world as well as reflect it for the Na, they are presented as ICH very appropriately for the romantic and aesthetic consumption of the tourist experience . Most of the time, whether in Chinese or English, "tradition" is a word used without a definition, and heritage narratives are not the least of it. Heritage narratives about Na dances are clearly part of "an effort to rehabilitate the past as 'tradition'", following in China "a complex product of decades-long struggle between rival modes of imagining the past" . For instance, Na dances are presented on China ICH website as "a living fossil of primitive song and dance art" From social bonds to cultural identity. Changing meanings of Na dances in tou... Études mongoles et sibériennes, centrasiatiques et tibétaines, 54 | 2023 linked to "the primitive daba religion , production, hunting and war" 27 . According to this narrative, the Na people are invariably primitive and backward people who must climb the ladder of social evolution if they are ever to become like the Han majority. There is no mention of the reciprocity pattern and social bonds linked to the dance. But for the Na, dances are considered a tradition , which means "to know the custom" or "to have good manners". My informants thus just explained to me that the dances are simply "the way they do". The same is true for "culture". In Narua, there is no word for culture. However, people's conception of "culture" is also about everyday practices for acting in the world. They thus also use the term deelo, "to know the custom" or "to have good manners". Between Young people of Lijiazui sometimes told me that they have no culture because they consider themselves to have "vulgar or low qualities" . That was their argument to explain to me why they wanted to leave the village in order to work as dancers or elsewhere in tourism areas and urban cities. The term sushi, which conveys the meanings of education, has indeed spread among the Na. Those who were looking for job opportunities but did not reside in the Lugu Lake area said that they needed to level up their qualities to the tourism market: business skills, ability to get by, speaking well, etc. Having "qualities" can be perceived as a synonym for "culture" in their explanations, in the sense of "being educated" but also in the sense of selfdevelopment joining economic goals and entrepreneurship . After all, to experience living and working in tourist areas or urban cities is an opportunity to become "more modern and civilised", according to the historical development narrative. In Lijiazui, where 13 daba were still practising in 2013, while there were none in Lugu Lake, the younger generation was still training to become daba. But in Xiaoluoshui, they are caught with the tourist market and lacked interest to follow the teaching, as the young Zhaxi told me. Dancing skills were much more attractive to them. Valued in the market as "culture", much more than daba practices, which, according to the official discourse, are supposed to be linked to dances, the dances represent a new modern opportunity to level up their "qualities" and their social conditions. With this new scope, "culture" within the expression of ICH was understood by my interlocutors in a minimal way. The Na people were nevertheless more numerous to use the ICH rhetoric since heritage inflation. On social networks, young Na and entrepreneurs now often post about local "culture" and "heritage" with the hashtag #feyi to reap the benefits of tourism. In 2021 for instance, to promote his restaurant, the --- What about transmission? As Blumenfield noticed for weaving tradition in Walabi Village, ICH could represent a source of pride and local empowerment . Despite official protection efforts, the market's vagaries can sometimes perpetuate inequalities . She earlier noticed some resilience in preserving Na culture but explains how much "Indigenous knowledge among locals has been influenced by several major changes in recent years" . This is what happened in Xiaoluoshui, despite the efforts of villagers to thwart the commercial practices of guides and agencies. The competition between the houses showed a deviation from the established system of reciprocity and a change in social organisation . In China, scholars argue that heritage cultural policies are due to the younger generation's lack of knowledge and indifference towards their heritage . Liu pointed out the Cultural Revolution's disruptions, modernisation, and even the spread of Western celebrations to justify such arrangements . This type of argument can be seen as a justification for China's current heritage regime. Following the ICH Convention, which makes the transmission and participation of communities a fundamental principle of heritage identification ), China developed "bearer" designation processes for safeguarding ICH. But there are significant differences between provinces and even communities due to the guanxi system 28 . In the Na case, only one man living in Sichuan was designated as the official "bearer", which forces us to ask: can one man be the transmitter of a collective practice? Dances cannot be performed without their federating context and the villagers as a whole, whether in tourist situations or not. Transmission patterns are passed from one generation to the next. Information passes from individual to individual by social collective learning mechanisms such as imitations, teaching, or language. I mentioned how young people turning thirteen learn the steps by informally following the lead of their elders during the first dance they can join. The means of transmission are oral and the ritual contexts, the places, and times when tradition is "communicated", are therefore intimate parts of transmission, as are the village and family-based transmission patterns. In other words, dances-transmission patterns also mirror the importance of social ties. One might thus ask again: how could one "bearer" transmit a practice learned collectively? As Robert Shepherd argues, heritage policies can also conflict with cultural and social values . The Na dances case is therefore also questioning if the prestige and advantages linked to this new category of transmitter are not, in the end, an integral part of the commodification of the traditional ethnic traditional culture? Since young people from Lijiazui relocated to tourist areas to earn money for their house, they learned simultaneously how dances can be transformed into skills for developing tourism in their villages. I discovered on social networks that since 2017, the villagers of Lijiazui have developed similar services to those in Xiaoluoshui. Now they perform dances for tourists too and welcome them to their typical houses. The heritagisation of a cultural expression that has become a tourist attraction calls for new ways of transmitting customs, skills, etc. The people of Lijiazui Village have learned a lot from their counterparts in Lugu Lake, including that the latter's participation in tourism has transformed their social conditions. As the villagers began to perform dances suitable for tourism exploitation, many older women who did not speak Chinese seemed wary. One thing is certain, in this village, conflicts like those observed at Lugu Lake with previous practices are emerging. --- Conclusion Throughout the article, I demonstrate that the very words of UNESCO to value ICH, i.e., culture and tradition, are rather vague notions. The case of the Na dances, for example, gives three ways of understanding what tradition is. On the one hand, in Chinese, "tradition" is a word that is used as a tool for heritage narratives that the state has been quick to instrumentalise. The term "tradition" in fact makes it possible to play with words and to produce new narratives about the past to build national unity. Cultural practices, once depreciated during the Cultural Revolution, are thus valued. Tradition is, however, in the Na language, a word that merges with the vague idea of culture and describes the way they have done things, and even a synonym for sociocultural savoir-faire. With the expansion of ICH narratives, tradition, as a Chinese word, has become a synonym for culture that is particularly well suited to the UNESCO device. The Na, on the other hand, do not have a word for culture in Na language. They understand the word culture in Chinese as something similar to the ladder of civilisation they have to climb. Since heritage fever certifies and beautifies cultural practices for commercial purposes, a new kind of cultural reproduction is at stake. The modes of transmission inherent in cultural practices are animated by new objectives stemming from this imposed framework, without being exempted from the conceptual universe of the Na. The Na people actually use the festivities to communicate about themselves. They have thus become a public arena for contesting, while instrumentalising, the cultural representations that conform to the evolutionary discourse. The Na people also negotiate their ethnic identity to carve out a place for themselves in the modernist agenda of the state. The Mosuo cultural identity, represented in dances, has become both a source of pride and a source of improved living conditions. This new framework, however, is unable to maintain the social efficacy or cultural meanings of the Na dances. Using the framework of moral economy, this paper shows the opposing logic of commodification and the reciprocity pattern. Heritage, as a strategy for maintaining tourism, has clearly impacted the values and norms of Na dances. The Na are hence subject to an interactional framework between the state and minority nationalities of the same order as the civilising and modernizing project. Heritage narratives and tourism are governance strategies that aim, through cultural diversity, to develop the social and economic qualities of minority nationalities so that they contribute to the GDP. Interlinear gloss NOTES 1. I would like to thank A. Dalles, C. Jacquemoud, T. Bytyqi & the anonymous reviewers for their insights on this article. I am also grateful to the members of the Barbier-Muller Foundation, Laurence Mattet and Helder Da Silva, for providing me a map and the rights to reproduce the photographs . 2. Ethnic tourism "is marketed to the public in terms of the 'quaint' customs of indigenous and often exotic peoples" . --- 3. Throughout the paper, I distinguish Na and Mosuo ethnic identities. I use the former as an endonym from the local language. The second one is used as a cultural brand corresponding to the official ethnic identity. They use it when speaking in Chinese. Thus, when I refer to heritage labels or the cultural identity promoted by tourism, I use the term "Mosuo". When I refer to their own way of calling themselves, I use Na. For clarity, I will guide the reader using Mosuo or Na to distinguish my usage, while emphasizing the inextricable link between their endonym and their official ethnic identity. --- 4. Romanised Narua terms are written according to the recent dictionary produced by Alexis Michaud which borrows from Dobbs and Yan's orthography system . I will indicate Narua terms with its ISO 639-3 code: NRU . 5. These reforms were put in place in 1978 by Deng Xiaoping to make China a great economic power. Called "reform and opening" in Chinese , they are notably characterised by the economic opening towards the West and an unprecedented economic growth. --- 6. The region is particularly ethnically diverse. Power positions related to tourism or governing institutions are generally held by people from Han, Yi and Naxi minzu , depending on the level of decision-making. Ninglang, for example, is a Yi Autonomous County under the administration of Lijiang City, which is predominantly Naxi with a strong Han presence. Only local posts in the Lugu Lake area are held by Na, as in Yongning Township. As in Lijiang, the tourism sector is monopolized by the Han, but actors such as agency owners, and guides, can be from Naxi minzu or Na, or even from other regional minority nationality groups such as Pumi, Tibetans, etc. --- 7. Ch. guojiaji fengjing mingsheng 国家级风景名胜. Tourism facilities and sightseeing offers are the main part of the criteria of this Chinese grading system. --- 8. Although the whole area is not a theme park, guides take tourists to the main sightseeing spots. Repeated visits to the lake with guides and a visit to the Kunming theme park confirm Tim Oakes' assertion. 18. The village has been welcoming tourists for the last five years. --- 9. --- 19. In Lijiazui there were 13 daba specialists practising in 2013. Almost every lineage comprising several houses could rely on its own daba to conduct rituals. --- 20. In Lijiazui, the main room of the houses is still constructed with two fireplaces, one is for women, the other for men and guests. --- 21. Narua transcription rules are still not normalised and a huge language discrepancy between villages and sometimes speakers of the same village is observed. Roselle Dobbs graciously provided assistance in the transcription of this song based on the spelling system she developed with Yan Xiong . --- 22. See the interlinear gloss in the Appendix for a complete annotation of the transcript. 23. I learned the song step by step with the help of the women and children of my hosting house, each time we were going to the festivities. --- 24. The year they turn thirteen, they would be able to join them and learn step by step, by imitation, how to dance. The coming-of-age ceremony, named the wearing of the skirt or the pants , happens in the early morning hours of the first day of the year. On that day, the children become young adults and have the full right to wear the "traditional" festive clothes. That evening, as I observed in 2013, they could then dance with other young villagers at events held to celebrate their ceremonial transition. The young people who met on the central square of the village made sure to integrate them in the round. If necessary, they even taught them the dance steps and the rhythm to follow. After a few hours, the young initiates usually got them right. --- 25. See Milan 2013a and2019 for an in-depth analysis of this singing joust. --- 26. Even if Ortner no longer uses the notion but a similar theme , I nonetheless retain "serious games" to seize how people "play by the rules" for their own purpose while being at once serious and playful. 27. https://www.ihchina.cn/Article/Index/detail?id=13053, accessed in August 2021 . --- 28. Guanxi 关系are personal ties, relationships, or social networks. It involves trust and mutual obligations between parties, and operates at the personal, family, social, business, and political levels. It can have an impact on a person's ability to influence and move things forward. --- ABSTRACTS This paper examines a situation of tourism development and heritage narratives in southwest China as it unfolds among the Na people, known for their matrilineal and matrilocal system. To and culture by locals with heritage narratives, the article emphasises the agency of Na inhabitants. Largely left out of the processes of heritagisation but negotiating ethnic representations and new livelihood opportunities through tourism, the Na attempt to carve out a place for themselves in the state's modernist agenda by showcasing dances. Cet article examine une situation de développement touristique et de récits patrimoniaux dans le sud-ouest de la Chine telle qu'elle se déroule chez le peuple Na, bien connu pour son système matrilinéaire et matrilocal. Il compare les festivités et les spectacles de danse entre deux villages, l'un touristique et l'autre non touristique, pour étudier les changements socioculturels. Je me demande dans quelle mesure les dynamiques du tourisme ont désormais remodelé les significations et les valeurs qui sous-tendent les rassemblements dansés et ce que les processus patrimoniaux suggèrent de ces transformations. En soulignant les compréhensions contradictoires de la tradition et de la culture par les habitants à travers les récits du patrimoine, cet article met l'accent sur l'agentivité des Na. Largement écartés des processus de patrimonialisation, mais négociant des représentations ethniques et de nouvelles opportunités de subsistance grâce au tourisme, les Na tentent de se tailler une place dans l'agenda de l'État moderne à travers la présentation de danses.

Logics, Stakes and Limits of Cultural Heritage Transmission in China, Russia and Mongolia, followed by Varia From social bonds to cultural identity. Changing meanings of Na dances in tourism context and heritage-making Des liens sociaux à l'identité culturelle. Changements de signification des danses Na dans le contexte du tourisme et de la patrimonialisation

Introduction --- Background and rationale {6a} Although overall HIV incidence in the USA has remained stable in recent years, new infections continue to increase in certain groups of men who have sex with men [1]. In 2014, MSM accounted for 67% of all new HIV infections [2], a rate that has risen steadily in recent years [3]. New infections are especially high among African American and Hispanic/Latino MSM. Recent surveillance data suggests that, if current incidence trends continue, 1 in 2 AA MSM and 1 in 4 H/L MSM will be diagnosed with HIV in their lifetimes [4]. One source of new HIV infections stems from those who are aware they have HIV but who are not virally suppressed. However, another major source is the estimated 20% of MSM who are infected but unaware of their status [5]. Past modeling studies have suggested that this scenario may account for up to 50% of new infections [6,7], prompting calls to increase the access and availability of HIV testing [8]. Despite their elevated risk, fewer than 60% of MSM report having been tested in the last 12 months, and only 20% have been tested more than once in the past year [9,10]. AA and H/L MSM are also twice as likely as White MSM to have never tested in their lifetimes [9]. Testing is a cornerstone of HIV prevention efforts, since it can facilitate early diagnosis and treatment [11]. Studies show that this approach can reduce HIV incidence when implemented broadly [12][13][14], in part by reducing the time between infection and diagnosis. This gap between infection and diagnosis averages 2.6 years in some areas [15]. Expanding testing is a particularly important step in reducing new infections among AA and H/L MSM, since those who are unaware of their infection may be key drivers of incidence in these groups [16,17]. Together, these findings suggest that innovative approaches to expanding testing are needed, particularly among AA and H/L MSM. --- HIV self-testing could overcome key barriers to testing In July 2012, the first rapid HIV self-test was approved by the FDA . This test uses oral fluid sampling, produces results in 20 min and can be completed entirely by end users. As a compliment to clinic-based testing, HST has the potential to reach high-risk MSM who test infrequently. Past studies show that the most prominent obstacles to clinic-based testing among MSM were concerns about confidentiality and inconvenience [18,19]. Others show that the vast majority of MSM, and especially young MSM and those who have never tested, would prefer HST and feel they would test more often with HST [18,[20][21][22][23][24][25]. Further, HST may be particularly well-suited for increasing testing among AA and H/L MSM, given that stigma and distrust of traditional medical services are key obstacles to clinic-based testing for these men [26][27][28]. These findings underscore HST's potential for overcoming barriers to testing and for encouraging those who test infrequently to do so more often. Using HST to encourage more frequent, regular HIV testing could facilitate earlier diagnosis and linkage to care, thereby improving disease outcomes [29] and reducing onward transmission [30]. For these reasons, the World Health Organization has recently recommended HST for high-risk populations and suggested that it may be key to reaching its target of diagnosing 90% of those who have HIV [31]. One strategy for increasing HIV testing among highrisk MSM involves providing free HST through the apps/sites they already use. Our past studies [32][33][34] show that using these apps to inform users about HST, conduct a brief risk assessment, and send an HST through the mail is acceptable and feasible. Moreover, Elliot et al. [35] also demonstrated that sending HST to app users successfully detected new HIV infections, with 77% of new diagnoses made at CD4 counts > 350 cells/ μL, suggesting that HST might facilitate early diagnosis. Together, this work shows that providing HST to highrisk MSM who use these sites could be an effective way to encourage them to test and may detect new infections earlier. However, these efforts have primarily been designed to encourage a single test. Mobile/web prevention tools could be an effective way to seamlessly connect with high-risk MSM via the hookup apps/sites they already use and to keep them engaged over time by encouraging them to test regularly and linking them with other prevention resources afterward. HST is underutilized as a testing strategy Despite HST's potential, it is not frequently used in community prevention and testing programs due to a number of important challenges [36][37][38]. Likely the most critical of these is that HST does not provide immediate linkage to care for those who receive "reactive" results, which some suggest may lead to delays in seeking confirmatory testing and care [39]. Modeling studies suggest that, if HST does not provide sufficient linkage to care, its use may actually increase the number of new infections at the population-level because of these delays [40]. In part to address this concern, OraSure® maintains a 24-h, tollfree helpline that HST users can call for counseling, test instructions/guidance, and HIV care referrals. However, this approach relies on consumers to "reach out" for these services, and existing evidence suggests that they rarely do: estimates from OraSure have suggested that few calls have been made to the helpline given the number of tests sold to date and that < 5% of calls were related to post-test counseling or HIV diagnosis/treatment needs [41]. These estimates appear to support concerns that many HST users are not being connected with vital follow-up and referral services after testing, including confirmatory testing/care. It also highlights the need to explore more "active" methods of engaging with HST users after testing to link those who may be positive with HIV care. Conducting more "active" follow-up after HST may also be useful for those who test negative, since it could connect these men with counseling and referrals for other critical prevention services . It could also increase the likelihood of more regular testing, since these contacts could serve as reminders for future testing and could explicitly encourage testing at regular intervals in the future. Another factor that likely hinders the adoption of HST in prevention programs is the lack of knowledge about its effects among high-risk groups in the real world. For example, some suggest that HST users may feel greater distress/anxiety and less social support when testing alone [42,43]. Others also cite concerns about "risk compensation" or increases in sexual risk behavior after HST users test negative [44,45]. HST use could also produce positive effects, however, such as increased empowerment over one's health or a greater sense of confidence and well-being. Overall, these studies suggest that exploring more active approaches for providing followup counseling and linkage/referral after HST could help inform an approach that expands testing and also efficiently connects high-risk MSM with care or prevention services. Examining how these approaches affect testing behavior, receipt of follow-up services, and the emotional/behavioral well-being of users is also critical. --- The eTest system We created a system called eTest that detects when users open HST kits remotely in real time, allowing us to conduct follow-up counseling and referral with these users over the phone. The system, described in detail elsewhere [46], uses a native smartphone application installed on users' devices and Bluetooth low-energy beacons placed inside each HST test kit . These devices relay a signal through the users' smartphone to a database when it is activated with the opening of a test kit and is nearby the user's smartphone. Once a beacon-equipped HST kit is opened, the eTest system notifies researchers that a user may have initiated HST, prompting counselors to call these users to provide post-test counseling and referrals. In a smaller 7-month pilot study [47], all participants in the eTest and standard HST groups reported HIV testing at least once, compared with 72% of controls. More of those in the HST groups also tested two or more times during this 7-month period, aligning with recommendations from the Centers for Disease Control, than those in the control group . Finally, participants in the eTest group were also significantly more likely than controls to receive certain HIV prevention services, like prevention supplies and PrEP referrals. However, we did not find differences in testing for sexually-transmitted infections or initiating PrEP across the conditions. Still, these results suggest that delivering HST kits to high-risk MSM at regular intervals could increase HIV testing rates and encourage more regular testing. Moreover, they also suggest that the eTest system warrants further testing, and specifically, exploring whether providing active post-test referrals alongside HST might also connect high-risk men with some other important services that encourage prevention behaviors. --- Objectives {7} The proposed research is a limited-interaction, longitudinal randomized controlled trial conducted primarily over the internet. The study tests whether the eTest system and providing home delivery of HST at regular, 3month intervals increases rates of any and repeat HIV testing, use of other prevention services , and PrEP linkage/initiation compared with "standard" HST and reminders for clinic-based testing in high-risk MSM. Specifically, we will test whether the eTest system results in higher rates of initial and follow-up HIV testing and receipt of additional prevention services compared with standard HST and reminders for clinic-based testing among MSM. We will also test whether providing focused information/counseling about PrEP during eTest contacts results in more participants consulting with medical providers about PrEP and initiating PrEP. Finally, we will also assess the cost-effectiveness of the eTest system for improving rates of HIV testing compared with clinic-based testing alone, exploring whether the eTest system can be costeffective under various scenarios . --- Fig. 1 HST kit equipped with beacon --- Trial design {8} In this study, participants recruited from various websites were enrolled and oriented to the study online and were randomized 1:1 to a single study condition for the 12month trial. This design is intended to test the superiority of HST with phone counseling versus passive HST and clinic-based testing alone. --- Methods: participants, interventions, and outcomes --- Study setting {9} Participants will be recruited from several major US cities intended to provide both broad geographic representation and oversample the South. These cities included Boston, MA, Providence, RI, Los Angeles, CA, New Orleans, LA, Baton Rouge, LA, Shreveport, LA, Jackson, MS, Miami, FL, Orlando, FL, Jacksonville, FL, and Tallahassee, FL. These areas have some of the highest rates of MSM living with undiagnosed HIV [48] in the USA. --- Eligibility criteria {10} Eligible participants will be males who were assigned male sex at birth, who are not currently on PrEP, and who report any of the following in the past 6 months: anal sex without condoms outside of a monogamous partnership with a recently tested HIVnegative male, an STI diagnosis, or an ongoing sexual partnership with an HIV-positive male. Risk criteria were chosen to align with The Department of Health and Human Services PrEP criteria [49] to focus on recruiting those at highest risk for HIV and are optimal candidates for PrEP. Eligible participants will also have not tested for HIV in the last 12 months, have a stable residence in one of the site metros where they can securely receive packages, and use an iOS/ Android smartphone with a data plan or home Wi-Fi, and will be fluent in either English or Spanish. Phone counseling interventions will be conducted by Bachelor's degree -holding staff members who are certified HIV test counselors in Rhode Island. --- Who will take informed consent? {26a} Participants will provide informed consent online as part of an online study "onboarding" process. Informed consent information will be provided in written, audio, and video formats, in lay language. Important concepts will be highlighted via bulleted text, highlighted text, and/or captions. A short, two-question "quiz" will assess whether participants understand key consent information. After providing online consent, study staff will also contact participants by phone to collect further contact information, affirm their commitment to enroll in the study, and ensure their understanding of consent information. Based on these conversations, if staff have reason to believe that a participant is not aware of study requirements or may be unable to provide informed consent, they will notify the participant that they will not be enrolled. --- Additional consent provisions for collection and use of participant data and biological specimens {26b} Participants will be asked to provide consent for broad use of their online survey and medical service use data, to facilitate secondary data analyses. --- Interventions --- Explanation for the choice of comparators {6b} We elected to compare real-time, "active" outreach for phone counseling after HST versus "passive" HST given evidence from our previous research that reaching out to MSM and HST may be a good opportunity to connect them with other HIV prevention services . We also elected to include a control group that involved sending text message reminders for participants to seek clinic-based testing to provide a comparison of these HST methods with a low-cost intervention that resembles the standard approach to increasing testing. --- Intervention description {11a} For control group participants, text messages will be sent once every 3 months to remind them to get tested for HIV at a local clinic. These messages will contain links to a site that provides a concise list of clinics in the participant's area that provide free HIV testing services and their locations, phone numbers, and hours. For standard HST participants, staff will send an HST kit to their confirmed shipping addresses every 3 months. These participants will receive no phone-based followup, but can use OraSure's provided 1-800 number for questions or needs. For eTest participants, HST kits will also be sent to participants' confirmed shipping addresses every 3 months. However, each test kit will be fit with an Estimote™ Bluetooth beacon. These beacons automatically detect when each kit is opened and relay this information to a central study database, which triggers an email notification sent to counselors. Within 24 h of opening the kit, an HIV test counselor will call eTest participants to conduct post-test counseling and refer them to other needed services, including PrEP. --- Criteria for discontinuing or modifying allocated interventions {11b} The interventions will not be modified for any reason. --- Strategies to improve adherence to interventions {11c} All participants will be instructed to keep the app downloaded as much as possible during their time in the study. Since the app's database allows us to track when users uninstall it, we will contact participants who delete the app by phone and email to inquire about their interest in continuing with the study. We will also track data on app uninstalls to continue examining the usability and burden of the app. eTest participants who change their smartphones during the study period will be able to re-download and login to the eTest app from app stores appropriate to their operating system . To avoid influencing the study results, participants in HST conditions will not be given explicit instructions about whether or not to use the tests sent to them. Participants will be informed that HST kits will be sent to them 1 week, 3 months, 6 months, and 9 months after initially signing up and that they can choose to take these tests or not. --- Relevant concomitant care permitted or prohibited during the trial {11d} Participants are encouraged to seek PrEP care as part of the study's intervention. As a result, those on PrEP during screening will be excluded. All other types of care are permitted. --- Provisions for post-trial care {30} Referrals to local, LGBT-friendly agencies for substance abuse treatment, mental health treatment, and primary care will be provided continuously throughout the trial. Lists of these clinics and services will be generated by research staff, verified, updated as needed throughout the study, and will be provided to participants through the app, and in every test kit package sent during the study. Participants who test positive with HST will be assured that an initially reactive result is not a confirmed positive result. Counselors will then use three-way calling to assist participants in scheduling an appointment for confirmatory testing at specific designated clinics in each city in which the investigators have existing relationships. These clinics/centers have standard procedures for providing newly diagnosed patients ongoing HIV care. Test counselors will conduct follow-up calls after each participant's scheduled appointments to ensure that they receive confirmatory testing. Participants with reactive test results will also be screened for suicidality during these calls, and if necessary, intervention will be provided according to National Suicide Prevention Lifeline procedures. Due to funding limitations, there are currently no plans to continue providing HST to participants after the study has completed. --- Outcomes {12} Primary outcomes will be the proportion of participants in each group who tested for HIV at any point over the 12-month study, tested within each 3-month interval, and were tested at least once during the CDC-recommended intervals of at least once every 6 months over the year-long study. The proportion of participants who consulted with a physician about PrEP, received a PrEP prescription, received any STI testing during the study period, and received STI testing at least once during each 6-month period, aligning with the CDC-recommended interval of testing for STIs at least once every 6 months. These outcomes will be assessed via self-report in online follow-up surveys collected at 1, 4, 7, 10, and 12 months post-enrollment. Self-report data on clinic-based HIV testing, STI testing, and PrEP uptake will be verified by requesting medical records data from the clinics in which participants reported receiving these services. --- Participant timeline {13} Participants will be enrolled and randomized on a rolling basis, beginning in January 15, 2019, until January 15, 2022. Once enrolled, participants will receive their assigned study intervention at 1 month, 4 months, 7 months, and 10 months after baseline. They will complete online follow-up questionnaires at baseline, 3 months, 6 months, 9 months, and 12 months. These online follow-ups will collect data on the study's key outcomes. At 12 months, participants will be asked to present to a local clinic to provide a blood sample for HIV testing for a bonus payment of $50. This procedure will ensure that all participants have at least one HIV test throughout the study period. As this is a "limited interaction" study in which our goal was to explore how these interventions might fare when implemented in real-world scenarios, there were no in-person visits. See Figs. 2 and3 for study timelines. --- Sample size {14} We used past studies [50,51] and GLIMMPSE software [52] to determine the sample sizes necessary to detect significant effects using each of the proposed analysis models in section 20a. In our pilot data [47], differences in most outcomes across the HST and control conditions were very large, while differences across standard HST and eTest conditions were small . Given our interest in whether eTest improves outcomes relative to standard HST, we therefore estimated the sample size necessary to detect small effects across all models. The sample size needed to detect an effect of this size in a logistic regression model , assuming α = 0.05 and an observed power of .80, was 845. In a mixed-effects regression model testing between-group differences in HIV testing within each of four quarterly assessments using the same assumptions and within-persons correlations drawn from our pilot study , the sample size required to detect small effect sizes between groups was 240. As such, we selected a total target sample size of 900 to align with the largest of these sample size estimates, plus some over enrollment to compensate for missed responses and attrition. --- Recruitment {15} All participants will be recruited via geographically focused advertisements placed on social media , general search , and gay-oriented websites and apps . These advertisements will appear Fig. 2 Participant timeline on the study Fig. 3 SPIRIT timeline on the study. See above the "Outcomes {12}" section for a full list of primary study outcomes assessed at all assessment timepoints to those who log in within a specified radius of each identified metro area. One important goal of this trial was to recruit substantial portions of AA and H/L MSM, due to their higher risk for HIV infection . To achieve this, we will use specific ad content that depicts AA and H/L individuals and recruit in cities with large populations of AA and H/L MSM. --- Assignment of interventions: allocation --- Sequence generation {16a} The allocation sequence was determined using computer-generated random numbers. Groups were not stratified by any factors. Study randomizations are simple; no blocking is used in the randomization scheme. --- Concealment mechanism {16b} A web application through which participants enroll in the study will automatically assign participants to study conditions without interacting with study staff in any way. --- Implementation {16c} The web application will generate the allocation sequence, enroll participants, and assign them to intervention conditions. The allocation sequence was generated before the study began. --- Assignment of interventions: blinding --- Who will be blinded {17a} Neither participants nor research staff in charge of corresponding with participants will be blinded to participants' study condition. However, the risk of bias from these study staff members is low, because followup surveys are not administered by research staff. A study database automatically sends emails to participants in order to facilitate completion. The primary data analyst will be blinded to study condition for betweengroup analyses of primary study outcomes. --- Procedure for unblinding if needed {17b} Due to the nature of the interventions, there will be no blinding of participants nor research staff. --- Data collection and management --- Plans for assessment and collection of outcomes {18a} We will use online surveys to collect all self-report data. These online surveys will be collected at baseline, 1 month, 4 months, 7 months, 10 months, and 12 months. These follow-up intervals were selected in order to avoid priming responses, given that test kits and reminders will be sent at baseline, 3 months, 6 months, and 9 months. On each semi-quarterly follow-up survey's due date, the study database will automatically send participants an email with language-specific instructions and links to the surveys. Participants will be asked to complete these within 2 days of being sent. Repeated follow-up survey submissions will be discouraged by notifying participants they have already completed the assigned survey if they click the email survey link. Follow-up surveys will assess HIV testing since the last study assessment, including whether they tested, how/ where they tested, what their results were, whether each test was associated with PrEP care, or reasons for not testing. This approach will allow us to track contamination across conditions or the extent to which those assigned to the control condition used a HST or those inHST conditions tested at a clinic. Questionnaires will also assess whether participants were referred for additional prevention services and whether they received these services since the last survey. Items will also assess whether participants consulted with a medical provider about PrEP in the last month, and if so, their provider's information and whether they were prescribed PrEP. We will also review clinical data for each participant to compare with self-report data on HIV testing, STI testing, and PrEP uptake. We will obtain signed HIPAA releases for each service participants reported using, in order to allow these clinics to release relevant records to us in order to verify these services. Data on verified service use will be compared across conditions to explore potential differences. While we anticipate that this data will be incomplete , we believe that collecting as much corroborating data as possible will serve as an important compliment to self-report data. At the end of the 12-month study period, all participants in all conditions will also be asked to present to designated clinics for in-person HIV testing in exchange for a bonus payment . Encouraging participants in this way will help ensure that we have at least one accurate HIV test result for each . Results will allow us to more confidently estimate the number of new infections that were successfully detected or missed with HST versus clinic-based testing reminders. --- Plans to promote participant retention and complete follow-up {18b} For participants who fail to complete their online follow-up surveys the day they are assigned, reminder emails will be sent every day for 5 days after the due date. If participants have not completed the survey within 5 days of their due date, research staff will contact participants by phone, text message, and email to encourage adherence. For all participants, those who fail to complete two consecutive quarterly assessments will be considered to have been withdrawn from the study and will not contacted further. Quarterly surveys will also inquire about any changes in participants' contact information each month. --- Data management {19} Data will be collected using an online survey platform and will be continuously transferred with each participant submission to a central study database using a web service. Prior to performing analyses, we will conduct range checks to ensure the plausibility of values. --- Confidentiality {27} Before beginning their work on the study, all members of the research staff will receive thorough training in procedures designed to maintain data security. While collecting and storing participants' personal information using web-connected databases is unavoidable due to the nature of the study, a number of steps will be used to help secure and safeguard this data throughout the project. All elements of the proposed system will be hosted on secure servers that enforce a strict set of security and authentication rules. For all elements containing sensitive or protected information, additional security measures will be applied, such as two-step verification , VPN-only access, and IP-specific firewall rules. Access to participant information will be restricted to essential research staff and only after two-step verification. Since participants will complete quarterly questionnaires online, and some questions asked will be sensitive, they will be specifically instructed to complete these in a private location when possible. Emails that are automatically sent to participants to remind them to complete the surveys will also remind them to complete assessments in private. Reminder emails will also contain no identifying information or references to HIV testing or other sensitive topics. All participants will have access to information about HIV and other sexually transmitted infections, testing, prevention, and referral information via the eTest app. As such, they will be instructed to use their phone's lock screen to prevent unauthorized access. They will also be instructed to access this information only in private locations. Push notifications and text messages will be worded as innocuously as possible . Participants will be encouraged to use their devices' native security settings while they are in the study. If participants have been assigned to either the standard HST or eTest conditions, OraSure OraQuick® HST kits will be sent to the verified physical addresses of participants throughout the study. To safeguard participant confidentiality, these packages will be sent in discrete packaging. An information card will also provide participants with tips for ensuring their privacy while taking the test at home and for disposing of the test collection swab. OraSure provides an envelope container that participants can use to confidentially dispose of the test collection swab after the test is complete. When conducting follow-up phone calls, counselors will first ensure that participants have adequate privacy to discuss the test over the phone, and if not, calls will be rescheduled. Data from these calls will be manually entered by counselors into the study's central, password-protected database. Occasionally, counseling phone calls will also be digitally recorded for training, supervision, and fidelity purposes. These recording files will be passwordprotected and stored on the study's secure servers, in locations separate from participants' identifying data. Digital audio recordings collected for supervision purposes will be deleted immediately after supervision meetings have occurred. Those used for training and fidelity will be stripped of any identifying information that may have been recorded and deleted after they have been used. Once the study is completed, we will create a compiled dataset with all collected study data, and remove any identifying information. Once this deidentified, archival dataset is created, we will destroy any original participant identifying information. Plans for collection, laboratory evaluation, and storage of biological specimens for genetic or molecular analysis in this trial/future use {33} Not applicable. --- Statistical methods --- Statistical methods for primary and secondary outcomes {20a} To test whether rates of any testing differed across the three study arms, we will use factorial logistic regression. Dummy-coded variables reflecting study condition will serve as the focal predictors. To explore the effects of study condition on regular HIV testing, we will use multilevel models for repeated, binary outcomes, with a dummy variable reflecting whether participants tested during each 3-month study period as the focal outcome. A logit link function and independent correlation structure will be specified, with time and study condition as a focal predictor to test whether the odds of testing differ across time period and condition. For all models of HIV testing outcomes, a covariate reflecting whether a given participant had initiated PrEP will be added to each model, since national guidelines require these individuals to be tested for HIV quarterly as a part of ongoing PrEP care. Doing so will allow us to estimate the effects of study arm on HIV testing among those who did not initiate PrEP. To test whether the conditions differed in terms of the number of participants who sought consultation about PrEP or ultimately initiated PrEP, we will estimate factorial logistic regression with a dummy-coded indicator for study condition as a focal predictor. Finally, to test whether the study conditions differed in terms of the number of participants who received STI testing at any point during the study period, we will estimate logistic regression models, with dummy-coded variables for study condition serving as focal predictors. --- Interim analyses {21b} No interim analyses will be performed. The trial will be terminated when the target sample size is reached. --- Methods for additional analyses {20b} No additional subgroup analyses are planned. --- Methods in analysis to handle protocol non-adherence and any statistical methods to handle missing data {20c} Data from those who drop out or withdraw from the study will be used in these analyses in intent-to-treat fashion [53]. Depending on the degree of missing assessments, we will use multiple imputation for these values [54]. Plans to give access to the full protocol, participant leveldata and statistical code {31c} After all participants have finished completing study procedures, a de-identified, archival dataset will be created. Once created, this dataset will be uploaded into the National Institute of Mental Health's data archive in accordance with institute policy. The dataset will be provided to investigators upon request after an embargo period of 2 years. Analysis scripts associated with all publications will also be made available upon request. --- Oversight and monitoring --- Composition of the coordinating center and trial steering committee {5d} The study's scientific team will serve as the primary steering committee and jointly make all decisions about the course and conduct of the study. All members are physicians, most with training in infectious diseases, with the exception of Dr. Wray, who is a clinical psychologist. Formal meetings of this steering committee will occur at least monthly, with informal communication occurring weekly or more often. --- Composition of the data monitoring committee, its role and reporting structure {21a} As this trial tests several interventions known to improve HIV testing rates, multiple ethics review committees have determined that no data monitoring committee was necessary for this trial. That is, since each of the interventions being studied only improve upon the standard of care, the risk was insufficient to warrant close, independent monitoring of the study results. --- Adverse event reporting and harms {22} Adverse events and other unintended effects are collected from research participants systematically in online surveys. There are no adverse events expected, as this is a minimal risk study. However, if an adverse event is reported, the study's contact PI will complete an adverse events form and report the event to the Brown University Institutional Review Board within 24 h. The PI will also report adverse events in writing to the study's sponsor. The PI will then gather any information needed to investigate the event and to determine subsequent action and will document and report any subsequent action to the IRB and the sponsor. We will also generate a brief report of adverse events for the study record each year, and we will forward the report to the IRB and the sponsor. We will report all adverse events in trial publications. --- Frequency and plans for auditing trial conduct {23} No procedures are planned to audit the trial conduct. Plans for communicating important protocol amendments to relevant parties {25} Amendments to the trial protocol will first be requested from the home institution's IRB. Once approved, these amendments will then be reflected in the trial protocol, and a revised version will be updated on this study's trial registration page. Any other information in the registry will also be changed to reflect the amendment. Major changes to the scientific direction of the project will be requested from the study's sponsor and approved prior to changing the conduct of the trial. --- Dissemination plans {31a} Results of the primary outcomes identified in this trial will be published in relevant scholarly journals. Investigators will also present these results at relevant national conferences. Results will also be uploaded into the trial registry after they are available. We will also upload a final, de-identified archival dataset to the National Institute on Mental Health's data archive. This dataset will be made available to requesting investigators after an embargo period of 2 years. --- Discussion We believe one of HST's key strengths is its potential to reach high-risk MSM who do not otherwise engage with traditional, "brick-and-mortar" services [22][23][24]. It may also be a particularly effective strategy for engaging many AA and H/L MSM, who may be reluctant to use traditional services due to medical mistrust and fear of stigma [26][27][28]. We designed this study as a practical, "limited interaction" trial in order to approximate what a program that provides regular, home delivery of HST might look like if it were implemented in actual communities, focusing on "harder to reach" MSM who may be better served with HST. However, we also balanced these goals with the need to collect thorough and valid data on the effects of programs like these over time. For these reasons, we elected to recruit and enroll participants entirely online and use infrequent online surveys as follow-up, in order to avoid the barriers involved in face-to-face appointments. Although we realize that this will likely present difficulties in terms of ensuring the validity of data collected, several steps involved in our procedures were intended to help address this. First, multiple online signups from the same IP or device will be blocked, and participants must verify their email addresses when registering, as well as other contact information via a call with staff after enrollment. Second, in this brief enrollment call, research staff will ensure each participants' understanding of the study procedures and commitment to completing the study procedures before considering participants fully enrolled. Third, participants who report having received HIV prevention or sexual health services at a clinic in each follow-up survey will be asked to submit a signed release within that same survey requesting that these clinics release data from the medical records of these patients to our research team. Staff will then send this release to each clinic and request that these data be shared with our research team. These data will be tracked in a central study database and used to validate participants' self-report. Together, we believe the described procedures balance being as "hands off" as possible with conducting regular follow-ups and validation steps that allow us to understand the effects of these programs thoroughly and accurately. The results of this study will ultimately help us understand how much regular, home delivery of HST might improve rates of HIV testing and promote regular testing, relative to a lower-cost strategy of simply reminding MSM to get tested at local clinics at regular intervals. It will also help us understand whether providing real-time counseling and referrals over the phone after HST use helps connect more MSM with needed HIV prevention services like risk reduction counseling, STI testing, and PrEP, when compared to passive HST or clinic-based testing alone. If this research supports the use of eTest to help connect MSM with prevention services, future research should explore strategies for implementing similar programs in highly affected communities in the USA. Future research could also focus on improving methods for identifying those at highest risk within various communities, engaging them in similar HST home delivery programs, determining optimal HST intervals for detecting new cases in these individuals, and changing community stakeholder attitudes about HST. --- Trial status Protocol version number 1 . Recruitment began on January 15, 2019, and is slated to conclude on January 15, 2022. --- Availability of data and materials {29} Not applicable. --- Abbreviations MSM: Men who have sex with men; HIV: Human immunodeficiency virus; STI: Sexually transmitted infection; PrEP: Pre-exposure prophylaxis; HST: HIV self-testing Authors' contributions {31b} TW, PC, JK, LM, and JB assisted in designing the study and its procedures, ES, DC, and LW assisted in the preparation of the study protocol and this manuscript. All authors of the primary outcome manuscript will have made a substantive contribution to the research, which could include conceptualizing the study idea, conducting background literature searches, designing the study, selecting research instruments, selecting/performing/ interpreting statistical analyses, or preparing the manuscript. The authors read and approved the final manuscript. --- Competing interests {28} The authors declare that they have no competing interests. --- Consent for publication {32} Not applicable. --- Ethics approval and consent to participate {24} Informed consent will be obtained from all participants. The Brown University Institutional Review Board has reviewed and approved all trial procedures. --- Authors' information None. ---

Background: HIV disproportionately affects men who have sex with men (MSM) in the USA, and new infections continue to increase, particularly among African American (AA) and Hispanic/Latino (H/L) MSM. Rates of HIV testing are particularly low among AA and H/L MSM, and innovative approaches to encourage testing may help address high incidence in these men. HIV self-testing (HST) may be an important tool for increasing rates and frequency of testing. HST may be particularly well-suited for AA and H/L MSM, given that stigma and mistrust of medical care contribute to low testing rates. Despite its promise, however, many are concerned that HST does not sufficiently connect users with critical post-testing resources, such as confirmatory testing and care among those who test positive, and that these limitations may result in delayed linkage to care. Methods: We developed a mobile health platform (eTest) that monitors when HST users open their tests in real time, allowing us to provide timely, "active" follow-up counseling and referral over the phone. In this study, 900 high-risk MSM (with targets of 40% AA, 35% H/L) who have not tested in the last year will be recruited from social media and other gay-oriented websites in several major cities. Over 12 months, participants will be randomly assigned to receive (1) HST with post-test phone counseling and referral (eTest condition), (2) HST without active follow-up (standard condition), or (3) reminders to get tested for HIV at a local clinic (control) every 3 months. Primary outcomes include rates of HIV testing, receipt of additional HIV prevention services, and PrEP initiation verified by clinical medical records.

INTRODUCTION Since its inception in 1987, the Center for the Study of Traumatic Stress has studied and generated knowledge about the behavioral and psychological consequences of trauma. The CSTS is active in providing education about, consultation for, and conducting research on terrorism, disasters, and combat/deployments. The CSTS has been involved in nearly every large-scale disaster that has touched the nation during the past 20 years. A component of the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, the CSTS serves as DCoE's leading academic arm regarding traumatic stress. Disasters affect individuals, groups, and communities and, by their very nature, often occur with little warning. The force of destruction can lead to substantial losses, including physical losses and emotional disruptions . Nearly all affected by disasters will experience some degree of distress. Depending on the degree of personal exposure and loss, intensity, and duration, disasters may precipitate mental disorders in some individuals. Disasters can be broadly divided into two types: natural disasters and human-made disasters. Hurricanes, fl oods, earthquakes, tsunamis, pandemic infl uenza, and other destructive forces of nature are representative of natural disasters. These events are often considered "acts of God." As such, present science provides limited means of prevention and very little can be done to alter the occurrence or course of such disasters. However, the effects of natural disasters often are affected by human-made conditions and choices. Acts of mass violence, such as war and terrorism, industrial accidents, nuclear accidents, and transportation accidents, represent the other type of disaster: human-made disasters. Human actions or factors contribute to these disasters and include structural failure, the failure of safety mechanisms, or intentionally caused destruction. The distinction between natural and human-made disaster is important because there is evidence that human-made disasters precipitate more prolonged and diffi cult recoveries for those affected. 1 In human-made disasters, there is the belief that the event was preventable, which may contribute to the distress individuals and communities experience. Terrorism is a special category of human-made disasters; these intentional acts are conducted with the purpose of inducing fear, shock, horror, and revulsion in a society. These particular acts aim to challenge a society's sense of well being, cohesion, and security. From a disaster mental health management perspective, mitigating the psychological and behavioral effects of disaster requires an appreciation of these types of disasters and the range of distress-related pathology in individuals and communities. --- RESPONSES TO DISASTER Psychosocial responses to war, trauma, and disaster include horror, anger, fear, sleep problems, increased substance use, and social isolation . Intentional man-made disasters, such as war and terrorism, often have more prolonged and more complex sequelae. 2 Trauma-related disorders include PTSD, traumatic grief, unexplained somatic symptoms, depression, and sleep disturbance. At the individual level response depends on a number of variables. The severity of response is greatest in those with high perceived threat to life, those with low controllability , those who experience high loss and injury, and those with exposure to death and grotesque scenarios. [3][4][5][6][7][8][9] The severity of response also is increased when there is a threat of the disaster recurring. The psychological and behavioral responses to trauma and disasters can be grouped into three categories: distress responses, health risk behaviors, or mental health/illness 10 . Distress responses are the signifi cant emotional states or responses related to the stress of the disaster. These include change in sleep, increased sense of vulnerability or isolation, and decreased feelings of safety. These may occur shortly after a disaster and can lead into the other domains described. It is important to note that distress responses also include somatic symptoms such as unexplained pain, headaches, and fatigue. These symptoms can be associated with anxiety and depression and often are fi rst evaluated/seen in primary care clinics. Health risk behaviors include those behaviors or actions made in response to experiencing a disaster. These include increased alcohol, tobacco and drug use, 1,11 change in travel, separation anxiety, and-in the case of some disaster responders-overdedication. Overdedication can create heroes; it can also create casualties in one's unit, when work cycles and rest periods are ignored due to the desire to accomplish the important recovery tasks at hand. Lastly, there may be manifestation of psychiatric illness including post-traumatic stress disorder and acute stress disorder ; 12 however, they are not the only traumarelated diagnoses and may not be the most common. 1,3,13,14 Increased risk for depression, 13 generalized anxiety disorder, panic disorder, and increased substance use disorders 15,16 also are seen in response to trauma and disasters. Complicated grief is a syndrome related to PTSD, but includes excessive yearning for a signifi cant other and intrusive recollections surrounding their death. While it is not formally recognized as a psychiatric diagnosis, it represents a distinct subset of disaster-related psychopathology for which recognition and treatment approaches have been developed. When thinking about responses to disaster, war, and trauma, it is helpful to conceptualize the responses as being on a continuum and consider that traumatic stress responses in most individuals resolve over time. This does not mean persons will not be changed by their disaster experiences, but most will endure the distress. With appropriate medical and fi nancial resources and suffi cient psychosocial support, persistent impairment in emotional, social, and behavioral function are the exception rather than the rule. This tendency toward recovery often is termed "resilience" defi ned as a dynamic process of health recovery and coping in the face of adversity. 17 Optimism, intelligence, humor, creativity, and active coping are related to resilience and positive outcomes after crises. 18 Following disasters, acute behavioral and emotional responses of distress are common . 17 For most individuals, these symptoms will improve over time and will not require further intervention. A smaller subset may experience more prolonged symptoms, such as insomnia, increased smoking, drug or alcohol consumption, or bereavement. This particular group may respond to supportive psychological interventions and, if required, brief psychopharmacologic intervention for targeted symptoms . A still smaller subgroup may develop psychiatric illness, including anxiety disorders , depressive disorders, or substance use disorders. Such individuals may require formal and more prolonged interventions. A major challenge in disaster mental health response is identifying those who require more intensive treatment approaches and delivering such care in a timely fashion. While PTSD often is considered the most signifi cant of persistent pathological changes in response to trauma or disaster, the potential trajectories of this disorder are complex. One way to conceptualize PTSD is to draw an analogy to the common cold. For example, a person involved in a motor vehicle accident may not sleep well for the next several months, may take some time off from work, may jump when they hear a loud noise, and may decide not to drive the same route where the accident took place. Most likely this person will recover; that is, they had an acute reaction that will resolve over time, just as most people recover from the common cold; however, some with a cold will develop complications such as pneumonia and even chronic disability. In the same way, the normal repair mechanisms may be impaired and those left vulnerable may develop chronic PTSD. --- THE IMPACT OF WAR ON THE HOMEFRONT War is one type of human-made disaster. The wars in Iraq and Afghanistan have exposed substantial numbers of service members to stressors: injuries, deaths, and prolonged separations from home. All of these factors impact families, in addition to war fi ghters in the fi eld. There are not only exposures to being shot at; there are separations, short-term losses, and losses that will last a lifetime. The effect that war may have on individuals, families, communities, and organizations is profound, and the scope of exposure is great. In considering the impact of the current war, it is valuable to recall that nearly 2 million military members have been deployed to date, with approximately 156,000 currently deployed. To put this into perspective, 3.4 million deployed in support of the Vietnam War, 1.79 million in the Korean War, and 695,550 in the Gulf War . Twelve million were deployed overseas for 16 months during World War II, and approximately 400,000 were killed. 19 As of the end of October 2008, there have been 4,188 fatalities in Iraq, with 81% the result of hostile fi re; 30,757 have been wounded; and 56% have returned to duty. 20 With the current confl ict in its fi fth year, repeated and extended deployments are occurring at an increasing rate. The recently released fi fth report of the Mental Health Advisory Team found that the length of deployment and repeated deployments were major factors in determining the level of mental distress in soldiers; more marines and soldiers were reporting mental health problems compared to earlier reports; and primary care and mental health providers were showing signs of "burn out." 21 Marines and sailors typically have shorter, more frequent deployments. Some are looking at fi fth or sixth deployments, as well as longer deployments. Soldiers, national guard members, and reservists may go for longer deployments of 12-18 months and now are seeing second, third, or even fourth deployments. Legislation to assure that military personnel have as much time at home between deployments as in combat has not been passed. At this point, many are spending more time in training and combat zones than at home. In previous confl icts, war fi ghters expected to be away from home either for the duration of the war or for a prescribed time period of 1 or 2 years. For most, when it was over, it was over. At home, mental health workers are seeing increased rates of substance abuse and aggression. 22 Recent studies also have documented the many ways in which deployments are affecting families, including increased rates of child neglect. 23,24 Also of interest is the "healthy warrior" concept-that a group of marines studied were more "mentally healthy" while deployed than a comparable group in garrison, 25 refl ecting both the choice of who deploys and the stress of the readjustment to home. The study of the effects of exposure to trauma and consequent development of symptoms is complex and multifactorial, ranging from genetic and epigenetic predisposing factors to the impact of social support. There is a signifi cant body of research showing that the psychological effects of repeated trauma are cumulative. 26,27 Most of this work has involved civilian populations and dealt with a variety of traumas including childhood trauma, sexual assault, and other factors that may be predisposing in ways different from repeated exposure to combat. Evidence suggests that trauma experienced by civilians, and even emergency personnel, may be different from combat exposure in important ways. 28 In combat stress, there is a dose-response relationship between combat exposure as measured by length or intensity of exposure and development of psychiatric symptoms of depression, anxiety, and acute or post-traumatic stress disorders; however, there is limited data on the effects of repeated deployments. Studies of repeated exposures in civilian disasters and in fi rst responders also is limited. This is the fi rst time that we have the ability to study the effects of repeated exposure in a large population. Furthermore, although there is a growing body of research, we know little about repeated exposures in both civilian fi rst responders and military. --- CHANGING HEALTH CARE AND FOSTERING COMMUNITY RESILIENCE Identifying and studying the populations known to be at risk in and after war and after disasters, including fi rst responders, victims, the injured, the elderly, children, and those with preexisting psychiatric illness, can assist with preparedness by helping to identify factors that can hinder recovery. Asking questions to better understand and appreciate the problem at hand is imperative. This information helps us in knowing where to apply the "levers" of intervention. Interventions to alter the trajectory of combat and deployment stress on military members and families include education, development of best practices and evidenced-based interventions, knowledge dissemination, just-in-time education, and real-time consultation . Injured service members are at high risk of psychiatric distress and illness. 29 It is best to conceptualize that there are "injured families" since the families of injured service members have to change, alter responsibilities, plan different futures, and manage long-term emotional disruption. When the injured come home, the families must learn how to recover and to deal with their losses. Also, the families must develop ways to sustain parenting for the children who now have changed parents. Likewise, the injured soldier parents must learn new ways to deal with their children. Another family outcome of the present war is increased child neglect rates. 24 War deployments create single-parent families. Not surprisingly, rates of neglect cases, as studied in Army families, have increased since the onset of the war. This highlights the needs of our military children and families as a whole, along with the diffi culties of parenting during deployments. Education as an intervention includes knowledge dissemination, public education, command and supervisor education, and patient and provider education. Public education is most effective when it is attached to a teachable moment, a particular time when a person is more open to learning, usually when the topic is central to them at the moment. 30 Public education and intervention present an opportunity to teach skills and provide information to families and providers to assist not only in the present, but also to prepare them for potential problems in the future. A teachable moment is when the populace is receptive to the message, that is, when they are listening and feel the message is applicable to them . Early intervention is a key component of nearly all interventions. Psychological fi rst aid is an important new concept in early intervention. This is an evidence-informed intervention, with focus on tenets such as promoting safety, promoting calm, promoting connectedness, instilling hope, and promoting self-effi cacy in those affected by disaster. 31 Early intervention requires getting information to the people who can use it so that they can apply it, preferably in the early stages following a traumatic event . --- NEW FRONTIERS Along with developing an appreciation for the psychology of PTSD, it is vital to understand the neuroscience of traumatic stress. What is the neurobiology of PTSD? Of resilience? Of recovery? Can we predict success with our psychological and psychopharmacological interventions? Can we identify biomarkers for trauma-related disorders, for their course and for their recovery? The science behind this is rapidly evolving. Recent advances and observations regarding the neurobiology of PTSD include fi ndings that reduced perirhinal cortical activity is associated with recovery after trauma exposure, 32 along with genes newly associate with PTSD, [33][34][35] and various animal models of the symptoms of PTSD. In addition, recently our group published the fi rst study of PTSD in the human brain, identifying increased p11 mRNA expression in the prefrontal cortices of those with PTSD. The studies found similar changes in animal models of PTSD. 36 --- CONCLUSION Frequently, we think of PTSD as a problem with remembering, but it is perhaps better conceptualized as a problem with forgetting. It is our forgetting process that is impaired. Forgetting may well be much more important to our brain and our health than remembering. 37 We are constantly taking in new material to better respond to threats in our environment, but we also have to be able to forget, particularly to recover from traumatic events. Our work to help our soldiers, sailors, airmen, and marines aims to enable them to be able to forget-not to lose what they know, but to be able to put it on the shelf, rather than feel required to remember constantly. In this way, they can better extinguish the excessive fear, worry, and anxiety in response to "benign" reminders of serious past threats. Discovering how this can be facilitated by medication , by therapy for others, or through psychosocial support provided by friends, leaders, and communities is the goal of new research.

Disasters, such as war, terrorism, and natural disasters, affect individuals, groups, and communities. Although the focus is often on post-traumatic stress disorder (PTSD), it is only one of many potential responses to traumatic experiences. Fostering community and individual resilience can help mitigate the effects of disaster. Research, education, and early intervention are integral tools to inform an effective response. The Center for the Study of Traumatic Stress (CSTS) at the Uniformed Services University of the Health Sciences ascribes to such a model in its approach. Recent studies confi rm that appreciation of biology and its relation to trauma response are necessary to our understanding of trauma's effects on humans, including trauma-associated disorders, resiliency, and recovery.

INTRODUCTION Mobile phones have become increasingly ubiquitous and essential, with individuals all throughout the world embracing their potential with enthusiasm. 1 The proliferation of mobile phones and their use as a crucial means of communication has played a major role in helping people overcome the difficulties of daily life. From organizing everyday tasks to maintaining contact with work colleagues, friends, and family, [2][3][4] the functions of mobile phones have widened and transformed into smartphones. 3 The term smartphone generally refers to mobile phones with more sophisticated connection and computational capabilities than regular mobile phones. 5,6 With these advanced functionalities, there is no limit to the applications that can be created for smartphones. Their usage appears in many fields: entertainment , communication , and knowledge searching . [5][6][7] Although smartphones offer many benefits, they can also lead to excessive use. [8][9][10] Excessive smartphone use as a new concept aroused wide interest. 11,12 Excessive smartphone use refers to a state of obsession when the individual behavior is out of control due to the overuse of mobile phones, leading to significant impairments in physical state, psychological state, and social function. 13 Various terms have been used to describe different patterns of smartphone overuse. These include, for example, "smartphone addiction," "excessive smartphone use," "problematic smartphone use," and "smartphone overuse." 14 Although most research in the field declares that smartphones are addictive or takes the existence of smartphone addiction for granted, their review did not find sufficient support from the addiction perspective to confirm the existence of smartphone addiction at this time. Addiction is a disorder with severe effects on physical and psychological health. Excessive use, impulse control problems, and negative consequences may present as addiction, but that does not mean they should be considered an addiction. 15 For the sake of simplicity, we have adopted the term "excessive smartphone use" in this study to refer to the complete range of problematic or maladaptive smartphone use patterns. A growing amount of literature has indicated that adolescents and young adults spend too much time on their smartphones and feel obsessed with them. 5,8 In 2021, China had the most smartphone users worldwide, followed by India. 16 Meanwhile, based on a survey from Thailand's statistics on information and communication technology, Thai people, especially young people, tend to use smartphones earlier than other demographic groups; 98.4 percent of those aged 15-24 years old use smartphones, 97.3 percent of those aged 25-34 years old use smartphone, and 90.6 percent of those aged 35-49 use smartphones. 17 Rapid smartphone advancements have led university students to adopt electronic devices as an essential part of their lifetimes because of their advanced features. Most university students use their smartphones for recreational, social, and educational purposes. 18 Therefore, university students are more vulnerable to excessive smartphone use. 19,20 They use them almost all the time 10 , which is a sign of excessive smartphone use. 21 In addition, overwhelming evidence shows that smartphones, in particular excessive use, may have various adverse consequences on health and life performance 22, 23 leading to headaches, fatigue, 3,24,25 sleep disturbances, 3,10,24,25 neck disorders, 26 insomnia, 3 stress, 25,27 anxiety, 4,13,14 depression, 10,13,14,25,28 psychological issues, 11,19,20 nomophobia, 21,29 decreased academic success, 5,22 and diminished social participation in real life. 3 Previous studies have emphasized associations between specific sociodemographic variables and excessive smartphone use. A few studies have examined the relationship between excessive smartphone use and perceptions of health-related effects. So far, little is known about the extent of the relationship between excessive smartphone use and university students' field of study. Although many research groups have studied smartphone use among university students, the study of smartphone use among university students in rural areas of Thailand, where the students might have less access to smartphones than those in urban areas, is scant. This study aimed to investigate smartphone use behavior and its association with perceptions of the healthrelated effects among rural university students in Phayao Province, Northern Thailand. --- METHODS --- Study Design and Sample Size A cross-sectional design was used to conduct the study among first-year undergraduate students recruited using the convenient sampling procedure at University of Phayao, Northern Thailand. For this study, individuals were randomly selected from two different multidisciplinary buildings. The population was indefinite, and the researcher did not have access to the exact population due to the first-year undergraduate students in all fields; therefore, Cochran's formula was applied to estimate the sample size. 30 The formula was n/k ≥ 30, where n is the number of samples used in the research per one variable 31 , which yielded a sample size of 270 . Assuming a dropout rate of 10%, we determined that 297 participants would be sufficient for this study. Therefore, the total number of participants in this study from two multidisciplinary buildings was 594. The inclusion criteria required the participants to be first-year undergraduate students with a smartphone, access to the internet , and a willingness to participate in this study. Subsequently, participants were recruited from each multidisciplinary building until the desired sample size was achieved. The Phayao Human Ethics Committee approved the study. Participants were recruited following a lecture break. They were first informed of the study's objectives and assured confidentiality of their data gathered between the May and July 2019 academic year. The average time for completing the questionnaire was approximately 10-20 minutes. Participants with more than 50% missing data were excluded from the analyses. --- Instrumentation A self-administered questionnaire developed and created by the researchers was based on a survey of relevant literature and similar studies. 3,5,6,32,33 The questionnaire consisted of three different sections. The first section comprised 10 items describing the demographic characteristics of the participants, including fields of study, gender, age, body mass index , underlying diseases, father's occupation, mother's occupation, financial status , smartphone experience, and internet usage patterns. The second section comprised 15 items covering smartphone use in entertainment, education, and finance. These items were used to measure the potentially excessive smartphone use of the participants. The final section of the study comprised 27 items covering four dimensions of health consequences, e.g., physical health consequences, mental health consequences, social health consequences, and spiritual health consequences. These items were used to evaluate participants' perceived health consequences of smartphone use. The second and third sections assessed the frequency of behaviors and the respondents' perceived health consequences in the previous two weeks on a four-point Likert scale ranging from 1 = not at any time, 2 = occasionally, 3 = frequently, to 4 = continuously. The total scores were calculated by summing item scores for each section. Excessive smartphone use was classified using the summed score: 1.00-2.00 = low use, 2.01-3.00 = moderate use, and 3.01-4.00 = high use. The perceived health consequences of smartphone use were categorized using the summed score as follows: 1.00-2.00 = low health consequences, 2.01-3.00 = moderate health consequences, and 3.01-4.00 = high health consequences. Three experts from the School of Medicine and the School of Public Health reviewed and scored the questionnaire items to assess the content validity using the index of item-objective congruence . The questionnaire's internal consistency as the indicator of reliability was measured employing Cronbach's alpha coefficient derived from data of 30 pilot students not included in the main sample. The reliability coefficient for the entire excessive smartphone use questionnaire was 0.79 and ranged from 0.62-0.76 in terms of dimensions. The reliability of the entire questionnaire measuring perceived health consequences was 0.88 and ranged from 0.78 to 0.86 in terms of dimensions. --- Statistical Analyses Data collected from the study were organized and analyzed using the IBM SPSS Statistics software version 27.0. Cronbach's alpha coefficients were calculated to establish reliability. Sociodemographic characteristics, excessive smartphone use, and perceived health consequences were analyzed using descriptive statistics. The factors and excessive smartphone use associated with perceived health consequences were examined using univariate analysis. Additionally, a simple linear regression was undertaken to identify predictors of the perceived health consequences, and variables with p-value < 0.15 were then entered into the multiple linear regression. Using the Enter method, statistically significant variables at the 0.05 level were entered into the final model. --- RESULTS The study included 594 undergraduate participants. Four students were excluded because of incomplete data. Thus, the final study included 590 participants who were classified into three different fields of study: HSS , ST , and HS . Furthermore, 79.2% were females, and 20.8% were males. The mean age was 18.8 ± 0.6 years, and the participants' average smartphone experience was 6.3 ± 1.73 years . Regarding the perceived health consequences, the results indicated that 76.1% of the participants were classified as having moderate levels. Moreover, participants in the field of HSS had the highest mean score, followed by ST and HS groups, respectively. Interestingly, the highest mean scores emerged for excessive smartphone use and perceived health consequences across all dimensions in the HSS fields. Linear regression was used to identify excessive smartphone use and other variables associated with perceived health consequences. In the bivariate analysis, 11 variables were statistically significantly associated with perceived health consequences at less than the 0.15 level . In the final model, the results revealed that four variables -body mass index, the father's occupation, the field of study, and excessive smartphone use -were significantly related to perceived health consequences . There was an inversely significant relationship between the obese group and the perceived health consequences , with the perceived health consequences score being significantly lower in the obese group than in the normal group . The perceived health consequences score was significantly higher in two occupations associated with the fathergovernment employee and general worker . The model predicted that perceived health consequences were 0.088 points higher in the HSS group than in the HS group . Moreover, increasing each excessive smartphone use score increased the perceived health consequences score by about 0.262 points . When classified by field of study, the multiple linear regression analysis revealed that the excessive smartphone use score was significantly associated with perceived health consequences in all fields of study, as shown in Table 5. In the ST and HSS groups, excessive smartphone use and the father's occupation were significantly associated with perceived health consequences. Furthermore, the standardized coefficients between the excessive smartphone use and perceived health consequences scores were found to be highest in the HS field , followed by ST and the HSS --- DISCUSSION This study focused on factors and excessive smartphone use associated with perceived health consequences among rural university students majoring in various fields. Scholars must understand the different health promotion and prevention practices in diverse study areas. Nearly all participants in this study exhibited moderate or high excessive smartphone use. Likewise, in a previous study conducted in Chiangmai , 45.8% of the students were categorized as excessive smartphone users. 19 Based on a review of the positive and negative effects of smartphone use on students, smartphones in the 21st century are seen as an essential part of university students' everyday lives because of their advanced features. Most students utilize smartphones for entertainment, social, and educational purposes. 18 In particular, 54.9% of the students in the HSS group scored high on smartphone use. Furthermore, the HSS group had a greater proportion of users utilizing smartphones excessively compared to other groups. A previous study conducted in China also found that undergraduates in the humanities were more likely to use smartphones inappropriately, suggesting that undergraduates who were planning to major in the humanities while in high school are at greater risk of experiencing such adverse effects. 34 Indeed, a literature review revealed that only a few studies had examined the link between addiction and a student's field of study, supporting the findings of this study. Some of these studies have discovered that humanities students are more addicted to smartphones than physical science students. 32 In a study conducted by Long et al. 34 , majoring in science vs. humanities was a significant predictor of problematic smartphone use in the final model . Moreover, Zarei et al. 33 found that 90.2% of medical sciences students were not addicted to their smartphones and that only 9.8% were addicted to the internet. Specifically, when considering subelements, including entertainment, educational, and financial use, the findings indicated that students in the HSS field are more likely to use smartphones to accomplish various daily tasks than students in other fields. However, this finding calls for further investigation. Over three-quarters of all participants were classified as having moderate perceived health consequences. Specifically, 27.7% of students in the HSS field reported the highest perceived health consequences from smartphone use compared to other groups. Moreover, the multiple linear regression analysis revealed that excessive smartphone use was significantly associated with perceived health consequences in all fields of study. This means that students with a higher score on excessive smartphone use are likely to experience perceived health consequences. A previous study in Turkey has shown that 71.2% of students declared having health problems related to smartphone usage. Insomnia and fatigue were revealed as the most common health complaint related to smartphone use. 3 Furthermore, the mean scores for all perceived health consequence dimensionsphysical, mental, social, and spiritual health -were the highest in the HSS group. The model predicted that perceived health consequences were 0.088 points higher in the HSS group than in the HS group . One of the crucial reasons for the low mean perceived health consequences score in the HS and ST groups could be strong knowledge of the fundamentals of health and science among these students, enabling them to appraise potential harms and protect themselves by taking actions, such as controlling excessive smartphone use, assessing initial health problems, and switching to other activities. Regarding the physical health dimension, this study's findings, together with those of a Thailand study, 26 suggest that university student smartphone users utilize a smartphone 3.55 ± 2.66 hours per day, a habit that leads to musculoskeletal disorders. The neck was the most painful body region after using smartphones for more than 12 months . One common neck disorder was a flexed-neck posture . Moreover, a study conducted in Korea 36 found that participants who were addicted to smartphones were more likely to have experienced accidents , which included falling from a height, slipping , or experiencing bumps and collisions . Likewise, a growing body of evidence demonstrates excessive smartphone use or addiction is negatively associated with mental health problems among college students, 11,19,20 including depression, 10,13,14,25,28 anxiety, 4,13,14 stress, 25, 27 and nomophobia. 21,29 On the other hand, normal smartphone use was negatively associated with mental health problems, indicating that reduced smartphone use can minimize such health problems. For instance, appropriate amounts of time spent on a smartphone were positively related to life satisfaction. 20,22 In addition, we found that other factors -such as financial status, body mass index, father's occupation, and genderwere significantly associated with perceived health consequences in different fields of study. This finding is similar to the results of other researchers. Coban et al. 35 demonstrated that smartphone addiction doubles the risk of obesity in university students. Consistent with the work of Zencirci et al. 3 and Long et al. 34 one risk factor for problematic smartphone use was better financial status of the family. However, it is unclear in this study why students whose fathers were government employees tended to have higher scores on perceived health consequences than those with fathers employed in other fields. The results of this study should be considered in light of several limitations. First, because of a cross-sectional study design, causation could not be inferred. Second, our assessments of smartphone use and perceived health consequences were developed by researchers based on relevant literature and similar studies. Therefore, our findings cannot be compared with other smartphone addictions recorded using standard assessment forms. However, our assessments were valid and reliable. Finally, participants in the current study were from University of Phayao in the northern part of Thailand's rural area, which limits the generalizability of the results to other regions; therefore, largescale studies with nationally representative samples are thus highly recommended in the future. Moreover, the participants were limited to undergraduate students. In this regard, undergraduate students are more vulnerable to excessive smartphone use and smartphone addiction. However, other vulnerable groups should also be recruited in future research studies. --- CONCLUSION

Mobile phone usage has increased dramatically in recent years. University students, in particular, are among the most prolific smartphone users. This research aimed to determine the association between excessive smartphone use and perceived health consequences of such use among rural university students majoring in various fields. The cross-sectional design was used to conduct the study among first-year undergraduate students recruited using the convenient sampling procedure. The questionnaire consisted of three sections: participants' demographics, excessive smartphone use, and perceptions of health consequences. Data were analyzed using bivariate and multiple linear regression analysis. A total of 590 responses completed the questionnaire. The results showed that 79.2% of the participants were female and the mean age was 18.8 ± 0.6 years. The original sample comprised students belonging to Humanities and Social Sciences; HSS (59.3%), Science and Technology; ST (25.3%), and Health Sciences; HS (15.4%) fields. The level of excessive smartphone use of these students was moderate (49.3%), high (49.0%), and low (1.7%). Over half of them demonstrated the perceived health consequences at a moderate level (76.1%) and a high level (22.0%); only a minority indicated a low level (1.9%). Linear regression analysis showed that excessive smartphone use was positively and significantly associated with the perceptions of health consequences among rural university students (p-value < 0.001). Other variables such as body mass index, father's occupation, and fields of study were related to the perceived health consequences among rural university students (p-value < 0.05). According to the outcomes of this research, it is recommended that intervention be made to encourage and support appropriate smartphone usage behaviors.

www.nature.com/scientificreports/ individual, social, and cultural factors, which mechanisms make it possible for an individual to refuse to comply with immoral orders. There were several challenges to consider in order to develop such a paradigm, both ethical and methodological. Studying obedience and resistance to immoral orders involves putting volunteers in a situation where they have to make a decision on whether or not to commit 'immoral acts' under orders. A balance has to be found between what is acceptable from an ethical perspective and what is necessary for the research question. Milgram's studies on obedience raised undeniable ethical issues [12][13][14] , mostly associated with high stress and the use a cover story, which involves deception. Some variants of Milgram's studies were realized with immersive virtual reality to prevent the ethical issues associated with Milgram's paradigm 15 , but the transparency of the fake scenario presented to participants does not capture decision-making in an ecological set-up. Other Milgram-based variants, such as the 150-V method, appear to replicate Milgram's results 16 with respect to the actual ethical standards, but methodological concerns are still present 17 as cover stories are still used, which lead to interpretation issues. Beyond ethical considerations, the use of deception also indeed involves a doubt about whether or not volunteers truly believed the cover story. As a consequence, a reasonable doubt remains on how to interpret the results and this is one of the main critics associated with Milgram's studies and following versions. Recent work on the reports of Milgram's volunteers suggested that there are no strong and reliable evidence that participants believed in the cover story 8,14,18 . Others suggested that since the stress of participants was visible on video recordings during the experiment , this suggests that participants actually believed that they were torturing another human being 19 . However, this interpretation has been challenged by another study showing that participants can have physiological reactions to stress even in an obviously-fake experimental set-up 15 . These contrasting interpretations of Milgram's studies actually reinforce the idea that results can hardly be interpreted when cover stories are used 20 . To answer those criticisms, a real scenario had thus to be created, where participants made decisions that have real consequences on another human being. An additional challenge is that methods relying on the original paradigm of Milgram, such as the virtual reality version 15 or the 150-V method 16 are not adapted to neuroimaging measurements. More specifically, with such Milgram-like experimental approaches, only a single trial would be recorded for the entire experimental session, that is, when the volunteer stops the experiment . For cognitive and neuroimaging data collection, a single trial per participant is not a reliable result, which requires the averaging of several trials to obtain a good signal-to-noise ratio. Another challenge at the methodological and conceptual levels it that several experimenters 1,5,21,22 including myself [21][22][23][24][25][26][27] , noted that volunteers are extremely obedient when coming to an experiment. Personally, I have tested about 800 volunteers to investigate the mechanisms by which coercive instructions influence individual cognition and moral behaviors. For instance, by using behavioral, electrophysiological and neuroimaging methods, we have observed that when people obey orders to send real shocks to someone else, their sense of agency 23 , their feeling of responsibility 28 , empathy for the pain of the victim and interpersonal guilt 26 are attenuated compared to a situation where they are free to decide which action to execute. Out of 800 volunteers tested, only 27 disobeyed my orders : 21 for prosocial reasons , 3 by contradiction , and 3 for antisocial reasons . Although convenient to study how obedience affects cognition, this rate is indubitably an issue when studying disobedience. If participants almost never disobey, we can't study the mechanisms through which resistance to immoral orders may develop in a given situation. Several reasons for not disobeying the experimenter's orders have been suggested. Some consider that being obedient is part of the human nature as massive and destructive obedience has been observed through countless historical events 2 . Another current view on the experiments of Milgram is that volunteers were actually happy to participate and to contribute to the acquisition of scientific data 17 , thus explaining the high obedience rate observed. This effect has been referred to as 'engaged followership' 29 . If that interpretation is correct, the volunteer's willingness to come and help the experimenter acquiring scientific data creates an extra difficulty to obtain disobedience in an experimental setup. However, this interpretation is challenged by several studies reported by Milgram, which displayed a higher disobedience rate than his original study. For instance disobedience increases when the shocks' receiver sits in the same room as the participant or when the authoritative experimenter is not physically present in the room 5 . If participants were indeed only guided by their willingness to help to acquire scientific data, this should be the case in any experimental set-up. As some studies involve a higher disobedience rate compared to the initial version of Milgram's study 1 , they could thus, at a first glance, be used for studying disobedience. However, even if some versions of the initial study of Milgram offer a highly disobedience rate, thus making it possible to study the mechanisms through which resistance to immoral orders may develop in a given situation, these experimental set-ups are still not adapted for cognitive and neuroimaging measurements and still rely on the use of a cover story. Taking all the presented challenges into account , the present paper presents a set of experiments that combine the strengths of past experimental work on obedience. Volunteers were openly involved and active rather than having to act in fictitious scenarios . They were confronted with moral decisions to follow or not the orders from an experimenter to inflict a real painful shock to a 'victim' in exchange for a small monetary gain, thus avoiding the use of cover stories. Since the aim here is to develop a paradigm that could be used both in behavioral and neuroimaging studies, some basic characteristics had to be considered. For instance, to fit with a Magnetic Resonance Imagery scanning environment, neither the 'victim' , nor the experimenter were in the same room as the agent. A real-time video was thus used to display a video of the victim's hand receiving shocks on the agent's screen and headphones were used so the participant could hear the experimenter's orders. Another method to study disobedience would be to select participants who are more likely to disobey than others. Each volunteer was thus also asked to complete a series of personality questionnaires to evaluate if a specific profile is associated with a greater prosocial disobedience rate. Systematic post-experimental interviews were conducted at the end of each experiment in order to understand the decisions of volunteers to follow or not the orders of the experimenter and to ask them how they felt during the experiment. --- Method Participants. A hundred eighty naive volunteers were recruited in same gender dyads . During the recruitment procedure, I ensured that the participants in each dyad were neither close friends , nor relatives. To estimate the sample size a priori, I calculated the total sample size based on an effect size f of . To achieve a power of 0.85 for this effect size, the estimated sample size was 168 for 6 groups 30 . I increased the sample size slightly to 180 in order to prevent loss of data in case of withdrawals. Volunteers were randomly assigned to one of the 6 variants of the task . One volunteer was not taken into account because they only played the role of the 'victim' to replace a participant who did not show up. No volunteers withdrew from the experiment. For the remaining 179 volunteers, the mean age was 22.63 years old . A Univariate ANOVA with Age as the dependent variable and Variant as the fixed factor confirmed that age of the volunteers did not differ between the different variant of the tasks . Volunteers received between €10 and €19.60 for their participation. All volunteers provided written informed consent prior to the experiment. The study was approved by the Ethics Committee of the Erasme Hospital . All methods were performed in accordance with the relevant guidelines and regulations. --- Method and Material. Six experimental set-ups were created in a between-subject design. In all six setups, volunteers were invited by pairs. One person was assigned to start as agent and the other one to start as 'victim' . Their roles were switched mid-way, ensuring reciprocity. Compared to the experimental design of Milgram, both volunteers were real participants, not confederates. The reciprocity also avoided volunteers to be stuck in the role of the person providing pain to the other, thus attenuating the potential psychological distress of being in a perpetrator role only. Volunteers were given the possibility to choose the role they wanted to start with. In the case none of them had a preference, role assignment was decided by a coin flip, but volunteers were reminded that they could still decide themselves. This procedure allows to ensure that participants do not think that this procedure is a trick. Volunteers were first given the instructions of the task. Then, they signed the consent forms in front of each other, so both were aware of the other's consent. The experimenter was never present in the same room, but rather gave the instructions through headphones. This was for two reasons. First, Milgram's studies show that disobedience increases if the experimenter is not physically present in the room. Second, in the case of MRI scanning, the experimenter would not be able to give direct verbal instructions to the volunteers in the MRI room due to the high noise of the scanner. Here, agents were isolated in a room and were provided headphones to hear the experimenter's instructions . They were told that this was done to avoid attentional interferences through the experimenter's physical presence in the room. In this series of studies, instructions were pre-recorded but a real setup with a microphone connected to the headphones could also work. Pre-recordings allow perfect timing of the events, important for neuroimaging or electroencephalography recordings. The instructions were "give a shock" or "don't give a shock". To increase the authenticity of the procedure, each sentence was recorded 6 times with small variations in the voice and displayed randomly. In addition, the audio recordings included a background sound similar to interphone communications. Shocks were delivered using a constant current stimulator connected to two electrodes placed on the back of victims' left hand, visible to the agent through the camera display. Individual pain thresholds were determined for the two volunteers before starting the experiment. This threshold was determined by increasing stimulation in steps of 1 mA . I approximated an appropriate threshold by asking a series of questions about their pain perception during the calibration . When roles were reversed, I briefly re-calibrated the pain threshold of the new victim by increasing the stimulation again from 0 in steps of 3 mA up to the previously determined threshold, to confirm that the initial estimate was still appropriate, and to allow re-familiarisation. The mean stimulation level selected by this procedure was 36.3 mA . I chose this instead of other types of pain because it produces a clear muscle twitch on the victim's hand each time a shock is sent. This allows volunteers to have a clear and visible feedback of the consequences of their actions and to be fully aware that shocks were real. There was a total of 96 trials per experimental condition. In the coerced condition, the experimenter asked to give a shock in 64 trials and asked not to give a shock 32 trials. This ratio was chosen on the assumption that the volunteer's willingness to refuse immoral orders would increase with the number of times they were instructed to inflict pain to the "victim". On each trial, a picture of two rectangles, a red one labelled 'SHOCK' and a green one labelled 'NO SHOCK' , was displayed in the bottom left and right of the screen. The key-outcome mapping varied randomly on a trialwise basis, but the outcome was always fully congruent with the mapping seen by the participant. Agents could then press one of the two buttons. Pressing the SHOCK key delivered a shock to the victim while pressing the NO SHOCK key did not deliver any shocks. This procedure of randomized button mapping allows to have a better control over motor preparation, an aspect that can be important for neuroimaging data. In half of the variants of the task , the "Aim" variants, participants were given a reason for obeying the orders of the experimenter, while this was not the case in the other half, the "No aim" variants. In the "No Aim" variants, I did not provide any reasons for obeying to the participants and I simply explained the task. If participants asked about the aim, I simply told them that they would know at the end of the experiment, without providing further justifications. In the "Aim" variants, volunteers were told that researchers observed a specific brain activity in the motor cortex in another study when participants were given instructions. We explained that the present study was a control study to measure different aspects linked to motor activity when they press buttons, in order to see if the button pressing was related to brain activity measured over the motor cortex. To increase the veracity of the aim, electrodes were also placed on their fingers and connected to a real electromyography apparatus to supposedly record their muscle activity. Volunteers were instructed to press the two buttons only with their right and left index fingers, as naturally as possible, and to avoid producing too ample movements to create clean EMG data. In the case volunteers asked if they really had to follow orders, I told them that for ethical reasons I could not force them to do anything, but that it would be better for the sake of the experiment. Telling them explicitly that they could disobey the orders would not be beneficial in the quest of studying 'real' disobedience. In 4 out of 6 variants of the task, the "Free-choice" variants, a second experimental condition was used, the free-choice condition. In this condition, volunteers were told that they could freely decide in each trial to shock the 'victim' or not. In this condition, they did not receive instructions. In 4 out of 6 variants of the task, the "Monetary reward" variants, agents received a monetary reward of + €0.05 for each shock delivered. In the other 2 variants, volunteers were not rewarded for each shock delivered . To resume, the 6 variants of the same task were the following: 1). Before the experimental session, volunteers filled in six questionnaires. Those questionnaires included the Money Attitude Scale 31 , the Moral Foundation Questionnaire 32 , the The experimenter was located in a third, separated room. The agent heard on a trial basis the orders of the experiment through headphones and had to decide to press the 'SHOCK' or 'NO SHOCK' button. A real-time camera feedback displayed the hand of the victim of the agent's screen so to allow to keep track on the consequences of their actions. Table 1. Schematic representation of each variant of the experimental task. --- Variants of the task Aim for obedience Monetary reward Free-choice condition Variant 1 ✗ ✓ ✓ Variant 2 ✗ ✗ ✓ Variant 3 ✓ ✓ ✓ Variant 4 ✓ ✗ ✓ Variant 5 ✗ ✓ ✗ Variant 6 ✓ ✓ ✗ Aggression-Submission-Conventionalism scale 33 , the short dark triad scale 34 , the Interpersonal Reactivity Index 35 . At the end of the experimental session, they were asked to fill in two more questionnaires: A debriefing assessing what they felt during the experiment and the reasons for choosing to obey or disobey the orders of the experimenter and a questionnaire on social identification with the experimenter 36 . At the end of the experiment a debriefing was conducted for each volunteer, separately. Volunteers were then paid, again separately. --- General data analyses. Each result was analyzed with both frequentist and Bayesian statistics 37 . Bayesian statistics assess the likelihood of the data under both the null and the alternative hypothesis. BF 10 corresponds to the p/p. Generally, a BF between 1/3 and 3 indicates that the data is similarly likely under the H 1 and H 0 , and that the data does not adjudicate which is more likely. A BF 10 below 1/3 or above 3 is interpreted as supporting H 0 and H 1 , respectively. For instance, BF 10 = 20 would mean that the data are 20 times more likely under H 1 than H 0 providing very strong support for H 1 , while BF 10 = 0.05 would mean that the data are 20 times more likely under H 0 than H 1 providing very strong support for H 0 --- 38 . BF and p values were calculated using JASP 39 and the default priors implemented in JASP. All analyses were two-tailed. --- Results Number of shocks given in the free-choice condition. In the free-choice condition, volunteers were told that they were entirely free to decide to deliver a shock or not to the 'victim' on each of the 96 free-choice trials. On average, agents administered shocks to the victim on 31.86% of the trials in the free-choice condition, corresponding to 30.59/96 shocks. A paired-sample t-test indicated that agents delivered less frequently a shock in the free-choice condition than in the coerced condition = -9.919, p < 0.001, Cohen's d = -0.906, BF 10 = 1.987e + 14). This result supports the fact that individuals can inflict more harm to others when they obey orders than when they act freely. --- Prosocial disobedience across variants. In the present study, I was interested in prosocial disobedience, that is, when agents refuse the orders of the experimenter to send a painful shock to the 'victim' . Table 2 displays the number of volunteers who reported that they voluntarily disobeyed in each variant of the task. In this experiment, the main variable of interest was not to consider how many participants disobeyed in each variant only, but also how frequently they disobeyed. A percentage of prosocial disobedience was calculated for each volunteer, corresponding to the number of trials in which participants chose to disobey divided by the total number of trials corresponding to the order to send a shock, multiplied by 100. I compared the prosocial disobedience rate across variants of the task, gender of participants and order of the role. I conducted a univariate ANOVA with prosocial disobedience as the dependent variable and Aim , Monetary reward , Free-choice , Gender and Order of the Role as fixed factors . Both frequentist and Bayesian statistics strongly supported a main effect of Aim = 14.248, p < 0.001, η 2 partial = 0.084, BF incl = 158.806). Prosocial disobedience was lower when an aim for obedience was given to volunteers than when no aim was given . Both frequentist and Bayesian statistics also supported a main effect of Monetary reward = 12.335, p = 0.001, η 2 partial = 0.074, BF incl = 28.930). Prosocial disobedience was lower when a monetary reward was given for each shock than when no monetary reward was given . The frequentist approach showed a main effect of Gender = 5.128, p = 0.025, η 2 partial = 0.032), with a lower prosocial disobedience rate for female volunteers then for male volunteers . However, the Bayesian version of the same analysis revealed a lack of sensitivity . All other main effects or interactions supported H 0 or a lack of sensitivity . The following results report two-tailed Pearson correlations between prosocial disobedience and several other variables, including the reasons given for disobeying, the feeling of responsibility, badness and how sorry they experienced during the experiment, the identification with the experimenter, the perceived level of pain of the victim, identification with the 'victim' , and individual differences measured through self-report questionnaires. I applied a False Discovery Rate approach with the Benjamini and Hochberg method 40 to each p-value for each of those correlations but for the sake of clarity these variables are reported in different sub-sections. Reasons for prosocial disobedience. All participants who reported that they voluntarily disobeyed the orders of the experimenter were presented a list of 10 reasons that they had to rate from "Not at all" to "Extremely" . The reason 'I wanted to make more money' was only considered for the data of volunteers who had a variant with a monetary reward for each shock . Both frequentist and Bayesian statistics showed that the percentage of prosocial disobedience positively correlated with moral reasons , positively correlated with disobedience by contradiction and negatively correlated with the willingness to make more money . Other correlations were in favor of H 0 or were inconclusive . Feeling responsible, bad and sorry. Both frequentist and Bayesian statistics showed strong positive correlations between prosocial disobedience and how responsible and how bad they felt during the task . The more responsible and worse they felt during the task, the more they refused the order to send a shock to the 'victim' . How sorry they felt was inconclusive . Identification with the experimenter. Both frequentist and Bayesian statistics strongly supported H 0 regarding the relationship between prosocial disobedience and personal identification and bonding with the experimenter . The relationship between the charisma of the experimenter and prosocial disobedience was also slightly in favor of H 0 . --- Estimated pain of the 'victim'. The frequentist approach showed a positive correlation between the perceived pain of the 'victim' and prosocial disobedience . The higher they considered the 'victim' to be in pain, the more frequently they refused to deliver the shock. The Bayesian version of the same analysis slightly supported this relationship , see Fig. 3C. --- Identification with the 'victim'. In the post-session questionnaire, volunteers had to identify to what extent they considered that the other participant could be part of their group and to what extent they identified with the other participant. Both frequentist and Bayesian statistics strongly supported H 0 regarding the relationship between prosocial disobedience and the perception that the other participant could be part of one's own group . The relationship between prosocial disobedience and the identification with the other participant also slightly supported H 0 . Correlations between the behavior of pairs of participants. As we used a role reversal procedure, the behavior of those who were agents first could influence the behavior of those who turned agents afterwards. A Pearson correlation between prosocial disobedience of agents first and prosocial disobedience of victims who turned agents afterwards. The correlation was positive , suggesting participants who were agents second tend to act similarly as those who were agents first. Individual differences associated with prosocial disobedience. Another approach to ensure a reliable prosocial disobedience rate when recruiting volunteers would be to target individuals with a profile that is most frequently associated with disobedient behaviors. Both frequentist and Bayesian statistics for exploratory correlations were two-tailed. Cronbach's α for each subscale is presented in Supplementary Information S2. Both frequentist and Bayesian statistics showed a negative correlation between scores on the Authority subscale and the Purity subscale from the MFQ questionnaire. The lower volunteers scored on authority and purity, the higher was their prosocial disobedience rate. Other correlations were in favor of H 0 or were inconclusive . --- Reasons for obedience. If participants reported that they did not voluntarily disobey the orders of the experimenter, they were asked in an open question to explain their decision to comply with those orders. After reading all the answers, three categories were extracted from the reasons provided: 'For science' reasons; participants reported that they obeyed to allow reliable data acquisition ; 'For respect of authority' reasons; participants reported that they had to follow the orders of the authoritative figure , and 'For lack of side-effects' reasons; participants reported that since the shocks delivered were calibrated on one's own pain threshold, obeying orders to shock was not problematic . An independent, naive judge classified the response of participants in one or several of those three established categories. Analyses of the frequencies revealed that the reason "For Science" was mentioned 31/70 times, the reason "For lack of side-effects" was mentioned 17/70 times and the reason "For respect of authority" was mentioned 31/70 times. --- Discussion The aim of the present paper was to present a novel experimental approach to study obedience to immoral orders, by combining the strength of past experimental work and by adapting it to cognitive and neuroimaging measurements. Although other versions were proposed since Milgram's studies, like a study in an immersive virtual environment 15 or the 150-V method 16 , some methodological concerns remained as those methods still involved cover stories or fake experimental set-ups. Here, the experimental approach was significantly different as it was based on an entirely transparent method that involved the administration of real electric shocks to another individual. This approach has the advantage to solve some of the main ethical and methodological concerns associated with the use of cover stories. It also has the advantage that it be can used both to study how social and situational factors influence disobedience as well as individual factors. For social and situational factors, the proposed paradigm can be adapted to evaluate for instance the influence of a supporting group, the use of high or low monetary rewards or how priming disobedience with a documentary influence disobedience. For individual factors, the paradigm allows to investigate how personality traits influence disobedience or to study the neuro-cognitive processes underlying disobedience. Some novel theories combining a multi-method approach based on social psychology, neuroeconomics and neuroscience could thus emerge to understand better the mechanisms supporting disobedience. For instance, one could evaluate how empathy for the pain of the victim predicts disobedience and how the presence of a supporting group influences our capacity to feel empathy 41 and/or compassion for the 'victim' 42 . It could also be argued that the presence of a supporting group diffuses responsibility between individuals and increases obedience, by influencing how our brain processes agency and responsibility over our actions 28,[43][44][45] . As the results obtained in the present study also indicated that feeling bad for the shocks delivered was statistically associated with prosocial disobedience, one could evaluate how the neural correlates of guilt 46 predicts prosocial disobedience and what historical, cultural and individual factors influence the feeling of guilt. Six variants of the same task were tested in the present study, some inducing a higher prosocial disobedience rate than others. Statistical results showed that providing a reason-or aim-to justify obedience strongly decreased disobedience. Providing a monetary reward, even one as small as €0.05, also strongly decreased disobedience. Variant 2, in which volunteers were not given an aim or monetary reward, showed the highest disobedience rates. However, to study disobedience in ecological way, the paradigm should capture disobedience of participants even if they know that they are losing something . Defying the orders of an authority generally involves social and/or monetary costs in real-life situations. I would thus not recommend using an experimental paradigm in which volunteers have no costs associated with defying the orders of the experimenter, as it would reduce the ecology of the disobedience act. Variants 3 and 6 involve two types of costs for resisting the orders of the experimenter: a monetary loss and deceiving the experimenter. In Variant 3, descriptive statistics showed that prosocial disobedience was lower compared to Variant 6. The main difference between these two variants was the presence of a free-choice condition. In my former studies 23,27 , volunteers frequently justified obedience in the coerced condition because they were given freedom in the free-choice condition In addition, I knew I could chose freely in the other condition not to send shocks-what I did). In the present debriefings, some volunteers also reported that the presence of a free-choice condition was giving them enough freedom to accept to follow the orders in the coerced condition. In the supplementary analyses, results showed that when the monetary reward and the aim for obeying are identical, being given a free-choice condition reduces disobedience in the coerced condition. Therefore, Variant 6 appears to provide a good balance between reaching a reliable disobedience rate and finding volunteers who would refuse to produce physical harm on another human beings despite the monetary or social costs associated with defying orders. Another approach would be to pre-select people who are predicted to be more disobedient. Personality questionnaires indicated that scoring low on the authority and on the purity subscale of the MFQ was strongly associated with a higher prosocial disobedience rate. The link between one's own relationship to authority and prosocial disobedience observed here replicates another study conducted on the first generation of Rwandese after the 1994 genocide 47 . One's own relationship to authority thus appears to be a reliable predictor variable in order to pre-select a sample that is more likely to disobey immoral orders. In the present paper, administering a real mildly painful shock in exchange or not for a small monetary gain was described as an 'immoral' act. The notion of what is moral or not can highly differ between individuals 48 , for both academics and volunteers participating in an experiment. Humans are indeed sensitive to different competing issues of morality, a key reason for rescuing persecuted people 49 . In accordance with this observation, the present results indicated that moral reasons were a critical factor associated with the prosocial disobedience rate: the more shocking partners was considered as immoral, the more volunteers disobeyed. However, considering an action as against one's own moral values does not necessarily translate to a refusal-especially when this order is in line with the Law. An extreme example is soldiers who have perpetrated acts that transgressed their moral beliefs but were issued by their superior in combat 50 . A core question for future research remains: Why are some people capable of putting their own moral standards above the social costs associated with defying orders? Results indicate that the more volunteers felt responsible during the task, and the worse they felt for sending shocks to the 'victim' , the higher was their prosocial disobedience. In another study, we observed that obeying orders reduced the feeling of responsibility, how bad and how sorry volunteers felt compared to being free to decide 26 . One hypothesis is that individuals who have preserved a feeling of responsibility and feeling badeven under command-could more easily defy immoral orders. However, future studies are necessary to better understand the neuro-cognitive processes that prevent an individual from complying with immoral orders. As this paradigm is adapted to neuroimaging measurements, a whole range of studies could now be conducted. It has been previously suggested that a strong identification with the experimenter giving orders is associated with higher obedience 36 . However, in the present paper, correlations between prosocial disobedience and identification with the experimenter were in favor of H0 with both the frequentist and the Bayesian approaches. In a former study, we also observed that identification to the experimenter was not a critical aspect for explain obedience. We observed that the generation of Rwandese born after the genocide and tested in Rwanda reported a higher identification to the experimenter than the same generation of Rwandese but tested in Belgium 47 . However, the latter group had a higher prosocial disobedience rate than the former group. Future studies must thus be conducted to understand how the identification with the person giving orders could influence obedience and its weight compared to other social, cultural and individual variables. Although some volunteers reported that they felt a bit stressed and anxious during the task when they were in the role of the agent, the overwhelming majority did not report any negative psychological feelings. None of the participants withdrew from the experiment and none reported long-term negative psychological effects. Nowadays, it has become difficult to find volunteers who do not know Milgram's studies given the high media coverage, including movies, radio soaps, books, podcast and documentaries. One could expect that knowing Milgram would prevent people to obey. However, for the large majority of volunteers, it appears that this is not the case. In previous studies that I conducted with a relatively similar paradigm, the disobedience rate was drastically low even if participants were university students knowing Milgram's studies. In the present study, almost all the volunteers who participated in the present study knew Milgram and explicitly mentioned him during the oral debriefings or before starting the experiment. Yet for those who disobeyed, almost none reported that the reason for disobedience was that they thought it was the aim of the experiment. Further, there was no statistical relationship between prosocial disobedience and believing that it was the aim of the study. It does not mean that knowing Milgram would not influence at all disobedience. It rather suggests that knowing Milgram is not the main factor influencing one's decision to obey or not an experimenter. It is also possible that since in this experiment shocks were real and not fake such as in Milgram's studies, participants considered that this was indeed not a study aiming to replicate Milgram. As far as I have observed, the main problem associated with knowing Milgram's studies is that volunteers believe that I also have hidden aims and procedures when they enter the experimental room. Several volunteers reported that they only realized that my explanations for the task were true when they were explicitly offered the choice to decide which role to play first and/or when they started receiving the shocks. This is a general concern in psychological studies: The high use of cover stories can also impact other research, as volunteers start to develop a mistrust in what researchers tell them. Results indicated that who were agents second tend to act similarly as those who were agents first, by sending a relatively similar amount of shocks. Of note, this is an effect that we also observed in past studies on the effect of obeying orders on cognition 23,26,43 . Nonetheless, in none of those studies we observed that the order of the role had a statistical influence on the neuro-cognitive processes targeted. However, the influence on role reversal on disobedience and related neuro-cognitive processes has still to be investigated in future studies. The present paradigm is ecological in the sense that volunteers are facing decisions that have a real, physical impact on another human being. However, at the moment I only have little evidences that this paradigm has ecological validity to reflect obedience in real life situations, especially regarding "destructive disobedience" 17 . Caution is indicated when making inference from laboratory studies to complex social behaviours, such as those observed during genocides 16 . My main evidence at the moment is that the very low rate of prosocial disobedience observed in the first generation of post-genocide Rwandans tested in Rwanda using this paradigm 47 is consistent with the fact that deference to authority had already been emphasized by academics as an important factor in the 1994 genocide 4,51 . Individual scores on deference to authority in Caspar et al. 47 was the best predictive factor for prosocial disobedience in that former paradigm, thus suggesting some ecological validity. A promising approach would be to recruit "Righteous Among the Nations", individuals who really saved lives during genocides. Testing this population with the present paradigm would put the ecological validity of this paradigm to the test. People's ability to question and resist immoral orders is a fundamental aspect of individual autonomy and of successful societies. As Howard Zinn famously wrote: "Historically, the most terrible things-war, genocide, and slavery-have resulted not from disobedience, but from obedience". Understanding how individuals differ in the extent to which they comply with orders has undeniably several societal implications. They range from understanding how evolving in highly hierarchical environments-such as the military or prisons-influences moral behaviours, to developing interventions that would help to prevent blind obedience and help to resist calls to violence in vulnerable societies. However, since Milgram's studies, the topic of disobedience has been mostly studied by social psychologists using adapted versions of the initial paradigm developed by Milgram. I hope that with this novel approach, obedience research will be given a new boost and will be considered by other scientific disciplines seeking to understand better human behaviours. --- Data availability Data are made available on OSF . Received: 21 April 2021; Accepted: 15 November 2021 --- --- Competing interests The author declares no competing interests.

Milgram, the main objective of the present paper is to offer a paradigm that complies with up-to-date ethical standards and that can be adapted to various scientific disciplines, ranging from sociology and (social) psychology to neuroscience. Inspired by subsequent versions of Milgram-like paradigms and by combining the strengths of each, this paper presents a novel experimental approach to the study of (dis)obedience to authority. Volunteers are recruited in pairs and take turns to be 'agents' or 'victims', making the procedure fully reciprocal. For each trial, the agents receive an order from the experimenter to send a real, mildly painful electric shock to the 'victim', thus placing participants in an ecological set-up and avoiding the use of cover stories. Depending on the experimental condition, 'agents' receive, or do not receive, a monetary gain and are given, or are not given, an aim to obey the experimenter's orders. Disobedience here refers to the number of times 'agents' refused to deliver the real shock to the 'victim'. As the paradigm is designed to fit with brain imaging methods, I hope to bring new insights and perspectives in this area of research. The experiment of Stanley Milgram is one of the most (in)famous in psychology 1 , within and beyond academia. Several variables account for this notoriety, such as the method used, the ethical issues associated, the enthralling results or the societal impact of the research topic. Milgram's classical studies famously suggested a widespread willingness to obey authority, to the point of inflicting irreversible harm to another person just met a few minutes before. Beyond the studies of Milgram, the history of nations is also plagued by horrendous acts of obedience that have caused wars and the loss of countless lives 2 . History has fortunately shown that some individuals do resist the social constraint of receiving orders when their own morality is of greater importance than the social costs associated with defying orders (e.g., 3,4 ). To understand the factors that prevent an individual from complying with immoral orders, research on disobedience should focus on two main axes: (1) what social and situational factors support disobedience and ( 2) what individual differences support disobedience. The first axe has already been largely investigated in past studies. From Milgram's studies, important situational factors supporting disobedience have already been established 5 . For instance, disobedience increases if the experimenter is not physically present in the room or if two experimenters provide opposing views regarding the morality of the experiment. Subsequent versions and interpretations of Milgram's studies 6-8 as well as historical research 4,9 also suggested the importance of several social (e.g. presence of a supporting group) and situational factors (e.g. family history, proximity with the 'victim' , intensity of the pain; money) supporting resistance to immoral orders. However, the second axe regarding individual differences has been less systematically approached. A few studies 10,11 previously explored personality traits that may influence disobedience (e.g. empathic concern, risk-taking) but most of these studies, however, have used relatively weak and potentially biased methods, such as self-reported questionnaires and methods based on cover stories. These studies are not sufficient to explain why, in a given situation, some people will refuse immoral orders and rescue threatened human beings while others will comply with such orders. With the current literature on disobedience, we have no idea about which neuro-cognitive processes drive inter-individual differences regarding the degree of disobedience. This aim could be achieved by offering a novel experimental approach that would make it possible to use novel techniques that give us a more direct access to the functioning of the brain and cognition, such as functional near-infrared spectroscopy (fNIRS), electroencephalography or Magnetic Resonance Imagery (MRI). Regrettably, the original paradigm and those bearing close similarity are not adapted to reliably answer those questions as they were not designed to fit with neuroimaging measurements. By combining the strengths of previous work on disobedience into a single experimental paradigm and adapting it to fit with cognitive and brain imaging measurements, this novel experimental approach could help to better understand, together with

INTRODUCTION Marital adjustment is a term used to describe the level of satisfaction and happiness couples experience in their marriage. It encompasses measures such as communication, trust, intimacy and understanding between spouses. Marital adjustment also includes how well two people can accept each other's differences, compromise in disagreements, express feelings openly without causing tension or anger, and generally enjoy being together. Marriage counseling can help couples improve their marital adjustment if they are struggling with any aspects of it. Marital adjustment is the process of creating a healthy dynamic between two married individuals in order to create and maintain a long-term, fulfilling relationship . It involves establishing clear communication, sharing goals for the marriage, problem solving skills, respect towards one another and compromise as needed. Marital adjustment also encompasses considering potential changes such as parenting or career shifts that may affect your partner's well-being which requires open dialogue about future plans and expectations within the marriage. Family income is the total amount of money earned by a family, including income from wages, investments and other sources. It is usually calculated yearly or monthly, and it can help to determine a family's economic position within society. Family incomes affect many aspects of people's lives such as access to health care, education level achieved and lifestyle choices. Family income is the total amount of money earned by a family unit in a given period. It includes wages, salaries, tips, alimony payments and other supplementary sources of income received during the year like interest or dividends. Family income can be broken down into either pre-tax or post-tax categories depending on which financial perspective an individual seeks to measure from . Generally speaking, family income indicates how much disposable income a household has available for spending on day-to-day living expenses and savings. Edagobo found that family income and marital adjustment are linked for married persons. This is because economic resources can influence the processes of decision making, communication, problem solving, goal setting and conflict resolution in relationships. Low family incomes can be a source of stress along with feelings of powerlessness which may lead to conflicts among partners . Financial difficulties often have an impact on couples' ability to manage their affairs like childcare arrangement, daily management tasks as well as leisure activities due to lack of coping resources or budget constraint. Furthermore, financial strain tends to increase marital dissatisfaction; studies show that individuals in low-income families report less relationship satisfaction than those from high-income households . On the other hand, positive effects associated with good economic standing tend include better quality couple interaction which allows deeper understanding between spouses through meaningful conversation thereby strengthening mutual trust and commitment over time. The relationship between family income and marital adjustment is complex and has been the subject of numerous studies. Generally, it seems that most married couples who are able to maintain a healthy level of financial security are better adjusted than those in more unstable situations . Additionally, research suggests that greater levels of income tend to be associated with higher degrees of marital satisfaction for both partners. Moreover, it appears that certain changes in incomes can affect marriage dynamics; spouses may experience either tension or relief depending on differences between actual and expected economic outcomes. When one spouse earns significantly more than another , feelings of resentment or inadequacy might arise from both parties if these discrepancies were unanticipated or unwelcomed by either party before committing to marriage/cohabitation. Lastly, it should be noted that decreasing levels of sharing money within relationships have also correlated with overall weakening associations among marriage quality measures like commitment and intimacy, which lead low-income families down an even further spiral towards potential divorce rates over time if no effective interventions take place soon enough. Educational status refers to an individual's level of education and qualifications. This includes the number of years that they have spent in school or college, as well as any certificates or degrees they may hold. Educational status can be used to analyze a person's socio-economic standing, employment prospects, access to healthcare and other such factors. It is also often used by employers when considering applicants for certain positions . Educational status is an individual's level of educational attainment, which is usually defined by the highest degree they have achieved. It can refer to either formal qualification or informal credentials and experiences . Educational status can also be used to describe one's academic standing in comparison with others and within a particular context; individuals may have Education Status Acknowledgement certificates such as GED or honorary degrees in certain countries. Furthermore, some people use their educational status when putting together resumes that showcase their competencies and experience for potential employers. The standing of schooling in life cannot be undervalued. Along these lines, it is better adjusted to the real factors of life, for instance in conjugal connections . Ofeogbu and Popoola detailed in Ebenuwa-Okoh that instructive accomplishments are signs of marital adjustment. This is on the grounds that it further develops people in all 12 parts of their lives, including wedded life. From the abovementioned, it tends to be presumed that the degree of schooling of hitched individuals is probably going to guarantee better and more steady conjugal connections and everyday life, since wedded individuals are more ready to manage conjugal issues. Education can be important and can assist with settling on the ideal choices for conjugal strength. The instructive viewpoint here means what is happening where a functioning lady has gotten an advanced education capability, ideally a college degree, from a public or confidential instructive establishment. Jamabo and Ordu revealed that instructive degrees further develop working ladies' relational abilities, empowering them to resolve their concerns and further develop their reasoning abilities and capacity to track down consistent answers for clashes. Moreover, schooling can assist wedded individuals with beginning families and track down ways of making a family size they can handle. Nwatu expressed that wedded working ladies with higher instructive capabilities will encounter less conjugal pressure since, supposing that they are composed, the pressure will be minimal. The tracking down diverges from a few examinations on instructive fulfillment and conjugal synchronization , which observed that ladies with lower instructive achievement are balanced contrasted with ladies with higher instructive fulfillment. Along these lines, Nwatu announced that those with poor marital adjustment were members with lower instructive fulfillment. nwatu likewise uncovered that ladies with an elevated degree of instruction have better connections with their spouses. This depends on the information that individuals gain through schooling on the best way to take care of family issues and how to manage their life partners. While conjugal emergencies are more uncommon among profoundly taught ladies, low instructed ladies give more indications of conjugal emergency because of an absence of powerful synchronization. --- Statement of the Problem Marriage, as a social institution, is influenced by various factors that contribute to the overall well-being of individuals and families. In Delta State, Nigeria, the dynamics of family life are shaped by cultural, economic, and educational factors. One critical aspect of marital dynamics is the interplay between family income and marital adjustment. Marital adjustment, encompassing dimensions such as communication, satisfaction, and conflict resolution, is pivotal for the stability and happiness of married individuals. While previous research has explored the relationship between family income and marital adjustment, the moderating role of educational status remains underexplored, particularly in the context of Delta State. Educational attainment is a multifaceted variable that potentially influences how individuals navigate and respond to economic challenges within the marital context. There is a gap in understanding how educational status moderates the impact of family income on marital adjustment among married persons in Delta State. Hence, the problem of this study is: " What is the moderating impact of educational status on the relationship between family income and marital adjustment among married persons in Delta State? --- Research Question What is the moderating impact of educational status on the relationship between family income and marital adjustment among married persons in Delta State? --- Hypothesis There is no significant moderating impact of educational status on the relationship between family income and marital adjustment among married persons in Delta State. --- Research Method --- Design of the Study This study used the correlational survey correlational survey was used in this study to investigate the moderating impact of educational status on family income and marital adjustment of married persons in Delta State. --- Population of the Study The population of this study consisted of 3,716 married persons in Delta State with special attention to married persons who have spent at least ten years together in the Catholic faith in Delta states. This population was used dues to the difficulty of determining the exact number of people married in the state due to the lack of effective data generation and storage by the various government agencies entrusted with this responsibility and most marriages are not registered by the state., communities and religious organizations. Thus official statistics of the churches in the Warri dioceses of the state that has been married for at least ten years are means three thousand seven hundred sixteen from Warri . However, the institution of marriage is a universal institution, run by men of the same orientation around the world. Therefore, the result of this study can be easily generalized since the differences are vanishingly small. The participants in this study include all married people from all socioeconomic classes, from Catholic-Christian religious backgrounds, from different cultures in the states of Delta, and from different family types. These individuals were identified in Catholic-Christian religious centers . The reason for using the Catholic-Christian denomination is that it is the oldest Christian denomination, giving rise to other Protestant and Pentecostal denominations. --- Sample and Sampling Technique The sample size of the study consists of six hundred and nine participants from seven churches in Warri diocese. Multi-level random sampling was used to select the sample. In the first stage, 7 out of the 12 churches in Warri Diocese were selected using systematic random sampling technique. In the second stage, 87 were drawn using simple random sampling technique from each church in the Warri Diocese making a total of 609 participants selected for the study. --- Research Instrument The research instrument used for this study is a 4-item questionnaire called the Family Income and Marital Adjustment Scale . This questionnaire is divided into two parts. Part A asks respondents to provide their demographic information, while Part B contains two subscales, namely: Family Income Scale and Marital Adjustment Scale. Each subscale consists of 10 items making it a total of 20 items in the entire questionnaire. In the scales the respondents were asked to indicate their response in four-point scale of "Strongly agree" , "Agree" , "Disagree" and items in the income scale were developed by the researcher and the ones in the Marital Adjustment Scale were adapted from Lock and Wallace . While adapting the items the original instrument was changed from a 10-point scale to a 4-point for timely completion by the respondents. --- Validity of the Instrument To determine the face validity of the instrument, the original design of the research instrument underwent review by the researcher's two supervisors and two other testing experts from the Department of Counseling and Counseling at Delta State University Abraka for criticism and corrections before the final version was created. They examined the instrument and made any necessary corrections to reflect married people's views on family income as indicators of marital adjustment. To assess the content and construct validity of the instrument, factor analysis and principal components analysis using the extraction method were used. Total variance was determined by expressing the estimate of each subscale's content validity as shown in As shown in the table 3.1 above, each subscale demonstrates good content validity of all the items. The total percentages of all items in the subscales has 84.76% for income and 73.73% for marital adjustment. This shows good content validity properties of the instrument which reveals that the instrument has good content validity. Whereas the construct validity of the instrument was estimated by using the rotated loading matrixes. The eigen values above one was used to select factors that genuinely measure similar constructs. The items in the instrument that measure family income had 0.52 and 0.98 and marital adjustment had 0.68 and 0.94. These values indicate good construct validity of the instrument. --- Reliability of the Instrument The reliability of the instrument was established using Cronbach Alpha Statistics for estimating the internal consistency. The instrument was administered to fifty respondents in Rivers State who were not part of the study Area. From the analysis of data collected, it yielded reliability index of 0.95 for family income and 0.84 for marital adjustment. --- Method of Data Collection The research instrument was administered by the researcher and two trained research assistants to the participants who were made up of married persons from the Catholic religious' affiliation, cultural affiliation and family background in the sampled area. Before administration, adequate explanation was given to the participants and were equally encouraged to respond sincerely and objectively to the questionnaire as their responses were kept in utmost confidentiality. This is necessary to ensure that the participants do not distort the information they give as this may affect the generalization of results of the study. All the copies of the questionnaires were retrieved same day after completion. --- Method of Data Analysis in analyzing data collected for this study, partial Coefficient was used to answer the research questions, while Regression in macro process was used to test hypotheses at 0.05 level of significance. --- Result and Discussion Research Question What is the moderating impact of educational status on the relationship between family income and marital adjustment among married persons in Delta State? Table 2 showed a partial correlation which determined the moderating impact of educational status on the relationship between family income and marital adjustment among married persons in Delta State. The partial correlation coefficient between family income and marital adjustment whilst controlling for educational status was .866 Zero-order correlations equally showed that there was a moderate, positive correlation between a family income and marital adjustment r = .864. This indicated that there is a moderating impact of educational status on the relationship between family income and marital adjustment among married persons in Delta State. --- Hypothesis There is no significant moderating impact of educational status on the relationship between family income and marital adjustment among married persons in Delta State. --- Discussion of Result The findings of this study indicates that there exists a significant moderating impact of educational status on the relationship between family income and marital adjustment among married persons in Delta State. This suggests that education plays a significant role in shaping the dynamics of marital satisfaction and financial stability within a family. One possible explanation for this moderating effect is that education can provide individuals with the necessary tools and knowledge to improve their financial well-being. Individuals with higher levels of education often tend to have better job prospects, higher incomes, and a greater ability to manage their finances effectively. As a result, they may be better equipped to handle financial challenges and maintain a stable marital relationship. This finding align with Hsu and Barrett, who found that education has a positive association with various aspects of marital well-being, including communication, problem-solving, and conflict resolution. The findings of this study is in line with Ojukwu et al who showed that individuals with higher levels of education not only enjoy a higher income but also report higher levels of marital adjustment. This finding is also consistent with Zhang and Liang, who found that individuals' educational attainment influences not only their economic wellbeing but also the quality of their marriages. This finding whoever inconsistent with Slathia, who showed that he educational attainment of women does not affect their marital adjustment. --- Conclusion In conclusion, this study has provided valuable insights into the moderating impact of educational status on the income and marital adjustment of married individuals in Delta State. The findings highlight the importance of education in shaping the marital and financial well-being of individuals. --- Recommendations The following recommendations were made Based on this finding of this study: 1. Couples with significant educational disparities seek couples counseling or marriage education programs to bridge the gap and enhance their communication skills. These interventions can help couples navigate financial challenges and develop strategies to improve their relationship. 2. Marriage Counselors should recognize that couples with varying educational statuses may face different challenges in adjusting to differing family income levels. 3. Employers should Implement workplace programmes that support employees' education, as higher educational attainment may positively influence marital adjustment. 4. Offer financial wellness programs to help employees manage their finances and reduce potential stressors related to income.

The purpose of this study was to examined the moderating impact of educational status on family income and marital adjustment of married persons in Delta State. This study used the correlational design to investigate the moderating impact of educational status on family income and marital adjustment of married persons in Delta State. The population of this study consisted of 3,716 married persons in Delta State with special attention to married persons who have spent at least ten (10) years together in the Catholic faith in Delta states. The sample size of the study consists of six hundred and nine (609) participants from seven churches in Warri diocese. Multi-level random sampling was used to select the sample. The research instrument used for this study is a 4-item questionnaire called the Family Income and Marital Adjustment Scale (FIMAS). To determine the face validity of the instrument, the original design of the research instrument underwent review by the researcher's two supervisors and two (2) other testing experts from the Department of Counseling and Counseling at Delta State University. The reliability of the instrument was established using Cronbach Alpha Statistics for estimating the internal consistency. it yielded reliability index (r) of 0.95 for family income and 0.84 for marital adjustment. In analyzing data collected for this study, partial Coefficient was used to answer the research questions, while Regression in macro process was used to test hypotheses at 0.05 level of significance. The findings of this study indicates that there exists a significant moderating impact of educational status on the relationship between family income and marital adjustment among married persons in Delta State. Based on the finding of the study it was recommended that Couples with significant educational disparities seek couples counseling or marriage education programs to bridge the gap and enhance their communication skills. These interventions can help couples navigate financial challenges and develop strategies to improve their relationship.

Introduction --- Background The central European country of Switzerland is constantly ranked amongst the highest of the world's wealthiest countries with residents enjoying a high quality of life [1]. In such contexts, women expect safe and healthy birth outcomes for themselves and their babies [2]. Although there is a large number of places in which women can give birth, the healthcare system is generally highly medicalised and models of midwifery led care and continuity of care are rare [3]. Similarly, the caesarean section rate has steadily climbed in recent years, from 22.7% in 1998 to 32.0% in 2019 [4]. Recently a study on 18 EU countries showed that the Swiss rates of caesarean section before the onset of labour at after 37 weeks' gestation were among the highest [5,6]. Switzerland is not alone in this respect and the constantly increasing rate of caesarean sections in many industrialised countries is a hotly debated topic, in both public and professional fora. This is especially stressed as the World Health Organization has consistently advocated for caesarean section rates to lie between 10 and 15% [7,8]. This was confirmed in a systematic review and in an ecological analysis, suggested that there are no justifications for caesarean section rates above 15% in developed countries [9]. The specialist medical literature generally agrees that the rising caesarean section rate is due to medical indications. The most common medical indications for this medical intervention include suspected foetal compromise, foetal malpresentation, previous uterine surgery, multiple gestation, or slow progress [10,11]. However, there is increasing evidence that the negative health consequences of caesarean section without a clear medical indication are underestimated, and that the higher rates do not improve maternal and neonatal mortality and morbidity rates [12]. Indeed a recent systematic review shows the reverse to be true [13] This dispels a widespread theory that the rise in caesarean sections can be attributed to an altered maternal risk profile. The large regional differences in caesarean section rates ranging from 19.4% to 40% between Swiss cantons calls for further questions [6]. Moreover, even in countries with high caesarean section rates, the majority of pregnant women prefer a vaginal birth and do not expect a caesarean section, unless there is a medical or obstetric need [14]. However, some women feel ambivalent at some point during their pregnancy, and those who have had a previous caesarean section elect to have a repeat one in their subsequent birth [15]. It remains unclear if research findings around short and long-term health consequences for mothers and babies born by caesarean sections, are made available to women in Switzerland, to assist them in making informed decisions about mode of birth. Until now, women's views have mainly been expressed in the media, with a focus on women's rights to autonomy in opting for a caesarean section. However, a few pregnant women, despite a more complex pregnancy, choose a birth setting that does not align with medical advice, notably as a result of a disagreement with their health care professional when planning the birth of their baby [16]. The topic has also become the frequent subject of discussions, concerning its necessity, accompanying costs and long-term effects on women's and children's health in Switzerland. Political interventions on the topic are taking place both at national and regional levels. Since the parliamentary discussion in 2013, mode of birth in Switzerland is a controversial topic amongst parliamentarians, and yet only minor political actions on regional levels were undertaken [17]. Despite the prevalent belief that many women choose to give birth by caesarean section, the limited research findings show evidence that only a very small number of women have this expectation. An explanation for this myth suggests the artificial maintenance of scientific controversy to justify the status quo of caesarean section practice, resulting in women's autonomous decision-making being impaired [18,19]. Despite a growing body of research in this area, reflecting the importance of the topic, the number of high quality studies examining mode of birth in contexts in which women appear to have more of a choice, remains limited [20,21]. Prior to becoming pregnant, women who have developed an interest and knowledge around pregnancy and birth, and who do not fear birth, tend to expect to have a vaginal birth, whilst others would prefer a caesarean section [22]. Moreover, in countries with high caesarean section rates, the majority of studies agree that birth technologies make birth easier and women should have a right to choose a non-medically indicated caesarean [23]. Sumbul et al. 2020, through a review of the literature, demonstrate that most published studies show cross sectional pictures of women's expectations using predetermined questions [24]. Women's expectations of birth and how their life experiences influence them are particularly relevant issues for the present study. A study undertaken in Switzerland is of high relevance [25]. Although recruitment only took place after birth, the researchers investigated how 251 participants' views of their birth experiences changed in the first two years of their child's life. The study also sought to identify any particular groups of women at risk of developing a long-term negative memory of their birth experience. Women's birth experiences were collected and appraised within 48 to 96 hours postpartum, at three weeks and then in the second year after giving birth. The authors concluded that women at risk of developing a negative long-term memory of their birth experiences can be identified in the early postnatal period, when the overall birth experience and the perceived relationship to their intrapartum experience are considered. This study provides useful insights, but the varying parity of the participants and the lack of focus on their expectations leave some unanswered questions as to its validity. Overall there appears to be a lack of clarity as to why and when the decision is made to undertake a caesarean section and which factors influence this process [26]. This, in turn, prompts the questions as to what expectations pregnant women have of their birth, how women make the decision for a particular mode birth, and how women recollect their experience of giving birth in relation to their decision making processes [27][28][29]. This study therefore focuses on healthy women becoming first time mothers, and their expectations and subsequent experiences of giving birth to provide a baseline understanding. --- Methodology --- Qualitative approach and theoretical framework This study seeks to generate an understanding in women's journey to choosing a mode of birth and subsequently, how they experienced the birth of their baby. The hermeneutic of Gadamer is well suited for this study [30]. This philosophy aims to generate an in-depth understanding rather than simply describing an experience, and to draw out new knowledge from the participants. From Gadamer's philosophy, a specific five stage approach was adopted [31]. Table 1 present these stages and the fact that are not necessarily consecutive, but involve an engagement with the hermeneutic circle, going backwards and forwards between its whole and parts. Fig 1 shows the reflexive path we took. Throughout this study, the research group members were aware of their own pre-understandings, gained through their own professional and personal experiences, and encounters [30]. These pre-understandings were recorded in the form of reflexive dialogues between team members and analysed alongside the acquired data. It was also acknowledged that these may change during the course of this study as shown in this statement, which emerged from a team discussion: "Well, midwives will have a different starting point from others such as me. We need to take all that into consideration when we do our analysis so that we are not letting professional biases interfere with our analysis" --- Research questions To build the model, we sought to answer the following questions • What are healthy primigravid women's expectations in early pregnancy about giving birth? • How do these expectations change during pregnancy? • What factors influence these expectations? • What were the women's birthing experiences? • How did the birthing experience match the antenatal expectations? --- Methods --- Setting and sampling strategy Though a relatively small country, Switzerland comprises a heterogenous population. The country consists of a confederation of 26 cantons, and each canton has its own culture and customs. German is spoken in the northern and eastern cantons, French in the western cantons, and Italian in the southern canton of Ticino. To reflect the geographical distribution of the country and the national birth statistics, we sampled 30 women from the German speaking, 14 from the French speaking and 14 from the Italian speaking cantons. We adopted a purposive sampling method, Table 2, appropriate for a hermeneutic study [32]. Our choice resonated with Gadamer's notion of cultural inclusiveness and maximising understanding of all elements of the data. It also took into account a minimum size required for generating data for each Swiss language [33]. Our sample was obtained from healthy primigravidae over the age of 18 with straightforward pregnancies. We recruited from settings which covered the full range of birth options from home birth to a university hospital, resulting in a wide range of potential participants, Table 2. Because of the chosen philosophical paradigm, the participants had to be fluent in their canton's official language . The 75 recruited women provided written consent in their chosen language. --- Data collection We chose qualitative interviews as the most appropriate method for data collection. The interviewers were experienced, female researchers. Three were midwives, one a psychologist and one a sociologist. All were fluent speakers in the language in which they collected the data and in English. Participants were interviewed by the same allocated interviewer throughout the study. We invited the 75 consenting women to participate in four guided interviews lasting approximately one hour at 20-24 weeks and 35-37 weeks antenatally, and six weeks and six months postnatally. Each interview began with the question "What are your expectations of birth?" or "How was your birth in relation to your earlier expectations?". Our longitudinal approach reflects the recommendations from reviews of both Gamble & Creedy [34] and McCourt et al. [35]. We collected data by semi-structured interviews at a place of each participant's choice. Interviews lasted between 45 and 75 minutes, were audio-recorded, transcribed verbatim and an initial thematic analysis was carried out before raising the themes to the next hermeneutic stage. During transcription all identifying details were removed and participants were given pseudonyms. MaxQDA © was used for data management and analysis. Transcripts were first entered in the interview's original language, before generating initial codes. Each researcher wrote memos in English pertaining to significant codes and to the interview in its entirety. --- Analysis An initial thematic analysis of the data was undertaken following Braun and Clarke's proposed method [36]. In hermeneutic studies, this method allows to identify themes, in order to then draw out understandings of lived human experiences [37]. In addition, thematic analysis is a useful method to analyse large datasets. The interview memos formed the first point of discussion among the team as to commonalities and differences among participants within the same canton. The senior researchers on each site then compared the themes generated in each canton before undertaking an in-depth hermeneutic analysis, allowing for the understandings from combined themes from each language region to emerge. These were discussed by the complete team, whose members generated an initial model, which was revised on several occasions as the analysis deepened. The completed analysis permitted the identification of the key themes, illustrated using the translations of participants' own words. The themes and their longitudinal evolution in the antenatal and postnatal periods will form the elaborated model of "birth expectation to birth experience". --- Ethical considerations The main ethical issues were informed consent, autonomy, confidentiality and anonymity. Primary permission to undertake the study was given by the Ethics Commission for Zu ¨rich . Secondary permission was granted by the ethics commissions of each of the other three cantons: Vaud, St Gallen and Ticino. --- Findings Four main themes emerged from this longitudinal hermeneutic study: Decisions, Care, Emotions, and Influences. Each theme evolved from one interview to the next. At various stages of the pregnancy, the themes were either present, strongly present, or absent. Some merged with other themes, as detailed below in Fig 2. --- Decisions In the first interviews, around 22 weeks antenatally , women were experiencing a feeling of "being in limbo". At this particular stage of their pregnancy, women began to realise the enormity of the change that their pregnancy and arrival of their baby would bring to their lives: For some women, this feeling led to a sense of denial: During the first three months, I really. . .I forced myself not to build up any emotional relationship with this "egg". I called him "egg" at the beginning because I was really scared of having a miscarriage. [Scarlet; 22 weeks AN]. Others were more proactive and questioned their feelings: I have started asking a lot of questions just about whatever I am feeling. . ...so far I have not really changed my mind but it's true that I have a lot of questions. [Emilia; 22 weeks AN] By the time of the second interview, around 36 weeks, there was more of a sense of purpose, which we identified as "negotiating the maze". As Nora, who was seeking an elective caesarean for breech presentation, notes: I'm more serene and less anxious thinking that it will be a caesarean, with a scheduled date. It's more reassuring for me, [. . .] I do not trust myself to give birth vaginally. [Nora; 36 weeks AN] This theme was not present in the third interviews around 6 weeks postpartum but in the final interviews at 6 months after birth. After 6 months, women start focusing on the next pregnancy and "getting it right the next time". Lisa articulated: I think the next pregnancy will not be as intense. [. . .]. I will not be able to absorb myself in a second pregnancy, with another child around. [Lisa; 6 months PN] --- Care Care was strongly expressed during the two antenatal interviews, but not in the postnatal interviews. The first interviews showed a range of views that were categorised as "planning". At 22 weeks, women and their families start to think about the location in which they want to give birth. Birthplace locations include university hospitals, regional hospitals, birth centres and the woman's home. This is well illustrated by Katja, describing her thought process about choosing her place of birth: We chose this birthplace by not looking at too many hospitals and birthing centres and I do not know what the other various possibilities are. You simply say "ok, this is coincidentally close by, and you go for it. . . or that the birth centre is actually the place you want to go and that you trust it. [Katja; 22 weeks AN] Participants, planning to give birth at home or in birth centres, often reported receiving negative comments about these settings. Lana, who wished to give birth in a birth centre, recounts her conversation with her obstetrician: She told me that I would die in a birth centre. She told me "you'll have a haemorrhage and then you have to act fast. . . ." I tried to laugh about it because I knew it was just her being stupid, trying to justify her job in the sense that she wants me to give birth in her hospital because she makes money out of it. Anyway, it's her job and she believes in her job but still, she managed to scare me. [Lana; 22 weeks AN] By the time of the second interviews this theme had fragmented itself into three distinct pathways. The first pathway merges with the Decisions theme "Negotiating the maze" which is outlined above. The second thread shows how either the initial choice is consolidated, or in some cases, participants were "Reacting to the unexpected". Bea, for example, disagreed with the idea of putting herself in the hands of others but nonetheless accepted that complications may occur: I find that if you go with the idea of having a natural birth. . . if you have it in your head. I find a little unfortunate that maybe at the last minute they suggest a caesarean. On one hand I tell myself if it is the only solution because there is a risk for me or the baby at that moment I think I'll feel bad for a while. . .. especially after 16 or 24 hours of labour, I think I'll feel bad for a while. But on the other hand, as long as it's fine and it turns out well, the little bit of disappointment then passes. [Bea; 36 weeks AN] This theme forks out and joins Influences at the "Mobilising resources" point, when women reach out to friends and family for support around the time of birth and early postpartum. Finally, this theme reappears and joins Decisions at the 6 months interview, when women talk about "Getting it right next time" by mentioning the type of care they would like for the next birth, as illustrated in Fig 2. --- Emotions The theme of Emotions was noted during the first, third and fourth interviews but not during the second interviews. The first interviews revealed a "continuum of emotions", which reflected the intense expectations the participants had of their forthcoming birth. This means, women are reporting emotions that they had already felt prior to their pregnancy, and which they are expecting to experience until birth or beyond. For some, the main emotion was fear: Fear of birth is already there, well fear of the pain. [Ronja; 22 weeks AN]. The fear of having to cope with a frightening experience can make women think about possible approaches to birth. . . . so anyway, I understand one want to find an equilibrium. . . to have a birth that's as serene as possible, even if, in my opinion, it's going to be a battle field. . . especially the first time, when you don't know what to expect, so no matter how you represent it, how you imagine, no matter what you read or people tell you, it will be 10,000 times worse, 10,000 times different or 10,000 better than anything you can ever imagine or read. . . But it will be a battlefield. [Julia; 22 weeks AN] Other representations of childbirth were more balanced. They relied on the participants' faith that childbirth is a natural process, traditionally achieved vaginally. These women tended to feel confident in their own capacity to give birth and cope with pain. From my point of view, we are made for this, women, therefore, I do not see why there could be a problem or anything else. So, it's true, I am quite laid-back about that. [Lucie; 22 weeks AN] Though absent during the second interviews at 36 weeks, Emotions was extremely strong during the third interviews, at 6 weeks postpartum. Emotions, rather than following a wellordered continuum, were "polarised" ranging from strong frustrations to intense happiness. . . .Luckily, she is cool anyway, because since the childbirth. . .. Well, I'm telling you about childbirth, I am well now. . . but I debriefed it, I debriefed it with Nathalie the second midwife, I was in tears, I wasn't well. . . I was not well, not well, I debriefed again with my gynaecologist, I spoke about it again with the hospital, it is clear that I never want to set foot there again. . .. [Leanne, 6 weeks PN] In the final interviews Emotions were less to the fore but participants "Held on to powerful emotions". For Lisa this was a sense of disappointment: It was a deep wish that I give birth naturally. A primal wish somehow. And then the disappointment that I did not make it. [Lisa; 6 months PN] For most others, however, it was more positive. Olivia sums it up: Simply magical, really how this child grows in your body and then somehow magically comes out and you just do not know how it was possible to be inside. And then after four months we started with baby pure ´es but until then, I looked at him and thought 'Everything that he is, his existence somehow is because it went through my body'. And it is wondrous. Also, for my husband. And also, for a couple, to see that something like this is even possible. A gift really. [Olivia; 6 months PN] --- Influences Women are influenced by internal and external factors. At the first interviews, this theme was labelled "Internal and external influences". Internal influences come from within and how women perceive and plan their journey to birth. Mina's main influences are internal in nature although she stressed the need for cooperation: I like to be informed if I can. It calms me down. I have more control of the situation if I already know what is going to happen. Then, I can get more details as time goes on, but I would already have more or less of an idea of how things are progressing. This makes me feel calmer. I'm not wondering now how badly I'm going to do. I say to myself that I know these are the possibilities for the meantime, and then we will see. --- [Mina; 22 weeks AN] Birth is a widely discussed topic, and society highly influences women and families. In Audrey's case, a wider world view was adopted. She spoke about society's influence on birth and her reaction to it: I have the impression that this is what society sometimes makes us believe that it is possible when it is not. . .. . . and I think it has an influence on what people say when we hear women saying " anyway I do not want to give birth. I would like to be able to fall asleep completely and wake up when the baby is there" or things like that and I say to myself this is not how life and people in general work. [Audrey; 22 weeks AN] Some women's journeys to their expected mode of birth can also be influenced by their growing baby. Leanne, who was particularly anxious about birth during the first interview, at 36 weeks articulated that her views have radically changed. She explained how her baby was the biggest influence: So childbirth is going to be easy with this state of mind. I find it a remarkable evolution since the last time. . . yes it's thanks to the baby because I felt it, because I saw its development and because it said to me: "I'm here. . . I'm a person and you managed to create me, now it's going to be okay, you'll see, I can do everything, I've already turned head down". [Leanne; 36 weeks AN] "Internal and external influences," showed a continuous progression to the second interviews, around 36 weeks, when participants became more active in their birth preparations. As the birth approaches, women start planning and organising helping hands or other forms of support from friends or family members. At this time, Influences is referred to as "Mobilising resources". During her second interview, Isabelle spoke of how she "mobilised resources": I've got a very good relationship with my husband's family. They're really interested, and we telephone one another a lot. They also help me and I think after the birth they'll be really helpful. [Isabelle; 36 weeks AN] Freya, however, worried about how she could be proactive. I worry about when I have to go into hospital because my partner might not be here because he's abroad. I do worry about what my role is, how I should prepare myself or is it all right. Will I have enough support from the people there? [Freya; 36 weeks AN] As with the theme "Decisions", the theme "Influence" was absent in the immediate postnatal period, but in this instance, re-emerged in the last interviews, at 6 months, when participants "Identified the most important influences" as they looked back at their births. Some women describe how their healthcare professionals were the greatest influencers: So the choice [for my birth] was somewhat influenced by the obstetrician. [Nina; 6 months PN] On the physical level I don't know [why it was so], but on an emotional level as I experienced it, was the information I had before from midwives; how they followed me, how they encouraged me, in my opinion. Although looking back, I never think about my obstetrician. He had such a tiny role in the whole thing, that I'm most grateful to the two midwives who helped in this positive experience. [Irene; 6 months PN] Nora, who during pregnancy wanted a caesarean but gave birth spontaneously, saw the main influences as her baby and her obstetrician: I think it is my son and my doctor [who were the most influential]. The thing that convinced me was that it was safer for the baby, and that even if it was against my own wishes, I had chosen the safest path for the baby. [Nora; 6 months PN] However, some women believe that women could merely be guided by external influences through their birth journey, but ultimately only internal influences matter: Everyone has to find their own path and then be content with it. Also how you do things after the birth. There are so many people trying to tell you what to do. And at some point you have to build up self-confidence. I now know how I want to handle things with my child. Many might do things the same way but others might say: that is completely wrong. But as long as one has the feeling it is the right path for the child, I think it is the right way to go. And you have to learn that. [Wendy; 6 months PN] Conversely, some women discuss their regret about their healthcare professionals' lack of influence, and how they would have preferred a stronger involvement in their birth journey's especially when an intervention was offered : I just recently realised in a conversation with a friend that because of the caesarean section I now have to wait for a year to get pregnant again. That upset me quite a bit. --- Discussion Qualitative studies by nature relies on language to obtain information from subjective experiences. Van Nes describes: "The relation between subjective experience and language is a twoway process; language is used to express meaning, but the other way round language influences how meaning is constructed" [38] . This rings even more true in Gadamerian hermeneutic studies. Hermeneutics of Gadamer seek to gain understandings through the spoken words. In Gadamerian studies, it is important to not only read transcripts, but to also read them whilst listening to the recording of the interview [31]. This hermeneutic study was carried out in Switzerland, and participants were interviewed in their own national language which were German, French or Italian. As per recommendations made by some researchers, the recorded data were transcribed in the original language and memos were written pertaining to significant codes prior to translating into English, thus maintaining as much as possible of the meaning behind the participants' words [38,39]. The data we presented in the previous section show four hermeneutically derived themes. We developed them further in stage four of the research method, taking into account the preunderstandings each of us brought to the project, and our reflexive discussions throughout. Ratzinger identified a relevant hermeneutic of continuity and one of rupture [40]. Particularly noteworthy was that very few of the participants expressed a wish for caesarean section in the antenatal period but rather their expectations were on the need to have what they perceived as accurate information. Based upon that, they felt that they could make decisions that suited their own lifestyles preferences, although as shown in the final interviews, this did not always happen. Foremost in the mind of many participants was the health of their babies and if a caesarean was recommended for this reason they accepted it [15,41]. Our findings support this schema but additionally include a hermeneutic of discontinuity which, rather than being disruptive, merely created a temporary gap in the hermeneutic of continuity. Such gaps have been described more vividly by some of the literature [42], Bergum, for example, suggested there is actually a rupture as a woman transforms into a mother during the birth process [43]. However, in this study, we have shown that the participants identified themselves as mothers before the birth of their babies as acknowledged by recent UNICEF report on the first 1000 days of life [44]. The absence of data in relation to Decisions, Care and Influences, that was revealed at the time of the third interviews, did not represent a complete break. This pause allows women to focus on getting to know their babies, to develop new routines, and to physically recover from the birth. The first weeks after birth are pivotal to ensure the flourishment of the mother-infant bonding and attachment [45]. This has been described as a close emotional time when women often had little time or energy for anything apart from providing the necessary care for their babies [46]. It is now generally accepted that this is primarily due to the influence of various hormones [47,48]. This resonated particularly in this study, as the participants, being first time mothers, were feeling their way through the early days of motherhood and getting to know their new baby. Yet, they were still reflecting on the birth of their baby when a sense of "coming of age" brought the themes to a turning point. By then, the themes developed into "Getting it right next time", "Holding onto powerful emotions" and "Identifying the most important influences". The expectation of education at this time was clearly shown, and this was particularly evident in the final interviews when participants reflected on the major influences during their pregnancies. However, it has been described as the time when their expectations were often unmet [49]. We speculate the birth outcome is determined by these influences because, as demonstrated by the data, the participants were happy to have given birth to healthy babies; a finding that is supported by other research [2,25,49]. Especially relevant is the discontinuity in the participants' expectations, as reflected in the second interviews in the theme of "Emotions". This may be due to mid to late pregnancy being a time when pregnant women's emotions have stabilised [48]. Additionally, our findings show that most of the participants' preparations for the birth are complete at this time and, while there was still a sense of fear expressed by some participants, there was general acceptance that things were liable to change and, in some ways, no more advance planning could be done. Finally, we use the term "hermeneutic of rupture" to define the three trajectories that we have outlined in our themes of "Care" and "Decisions". Unlike Ratzinger who saw this phenomenon as negative, we found it to be more neutral as the themes themselves did not disappear totally but, after the first interview, became partially absorbed into two other themes. While some women initially expressed the desire for a caesarean section, most changed their minds during the course of their pregnancy. Nora's past experience of working in maternity services in developing countries for example, seems to have influenced her negatively on having a vaginal birth in relation to pain and complications. She did not trust herself and was also reassured by a precise date of birth. In the second interview, she still expected a caesarean but was contemplating the idea of vaginal birth, which she finally achieved and was happy with her decision. In the postpartum interview, however, these themes no longer existed. On reflection and further discussion, we believe this to be due to what women initially wanted to happen, balanced against acceptance of what actually happened. Our findings show this to be addressed by participants in other themes though not fully absorbed in them. --- Conclusion This study sought to gain understandings around primigravid's expectations of birth, how they flourish during the antenatal period, and how they influence the lived experiences of the birth of their baby, given that Switzerland is known for its high CS rate and its medicalized approach towards birth. From this longitudinal study, four themes Decisions, Care, Influences and Emotions were recorded. The four themes and their intertwining paths during pregnancy and postpartum demonstrate the complexity of the expectations and experiences of women becoming mothers. Planning is strongly present during the antenatal period, and naturally disappears with the birth. Emotions is present mid pregnancy, is muted around 36 weeks pregnancy and holds a key part in women's narrative of their birth at 6 weeks and 6 months postpartum. Primigravidas' expectations are greatly affected by internal and external influencers. External influencers may be healthcare professionals, friends and family, the media and society's culture, whilst internal influencers are women's own beliefs and desires. Influences evolve throughout the longitudinal study period. Women's choice of birth mid pregnancy passively steers primigravid towards one choice or another, but by the end of the pregnancy, women actively seek and plan help and support for the time of birth and early postpartum days. After 6 months, women reflect on their journey and identify the most important influencers, often healthcare providers. The sample in this study was "healthy primigravid women" as we were particularly concerned about the high caesarean section rate in the country. Several women did have emergency caesarean sections. Those that retained negative feelings at the final interviews, were not always those who had caesarean sections as satisfaction was more to do with the choices they made throughout the journey and control they were able to exercise. Therefore, women's experiences don't seem to be a strong factor contributing towards the rising caesarean section rates. --- Strengths and limitations The aim of the study which was to develop a model of the emerging expectations of giving birth and the subsequent experiences of healthy primigravid women in four cantons in Switzerland, was achieved. It is the first study of its kind to be carried out in Switzerland. Even though Switzerland is a relatively small country, our findings may be transferrable to other countries in Europe and beyond due to its multicultural facets. Our findings derive from three major language regions in the country, each with its own culture and customs. This, however, brought unique challenges for this Gadamerian hermeneutic study with its emphasis on language. The decision to analyse entirely in English eased the process to providing a "common culture", but we also acknowledge that it is not the participant's culture, and some meaning behind words may have been lost in translation. --- Implications for further research and practice With our focus on "healthy primigravid women" we add a dimension of new knowledge and provide a further layer to literature concerning the complex but under researched postnatal field. While our sampling strategy was intended to be as inclusive as possible, qualitative research can never be truly representative of the population. Thus, we plan to generate a questionnaire based on the findings, and once piloted and validated, administer this to a representative sample of first-time mothers in Switzerland. In bringing together the data, the plan was not to compare the regions but to develop a model of the "Swiss" experience and the results of the analysis have focused on the commonalities. Nonetheless, it could also be of value in the future to consider the similarities and differences between the different regions of the country so that institutions such as insurers which cover the whole country can ensure they cover the most appropriate services. The rising caesarean section rates seem to be related to factors other than women's preferences. Ambivalence towards a specific way of giving birth is common during pregnancy. This should be of concern for midwives and obstetricians during antenatal care. Information and counselling should be timely and comprehensive when discussing mode of birth. A negative birth experience may influence future preference for caesarean section. This should be considered by caregivers providing perinatal care. Finally, since the study is limited to primigravid women, it would be interesting to see if multiparous women experience these stages in the same and at the same intensity. All drew on their experiences to learn from them and utilise them in their planning for future pregnancies. This has implications for health professionals who for almost a century have placed much of their emphasis on antenatal care. It is worthy of consideration that, to make this more relevant, they assess the possibilities of providing a follow up visit to first time mothers at six months postpartum to enable the woman to reflect upon her birth journey.

Switzerland experiences one of the highest caesarean section rates in Europe but it is unclear why and when the decision is made to perform a caesarean section. Many studies have examined from a medical and physiological point of view, but research from a women's standpoint is lacking. Our aim was to develop a model of the emerging expectations of giving birth and the subsequent experiences of healthy primigravid women, across four cantons in Switzerland. This longitudinal study included 30 primigravidae from the German speaking, 14 from the French speaking and 14 from the Italian speaking cantons who were purposively selected. Data were collected by semi-structured interviews taking place around 22 and 36 weeks of pregnancy and six weeks and six months postnatally. Following Gadamer's hermeneutic, which in this study comprised 5 stages, a model was developed. Four major themes emerged: Decisions, Care, Influences and Emotions. Their meandering paths and evolution demonstrate the complexity of the expectations and experiences of women becoming mothers. In this study, women's narrated mode of birth expectations did not foretell how they gave birth and their lived experiences. A hermeneutic discontinuity arises at the 6 week postnatal interview mark. This temporary gap illustrates the bridge between women's expectations of birth and their actual lived experiences, highlighting the importance of informed consent, parent education and ensuring women have a positive birth and immediate postnatal experiences. Other factors than women's preferences should be considered to explain the increasing caesarean section rates.

Introduction Disability is a human reality that presents a large variety of faces and nuances; thus, we can assert that it is a biosocial phenomenon of great complexity due to the numerous aspects affected, which has generated the concept of the world of life. The idea of disability refers to the interaction between people who have some health problems and certain personal and environmental factors [1]. Thus, in order to approach this complexity, it is convenient to analyse the elements that constitute the sociotype of people with disabilities. This concept implies the consideration of human relations and interactions among individuals of said group with their environment [2]. These authors based their study on the work of Berry [3] and reported that the term sociotype is an integrating concept that comprises internal and external factors, combining biological, psychological and social aspects. Usually, it is considered that there are different types of disabilities, and these are usually limited to the following: auditory, intellectual, visual and physical. Moreover, they are also differentiated between congenital and acquired or unforeseeable disabilities [4]. Depending on the reality of each person and her/his limitations, the sociotype may be nuanced. In the present work, we performed a generic analysis of a person with a disability sociotype and how it is modulated by the sociogeographic context of depopulation. Berry [3] stated that the concept of sociotype is a conceptual framework that allows understanding the interactions between the social, cultural and environmental scopes. This framework influences the life-long growth, development and behaviour of a person, including his/her relationships, lifestyle and coping strategies. In this sense, it could be added that the sociotype is strongly related to agency , which is influenced by the conditioning factors of each sociotype. Margaret Archer established an analysis of the Social System based on two major dimensions: agency and structure. For this author, neither agency nor structure can separately determine human action. Human action requires the reflectivity that operates as a mediator between social structure and agency [9,10]. Therefore, this author considers that, at the internal level, there is a process that allows people to make decisions about their actions. Archer proposes a relationship between agency and structure through time [10]. In this sense, agency is related to structure and, lastly, the latter is also influenced by agency. Based on this idea, Archer considers that social agents are strongly related to structure, since these are the different existing social institutions. The Archerian perspective, although useful, suffers from a certain subjectivism, as well as certain structuralism. Thus, it does not consider the phenomena of incorporation Urban Sci. 2023, 7, 112 3 of 19 of people in their social environment, that is, the intermediate processes between the subjective elements and the objective-structural elements. In fact, Caetano [11] stated that Archer minimises social factors such as social origins, family socialisation, externality internalisation processes, the role of other structure-agency mediation mechanisms, and the persistence of social reproduction. However, Archer's perspective is sufficient to attain the objectives of the present study. This work is focused on the concept of agency in people with disabilities and, more specifically, the perception and experience of this group in areas of low population density. This study is based on the premise that living in an area with a considerable demographic decline can substantially intensify the difficulties of a social group with a "low agency level" [12]. In this sense, we assert that the structure of the system influences the agency of people. Thus, the European regions with lower population density will have greater structural difficulties to ensure that the social agency of their inhabitants matches that of more populated areas. Furthermore, this problem is even greater in groups of people with disabilities. Therefore, the present study is focused on one of the most depopulated territories of Southern Europe with the lowest population density: Soria . We begin by providing context for the province of Soria, highlighting its status as one of the most sparsely populated regions in all of Europe, and its prominent position within the group of sparsely populated regions in Southern Europe. As can be observed in Table 2 , the greatest European depopulation is concentrated in the regions of said continent and in some of the regions that are not geographically located in the European continent . According to Van Herwijnen et al. [13], many of the rural areas that suffer the most from demographic decline are located in Southern Europe. Some of these regions are Bulgaria, Greece, Il Mezzogiorno , northeastern Spain and Portugal, as well as islands such as Sicily and Sardinia. However, the data about population density show that Soria is the most depopulated province of Southern Europe, although its depopulation level is somewhat stable. Next, we will elucidate the methodology employed to fulfill our objectives, followed by an exposition of the results derived from the application of this methodology. We will also offer a succinct section delineating the limitations we encountered during the study. Finally, we will expound upon the pivotal conclusions we have gleaned from our research endeavours. --- Objectives Through this research, we aim to gain insights into the challenges faced by individuals with disabilities residing in an extensively depopulated region. To accomplish this, we outline the following specific objectives: O 1 : analyse the social structure in the most depopulated region of Southern Europe and determine how it hinders or favours the study sociotype. O 2 : explore the relationship between the perceptions and the reality of the existing structure to infer the promotions or limitations of agency. --- Methodology This is an instrumental case study of the most depopulated province of Southern Europe. Following Stake [14], this study is instrumental for not being exclusively limited to the described area, since the aim is to extend it to other areas of Southern Europe in demographic decline. In order to delve into the difficulties of people with disabilities in the most depopulated area of Southern Europe, at the beginning of 2020, a study was conducted in three different phases: documentary analysis, sociodemographic study and mixed investigation. Bricout and Gray [15] stated that research requires a mixed approach, incorporating historical evidence, the analysis of those critical elements for the phenomenon under study, mixed-methods investigation, and repeated measures in adequate time intervals. Therefore, this multiple approach was selected for the present study. --- Documentary Analysis In the documentary study, which was carried out during April 2022, different information searches were conducted in different databases , with the aim of performing a review of the articles published to date. Our analysis was based on the following searches: Disability + Europe + Depopulation = 1 paper; Disability + Europe + Society + Perception = 18 papers in WOS and 17 papers in SCOPUS ; Disability + Europe + "Low Population" = 2 papers in WOS and 0 in SCOPUS ; Disability + Europe + "Population density" = 19 papers in WOS and 2 in SCOPUS ; Disability + Europe + Population + Density = 100 papers in WOS and 24 in SCOPUS . This analysis was complementary to other studies conducted. --- Sociodemographic Study For the socio-geographic analysis, the demographic sources from the Spanish Institute of Statistics were used, specifically population censuses and registers of different years ). The population censuses are used in numerous countries for demographic studies [16][17][18]. To determine the historical evolution of the population of the province of Soria, from the year 1900 to the year 2021, the data of the censuses were used. The population censuses gather, analyse and publish the demographic, cultural, economic and social data of the inhabitants of the country, as well as the data of the different administrative divisions related to a given date or period. They are carried out every ten years and were traditionally published in the years ending in 0. Thus, for the present study, we used the censuses of 1900, 1910, 1920, 1930, 1940, 1950, 1960 and 1970; after the 1970 census, the censuses began to be published in the years ending in 1. Therefore, the rest of the censuses used in this work were those of 1981, 1991, 2001, 2011 and 2021. To build the population pyramids, which reflect the population structure by sex and age, we used the data from the Population Register of the province of Soria for January 2021. The Municipal Register is an administrative register that gathers the neighbours of a municipality and whose revision is the responsibility of the town halls, which are in charge of informing the INE about the monthly variations that occur in the data of their municipal registers. The demographic information is completed with that provided by the INE through the 2012 Social Integration and Health Survey ), the survey of the Government of Castile and Leon ), which shows the situation of people with disabilities in the autonomous community and the information related to the Social Action Centres obtained from the website of the Council of Soria ). With all this information, a series of cartograms were performed, which allowed for the visualisation of this information and showed its distribution throughout the territory, enabling comparisons among different geographic spaces. For the development of this mapping, we used ArcGis software v.10.6. Maps of proportional symbols and choropleths were generated, which allowed representing zonal phenomena with absolute or relative values [19][20][21]. For the map of proportional symbols, i.e., the one related to the distribution of people with disabilities by Autonomous Community, the intervals were manually defined to better show the similarities/differences among the different Spanish regions. For the map of choropleths, that is, the one that presents the population density and variation, the colour palettes used allow identifying the existing similarities and differences among the municipalities of the province of Soria. For the graphs and tables, the Excel 2019 spreadsheet software was employed. --- Mixed Investigation In the quantitative study, an online questionnaire was developed, which gathered information about aspects related to mobility, specifically the state of the streets of their cities, as well as the accessibility to buildings and public transportation. The quantitative study presented difficulties and was completed by a small number of people. The reasons for this low response rate are analysed in the Limitations section. The questionnaire was responded to by 37 people . Moreover, the number of responses from people over 60 years of age was also limited. Considering that, in the province of Soria in 2019, there were 6759 people with disabilities, the level of statistical significance of the data is low . Of the analysed sample, 86.49% lived in the city of Soria, and 13.51% lived in the rest of the province; 22 people presented some administratively recognised disability, and 15 people did not have any type of administrative disability. The age of the participants is shown in Table 3. All this implies certain limitations in the quantitative data, granting them an illustrative character. After determining these limitations in the quantitative information, these data were completed with a qualitative study. In this way, the study was completed and acquired greater depth, providing a complete and comprehensive view of the situation of this depopulated region. In this sense, the qualitative analysis was conducted based on a focal discussion group with 6 people who were strongly related to the scope of disability. All of these participants were workers in some association related to disability and had extensive knowledge on the reality of this issue in the province of Soria. The discussion group lasted two and a half hours and was conducted on 30 January 2020 at the campus of the University of Valladolid at Soria. According to the data of the Spanish Secretariat of Social Services , Castile and Leon was, in 2019, the fourth region in the whole of the Spanish territory with the largest number of applications to the system requesting autonomy and attention to dependency. The profiles of people who can enter this system are gathered in Article 2 of Law 39/2006, of 14 December, on the Promotion of Personal Autonomy and Attention to people in a situation of dependency, that is, those in a permanent state of dependency derived from age, disability or disease, and those with a lack or loss of physical, mental, intellectual or sensory autonomy. Firstly, Andalusia is the region that recorded the largest number of applications of the total Spanish territory, followed by Catalonia and the Community of Madrid . In the fourth place, Castile and Leon recorded 7.87% of applications, followed by the Community of Valencia, despite the fact that the population of the former is 2.5 times smaller than that of the latter . After analysing the data as a function of the relationship between the number of applications and the total population of each Autonomous Community , a significant change occurred: Castile and Leon was the region with the largest number of applications , followed by Extremadura and La Rioja . The applications to the system requesting autonomy and attention to dependency are an indicator that shows, in part, the existing situation and the possible number of people who may have their disability legally registered. However, a more real view is provided by the Social Integration and Health Survey , which shows the distribution, by autonomous communities and percentages, of disability in Spain, that is, of the people who have administratively recognised disabilities . The largest number of people is concentrated in Andalusia, with a fifth of the Spanish total , followed by Catalonia , the Community of Valencia and the Community of Madrid . These four regions combined gather over half of the people with disabilities in the whole of the country, specifically 58.75%. It is important to mention that these four communities are the most populated communities in Spain, and they gather 58.91% of all the inhabitants of the country; that is, there is a correspondence between the total population and people with disabilities. This is not the case for surface distribution, since all these people live in 29.8% of the Spanish territory. These communities are followed by Galicia , the Canary Islands , the Basque Country and Castile and Leon . These are autonomous communities with smaller populations compared to the previous communities, and therefore, they show a smaller total number of people with disabilities. They are in an intermediate level between the most populated regions and the following group of territories with a smaller number of inhabitants and lower population with disabilities, such as Cantabria, the Balearic Islands, Extremadura and La Rioja . The largest number of people is concentrated in Andalusia, with a fifth of the Spanish total , followed by Catalonia , the Community of Valencia and the Community of Madrid . These four regions combined gather over half of the people with disabilities in the whole of the country, specifically 58.75%. It is important to mention that these four communities are the most populated communities in Spain, and they gather 58.91% of all the inhabitants of the country; that is, there is a correspondence between the total population and people with disabilities. This is not the case for surface distribution, since all these people live in 29.8% of the Spanish territory. These communities are followed by Galicia , the Canary Islands , the Basque Country and Castile and Leon . These are autonomous communities with smaller populations compared to the previous communities, and therefore, they show a smaller total number of people with disabilities. They are in an intermediate level between the most populated regions and the following group of territories with a smaller number of inhabitants and lower population with disabilities, such as Cantabria, the Balearic Islands, Extremadura and La Rioja . It is in the territory scope where problems emerge regarding accessibility to certain services and the lack of specialised equipment and centres required by this population group. A total of 41.25% of the population with disabilities is located in 70.2% of the Spanish territory, which coincides with the most aged regions, whose population is decreasing, presenting important structural problems. Analysing the situation in Castile and Leon, the temporal data allow studying the evolution of the population with disabilities in this region. There are available data about the total number of cases between the years 2007 and 2018 by age groups and sex. In 2007, the number of cases was 152,037, whereas in 2018, the number of cases was 176,336; that is, an increase of 24,299 new cases of people with disabilities was recorded. These numbers indicate that 7.32% of the inhabitants of this Autonomous Community had some type of administratively recognised disability. It is in the territory scope where problems emerge regarding accessibility to certain services and the lack of specialised equipment and centres required by this population group. A total of 41.25% of the population with disabilities is located in 70.2% of the Spanish territory, which coincides with the most aged regions, whose population is decreasing, presenting important structural problems. Analysing the situation in Castile and Leon, the temporal data allow studying the evolution of the population with disabilities in this region. There are available data about the total number of cases between the years 2007 and 2018 by age groups and sex. In 2007, the number of cases was 152,037, whereas in 2018, the number of cases was 176,336; that is, an increase of 24,299 new cases of people with disabilities was recorded. These numbers indicate that 7.32% of the inhabitants of this Autonomous Community had some type of administratively recognised disability. The main cause that explains this increase is the ageing of Castile and Leon, which is a situation that implies the need for greater investment in daily social and care services. According to the data of the INE in 2018, the percentage of inhabitants aged 65 years and older in Spain was 19.07%, i.e., six points below the numbers of Castile and Leon, whose ageing data exceeded 25% of the population. Specifically, in this autonomous community, 25.06% of the population was over 65 years of age, which made it the second most aged region of Spain after Asturias and followed by Galicia . With respect to sex, the global difference between men and women was very small. In 2007, there were more women with disabilities than men, with percentages of 50.38% and 49.62%, respectively. However, in 2018, men represented 51.87% of people with disabilities, whereas women represented 48.13%. Regarding age groups, greater differences were found . In the older cohorts, the number of people with disabilities was larger. In this way, in the group of young inhabitants , the population with disabilities represented 2.26%, whereas for the group of 15-64 years, the population with disabilities represented 47.50%. More significant numbers were identified for the group that was 65 years and older, with more than half of the people with disabilities , partly due to the characteristic ageing of the region of Castile and Leon, with an increasingly older and more dependent population that requires a series of care services. Within this last group, it is worth highlighting the difference between men and women in the cohort of 85 years and older. In this population group, there are twice as many women with disabilities compared to men: 10.52% of women versus 5.35% of men. The causes of this phenomenon are, as previously mentioned, the ageing of the population and the greater life expectancy of women, which makes them more numerous than men in this age group. With regard to the group of men, disability is more frequent in males than in females in practically the entire pyramid, from 0 to 79 years. The greatest differences are found in the group of 50-69 years, where the variation between men and women is over one point and, in some cases, it reaches almost one and a half points in favour of men, due to disabilities derived from certain jobs traditionally associated with men. With respect to sex, the global difference between men and women was very small. In 2007, there were more women with disabilities than men, with percentages of 50.38% and 49.62%, respectively. However, in 2018, men represented 51.87% of people with disabilities, whereas women represented 48.13%. Regarding age groups, greater differences were found . In the older cohorts, the number of people with disabilities was larger. In this way, in the group of young inhabitants , the population with disabilities represented 2.26%, whereas for the group of 15-64 years, the population with disabilities represented 47.50%. More significant numbers were identified for the group that was 65 years and older, with more than half of the people with disabilities , partly due to the characteristic ageing of the region of Castile and Leon, with an increasingly older and more dependent population that requires a series of care services. Within this last group, it is worth highlighting the difference between men and women in the cohort of 85 years and older. In this population group, there are twice as many women with disabilities compared to men: 10.52% of women versus 5.35% of men. The causes of this phenomenon are, as previously mentioned, the ageing of the population and the greater life expectancy of women, which makes them more numerous than men in this age group. With regard to the group of men, disability is more frequent in males than in females in practically the entire pyramid, from 0 to 79 years. The greatest differences are found in the group of 50-69 years, where the variation between men and women is over one point and, in some cases, it reaches almost one and a half points in favour of men, due to disabilities derived from certain jobs traditionally associated with men. According to the 2012 Social Integration and Health Survey conducted by the INE, the main limitation of this population group, both in the whole of Spain and in Castile and Leon, was being homebound, since over 50% of the people perceived it as a barrier to carry out their activities of daily living, mainly due to the maladaptation of buildings to their needs. It is worth pointing out the problems related to transportation, which is worse and less adapted in Castile and Leon, where 43.27% of people report encountering difficulties, compared to 29.87% of the population in the whole of Spain. Other important barriers are found in the realisation of cultural and leisure activities, with very high percentages, with the general Spanish population reaching 70% and that of Castile and Leon exceeding this percentage. The access to and mobility in buildings, as well as access to adequate employment, continue to present impediments for the daily living of people with disabilities. In regard to access to the Internet and social contact and support, the barriers have been practically removed. The province of Soria presents sociodemographic characteristics that influence the economic scope and its territory. The evolution of the population between the years 1900 and 2020 shows a sharp decrease in the number of inhabitants from 150,000 in 1900 to merely 90,000 in 2020. That is, in absolute numbers, it has lost a total of 61,578 inhabitants, which poses a 40.93% lower population compared to the year 1900 . This decrease began in the mid-20th century, specifically in the decade of 1950-1960, when the process of rural flight took place, that is, the moving of the population from the rural areas to the urban areas, in search of new opportunities in the industrial and service sectors, due to the employment decline in agricultural activity as a consequence of the technical and technological reforms that occurred in the agricultural sector. The result of this change was the constant decrease in the population in the province, with people moving to industrial development areas such as those in Zaragoza and Valladolid, industrial promotion areas such as that in Burgos, the industrial regions of the Basque Country, and the Community of Madrid. The latter, in addition to being the capital of Spain, offered greater opportunities in the service sector. culties, compared to 29.87% of the population in the whole of Spain. Other important barriers are found in the realisation of cultural and leisure activities, with very high percentages, with the general Spanish population reaching 70% and that of Castile and Leon exceeding this percentage. The access to and mobility in buildings, as well as access to adequate employment, continue to present impediments for the daily living of people with disabilities. In regard to access to the Internet and social contact and support, the barriers have been practically removed. --- The Local Context: Soria The province of Soria presents sociodemographic characteristics that influence the economic scope and its territory. The evolution of the population between the years 1900 and 2020 shows a sharp decrease in the number of inhabitants from 150,000 in 1900 to merely 90,000 in 2020. That is, in absolute numbers, it has lost a total of 61,578 inhabitants, which poses a 40.93% lower population compared to the year 1900 . This decrease began in the mid-20th century, specifically in the decade of 1950-1960, when the process of rural flight took place, that is, the moving of the population from the rural areas to the urban areas, in search of new opportunities in the industrial and service sectors, due to the employment decline in agricultural activity as a consequence of the technical and technological reforms that occurred in the agricultural sector. The result of this change was the constant decrease in the population in the province, with people moving to industrial development areas such as those in Zaragoza and Valladolid, industrial promotion areas such as that in Burgos, the industrial regions of the Basque Country, and the Community of Madrid. The la er, in addition to being the capital of Spain, offered greater opportunities in the service sector. The population decrease is associated with a decrease in population density, which has always been low, i.e., around 15 people per square kilometre in the years that recorded the highest population in the province , decreasing to less than 10 people/km 2 from 1981 to 2020, with a population density of 8.62 people/km 2 , thereby considering this territory as a demographic desert. Comparing these data for the year 2020 with those of Castile and Leon as a whole and Spain , the numbers of the province of Soria are very low. By municipality , of the 183 municipalities of the province, 153 have a population below five people/km 2 , of which 37 have less than one person/km 2 . These numbers show the agonising situation of practically the entire province of Soria. The highest density is found in the city of Soria, with 146.64 people/km 2 , which also concentrates 44.8% of the population of this province. The capital is followed by Salduero, with 56.44 people/km 2 . In this case, this municipality has very little representation, as it has a very small population , distributed in a surface of only Urban Sci. 2023, 7, 112 10 of 19 2.69 km 2 . The cases of Ólvega, San Leonardo de Yagüe and Almazán are more significant, with 37.23 people/km 2 , 33.93 people/km 2 and 32.91 people/km 2 , respectively; these localities have more than 1000 inhabitants each and operate as regional hubs, with a greater population concentration and greater development and economic diversity. Of the 183 localities of the province, only ten of them showed a population increase , whereas the other 173 presented a population decrease. the total) have a population below five people/km 2 , of which 37 have less than one per son/km 2 . These numbers show the agonising situation of practically the entire province o Soria. The highest density is found in the city of Soria, with 146.64 people/km 2 , which also concentrates 44.8% of the population of this province. The capital is followed by Salduero with 56.44 people/km 2 . In this case, this municipality has very li le representation, as i has a very small population , distributed in a surface of only 2.69 km 2 The cases of Ólvega, San Leonardo de Yagüe and Almazán are more significant, with 37.23 people/km 2 , 33.93 people/km 2 and 32.91 people/km 2 , respectively; these localities have more than 1000 inhabitants each and operate as regional hubs, with a greater population concentration and greater development and economic diversity. Of the 183 localities o the province, only ten of them showed a population increase , whereas the othe 173 presented a population decrease. The structure by sex and age shows a very aged society due to the increase in the population over 65 years of age and the overageing of people over 84 years of age . The birth rate The structure by sex and age shows a very aged society due to the increase in the population over 65 years of age and the overageing of people over 84 years of age . The birth rates decrease, the young population groups are increasingly narrower, as can be observed in the bottom of the population pyramid, and people are increasingly older . The youngest group represents 12.10% of the population, the age group of 15-64 years represents 62.32%, and the oldest group represents 25.58%. The differences with Spain are great since, in the whole of the country, the percentage of the population aged 0-14 years is 14.40% and that of 65 years and older is 19.43%, which is also a worrying percentage since the ageing degree of the Spanish population is also high. Therefore, it is necessary to invest in social policies for the most disadvantaged population groups that are in full and constant growth. The reality of disability in the province of Soria is influenced by its economic, social and demographic situation. As can be observed, the province of Soria presents an unbalanced population structure in terms of territory, characterised by a great degree of ageing, which influences the sociotype of people with disabilities. In fact, an important part of the sociotype of people with disabilities is constituted by older people . In 2019, in the province of Soria, there were a total of 6759 people with disabilities, predominantly physical disabilities , followed by intellectual disabilities , mental disabilities , visual disabilities , and auditory disabilities . Cases of deafblind people have not been registered. Due to the important percentage of people with disabilities, this situation may lead the rest of the disabilities to remain invisible to some extent, or even marginalised in some cases by the administrations and social groups in the making of certain decisions that affect their daily living. According to the degree of disability, 51.16% range between 33 and 64% of disability, 27.05% range between 64 and 74%, and 21.79% have 75% or higher. Figure 6 shows, as in the case of the situation of Castile and Leon, a sharp increase in adult people with disabilities, specifically from the age of 40 years, increasing year by year. It is worth highlighting the percentage of women aged 85 years and older, with 13.45% of all the people with disabilities, compared to 6.13% of men. Once again, this is due to the larger number of women in these age ranges. Therefore, the sociotype of people with disabilities is fundamentally represented by people over 50 years of age. The reality of disability in the province of Soria is influenced by its economic, social and demographic situation. As can be observed, the province of Soria presents an unbalanced population structure in terms of territory, characterised by a great degree of ageing, which influences the sociotype of people with disabilities. In fact, an important part of the sociotype of people with disabilities is constituted by older people . larger number of women in these age ranges. Therefore, the sociotype of people with disabilities is fundamentally represented by people over 50 years of age. Regarding the place of residence, it is possible to distinguish those people who live in urban areas, that is, with populations of over 10,000 inhabitants, from those who live in rural areas. In the case of the province of Soria, the only locality with this characteristic is the city of Soria, with the other 182 municipalities belonging to the category of rural local- In 2019, in the province of Soria, there were a total of 6759 people with disabilities, predominantly physical disabilities , followed by intellectual disabilities , mental disabilities , visual disabilities , and auditory disabilities . Cases of deaf-blind people have not been registered. Due to the important percentage of people with disabilities, this situation may lead the rest of the disabilities to remain invisible to some extent, or even marginalised in some cases by the administrations and social groups in the making of certain decisions that affect their daily living. According to the degree of disability, 51.16% range between 33 and 64% of disability, 27.05% range between 64 and 74%, and 21.79% have 75% or higher. Figure 6 shows, as in the case of the situation of Castile and Leon, a sharp increase in adult people with disabilities, specifically from the age of 40 years, increasing year by year. It is worth highlighting the percentage of women aged 85 years and older, with 13.45% of all the people with disabilities, compared to 6.13% of men. Once again, this is due to the larger number of women in these age ranges. Therefore, the sociotype of people with disabilities is fundamentally represented by people over 50 years of age. Regarding the place of residence, it is possible to distinguish those people who live in urban areas, that is, with populations of over 10,000 inhabitants, from those who live in rural areas. In the case of the province of Soria, the only locality with this characteristic is the city of Soria, with the other 182 municipalities belonging to the category of rural localities with less than 10,000 inhabitants. The urban habitat concentrates 48.54% of the people with disabilities, whereas the rural areas have the other 51.45%. The fact that over half of these people live in rural areas implies a series of associated problems, such as the scarcity of services and difficulties related to mobility. The smallest municipalities, i.e., those with less than 500 inhabitants, represent 89.62% of all the municipalities of the province, and these are the ones that report the largest number of problems. Thus, there are a total of 10 Social Action Centres , which are shared among several municipalities and distributed throughout the entire province, and they struggle to alleviate this situation. In addition to these CEAS, social services are also provided by the town halls and associations of people affected by some disability, such as ASAMIS, ASOVICA-FADESS, Asociación Autismo Soria, FADISO , the Ande Soria Cultural Association, etc., which provide socio-healthcare attention to people with some type of disability. --- Descriptive Quantitative Study Based on the information reported by our informants, the general valuation of the situation is positive since 27 people valued this situation with a score of ≥5. This score is in disagreement with Figure 7, which shows a negative perception of accessibility in the towns and cities of residence. In regard to accessibility to public buildings, 28 of the 37 participants gave a score of ≥5 to this parameter. Furthermore, over half of the participants showed a positive perception toward accessibility to public buildings, with a score of ≥7. Only nine people gave a value of less than 5 to the accessibility to public buildings. With respect to the valuation of the ease of access to public transportation, the responses were also generally positive, with 28 participants giving a score of ≥5. The basic elements of accessibility of the province seem to be adequate, according to the perception of people related to disability. It would be convenient to delve into the understanding of accessibility through a more exhaustive, detailed and objective study, thoroughly analysing the situation of the streets, traffic signs, traffic lights, etc. In some cases, routine and everyday life affect our perception, which somehow alters our valuation. The participants were also asked about the phenomenon of incorporating disability into the social structure. To this end, the informants were requested to value the following statement: "I consider that, in the locality where I live, people with disabilities are taken into account". The general perception of our informants was positive, with 24 people giving a score of ≥5 to this statement. The next step was to determine whether the closest political administrations informed appropriately about the possible services they provide to improve the quality of life of people with disabilities. Therefore, it was important to ask the participants if they were well informed about the activities conducted by the closest institutions. In this case, 18 people gave a score of 5; thus, we could not consider that they generally felt well informed. In fact, on the other hand, 19 people had a negative perception, considering that these institutions do not inform adequately, valuing them with a score of ≤4. The data suggest that the local institutions need to improve their information means, although, as was previously mentioned, these data must be considered with caution, requiring further research and analyses in this respect. After describing the perception of people related to disabilities toward the institutions, we focused our analysis on the situation of some services and the possibilities of improving the lives of people affected by disability. In this sense, we addressed the aspects related to employment, companies and the treatment in medical services. Thus, our aim was to obtain a general view of the reality of the social structure of the province regarding the analysed sociotype. We began by approaching the collaboration and understanding the medical services offered to people affected by disability in the medical centres of the province. To this end, the participants were asked to provide their perception toward these aspects. The informants gave highly positive information in general lines. In fact, thirteen and seven people valued these interactions with a score of 8 and 5 points, respectively, whereas only four people reported a negative valuation. With respect to the services aimed at people with disabilities, such as assisted housing and hospices, most of the responses were positive. In fact, 20 people gave a score of 5 or more points to such services, whereas 17 people had a negative perception toward them, with 11 people giving a score of 3 points to these services. The greatest problem was detected in the labour scope. In this sense, 25 people gave a negative valuation regarding Lastly, the participants were asked about their valuation of the information published by the media of the province. More specifically, we asked them to value from 0 to 10 whether the media, which reports on their province, addresses the problems of people with disabilities. In this case, the responses were less positive than the previous responses. In fact, eighteen people responded with a score of ≤5; nine, six and eight informants valued the information of the local media with a score of 3, 4 and 5 points, respectively. In this sense, it would also be convenient to thoroughly analyse the type of information that is presented about people with disabilities in the province. Moreover, we considered that it would be important to know the perception of people affected by disability toward the political institutions . According to their responses , there was a clear difference between the valuation of the institutions that are closer to the citizens and the valuation of those that are farther away. It is not possible to establish a clear upward or downward tendency; thus, we decided not to incorporate this information. However, we could make some clarifying comparisons. Most of the participants valued the work of the city hall with a score of 5 or higher. In the case of the County Council of Soria, the value was slightly lower . For the Government of Castile and Leon, once again, 28 people valued the work of this institution with 5 or more points. Lastly, in the case of the Spanish Government, only 14 people gave a score of 5 or more points. It is also worth pointing out that nine informants valued the City Hall with 7 points, and eight people gave 4 points to the Spanish Government. In addition, six people considered that the Spanish Government did nothing and, therefore, gave it a score of 0. The next step was to determine whether the closest political administrations informed appropriately about the possible services they provide to improve the quality of life of people with disabilities. Therefore, it was important to ask the participants if they were well informed about the activities conducted by the closest institutions. In this case, 18 people gave a score of ≥5; thus, we could not consider that they generally felt well informed. In fact, on the other hand, 19 people had a negative perception, considering that these institutions do not inform adequately, valuing them with a score of ≤4. The data suggest that the local institutions need to improve their information means, although, as was previously mentioned, these data must be considered with caution, requiring further research and analyses in this respect. After describing the perception of people related to disabilities toward the institutions, we focused our analysis on the situation of some services and the possibilities of improving the lives of people affected by disability. In this sense, we addressed the aspects related to employment, companies and the treatment in medical services. Thus, our aim was to obtain a general view of the reality of the social structure of the province regarding the analysed sociotype. We began by approaching the collaboration and understanding the medical services offered to people affected by disability in the medical centres of the province. To this end, the participants were asked to provide their perception toward these aspects. The informants gave highly positive information in general lines. In fact, thirteen and seven people valued these interactions with a score of 8 and 5 points, respectively, whereas only four people reported a negative valuation. With respect to the services aimed at people with disabilities, such as assisted housing and hospices, most of the responses were positive. In fact, 20 people gave a score of 5 or more points to such services, whereas 17 people had a negative perception toward them, with 11 people giving a score of 3 points to these services. The greatest problem was detected in the labour scope. In this sense, 25 people gave a negative valuation regarding the ease for people with disabilities to be employed. Moreover, eight people gave a score of 0 and 1 . All this suggests that the institutions and companies have much work to do in this regard. The abovementioned need for business effort became clear when we asked the informants whether employers were committed to people with disabilities. To this question, 25 people showed a negative perception and, specifically, 13 participants gave a value of 3 points. This information suggests the existence of job integration barriers to people with disabilities in the province. This was subsequently corroborated in the qualitative study, where the representatives of the participating associations showed a clear concern about this issue. This negative impression of Sorian employers among the participants is complemented with the next aspect, which is related to the problem of equality in the conditions of access to employment. In fact, the informants showed a clear perception of inequality in the access to the job market. Thus, only nine people considered that the valuation of this parameter deserved a score of 5 or more points. This indicates the need for greater effort in this context in order to increase the levels of equality in the possibility of being employed. --- Qualitative Analysis The qualitative study demonstrated the difficulty in attending to people with disabilities in the province of Soria, mainly due to the lack of resources. This enables us to deduce the challenges individuals with disabilities may encounter in their capacity to engage in their activities and exercise their life choices . This is, without a doubt, a discursive aspect that shows the existing problem in this region, according to the participants. I1 stated the following: "I feel sad, because I could think of a lot of things to be improved, a lot of things to be done, but there are no technical, financial or human resources to provide assistance. . . So, I feel very sad and angry. But, anyways, I learned to control these feelings in time." I2 said: "On my part, I believe that the most frustrating thing is the lack of sufficient services". In turn, I1 expressed the following: "We also have the problem with subsidies, which are very scarce. The resources are the same in Soria City and in the rural area, that is, nothing." The participants added that, due to these deficiencies, they had to move patients to hospitals of other provinces. Certainly, this factor significantly influences the potential for human connections with family and friends when one is admitted to a hospital. According to the participants, this generates a problem of estrangement in those affected: "There is also the problem of estrangement. Of course, they spend 20 years in [name of the association], which is their family. And then we are forced to separate them from the association", which was endorsed by I3. In a different part of the debate, I4 stated: "In relation to the state of the province, the bad things of the province , our people, the doctors, the lack of specialists and such. . . In the end, all of them have to flee the province. [All informants repeated, of course!]. In Valladolid, that is, inside the autonomous community, they created a team for orthoneuropediatric valuations; but for us, Valladolid is farther away from here than Madrid is. In the end, we all end up going to Madrid". Then, with respect to the actions carried out by the administration, I1 reported the following: "The Administration, for example, if people with disabilities, any type of disability, have some type of service, is because us, the entities, are providing them. We are doing a great work for the Administration, because, if it weren't for the entities. . .". The participants presented numerous specific examples of streets, buildings or particular cases with accessibility problems. In this sense, they had a much more negative view of the context and of accessibility, compared to that shown by the participants in the quantitative study. For instance, I2 highlighted the need to increase the number of pictograms in the central area of the province to improve cognitive accessibility. I4 strongly asserted the following to support the idea of I2: "People can't navigate here!" I3 even stated, giving herself as an example, that older people find it very difficult to get an appointment in institutional buildings. In contrast with this negative view, all participants stressed on solidarity and social advance. This aspect was pointed out as a factor of emotional and economic support for all entities. In this sense, I4 expressed the following: "About Soria, I must highlight the solidarity of its people. In our case, for example, the hospice we are building is great. I mean, I believe that the people of Soria are giving more money than the Administrations. I think that the solidarity here is extraordinary, and that people respond to the problems". I4 and I3 stated that this is due to the small size of the city and the fact that "we all know each other". In this sense, all participants underlined the importance of the educational centres and of the welcoming they receive in them. Thus, they believed that this factor is key to the inclusion and improvement of the lives of people affected by disabilities. However, despite the social advances, they considered that there is still much work to be done and that, for this reason, "they will fight on". This aspect was unanimous. --- Discussion This study shows the reality of disability in the province of Soria. This type of research is not frequent. In fact, Rodríguez-Soler et al. [22], in a bibliometric study on the rural depopulation in which they analysed 1150 articles between the years 1979 and 2018, did not mention the existence of studies related to disability in highly depopulated areas. This confirms, at least partly, our documentary study. This province is the most depopulated territory of Southern Europe. Such depopulation is due to the fact that different social groups, such as single people, youth, women, and highly qualified people, among others, are more prone to moving to larger cities [23]. Thus, in regions such as Soria, there is a greater relative proportion of people with low education levels and older ages. This depopulation is forcing local services and businesses to terminate their activity due to a lack of demand [24]. This loss and its consequent lack of services and options has also been repeatedly reported by our informants in the qualitative analysis. In the quantitative analysis, the response was positive, although in this case it is important to be aware that most of the responses are from the capital, where the resources and services are concentrated. In line with this, Lewin et al. [8] stated that social care services respond to need/demand processes, although mechanisms of generation of these services also take place without the need for such demand. In fact, these authors linked the establishment of such services to political ideology, as well as to municipal characteristics. These elements, to some extent , can also be observed in the province. The quantitative analysis shows several results of interest. Firstly, it seems that the needs of people with disabilities are covered. This fact could be related to the small relative size of the capital of the province . This minimises some health problems related to the high population density [6]. Therefore, the problem would lie in the province itself, where the population nuclei are smaller and dispersion is greater. In this sense, the qualitative study clearly shows this fact and the assistance difficulties presented by the people who live in localities outside of the capital. Thus, the people who live in the province would be in a situation of potential vulnerability in the face of cutbacks, for instance. In this sense, Sèpulchre [25] reported that the financial scope is fundamental for the development of measures of assistance to people with disabilities. For this reason, this author stated, according to the associative movement, that the action investment is lower than that indicated by the politicians, since the analysis of costs performed by the politicians does not consider the advantages of such actions. This is in line with our analysis, although it maintains the difficulty of attending to the needs of people with disabilities who live in the province. As was highlighted by Järkestig et al. [26], the cost reduction strategies derived from austerity policies also affected our sociotype, as it posed a substantial reduction in expenditures. Precisely, this fact is also perceived as an element of control reduction and of elections [27], as well as of the exclusion of participation in society [26]. In this sense, Järkestig et al. [26] and Hayes [28] asserted that austerity strategies must be understood as an ethical mechanism that excludes the most vulnerable social groups, which include our sociotype. Moreover, different authors show that the context of depopulation has a negative effect on disability [5,7]. In the province of Soria, there are areas with a very high level of depopulation. According to the Spanish Federation of Municipalities and Provinces , those municipalities with less than 1000 inhabitants have been established as municipalities at risk of disappearing. In the case of Spain, these represent 61.48% of all municipalities in the entire country. This percentage is considerably higher in the province of Soria, with 93.48%; that is, 172 of its 184 municipalities have less than 1000 inhabitants and would thus be at risk of disappearing, according to the FEMP. These numbers are worrying, since 64.13% of the Sorian municipalities have less than 100 inhabitants, which is a situation that has intensified and has a direct impact on the provision of essential services to the population, thereby making the lives of people with disabilities even harder in the rural areas. Indeed, structural challenges unquestionably impact the autonomy and the agency of individuals with disabilities. These limitations become more pronounced in sparsely populated regions characterized by service gaps and restricted life choices. This fact hinders the generation of community participation networks and, therefore, social inclusion [29]. To solve this problem, organisations related to disability try to promote mechanisms of approach for people in the capital to increase their community participation and socialisation. In essence, individuals with disabilities harness the power of collective action to amplify their agency through collaborative processes. However, these processes deteriorate the economic capacity of associations and, therefore, the possibility of carrying out activities of healthcare, improvement of quality of life, etc. Another important aspect is related to the world of work. In this case, all the analyses conducted show that there is a problem in this sense and that, in addition, employers are not committed to the reality of our sociotype. Thus, the problem we are facing is that the State, taking into account the general demographic evolution and the relationships between unemployment and health [30], should be aware of this reality and develop strategies for the promotion of employment. Otherwise, no matter how many integration mechanisms are developed, these will not be complete [29]. This fact may also explain why the participants considered that the Spanish Government is one of the main political agents that care least about their needs. --- Limitations and Opportunities As was previously indicated, the quantitative analysis was limited due to two main reasons, although both are related to the lack of funding for the development of these works. It is known that gathering data face to face generates higher response rates, but they involve higher costs than the online format. On the other hand, older people do not usually agree to respond to online questionnaires or use social networks. Moreover, the analytical perspective used in the quantitative study was consultative and not exploratory. In fact, the aim of this study was to explore the subjective reality of people affected by disability, their assistance needs and the opinion of associative entities. Therefore, we did not focus our work on statistical precision but on the subjective and intersubjective perception of the participants. The data that we have gathered originate from a modest sample size. However, it is worth noting that our approach in this quantitative study has been consultative rather than exploratory. Consequently, our emphasis has not been on achieving statistical precision, but on gaining insights into the subjective experiences of individuals affected by disability within a small, predominantly elderly population. This knowledge will serve as a foundational basis for conducting more intricate future studies in this domain and formulating practical recommendations for enhancement. In view of this, the following are proposed as possible future lines of research: 1. Our first future line of research could be conducting a comprehensive investigation into the key determinants impacting the province of Soria, with a particular focus on the infrastructure network, including roads and public transport systems. We will explore their implications for land-use planning and accessibility to specialized facilities across various municipalities within the province. Additionally, we intend to create a geographical map that calculates distances and estimated travel times to the provincial capital, as well as other crucial urban centres in the surrounding area that serve as vital hubs for the local population. --- 2. A second future line of research could be studying the situation of other provinces in Spain which are in a similar situation of depopulation to Soria, such as the provinces of Teruel and Cuenca , in order to check whether there is a similar situation to that of Soria. This study would make it possible to establish similarities and differences between territories with a high level of depopulation and to be able to undertake measures to help alleviate the deficit. --- Conclusions --- 1. In the province of Soria, there are localities with a very high depopulation level. These areas are located in the south of the province. In these localities, the possibility of increasing the difficulties that may be encountered by people with disabilities is greater than in other regions. This is also enhanced by the high centralism present in the province. In fact, most of the population is concentrated in the capital of the province. --- 2. The capital is not a city with great population density. This fact may be one of the elements that explain the positive view of the city. In this sense, the quantitative and qualitative analyses are in disagreement. The informants of the quantitative analysis perceive the city in a more positive manner than the participants in the qualitative analysis. --- 3. Social solidarity has increased, and this was perceived as a positive aspect. This fact improved, to some extent, the lives of people with disabilities and their social inclusion. The informants consider that there is much work to be done, although they also recognise that social exclusion has decreased. 4. The business sector and the political agents are perceived most negatively. The informants consider that there is no commitment to people with disabilities either on the part of employers or on the part of the government. For this, the State should be aware of the real existing needs in order to be able to implement integration mechanisms that provide solutions to this problem. This is one of the reasons why the informants consider the government to be one of the least committed agents to their problems. This allows confirming the need for further work to build a more equitable society, support the employment of people with disabilities and develop political mechanisms to improve the aspects that affect this sociotype. 5. In Soria, over 60% of its municipalities boast populations of less than 100 residents, predominantly situated in rural settings. This stark demographic distribution has had an adverse impact on the availability of essential services within these villages, subsequently exacerbating the challenges faced by individuals with disabilities in rural areas and limiting their agency. 6. Our investigation has substantiated our initial premise: residing in areas experiencing significant demographic decline can significantly magnify the hurdles encountered by specific social groups. --- Data Availability Statement: The data reported here are available at request by scientific community members. --- Funding: This research received no external funding. ---

European regions with a lower population density have greater structural difficulties in ensuring that the daily life of their inhabitants matches that of more populated regions. This problem persists in groups of people who present some type of disability. Soria (Spain) is one of such regions. It is considered the most depopulated region of Southern Europe. Therefore, the aim of this study was to analyse the reality of people with disabilities in one of the provinces with a lower population density. It also seeks to explore the relationship between the perceptions and the reality of the existing structure to infer the promotions or limitations of agency. To this end, we conducted a systematic review of the existing literature, a sociogeographic study of the study context, and a mixed investigation. The results show that the greatest problem lies in the cities and towns located far away from the capital city, causing budget cutbacks and, therefore, reducing the attention to the needs of people with disabilities. However, social solidarity has increased, which is perceived as greater social inclusion for this group.

Background Genomics research has long failed to include participants representative of the full diversity of the global population, and marginalized and medically underserved groups remain underrepresented [1][2][3]. Diverse representation is ethically essential for ensuring that research is seen as inclusive and that research findings reflect patients' lived experiences in the real-world settings where they receive care. The root causes of underrepresentation stem from and are upheld by longstanding, discriminatory attitudes, behaviors, and societal structures. Past research studies have actively and infamously harmed marginalized and minoritized individuals and communities, contributing to a legacy that researchers should be viewed with skepticism about whether they will fulfill their promises to minimize harms and maximize benefits [4][5][6][7][8][9]. Compounding this legacy of untrustworthy research, barriers such as time and transportation burdens of attending research visits, [10] reliance on preexisting clinical relationships for recruitment, [11] and limited outreach to patients in rural areas [12] systematically exclude groups of patients from participating. Improving diversity in research therefore requires a multifaceted response that includes addressing access barriers and fostering collaborative partnerships through community engagement [13] and relationship building [14]. Part of this responsibility includes developing research approaches that respond to participants' needs and values-including reevaluating how we define and operationalize the ethical principles that guide research. In particular, the principle of respect for persons is foundational to the ethical conduct of clinical research [15,16] but is generally presumed to be fulfilled through regulatory measures to promote autonomous informed consent [17]. This narrow interpretation of respect for persons may not fully reflect the lived experiences and values of participants and potential participants, resulting in missed opportunities to fulfill the ethical obligation to respect each person as an individual and treat them how they wish to be treated. For example, one assessment of failed clinical trials identified elements that could make participants feel disrespected, such as long wait times for appointments or not being able to access study results [18]. Broader approaches to examining researchers' obligations to respect participants that examine the nuances of researcher-participant relationships may be better suited to incorporate these and other considerations by attending to participants' lived realities and experiences of research [19]. To develop best practices for demonstrating respect in clinical research studies, especially as research initiatives increasingly strive to engage with underrepresented populations, it is essential to understand how individuals who have had little prior contact with research wish to be respected. Our prior work explored the perspectives of current genomics research participants on what activities contribute to their experiences of respect in research [20]. A critical next step is to examine patient views on respect among those who are not enrolled in genomics research and receive care in settings where they are unlikely to have had many opportunities to enroll, e.g., in community-based clinics. In this study, we built on our prior exploratory work and incorporated the views of patients in community-based settings about which activities should be prioritized in the development of interventions to improve potential genomics research participants' experience of respect. We developed a web-based survey using a modified Delphi technique to identify areas of agreement among a panel of patient-respondents on activities that would be most important to demonstrate respect in research. We specifically sought to engage with individuals who would be potentially eligible to participate in genomics research but had not previously been invited to do so, to ensure approaches to respecting potential participants reflect the viewpoints of individuals who have been traditionally excluded from research. --- Methods --- Overview We conducted a 3-stage modified Delphi survey in which patients rated and ranked approaches that would be most important to their experience of respect in genomics research [Supplemental Material]. The modified Delphi technique is a method used to develop consensus over time among an expert panel [21,22]. For purposes of our research question, the relevant expert population is individuals who could be invited to participate in research but are not currently engaged in it-in this case, patients who would potentially be eligible to take part in a genomics research study due to personal or family history. While Delphi methods are often used to develop consensus among experts with professional expertise on the topic of interest, we sought to emphasize patients' lived expertise in this study, and we used an asynchronous survey approach to maximize inclusion. Respondents were instructed that each round of the survey would build on the previous rounds and would incorporate their and others' responses. This study was reviewed and approved by the Seattle Children's Hospital Institutional Review Board. --- Recruitment We recruited patients at three primary care clinics in western Washington, southwest Washington, and southern Idaho. Clinics were selected to include patients from rural and urban geographic areas and to reach people with diverse racial, ethnic, and socioeconomic backgrounds who were unlikely to have previously participated in research. Interested clinics were identified through the WWAMI region Practice and Research Network , which is a primary care practice-based research network of clinics and clinical organizations in the 5-state WWAMI region [23]. Within the two states where we recruited, Washington and Idaho, in the 2020 US Census the median reported income was $82,4000 and $63,777, respectively, and the proportion of whiteidentifying individuals was 65% and 92%, respectively [24]. Patients were eligible to participate if they were age 18 + , could read and write English or Spanish, and reported any personal or family history of cancer. At one clinic, we identified potentially eligible patients with a personal or family history of cancer via an electronic health record query, mailed letters, and followed up by phone. At the other two clinics, we posted flyers, collected contact information from interested patients, and followed up by phone or email. Because each round of the survey would build on previous rounds, including the possibility of new items based on the wording of respondents' open-ended responses on the previous survey, we administered two series of surveys, one in English and one in Spanish. Each survey began with identical information, with the Spanish version translated by a certified translator and reviewed by a bilingual survey researcher with expertise in the Delphi method; subsequent survey rounds were modified based on intermediary responses, as described below. However, due to low recruitment and, consequently, inadequate sample size in the Spanish version, we only report here on the English version of the survey. The Spanish version of Round 1 is included in the Supplemental Material for reference. A total of 41 English-speaking individuals consented to participate and were sent an invitation to complete the first survey. Surveys were all completed via Qualtrics. Figure 1 shows recruitment and retention through the three survey rounds. --- Round 1 Round 1 of the survey asked respondents to rate a list of 17 items, which were developed based on our prior indepth qualitative work that described genomics research participants' perspectives on activities that convey respect in research [20]. Our prior work took place in the context of the implementation of a hereditary cancer screening program [25]. Because we anticipated that most respondents to this survey would not have prior research experience, we included a brief description of a hypothetical genomics research study involving screening and testing for hereditary cancer syndromes, similar to the study on which our prior work was based, to ground our respondents' answers [Supplemental Material]. Following the research study description, respondents were asked to rate, on a Likert scale from 1 to 5 the importance of each of the 17 items for feeling respected in research. Respondents were given the opportunity to expand on their responses and to add any additional items of importance in openended responses. After rating the 17 items, respondents were asked additional questions about their experiences in clinical care and demographics. Round 1 was fielded from January to February 2021 and respondents received a $40 gift card. --- Round 2 Round 2 repeated the research study description from Round 1, followed by an opportunity to re-rate each of the 17 items from Round 1. For each item, respondents were shown a bar graph of all respondents' responses to that item, reminded of how they had rated it, and asked to re-rate it. In addition, new items were added based on the open-ended responses from Round 1. These were identified through a two-coder process through which each coder assessed the clarity, scope, and uniqueness of each open-ended response. Those that met these criteria were reworded as needed and included as additional items after the first 17 items. Using this approach, we added 3 items. Round 2 was fielded in February 2021 and respondents received a $50 gift card. --- Round 3 We selected items for Round 3 using a categorical cut point based on responses to Round 2 such that the list of items in Round 3 would be feasible for respondents to complete the ranking task, which we evaluated through pilot testing. In determining our cut points, our goal was to identify approaches that were most important to the most people, which we determined post hoc to ensure we could meet this goal while maintaining a feasible list. We identified 8 items that 90% of respondents rated as "very" or "extremely" important on Round 2. In Round 3, respondents were again shown the research study description, then were asked to rank this subset of items from most to least important for feeling respected in research. At the end of the Round 3 survey, respondents were given the opportunity to respond to an open-ended question with any additional thoughts about their rankings or their experiences taking the surveys. Round 3 was fielded in March 2021 and respondents received a $60 gift card. --- Analysis We calculated descriptive statistics for each item on each of the three surveys for each language group. We sorted the ranked items on Round 3 in order by mean ranking to produce our final list of respondent rankings. Two authors reviewed each response to the open-ended question on Round 3 to identify responses that expanded on the information provided in the closed-ended questions or added context to survey responses. --- Results --- Respondent characteristics Of 41 respondents who consented to receive the survey, 21 completed Round 1. Of the 21 respondents to Round 1, 18 also responded to both Rounds 2 and 3 . Most respondents were recruited from Site A. Additional respondent characteristics are shown in Table 1. --- Rounds 1 and 2: Interim ratings Initial item ratings in Round 1 and revised ratings in Round 2 are shown in Table 2. --- Round 3: Final rankings In Round 3, respondents ranked "research staff thoroughly describe the research study so I can decide whether to join" ; median ranking 1.5) and "research staff show kindness, patience, non-judgment, and interest in me as a ; median ranking: 5.5). Full rankings are shown in Table 3. Seven respondents provided additional detail in openended responses . One respondent noted that they would rank some items equally. Two described items related to providing information or being kind as basic or "obvious" requirements, and one added that they would not participate in a study that did not fulfill these requirements. Others reiterated the importance of understanding study goals and how information will be used, expressed the importance of written information, and suggested edits to existing items . One added that language was not a major concern for them given their perspective as an English speaker. Finally, one respondent described the importance of researchers being aware of their participants' clinical context: "Genetics, the experience of cancer in the family or oneself, and the risk of cancer are incredibly personal and emotional topics. After completing this sequence of surveys, I believe that holding space for the whole individual experience of disease and illness, as well the potential of our own illnesses , is the most important part of feeling respected in such a study. " --- Discussion Our survey respondents collectively identified several activities that would be most important for their experience of respect in a hypothetical genomics study involving screening and testing for hereditary cancer syndromes. Items related to informed consent and study team interactions characterized by kindness, patience, and non-judgment were ranked as the most important respect-promoting activities. The high ranking of these items may reflect the fact that these interactions are often the most visible parts of a research study from a participant's perspective, and thus a key locus for participants to experience respect, but it is also important for researchers to be aware how systems-focused approaches may shape these and other research experiences. Other highly ranked items on our survey may be particularly critical for showing respect in studies where consent and/or personal interactions are not feasible-for example, in some pragmatic clinical trials where varied considerations have been proposed that could, individually and/or collectively, contribute to respectful research [26]. Our findings also highlight a need for further work examining perceptions of respect among individuals who use languages other than English, as well as to support the development of respect-promoting interventions. Our findings emphasize the importance of the informed consent process, as well as positive, informative, non-judgmental, and consistent interactions with research staff, for research participants to feel respected. These findings support the traditional understanding of consent as a central activity through which a research team can demonstrate respect for potential participants, highlighting the importance of both transparency about the study and control over one's decision as key functions of a respectful consent process [27,28]. They also highlight, as one respondent pointed out in an open-text response, that feeling respected in these ways may almost serve as a requirement for some people to participate in research and thus it is likely worth seeking ways to fulfill at least some functions --- Survey 2 Exclusive Questions To feel respected as a participant in the kind of cancer research described at the beginning of this survey, how important would it be to you that the study give you written materials on why the study is needed and important? - - 4.1 4 To feel respected as a participant in the kind of cancer research described at the beginning of this survey, how important would it be to you to have the option to speak with study staff in person? --3.7 4 To feel respected as a participant in the kind of cancer research described at the beginning of this survey, how important would it be to you that you get to decide if your study test results are shared with your healthcare provider? --3.9 4 of consent, such as providing transparency, even if full informed consent is impracticable. There also may be opportunities to further improve participants' experiences of respect by ensuring the consent process meets individuals' needs and supports their decision-making, for example through tailored or dynamic consent processes that are responsive to participant preferences and values [29,30]. In doing so, researchers should not assume their responsibilities to respect participants end with promoting autonomy, but should incorporate attention to participants' lived experiences and the full range of their needs and values. Our findings also emphasize the importance of the research staff who are interacting with potential participants throughout the recruitment and consent processes. As one respondent wrote, "holding space for the whole individual experience of disease and illness" is critical for conveying respect, particularly in a setting where participants and their families may be experiencing serious illness. These findings build on our prior qualitative work in which participants identified personal interactions as a key way through which they perceived respect in research [20] and reflect the importance of the researcher's contextual awareness and humility about participants' lived experiences. Prior work has also identified positive and non-judgmental attitudes as facilitators for recruitment and retention, [31] illustrating how respectful interactions may be linked with enrollment decisions. Taken alongside the existing literature, our findings provide further evidence of the importance of training in and development of interpersonal skills, appropriate time and resources, and integration within the study to ensure research staff are well-positioned to engage with potential participants and address their questions and concerns [32][33][34][35]. Importantly, however, not all research studies involve direct personal interactions between potential participants and members of the research team. To ensure participants feel respected in such studies, researchers should consider how they might use remote research approaches or asynchronous interactions to complete the activities that were highly ranked by our respondents. For example, a web-based module can include a thorough explanation of a study, with additional detailed information available for those who are interested in learning more and checks for understanding throughout. Likewise, a specific contact person could be identified. Lower-ranked items from our final survey round may also reveal approaches to showing respect outside of the consent process or any interpersonal interactions, for example through providing high-quality information in the participant's language, individual or overall study results, and/or other follow-ups. These may be particularly important to implement in the setting of pragmatic trials or other settings where consent is not feasible [26]. Given respondents' comments that many of these approaches are seen as basic requirements, it may be important to strive to fulfill as many as possible within a study's constraints. For example, while sharing genetic results and study findings have been discussed as approaches to respect participants [36,37], the relatively lower rankings of these items suggest that, given the cost and complexity of sharing results, research teams could consider prioritizing investing in high-quality consent processes with easy-to-read written materials or hiring and training study coordinators who are skilled in engaging with participants respectfully. Future research could explore participants' perspectives on how to navigate such trade-offs. Further work is needed to identify priorities for demonstrating respect in different types of research with various --- Limitations Our study is limited by the relatively small number of our respondents and lack of substantial numbers of respondents who speak a language other than English. Despite our intentions to include Spanish-preferring respondents, we were unable to recruit a large enough sample to report, but we hypothesize that items such as the presence of interpreters or study staff who speak the participant's language may be higher ranked among patients who prefer languages other than English. Still, the relatively high ranking of this item among our respondents suggests that patients see language accessibility as a key element of respectful research, even if they do not face language access barriers themselves. An additional limitation of this study is that our results may be biased due to the low response rate. While our respondents were diverse across several dimensions, they may be more supportive of research than others by virtue of having responded to this survey, and the most marginalized voices may not have come to the forefront. Future work should continue to examine whether individuals from different geographical regions, cultural backgrounds, and other socially identifiable groups prioritize different activities as conveying respect. For example, receiving research results may be particularly valuable for patients who lack meaningful clinical access to results, [11] and additional items related to proper use of personal pronouns may be important for gender-diverse individuals or others who regularly experience misgendering [38]. These and other experiences of individuals from marginalized social groups highlight the need to identify unique needs and values beyond those identified in our survey. Importantly, these and other items that were not ranked among the top respect-promoting activities may be critical for the experience of respect in certain settings or among certain groups, and even if not critical for respect, may have other ethical justifications. For example, sharing results with participants' clinical providers may not be encompassed under the principle of respect, but may nevertheless be supported by the principle of beneficence. While our respondents prioritized autonomy-promoting approaches to respect based around interpersonal interactions, future work should examine more specifically how studies should enact other approaches to developing respectful procedures. While the use of the modified Delphi technique allowed respondents to review each other's answers and update their own responses over time, respondents may not have fully appreciated their role as part of a consensus panel, and the asynchronous design did not allow for interactive discussion that might have produced different results. We also note that the context in which this survey took place may have influenced our response rate as well as the responses of those who responded. Our recruitment and survey took place during a significant wave of the COVID-19 pandemic, which limited our recruitment in some clinics. This was also a time of intense public debate about equitable implementation of vaccinations that may have affected respondents' views. While this context does not change the implications of our findings, it does highlight that participant preferences for how they are engaged in research may be context-dependent and that ongoing evaluation of the impact on participants is necessary. --- Conclusions Participants in this study prioritized informed consent and interpersonal interactions as central to experiencing respect in research, alongside several other high priorities for a positive research experience. Future work should continue to explore participant perspectives on respect across different clinical populations, demographic groups, and research contexts, as well as to develop, implement, and evaluate tools and interventions to improve participants' experiences of respect that build on these findings. Implementing such patient-centered approaches to respecting participants could enhance the ethics and inclusivity of research. --- --- Abbreviations --- WPRN WWAMI region Practice and Research Network WWAMI Washington, Wyoming, Alaska, Montana, and Idaho --- --- --- Funding This study was funded by the National Institutes of Health, under National Human Genome Research Institute award number K01HG0010361, with additional support for the WPRN provided by National Center for Advancing Translational Sciences award number UL1TR002319. The funding body had no role in study design, data collection, analysis, and interpretation, or manuscript preparation. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. --- --- --- Competing interests The authors declare that they have no competing interests. • fast, convenient online submission • thorough peer review by experienced researchers in your field • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year --- • 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: ---

Background Standard interpretations of the ethical principle of respect for persons have not incorporated the views and values of patients, especially patients from groups underrepresented in research. This limits the ability of research ethics scholarship, guidance, and oversight to support inclusive, patient-centered research. This study aimed to identify the practical approaches that patients in community-based settings value most for conveying respect in genomics research.We conducted a 3-round, web-based survey using the modified Delphi technique to identify areas of agreement among English-speaking patients at primary care clinics in Washington State and Idaho who had a personal or family history of cancer. In Round 1, respondents rated the importance of 17 items, identified in prior qualitative work, for feeling respected. In Round 2, respondents re-rated each item after reviewing overall group ratings. In Round 3, respondents ranked a subset of the 8 most highly rated items. We calculated each item's mean and median rankings in Round 3 to identify which approaches were most important for feeling respected in research.Forty-one patients consented to the survey, 21 (51%) completed Round 1, and 18 (86% of Round 1) completed each of Rounds 2 and 3. Two sets of rankings were excluded from analysis as speed of response suggested they had not completed the Round 3 ranking task. Respondents prioritized provision of study information to support decision-making (mean ranking 2.6 out of 8; median ranking 1.5) and interactions with research staff characterized by kindness, patience, and a lack of judgment (mean ranking 2.8; median ranking 2) as the most important approaches for conveying respect. Conclusions Informed consent and interpersonal interactions are key ways that research participants experience respect. These can be supported by other approaches to respecting participants, especially when consent and/ or direct interactions are infeasible. Future work should continue to engage with patients in community-based settings to identify best practices for research without consent and examine unique perspectives across clinical and demographic groups in different types of research.

INTRODUCTION Development is an ongoing series of activities involving all aspects of community life, including economic and social elements, to enhance the well-being of all segments, which is a fundamental prerequisite for the nation's sustainability . Community well-being, a key indicator of national progress, is achieved through a holistic approach with physical and non-physical programs implemented through effective leadership styles. Physical programs, such as sports, provide health benefits, while nonphysical programs, like training, enhance the skills and knowledge of the community. Effective leadership plays a crucial role in reinforcing the impact of both physical and non-physical programs. Democratic, inspirational, and empowermentoriented leadership can boost community participation and motivation. Effective organizations are greatly influenced by strong leadership, emphasizing the need to define the scope of their capabilities and mobilize the organization for a transformative shift toward a new vision . In the context of the influence of physical and non-physical programs on community wellbeing through village government leadership, welldeveloped physical infrastructure, including transportation, clean water, education, and health facilities, significantly improves well-being by enhancing accessibility, ease of activities, and economic opportunities. Ihlebaek et al. stated that non-physical programs involve activities to improve community well-being, emphasizing social, economic, cultural, educational, and public service aspects without the involvement of physical infrastructure development. Similarly, Gonzales et al. note that non-physical programs focus on behavioural change, capacity building, and empowerment to achieve broader development goals. Harsasto states that non-physical programs enhance human resources and social well-being through education, training, health initiatives, capacity building, and community empowerment. Hudayana et al. add that nonphysical programs focus on developing human potential, empowering communities, improving quality of life, and initiating regional social changes. Despite extensive research in this field, a gap exists in understanding how physical and nonphysical programs influence community well-being through leadership styles. Therefore, this study aims to fill this knowledge gap and provide deeper insights. Using a quantitative approach and involving respondents who have participated in these programs, the research will analyze the influence of physical and non-physical programs on community well-being through effective leadership styles. Additionally, the study will examine how leadership styles can strengthen the impact of these programs. Renowned management expert Drucker explains that leadership styles should align with situations and tasks. He argues that effective leaders must adapt their leadership styles to the needs and characteristics of their teams. It aligns with Kurt Lewin's concept of three leadership styles: autocratic, democratic, and laissez-faire, chosen based on group dynamics and situations. Warren Bennis et al. , a management expert and author, emphasize the importance of transformational leadership in creating change and inspiration within organizations. According to him, effective leaders must motivate and guide team members to reach their maximum potential. This view is reinforced by Kotter , a Harvard Business School professor, highlighting the role of leadership in managing organizational change. The expected outcome of this research is to contribute significantly to developing more effective programs for enhancing community wellbeing. The findings can serve as a foundation for policymakers and local leaders to design better public policies, improve community empowermentoriented leadership practices, and strengthen community participation in development programs. --- METHODS --- This research was conducted in Pongo Village, Masamba Sub-district, North Luwu Regency. The research duration was approximately two months, during which relevant data were collected to be processed, examined, and evaluated. The study was conducted in this village because the researcher aimed to understand the influence of Physical and Non-Physical programs on community well-being through leadership style. Quantitative research employs a scientific approach that collects and analyses numerical data, providing a clearer and more objective understanding of the relationships between variables. It is correlational or causal research, identifying causal relationships between independent variables , mediating variables , and dependent variables . The population in this study comprises the entire community residing in Pongo Village. Furthermore, the sample size for this study is determined using the Moe formula as follows, with a large and unknown population size , resulting in a total of 102 samples. Hypothesis testing was performed using Structural Equation Modeling through Partial Least Squared with the assistance of SmartPLS 3.2.9 as the software package. PLS-SEM was chosen due to its suitability for theory development and handling complex models. Additionally, this technique effectively estimates cause-and-effect relationships in theoretical models based on empirical data . The operational definitions of variables in this research are presented in Table 1. --- FINDINGS --- Respondent Characteristics Descriptive analysis will illustrate respondent characteristics and describe the research data. In obtaining data, the researcher created a questionnaire that was distributed and filled out by the residents of Pongo village. This questionnaire contains several statements/questions about the influence of Physical and Non-Physical Programs on Community Wellbeing through the Leadership Style of the Pongo Village Government, with 102 questionnaires distributed. The distribution system of the 102 questionnaires involved delivering them from house to house and accompanying respondents to address any questions related to the questionnaire, ensuring no errors occurred in filling out the questionnaire. This research involved 102 respondents from the Pongo village community. Descriptive data on respondents provide straightforward information about the conditions of the subjects under study. Respondents in this research are described in terms of gender, age, and education. The table value of r is determined by looking at the r-table for N=20 at a significance level of 5%, resulting in a table value of r equal to 0.4438. The comparison of the calculated r-value with the critical rvalue from the validity test results indicates that all statement items for the constructs of physical, nonphysical, leadership style, and Community Well-being are considered valid. --- Reliability Test The reliability test is used to determine the consistency of the measuring instrument and whether the measuring tool used is reliable and remains consistent when the measurement is repeated. The instrument in this study can be considered reliable if the Cronbach's alpha result is > 0.6. The summary of the reliability test results is presented in Table 5. --- Data Analysis and Hypothesis Testing Structural Equation Modeling analysis based on variance was employed using SmartPLS 3 software to examine the relationships between variables in this study. Before the SEM model is used to estimate the analyzed variables, it is essential to assess the validity and reliability of the resulting SEM model. --- Model Validity Test The validity test used to evaluate the validity level of the VB-SEM model in this study is Convergent Validity. There are two ways to determine the validity of the SEM model using the convergent validity technique: by examining the values of outer loading and the average variance extracted . --- Outer Loading The required factor loading value is > 0.7, and all indicators have values > 0.7 in the validity test conducted. The SEM model declared valid is presented in Figure 1. --- Figure 1. Outer Model Average Variance Extracted The measure used is Average Variance Extracted with an expected value of > 0.5. The results of the validity test to assess the AVE values are presented in Table 6. Table 5 shows that the AVE values of all observed variables in this study are > 0.5, so it can be said that all variables are valid and can be used to test the SEM model. --- Model Reliability Test Reliability is a measure of the consistency of indicators in measuring their variables. The values used to determine the SEM model's reliability level are Composite Reliability and Cronbach Alpha. This type of reliability determines the internal reliability level of variable indicators. --- Analysis of Inter-Variable Influence and Hypothesis Testing SEM analysis aims to test the magnitude of the influence of independent variables on dependent variables. The SEM model resulting from the study of inter-variable influence is presented in Figure 2. --- Figure 2. Inner Model The Influence of Research Variables --- Influence of Research Variables The analysis of the influence of variables examined in this research includes the impact of physical program variables , non-physical program variables , leadership style , and community well-being . This analysis is also used to test the research hypotheses. The magnitude of the influence of these variables is presented in Table 8. First Hypothesis: It is suspected that the physical program positively and significantly influences leadership style. The result of the T statistical analysis obtained a t-score of 5.407 > t-table = 1.98 with a P-value of 0.000, which is smaller than the cut-off Value of 0.05. It implies that the physical program variable positively and significantly influences leadership style. Therefore, the first hypothesis is accepted. Second Hypothesis: The non-physical program is suspected to positively and substantially influence leadership style. The result of the T statistical analysis obtained a t-score of 11.249 > t-table = 1.980 with a P-value of 0.000, which is smaller than the cutoff Value of 0.05. It means that the non-physical program variable positively and significantly influences leadership style. Therefore, the second hypothesis is accepted. Third Hypothesis: It is suspected that leadership style positively and significantly influences community well-being. The result of the T statistical analysis obtained a t-score of 3.771 > t-table = 1.980 with a P-value of 0.000, which is smaller than the cutoff Value of 0.05. It means that the leadership style variable positively and significantly influences community well-being. Therefore, the third hypothesis is accepted. Fourth Hypothesis: The physical program is suspected to positively and substantially influence community well-being. The result of the T statistical analysis obtained a t-score of 3.017 > t-table = 1.98 with a P-value of 0.003, which is smaller than the cutoff Value of 0.05. It implies that the physical program variable positively and significantly influences community well-being. Therefore, the fourth hypothesis is accepted. Fifth Hypothesis: It is suspected that the nonphysical program positively and significantly influences community well-being. The result of the T statistical analysis obtained a t-score of 0.836 < t-table = 1.98 with a P-value of 0.403, which is larger than the cut-off Value of 0.05. It means that the non-physical program variable has a positive influence but is not significant on community well-being. Therefore, the fifth hypothesis is rejected. Sixth Hypothesis: It is suspected that the physical program positively and significantly influences community well-being through leadership style. The result of the T statistical analysis obtained a t-score of 2.632 > t-table = 1.98 with a P-value of 0.009, which is larger than the cut-off Value of 0.05. It implies that the physical program variable positively and significantly influences community well-being. Therefore, the sixth hypothesis is accepted. Seventh Hypothesis: The non-physical program is suspected to positively and substantially influence community wellbeing through leadership style. The result of the T statistical analysis obtained a t-score of 4.000 > t-table = 1.98 with a P-value of 0.000, which is larger than the cut-off Value of 0.05. It means that the non-physical program variable positively and significantly influences community well-being. Therefore, the seventh hypothesis is accepted. --- DISCUSSION --- Influence of Physical Program on Leadership Style The research findings indicate that the physical program variable positively and significantly influences leadership style. A well-implemented physical program can encompass road construction, bridges, buildings, clean water facilities, irrigation, recreation areas, or health facilities. The primary objective of a physical program is to enhance the quality of life for the community, improve infrastructure, and create a better environment, thus elevating leadership style in the village. This research aligns with the theory per Busro , stating that leadership style is how a leader influences a physical program so that individuals willingly undertake numerous actions directed by the leader without feeling pressured, all in the pursuit of community wellbeing goals. Deciding on the best course of action for an organization is one of the crucial responsibilities of a leader . --- Influence of Non-Physical Program on Leadership Style The research findings indicate that the nonphysical variable positively and significantly influences leadership style. Non-physical programs can serve as a basis for measuring leadership style by conducting training related to leadership. This research aligns with the theory according to Sedarmayanti and Paniagih et al. , where the non-physical work environment encompasses all conditions related to work relationships, both with superiors and in achieving actualization. Leaders play a crucial role in achieving higher moral maturity levels, and effective leaders can mobilize subordinates to prioritize the collective good over individual interests. --- Influence of Leadership Style on Community Wellbeing The research findings indicate that the leadership style variable positively and significantly influences community well-being. A good leadership style plays a crucial role in creating a productive work culture and ensures the community's well-being, allowing them to lead their daily lives well and fostering high levels of loyalty. It aligns with the research conducted by Umar et al. and Hermawan , demonstrating leadership models' positive and significant influence on employees' well-being and work productivity from an Islamic economic perspective. --- Influence of Physical Program on Community Well-being The research findings indicate that the physical program variable positively and significantly influences community well-being. A physical program is one activity that can assist the community in the form of infrastructure development, such as irrigation construction, contributing to community well-being. Community well-being is achieved when the community's physical and spiritual needs are fulfilled, including infrastructure development to enhance the standard and quality of life. This finding is consistent with the study by Fajri , demonstrating the positive impact of village road infrastructure development on the community's well-being. --- Influence of Non-Physical Programs on Community Well-being The research findings indicate that the nonphysical program variable has a positive but insignificant influence on community well-being. Nonphysical programs implemented by the local government, such as training and direct cash assistance , may not guarantee community wellbeing due to insufficient provision for physical and spiritual needs and their non-sustainable nature. This finding contradicts the study by Djako et al. and Azhari and Suhartini , which shows that direct cash assistance positively influences the community's well-being in Moodu Village, Gorontalo. --- Influence of Physical Program on Community Well-being through Leadership Style The research findings indicate that the physical program variable positively and significantly influences community well-being through leadership style. Leadership style determines the direction of development in an area, and when combined with a physical program, it becomes an essential aspect of community well-being. It aligns with the study by Aulia and Sarwoprasodjo , which suggests that a female village head's leadership style leads to higher well-being than a male village head influenced by different leadership styles. According to Hidayati , the leadership role of a village chief is crucial in enhancing citizen participation to raise awareness of the importance of involvement in village physical development activities, which, in turn, is expected to boost the village's economy and directly impact the welfare of the rural community. --- Influence of Non-Physical Program on Community Well-being through Leadership Style The research findings indicate that the nonphysical program variable positively and significantly influences community well-being through leadership style. Leadership style is an effort to enhance community participation, roles, and independence in decision-making and implementing village development programs. Social and welfare programs support and assist vulnerable groups or those in need, contributing to community well-being. This finding is consistent with Ariani's study on the leadership skills of the village head in Karang Anyar, Lampung, showing that effective leadership skills positively impact non-physical village development. --- CONCLUSION The study indicates that the physical program variable positively and significantly impacts leadership style. The presence of a well-established physical program that facilitates all governmental activities can influence an individual's leadership style, enhancing the effectiveness of the government system. Similarly, the non-physical program variable demonstrates a positive and significant influence on leadership style. Non-physical programs, emphasizing personal development and enhancing capacities and soft skills, can positively shape an individual's leadership style in governing more effectively. Furthermore, the leadership style variable positively and significantly influences community well-being. A leader's success is measured by their ability to elevate community wellbeing, achievable through a leadership style that fosters a productive work culture. The physical program variable also plays a significant role in influencing community well-being positively. Enhancements in physical programs, quantitatively and qualitatively, supporting various economic and non-economic activities within the community, contribute to the increased well-being of the community. On the other hand, while having a positive influence, the non-physical program variable lacks statistical significance in impacting community well-being. Another aspect crucial for improving community well-being is the empowerment-oriented enhancement of non-physical programs. Moreover, the study establishes that the physical program variable significantly contributes to community wellbeing when coupled with effective leadership styles. Adequate physical programs and impactful leadership have proven to elevate community well-being. Similarly, when aligned with community needs and effective leadership styles, the non-physical program variable significantly influences community well-being. Non-physical programs that resonate with community requirements, coupled with effective leadership, have demonstrated a substantial impact on community wellbeing.

Community welfare is a key indicator of a nation's progress. A holistic approach involving various factors is necessary to achieve sustainable welfare, including physical and non-physical programs implemented through effective leadership styles encompassing sports, training, education, and skills development. This research aims to identify the influence of physical and non-physical programs on community welfare through the leadership style of village government in Pongo Village, Masamba District, North Luwu Regency. The research method used is explanatory research with data collection through validated questionnaires tested for reliability before distribution. This study's population and sample are Pongo Village residents selected through purposive sampling, with 102 respondents chosen according to the Moe formula for sampling determination. The collected data are analyzed using the SmartPLS statistical tool. The results indicate a significant impact of physical and non-physical programs on leadership style and community welfare. Additionally, leadership style has a considerable influence on community welfare. Both physical and non-physical programs also directly contribute significantly to community welfare. The research further reveals an indirect impact, where physical programs significantly affect community welfare through leadership style.

Introduction The emergence of the COVID-19 pandemic has significantly elevated the prominence and visibility of the nursing profession within both the public eye and mainstream media. During the period of March-April 2020, media coverage pertaining to nurses saw a threefold increase in comparison to the previous year [1]. The Italian and global media landscape, spanning television, radio, print, and online platforms, remained extensively engaged from February 2020 onwards, offering continuous narratives about the pandemic and its multifaceted aspects. This sustained engagement has led to the reconfiguration of the nurse's image in the collective consciousness, fostering a heightened awareness and renewed identity [2]. Healthcare professionals emerged as frontline responders, navigating critical scenarios necessitating heightened expertise across diverse care environments. This exposed them to unprecedented risks of infection and emotional strain, surpassing the challenges faced by professionals in other fields, thereby influencing their present actions and potentially shaping future practices [3]. Concurrently, the prevailing image of nurses, often informed by stereotypes [4], has experienced a noteworthy transformation during this historical juncture. Notably, an emblematic dimension of this elevated nursing profile has been the attribution of collective or individual designations such as "angels" or "heroes." While these labels reflect an intention to acknowledge the courage, compassion, and dedication intrinsic to the profession [5,6], they also present a dynamic wherein society revises the archetype of the "compassionate caregiver". However, this revision seldom acknowledges the nurse's autonomy within their professional scope. A study conducted within Italy, aimed at discerning societal perceptions of the nursing role, underscores the profession's evolutionary trajectory in recent years. Despite these advancements, a considerable portion of society remains unaware of the nursing profession's multifaceted role and capabilities [7]. Globally, nursing remains among the most misunderstood occupations, both in the eyes of the media and the public. The scholarly literature advocates for social channels as mechanisms for healthcare professionals to represent and safeguard their vocations. Paradoxically, the improper application of such platforms can lead to adverse outcomes, potentially tarnishing not only the nurse's image but also the larger healthcare institution to which they belong. This underscores the profound impact of mismanaged image projection and its corresponding repercussions [8]. Bennett et al. [1] underscored the superficiality of media portrayals, wherein labels such as "angels" and "heroes" inadvertently undermine the intricate expertise integral to the nursing role. Consequently, this shift in perception repositions the profession from one rooted in expert practice to one of tireless service [8]. While an underlying respect for nurses among the Italian population is evident, their competencies are often underappreciated. A survey exploring the perception of nurses' images, supported by the educational transformations introduced through the Bologna Process, contributed an Italian perspective on this matter [9]. In the 2017 study, 398 individuals were interviewed and categorized into four groups: Very Important Persons , upper-school students, nursing students, and the general population group [10]. In this work, the results were correlated with demographic characteristics such as age, gender, education, profession, knowledge of the nursing profession, and related educational paths. Additionally, the study explored the varying levels of satisfaction associated with the participants' previous hospitalization experiences [11,12]. These variables were subsequently examined in connection with other research endeavors related to the perception of the nurse's image among students in schools that received orientation information about the nursing degree program in Italy [13]. The changes in educational policies, transitioning nursing education to the university level, have contributed to a reasonable shift in the perceived image of nurses, which in turn seems to impact national healthcare policies [13,14]. In Italy, in the aforementioned studies conducted on different samples [13], the Nursing Attitude Questionnaire was employed. The present study aimed to replicate the use of this tool for descriptive purposes, involving the broader Italian general population during the post-pandemic period. This was accomplished through an online survey using social media channels widely spread across the Italian territory, allowing for a more diverse and comprehensive view of the population . The goal was to analyze the population's perception of the nurse's image, specifically assessing how this perception had changed in the post-pandemic period due to the increased visibility of nurses during the COVID-19 emergency. To date, only a limited number of studies in the literature have delved into the exploration of the nursing image during both health crisis phases, as posited by Rezaei-Adaryani et al. [10], and the subsequent post-pandemic period: currently, in Italy, another study is underway that assesses the change in the population's perception of the nurse's image within the pandemic context , but not within the post-pandemic context. --- Materials and Methods --- Study Design An online snowball sampling survey was conducted among the Italian population until the designated conclusion of the study using social networks. --- Participants in the Study The study encompassed an adult population, enrolling participants within the age range of 20 to 70 years who provided their informed consent for participation. Subjects below the age of 20 and above the age of 70 were excluded from the study. Additionally, individuals who were not part of the Italian population were also excluded. Given that this study had descriptive objectives, a formal sample size calculation was not conducted. --- Data Collection and Instruments Upon securing informed consent from each participant, data collection took place from August 2022 to January 2023. The evaluation of the perceived nurse's image was facilitated through the utilization of the Nursing Attitude Questionnaire . Originally formulated by Hoskins [11] and subsequently adopted by Toth [12], this tool serves to gauge values and sentiments associated with the nurse's image as perceived by distinct segments of the population, including ordinary citizens, nursing students, and upperschool students. In 1998, Toth reported a Cronbach's coefficient of 0.75 [12]. Since the questionnaire was not available in Italian, the same questionnaire was translated from English to Italian by two independent external translators, ensuring the preservation of all original elements. This was followed by a back-translation of the reconciled Italian version into English by a native speaker. This translated and back-translated version has been previously used in two Italian studies [9,13]. The questionnaire comprises a set of 30 Likert items, encompassing a range of responses from 1 to 5 , with intermediate options of 2 , 3 , and 4 . The completion of the questionnaire typically requires approximately ten minutes. The survey delved into five distinct domains, namely: 1. Professional Role ; 2. Professional Values ; 3. Stereotypes ; 4. Professional Activities ; 5. Nursing Professionals' Attributes and Responsibilities . Notably, scores on the NAQ span from 30 to 150 points, wherein higher scores indicate a more favorable attitude towards nursing, whereas lower scores reflect a less positive perception. Prior to statistical analysis, seven items underwent recoding [12]. The questionnaire also included a section containing socio-demographic data: gender , age , marital status , educational attainment , region of Italy , religious belief, employment status , profession, whether the respondent works in a healthcare profession, whether the respondent has a family member or acquaintance who is a nurse, whether the respondent has ever been hospitalized, and whether the respondent or their family member required hospital and/or home care assistance from a nurse during the COVID-19 emergency, along with their level of satisfaction, and the extent to which TV series and/or news have influenced their perceived image of nurses [9]. The questionnaire was uploaded to the Google Forms platform and made visible using social media. --- Data Analysis The analysis was performed using Jamovi version 2.3.18 and Microsoft Office Excel software. The characteristics of the sample and NAQ scores were subjected to an array of statistical measures, including frequencies, percentages, central tendency indices such as mean and median, as well as measures of dispersion like standard deviation and range. Statistical significance was ascertained through various methods: ANOVA and the t-test were employed for interval data variables, while the chi-square test was utilized for nominal variables. To examine correlations between variables, Pearson's coefficient was applied. A significance level of p < 0.05 was adopted to determine statistical significance, accompanied by a confidence interval of 95%. The reliability of each test was assessed using Cronbach's alpha, which measures internal consistency and reliability. --- Ethical Considerations The bioethics committee of the University of Bologna, under protocol number 13221 dated 8 February 2017, had previously granted approval for earlier studies conducted at the university. These prior studies employed the NAQ to gauge the extent of the population's perception regarding the nurse's image. The present study repurposes this research within the context of the post-pandemic period of COVID-19, thereby expanding upon the investigations initiated during the pre-pandemic phase. The questionnaire, administered via self-completion by participants through a provided link, was meticulously structured to ensure the compiler's anonymity. Information was automatically updated in the database in such a manner that the identity of the respondent could not be traced, aligning with confidentiality requirements as stipulated by Law No. 675/1996. Prior to sampling, all necessary information regarding informed consent was included in the introductory section of the questionnaire. Participants' adherence to the study was voluntary and demonstrated through a designated acceptance prompt on the questionnaire platform. --- Results Overall, the sample consists of 564 people: 76.9 percent from the south , 13.6 percent from the north , 7.9 percent from the center , and 1.4% did not state where they were from. --- Description of the Participants The age group most significantly represented is individuals aged 20 to 30 years, accounting for 34.9% of the sample. This is followed by the 41 to 50 years age group at 22.7% and the 31 to 40 years age group at 20.7% . Within the sample, 39.9% identified as single, while 29.8% were married. In terms of educational qualifications, 51.4% possessed a high school diploma, and 28.9% held a bachelor's degree. Regarding employment, 34.2% were employed in the public sector and 18.8% in the private sector. Notably, 22.7% of the sample were students, with 61.6% studying nursing and 14.4% enrolled in other health-related programs. A substantial proportion of the sample, 71.3% , reported having a family member or acquaintance within the nursing profession. Turning to respondents' firsthand experience in inpatient care, 38.1% did not provide a response to this query, while 27.7% indicated having undergone an inpatient stay within the past decade. However, the entire population that had hospital experiences, 66.2% , reported being satisfied with the treatment received. Out of those who have had experiences as inpatients, 66.2% express satisfaction with the treatment they received. During the pandemic, a significant portion of the respondents, specifically 70.0% , did not perceive an increase in the demand for nursing care. However, within the subset of individuals who availed of nursing services, a mere 43.5% expressed satisfaction with the care received. Turning attention to nursing education, a significant majority of respondents, accounting for 63.8% , are familiar with the nursing curriculum. Furthermore, the level of agreement regarding the training of nurses stands at 81.5% , signifying the prevailing consensus among respondents on this matter. --- Nursing Attitude Questionnaire The internal consistency of the NAQ demonstrates a commendable level , mirroring the robustness of the instrument's measurements. Likewise, the sample size is substantial and exhibits a strong suitability for analysis , as confirmed by a Bartlett's test of sphericity yielding a significance level of <0.0001. Table 1 delineates the NAQ outcomes in relation to sample characteristics, further segmented by geographic origin. Notably, the southern region displays notable variations in most independent variables. The age group of 20-30 years obtains the highest scores in contrast to the 61-70 years age group . Females exhibit a heightened receptivity to the nursing profession compared to their male counterparts . Religious affiliation similarly impacts perceptions, with atheists displaying significantly higher scores than those identifying as Catholic . Among the occupation categories, students manifest a distinctly favorable perception , followed by civil servants and private employees. Conversely, retirees present a markedly lower perception score of 98.30 ± 16.89 . Those within their family who have a relative practicing the profession exhibit a higher perception; the same applies to the southern sample that is aware of the nurse's educational path. Regarding the north and the center, noteworthy discrepancies are absent, with the perception level largely echoing that observed in the south. However, deviations emerge in specific aspects. For instance, within the context of religion, the Catholic affiliation garners the highest scores. Additionally, in the north, retirees exhibit a heightened affinity for the nursing profession compared to other regions. Even satisfaction with the hospital care they received during their last admission appears to be significantly higher for citizens of northern Italy, with an average score of 116.24 ± 13.21 . TV series, news reports, and experiences with nursing care during the COVID-19 pandemic seem to have had a limited impact on altering the perception of the nursing profession across various geographic regions. The observed effects on the image of nurses were not found to be statistically significant in any specific area. The results of the NAQ, categorized by domain, exhibit significant disparities among the three geographic regions. When examining the overall NAQ scores, the north presents the highest values , followed by the center , and finally the south . In the specific domain of the nurse's professional role, no statistically significant differences are observed, with an overall mean score of 38.02 . However, variations emerge in the other domains of the NAQ: Interestingly, the only area where the south scores higher is in the domain of nurses' characteristics , followed by the north . The results reveal statistically significant differences across the three explored geographic areas. In question 2, beliefs about nurses' protective role within the healthcare system vary by region. In the south, 78.5% hold this belief, followed by 77.8% in the center . Concerning the importance of nursing services compared to physicians, 90.4% in the north and 84.4% in the center agree, while in the south, the agreement stands at 57.4% . Disagreement regarding the potential reduction of nurses' education is observed in the center and the north , whereas 34.6% in the south disagree . Perceptions about nurses' potential for political engagement align in the center and the south . Regarding nurses' wages, dissatisfaction is higher in the north and the center , compared to the south . Disagreement about the subordinate status of nurses to medical professionals is pronounced in the north and the center , while only 35.6% in the south disagree . The belief that the nursing profession is not merely a fallback to medicine is shared by 60.8% in the north and 59.1% in the center . The importance of a university pathway for obtaining a nursing degree is agreed upon by individuals in the north , the center , and the south . Significant disagreement emerges regarding the notion that "One of the advantages of being a nurse is to marry a doctor". Respondents in the north express the highest level of disagreement, followed by the center , and the south . Regarding the summary questions "I would recommend a relative/acquaintance to be a nurse" and "I have an interest in choosing a nursing degree program," agreement levels range from 33.3% to 57.1% among the sample. Items with mean values above the 90th percentile corresponded to the following statements: 5. Nurses are a resource for people with health problems; 8. The service performed by nurses is as important as that provided by physicians. Conversely, items with mean values below the 10th percentile corresponded to the following statements: 15. Nurses are sufficiently rewarded for their work by knowing that they are helping other people; 17. Nurses carry out the physician's requests without objection; 19. Many nurses who seek advancement in their professional practice would rather be physicians; 23. Nurses are adequately paid for the work they perform; 27. One of the advantages of being a nurse is marrying a physician. Respondents from northern Italy agreed with the highest values on items with values above the 90th percentile. The same pattern was observed with responses below the 10th percentile, except for the statement "Many nurses who seek advancement in their professional practice would rather be physicians". The sample from central Italy indicated a value above the 90th percentile for the statement "Nurses are a resource for people with health problems". However, this value was lower compared to the northern Italy sample, with a ∆ = -0.16. Regarding items with values below the 10th percentile, respondents from central Italy expressed a value with a ∆ = -0.19, indicating a higher level of disagreement. In the case of southern Italy, based on the parameters outlined in Table 3, the statement with a value above the 90th percentile is "The service performed by nurses is as important as that provided by physicians," with a ∆ = -0.23 compared to northern Italy. As for responses with values below the 10th percentile, the only item pertains to the response asking whether the only advantage of being a nurse is marrying a physician. In this case, the ∆ = -0.74, indicating a higher level of disagreement. Table 4 presents the items and categories for which the greatest differences were observed among the three subgroups. In terms of respondents' general understanding of the nursing profession, no significant differences were observed across different regions of the country. A substantial 92.2% of the sample recognized the vital role nurses play within the entire Integrated Health System . While 90.4% of respondents acknowledged the collaborative relationship between nurses and medical professionals, a noteworthy 47.2% still perceived nurses as secondary to the medical figure. However, a resounding 90.6% recognized the indispensability of nurses within the healthcare system, understanding that their role cannot be replaced by specialized social and health workers . --- Associations Pearson's correlation coefficient revealed a consistent and positive correlation between the various domains of the NAQ and questions one, two, three, four, and six. This indicates that as the perception of the nurse's image improved across these domains, there was a corresponding positive response to questions one, two, three, four, and six. On the contrary, item five, which conveys the notion of nurses as subordinate to doctors and the possibility of replacement by support staff, exhibited a negative correlation with all NAQ domains. Similarly, the question regarding the potential replacement of nurses with social and health workers also showed a negative correlation with all NAQ domains . --- Discussion The study, aimed at assessing the image of nurses in Italy after the COVID-19 health emergency, revealed results largely consistent with the previous literature. The study's outcomes align with a previous investigation, where the degree of perception among students educated through university orientation in nursing curriculum and functions was measured [13]. Interestingly, the current sample across all geographic regions showed overlapping scores with the aforementioned student group. This suggests that media portrayal during the COVID-19 pandemic, casting nurses as "heroes" within the healthcare system, might have influenced the respondents [14]. Both undergraduate and postgraduate nursing education have contributed to enhancing the visibility of the nursing profession, especially during the pandemic. This positive image is believed to have also positively impacted the quality of education for nursing professionals [15]. Over the years, nursing in Italy has transitioned from an auxiliary status to an intellectual profession, aided by legal decrees and access to various degree programs. Notably, the northern Italian sample emphasized the importance of bachelor's and master's degrees in nursing for enhancing patient care and treatment, aligning with the existing literature [16,17]. Across the entire population, ranging from north to south, there is recognition of the added value of undergraduate nursing education for nursing practice and scientific research [18,19]. The population acknowledges the significance of nursing research in improving patient care [20] and perceives nurses as indispensable within the healthcare system [21]. The characteristics and attitudes of humanization and personalized care associated with nursing correlate with gender stereotypes. These stereotypes contribute to the alignment of nursing with qualities often associated with the female gender, further driving individuals toward the nursing profession [14]. However, only half of the sample believes that men can excel as nurses, indicating potential direct or indirect influences from family members, past hospital experiences, or mass media during the pandemic [14]. The study underscores a reevaluation of stereotypes in favor of the nursing profession. The northern and central Italian samples indicated a critical stance against the concept of nurses carrying out physicians' orders without objection. Interestingly, while the nursing profession is seen as autonomous by 66%, 81% perceive it as a job for intelligent individuals, and 83% consider it on par with the medical profession. These post-pandemic findings differ from previous studies [22][23][24], suggesting evolving perceptions. However, concerning overall professional respect, the population remained critical, returning to pre-pandemic values [9,25]. Despite the positive evidence, both the study sample and the literature highlight nursing as a profession with inadequate compensation [9,[26][27][28][29]. Instances of disrespect, autonomy violations, underestimation of professional abilities, and denial of nurses' value in care can lead to dignity violations, negatively impacting job satisfaction and performance [30,31]. Interestingly, only 38.2% of the sample, varying from 45.2% in the north to 20.5% in the center, perceived nurses as satisfied with their work. This finding is intriguing considering the increased demand for nursing services and stress experienced during the pandemic, juxtaposed with heightened nurse satisfaction from helping patients [32][33][34]. Stereotypes portraying nurses as subservient to physicians or replaceable by technical workers negatively correlate with NAQ domains. This suggests that the sample acknowledges the distinct competence of nurses, which is irreplaceable by other practitioners. The study population views nurses as integral to the healthcare system, collaborating with physicians, and recognizing that healthcare would be incomplete without nurses. These findings mirror what was highlighted in the literature during the initial pandemic phase [35]. Despite encouraging results regarding the image of nurses, responses diverge when asked about recommending nursing as a profession to relatives or friends. The sample's responses are divided, with notable positivity observed in the south of Italy. The average Likert scores in these questions are similar to those of a comparable study among students exposed to nursing profiles and skills during a college orientation before the COVID-19 pandemic [13]. --- Study Limitations The present study is not without limitations. Foremost among these is the sampling method, which may not ensure a statistically significant representation of the entire Italian population. Additionally, the reliance on voluntary participation could introduce selection bias, as those who chose to participate may have different perspectives and experiences compared to those who opted not to participate. Another limitation could stem from the timeframe during which the data was collected, post-COVID-19, and from the use of the questionnaire in the Italian language, albeit previously employed in other studies [9,13]. --- Conclusions The persistent stereotype of nurses as predominantly female, inclined towards nursing over a university career, and lacking full autonomy and authority in critical decisionmaking processes remains evident. This perception reflects the ongoing challenges and misconceptions that the nursing profession continues to face. Overall, the NAQ scores did not differ significantly across the three investigated geographic areas; however, some differences emerged in the domains and percentile values. The role and professional values were significantly emphasized in the northern and central Italy samples, where attributing nursing value equivalent to that of physicians and recognizing nurses as a resource for people with health problems were strongly endorsed. In terms of the domain exploring nurses' characteristics, respondents from the south exhibited a greater sensitivity, as well as in the question where nurses and physicians were attributed the same importance. Citizens from northern and central Italy displayed greater sensitivity compared to the southern sample in believing that nurses are inadequately paid, do not aspire to become physicians, and actually view nursing as an autonomous practice. Their disagreement was notable in their perception of nurses as mere executors of physicians' orders. Respondents from the south significantly agreed with those from the north that one advantage of being a nurse is not having to marry a doctor. Therefore, the conducted study highlighted an improved perception of the nurse's image, likely due to the influence of mass media, familial connections with nurses, and previous hospitalizations, especially during the pandemic period. Despite these findings, the attractiveness of the nursing profession remains quite low. This could be attributed to the questionable level of respect that institutions have for the nursing field. The perception of inadequate salary, insufficient political representation, the prevailing association of nursing with the female gender being more inclined toward caregiving than a university career, the lack of respect, and an unsatisfactory nursing work environment all appear to influence decisions regarding recommending or pursuing a nursing education. Given the study's findings, there is an urgent need to introduce educational initiatives, beginning at the school level, that emphasize the significance of nurses' contributions within the national health service. The research demonstrates an improved perception of the nursing profession's image, possibly attributed to media exposure, familial connections to nursing, and prior hospital experiences, particularly during the pandemic. Despite these positive shifts, the profession still struggles with a lack of attractiveness. This lack of allure appears to be connected to concerns regarding the profession's standing within institutions. Perceptions of inadequate salaries, limited political representation, gender biases favoring nursing over higher education, insufficient respect, and subpar working conditions all play a role in influencing individuals' decisions to recommend or pursue a nursing education. Addressing these underlying issues is crucial to enhancing the appeal of the nursing profession and ensuring its continued growth. Educational campaigns and structural changes within healthcare institutions are needed to promote nursing as a valued and respected profession, attracting a diverse range of individuals who can contribute to the betterment of healthcare services. --- Data Availability Statement: Data are available from the first author upon reasonable request. --- Institutional Review Board Statement: The study was conducted in accordance with the Declaration of Helsinki and approved by the bioethics committee of the University of Bologna with prot. 13221 of 8 February 2017. Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. --- --- Public Involvement Statement: The present study was approved by the bioethics committee of the University of Bologna with prot. 13221 of 8 February 2017. Adherence was spontaneous through a special acceptance command on the platform questionnaire. Guidelines and Standards Statement: STROBE checklist.

Background. The COVID-19 pandemic has transformed people's lifestyles by imposing social, economic, and labor changes. Health professionals have been in the spotlight, occasionally even elevated to the status of "heroes", as they have been at the forefront of the health emergency. Media exposure has undoubtedly played a pivotal role in the evolution and perception of the public's image of nurses, especially within the Italian context. Currently, there is only one study conducted in Italy during the pandemic period. For this reason, we have opted to delve further into this subject during the post-pandemic period, with the ultimate goal of identifying this perceptual evolution. Methods. An online snowball sampling survey was conducted among the Italian population using social networks between August 2022 and January 2023. The survey utilized the Nursing Attitude Questionnaire (NAQ) to collect data. Results. The sample consisted of 564 individuals. Among the respondents, 63.8% (n = 360) were familiar with the nursing pathway, and the level of agreement regarding the training of nurses was 81.5% (n = 260). In terms of recognizing the professional role of nurses, variations emerged in certain domains of the NAQ. Specifically, professional values of nurses were more pronounced in northern and central Italy (M = 26.27). Moreover, stereotypes were more prevalent in the north (23.73 ± 3.538) and the center (23.13 ± 4.104) (p = 0.001). Conclusions. The sample acknowledged a unique competence inherent to nurses that cannot be replaced by other professionals. The study population perceives the nursing profession as pivotal within the IHS (Integrated Health System). However, the attractiveness of the profession remains exceedingly low. This study was not registered on a publicly available registry.

INTRODUCTION The prevalence of overweight has increased dramatically in many low-and middle-income countries around the world over the last 5-15 years . Recent cross-sectional evidence suggests that, in the majority of lower income countries, wealthier groups have a higher odds of overweight compared to less wealthy groups . However, within-country time trends in overweight prevalence by socioeconomic status have not been fully explored. Changes in overweight prevalence among SES groups over time are important for anticipating emerging patterns of disease. Several studies suggests that higher SES groups within lower income countries will continue to bear the largest burden of chronic disease. For instance, in India between the years of 1998 and 2006, the increase in overweight prevalence was higher among the wealthiest women compared to the poorest women . Additionally, low SES populations within lower income countries are vulnerable to economic shocks that can effect food security and can leave these populations more susceptible to inadequate nutrition, rather than overnutrition . On the other hand, based on observed relationships in higher income countries and on the persistent associations between low SES and the leading causes of disease in many contexts , some experts have hypothesized that the burden of chronic disease in lower income countries will eventually shift toward lower SES groups within these countries . Faster growth in overweight prevalence among low compared to high SES groups has been documented in Brazil and among women in urban areas of sub-saharan Africa . Further, cross-sectional analysis suggests that among lower income countries, countries with higher national incomes tend to have a greater likelihood of an inverse relationship between SES and overweight . Our study used repeated cross-sectional, nationally representative data on adult women with children from 39 lower-income countries assessed in the Demographic and Health Surveys to: 1) determine the prevalence of overweight and the overweight prevalence difference between low and high wealth and education groups in each survey year, 2) document withincountry time trends for overweight prevalence growth rates between low and high wealth and education groups, and 3) test whether higher national wealth is correlated with a higher growth rate in overweight prevalence for the lowest compared to the highest wealth and education groups. --- METHODS --- Data Sources Data came from the publically available Demographic and Health Surveys , which are nationally representative household surveys administered in lower income countries. The surveys entail repeated cross-sections and are standardized to enable cross-country comparisons . Since our interest was in the time trends in overweight prevalence we included only countries that measured anthropometrics in at least two survey waves. Additionally, earlier years of the DHS survey only collected anthropometrics on women under 50 years old, who had children between ages of 0-5 years, therefore we limited our main analyses to this subgroup to keep the sample population comparable over time. We excluded pregnant women. --- Key Variables Height and weight were measured by trained technicians using standard techniques . Body mass index was used to classify people as obese or overweight according to WHO guidelines . Overweight prevalence was determined for each country, in each survey year, and for each SES group. For wealth, we used the DHS wealth index, which is derived from a principal components analysis of assets . Asset-based wealth measures are considered superior to income in lower-income countries and have been widely used to indicate SES in this context . The wealth index was used to create country-and year-specific quintiles of wealth, which were used as categorical variables in the analyses. Education was categorized based on the educational milestones: <primary school completed, primary school completed, ≥secondary school completed. In Armenia and Kazakhstan, less than 1% of the population did not complete primary school, therefore only primary school and secondary school or more were consider in these countries. To represent national income, we used gross domestic product per capita adjusted for purchasing power parity and inflated to the 2005 international dollar value obtained from the World Bank Development Indicators Database . The log-transformed baseline survey year GDP for each country is used in the correlation analyses. --- Outcomes Analyses were conduced separately by: 1) wealth quintile, 2) education group. Our outcomes of interest were 1) overweight prevalence difference defined by the difference in overweight prevalence between the lowest and the highest wealth or education groups for each survey wave; and, 2) the annualized difference in the rate of overweight prevalence growth for the lowest and highest wealth or education groups between the first and last survey waves. Overweight prevalence difference in each survey wave in each country for wealth quintiles was calculated by: Overweight Prevalence lowest -Overweight Prevalence highest . A positive overweight prevalence difference indicated that the lower wealth quintile had a higher prevalence of overweight compared to the higher wealth quintile. To obtain the annualized difference in overweight prevalence growth rates between wealth quintiles, we took the difference between the change in overweight prevalence in the lowest group over the survey period and the change in the highest group over the survey period -). We annualized this result for each country. A positive difference in prevalence growth rates indicated the lowest wealth quintile had a higher rate of prevalence growth rate than did the highest quintile. We repeat these calculations for lowest and highest education group. We utilize absolute rather than relative effect estimates because there were a number of countries with a very low overweight prevalence in the lowest SES group and a fairly high prevalence in the highest SES group; this meant that small absolute increases the low prevalence groups equate to large relative increases that could not be matched in the high prevalence groups except by tremendous absolute increases. For sensitivity analyses, to assess whether the results would change substantially if we did not restrict to comparable samples , we ran the analyses on the full sample, including women with and without children. We also ran the analyses on age-standardized rates of overweight to control for different age structures between countries . To assess sensitivity across the full distribution of wealth or education, we used the slope index of inequality and change in SII a regression-based measure that assumes a linear relationship between mean disease prevalence and social ranking . Additionally, within the Asian countries in our sample, we performed a sensitivity analysis using the alternative cut-point of BMI ≥23 for overweight . To assess whether national income was correlated with faster overweight prevalence growth rates among the low compared to high wealth or education groups, we used Pearson's correlation coefficient to test whether GDP per capita and annualized difference in overweight prevalence growth rates are correlated. Alpha was set at 0.10 for all analyses and all tests were 2-sided . Sample weights to account for complex survey design were employed. All analyses were performed with Stata --- RESULTS Analyses included data from 421,689 women in 39 countries with 2 surveys per country between 1991 and 2008 . Selected sample characteristics are listed in Table 1. There were four countries in which the DHS wealth index was not available. --- Wealth results Table 2 provides the 1) overweight prevalence for the highest and lowest wealth quintiles in the first and last survey waves; 2) the prevalence differences between the lowest and highest quintiles; and, 3) the annualized difference in prevalence growth rates, comparing the growth in overweight prevalence in the lowest quintile between the first and last survey wave to that in the highest wealth quintile. The vast majority of the prevalence differences are negative , indicating that the highest wealth quintile has a higher prevalence of overweight compared to the lowest wealth quintile overweight prevalence. The annualized difference in the prevalence growth rates between the lowest and the highest wealth quintile assess whether the overweight prevalence increased more quickly for the lowest or highest SES group. Again, in the majority of cases , the point estimate for the difference in the overweight prevalence growth rates between wealth groups was negative, indicating that the overweight growth rate in the highest wealth quintile exceeded that of the lowest wealth quintile. The remaining 11 out of 35 countries have a positive point estimate for the annualized difference in the prevalence growth rate, indicating that the overweight prevalence increased more quickly for the lowest wealth quintile in comparison to the highest. In both cases, the 90% confidence interval around these estimates crossed the null for approximately 50% of the estimates. --- Education results Table 3 displays the 1) overweight prevalence for the lowest and highest education group for the first and last survey waves; 2) the prevalence differences between the lowest and the highest in both survey waves; and, 3) the annualized difference in the overweight prevalence growth rate for the lowest and highest education groups over the survey period for each country. The overall findings for education are similar to those using wealth. As with wealth, the point estimate for the prevalence differences are negative in the majority of cases , indicating that the prevalence of overweight in the highest education group exceeds that of the lowest education group. In 21 out of 39 countries , the point estimate for the difference in the prevalence growth rate between the lowest and highest education group was positive, indicating that the overweight prevalence had increased more quickly for the lowest education group than for the highest education group. In the remaining 18 countries , the point estimate for the difference in overweight prevalence growth rates was negative, indicative of a faster rate of overweight prevalence growth among the group with the highest education. In approximately 50% of the estimates, the 90% CI included the null. --- Comparing wealth and education results Nearly all the countries that had higher overweight prevalence growth rates among the lowest wealth group also had higher overweight prevalence growth rates in the lowest education group . Specifically, of the 11 countries with positive estimates for the difference in overweight prevalence growth rate between wealth groups, Armenia, Columbia, Egypt, Guinea, Haiti, Jordan, Kazahkstan, Morocco, Rwanda, Zimbabwe, Turkey, only Kazahstan did not also have a positive point estimate for the difference in overweight prevalence growth rates by education group. On the contrary, there were 10 countries in which lowest education group's growth rate surpassed that of the highest education group, but the lowest wealth group's estimated growth rate was lower than that of the highest wealth group. These countries were: Benin, Bolivia, Cote d'Ivoire, Ghana, Malawi, Mali, Mozambique, Namibia, Niger, Tanzania. In most of these countries, the prevalence of overweight for the highest education groups either decreased, was stable or increased only to a small degree, while that in the highest wealth groups in these same countries continued to increase, leading to the difference in the findings by wealth and education for these countries. --- Sensitivity Analyses Differences in prevalence gains by wealth and education for the full sample were largely similar in direction and significance to those from the restricted sample , as were the results when age-standardization was employed . In analyses using the SII and change in SII instead of the difference between the highest and lowest SES groups, the results are in the same direction in 99 out of 105 comparisons for wealth and 109 out of 117 comparisons for education . Results using the Asian-specific BMI cutpoints for overweight Asian countries were all consistent in direction with the results using a cut-off point of BMI ≥25 . --- Country-level economic development Country-level GDP was positively correlated with faster prevalence growth of overweight for the lowest wealth quintile r=0.45, but not for the lowest education group . --- DISCUSSION We document time trends in overweight prevalence by SES in a multiregional sample of lower income countries. In the majority of countries the highest wealth and education groups still have the highest prevalence of overweight. However, a trend toward faster overweight prevalence growth rates for the lowest wealth and education groups is apparent in a substantial number of countries. We observed a largely positive relationship between SES with overweight prevalence which is consistent with a historical review and with a more recent analysis by Subramanian et al , both of which use a single time point for each country. Our study contributes additional information by examining changes over time using the same source used by Subramanian et al. to obtain large sample of lowerincome countries. Examining the overweight prevalence growth rates over time, we find that overweight has increased more for the lowest wealth or education groups in a substantial portion of the sample countries. In 31% of the countries , the estimated overweight prevalence growth rate was higher in the lowest wealth quintile. Also, in 54% of the countries the estimated growth rate was higher in the lowest education group. Several studies have examined the time trends in overweight in a single lower-income country or in a region, and both faster and slower growth rates among the poor have been documented. Our findings offer a comparative perspective by analyzing multiple countries and in doing so highlight the heterogeneous patterns of change in the SES-obesity relationship between countries. A number of factors might underlie the propensity for a higher growth rate of overweight prevalence among the lowest wealth and education groups in some lower-income countries. It is possible that low wealth/education groups are just more recently experiencing the same environmental changes that high wealth/education groups experienced 10-20+ years ago. If this is the case, the low wealth/education groups might be experiencing faster prevalence growth rates now, but these could slow when they approach the absolute prevalence of the high wealth/education group. On the other hand, the differential prevalence growth rates could reflect a difference in SESspecific response to current conditions. Increased medical knowledge and concern about obesity and/or stigma around larger body sizes may lead higher SES groups to begin to respond to the changing conditions to slow their overweight prevalence growth rate. To test whether the phenomenon is more likely a result of a difference in timing of exposure or a difference in response would require future observations to see if the prevalence in low wealth/education groups eventually surpasses that in high wealth/education groups. A few differences in our findings were noted according to whether wealth or education was used as the indicator of SES. Specifically, there were 10 countries in which the overweight prevalence growth was faster in the lowest education group, but was not faster in the lowest wealth quintile . In most of these countries, the prevalence of overweight for the highest education groups either decreased, was stable or increased only to a small degree, while that in the highest wealth groups in these same countries continued to increase. Differences in result might stem from a variety of sources, including the diffence in the type of measure, since wealth is a purely relative measure based on quintiles, while education is based on milestones. Since these are repeated cross-sectional surveys, a decrease in the overweight prevalence among the highest educated females over time in these countries could be due to a secular trend toward lower BMIs in higher educated women, , an unintentionally different sampling frame between surveys, and/or differential migration by BMI. Additionally, across the countries, faster overweight prevalence growth rates among the lower wealth groups was positively correlated with GDP, which is consistent with reports of inverse relationships between SES and overweight among relatively higher income nations . However, we did not observe a similar association using education versus wealth. We further explored country-level correlates of disproportionate overweight prevalence growth by SES in a subsequent paper . Limitations of our study should be noted. To maintain sample comparability over time, we limited our sample to women with children under 5 years old; however, we observed generally similar findings across the full sample. We used both income and education measures to maximize comparability with other studies. We focus on the difference in overweight between the highest and the lowest wealth quintile and education level for our primary analyses, which ignores changes in the middle of the distribution; however, we observed consistent findings using a more complex, regression-based measure of inequality, the slope index of inequality. --- Conclusions We observe that although the prevalence of overweight is still currently higher in highest wealth and education groups, the overweight prevalence growth rate in the lower wealth and less educated segments of the population has surpassed that of the higher wealth and education groups in many countries. These findings have important implications for future trends in the social distribution of risk factors for chronic disease in lower-income countries. --- Key Messages Using the Demographic and Health Surveys, in 39 low-and middle-income countries, among a large sample of mothers aged 18-49, the highest wealth and education groups still have the highest prevalence of overweight in the majority of countries. We find evidence that the prevalence of overweight has increased faster for the poorest quintile compared to the wealthiest in 31% of the countries. In 54% of the countries examined, the overweight prevalence increased faster for the least educated compared to the most educated groups. Gross Domestic Product per capita was positively correlated with faster overweight prevalence growth rates for the poorest compared to the wealthiest quintile. However, there was no evidence of a correlation between GDP and faster overweight prevalence growth for those with the lowest compared to those with the highest education. Int J Obes . Age-standardization was performed by the direct method using the World Health Organization world standard population for the age structure . --- Table 2 Overweight prevalence in lowest and highest wealth quintiles for first and last survey year in each country, overweight prevalence difference between lowest and highest wealth quintiles for first and last survey year, and difference and annualized difference in overweight prevalence growth rates over the survey period between the lowest and highest wealth quintiles. -11 subtracted from that in least educated group in each year, so that negative numbers for the prevalence difference indicate a higher overweight prevalence in the most educated education group while positive numbers indicate higher overweight in the lowest education category. Annualized difference in prevalence growth rate is change in prevalence over the survey period for the most educated group subtracted from that in the least educated group divided by the number of years between the first and last survey years in each country. Negative numbers indicate faster overweight prevalence growth for the most educated group in comparison to the lowest, while positive numbers indicate faster overweight prevalence growth for the lowest group. The least educated group consists of subjects who report no formal schooling completed, expect in Armenia and Kazakhstan where less than 1% of the population reported no formal schooling, so the lowest education group in these countries consists of subjects who report completing primary school only. --- Supplementary Material Refer to Web version on PubMed Central for supplementary material.

Background-Overweight prevalence has increased globally; however, current time trends of overweight by social class in lower income countries are unknown. Methods-We used repeated cross-sectional, nationally representative data from the Demographic and Health Surveys on women aged 18-49 with young children (n=421,689) in 39 lower income countries. We present overweight (body mass index ≥25) prevalence at each survey wave, prevalence difference and prevalence growth rate for each country over time is presented separately by wealth quintile and educational attainment. We present the correlation between nation wealth and differential overweight prevalence growth by wealth and education was estimated. Results-In the majority of countries the highest wealth and education groups still have the highest prevalence of overweight and obesity. However, in a substantial number of countries (31% when wealth is used as the indicator of SES and 54% for education) the estimated increases in overweight prevalence over time have been greater in the lowest compared to the highest wealth and education groups. Gross Domestic Product per capita was associated with a higher overweight prevalence growth rate for the lowest wealth group compared to the highest (Pearson's correlation coefficient: 0.45). Conclusions-Higher (versus lower) wealth and education groups had higher overweight prevalence across most developing countries. However, some countries show a faster growth rates in overweight in the lowest (versus highest) wealth and education groups, indicative of an increasing burden of overweight among lower wealth and education groups in lower income countries.

Introduction Mulk Raj Anand ) believes that human beings are the ultimate proprietors of their societies and searches for an equitable and progressive India, devoid of social evils perpetrated in the name of religion, customs, and traditions. His creation Bakha represents the universal outcry of Dalit people around the world, specifically the identity crises of Indian subaltern population. Bakha is not merely a human figure in an Indian colonial and racial setting; he is an embodiment of the scream of the Dalits who are always plagued with an inferiority complex. In light of Anand's Untouchable , this paper investigates the influence of powerful people on the psychology of the marginalised. It delves into the complexities of the Dalit identity dilemma which is exacerbated by society's religious boundaries and unjust rituals. To explore the dynamics of Dalit psychology, this article bases its discussion on Untouchable and explicates themes like the caste system, dual identity, inferiority complex, and the snobbery of the higher social classes by applying the constructs and theories of mimicry, ambivalence, hybridity, psychoanalysis, and post-colonialism. Exploited and psychologically broken, the Dalits belong to the lowest caste and are deprived of basic human rights. They are the Avarna people in the Hindu Varna system or caste-based social stratification. That is to say, they do not belong to any of the four Hindu castes: Brahmins, Kshatriyas, Vaishyas, or Shudras. They are considered untouchables and polluted in the indiscriminate Varna system of the Hindu religion. The oppressed and marginalised Hindu communities are referred to as Scheduled Castes in article 341 of the Indian Constitution. Similarly, in article 342, the oppressed and diasporic tribal people are referred to as Scheduled Tribes. The Dalits are known as Bhangis , Harijans, untouchables, and outcastes who are compelled to engage in menial labour. There are multiple Dalit communities in different countries of the world. The table below lists some of them: Bakha, the protagonist of Anand's novel, is the representative of all down-trodden people in pre-independence India. He is a universal figure at the receiving end of oppression, injustice, and humiliation. He symbolises the hardships and humiliation that the Dalits in India encounter as a result of their lower social status . His identity dilemma is acute throughout the novel Untouchable since he is subjected to hatred and racial discrimination. Through the presentation of Bakha, Anand has described the miserable fate of the Dalits who undergo numerous forms of injustice and mistreatment in society. Sunmugam et al. have described how the caste system and colonialism have contributed to the complication of Dalit identity in contemporary society. The nature of people's jobs, therefore, defines their caste and identity in society as higher, lower, or untouchable . The disadvantaged, downtrodden, and untouchable communities are presented as less prestigious, underprivileged, polluted, illiterate, and uncivilised and are detached from the upper class . Domination is one of the mentionable themes in the novel that deals with different types of exploitation-social, economic, political, cultural, religious, and sexual . There are cultural differences between India and the Western world. When Bakha is subjected to cultural discrimination by members of his community, he becomes fascinated by, and turns to, Western culture. Bhabha argues that "the signs of cultural difference cannot then be unitary or individual forms of identity because their continual implication in other symbolic systems always leaves them 'incomplete' or open to cultural translation" . Bakha wants to get relief from the Hindu caste system and social insecurity and seeks refuge in the British lifestyle. When his national cultural identity fails to provide him with social justice and security, he deconstructs the concept of "Indianness" to expose the negative practices of Indian culture that incorporate certain unacceptable values, customs, and sentiments . Bakha's national culture generates identity uncertainty and psychological trauma among its minor citizens. The Dalits are deprived of fundamental rights such as food, clothing, habitation, health, and education . Such marginalised communities are oppressed in different ways and do not have equal access to educational institutions, playgrounds, religious places, wells, streets, shops, and healthcare centres . They are not allowed to enter the temple because their presence supposedly pollutes the 'sacred' place. Because of this pollution complex, they are unable to take water from wells used by members of the upper castes. Numerous justifications are given in support of the caste system in the modern world as well. It reinforces the division of labour among people in society as if there is nothing wrong with this division of labour . The plight of the Dalits is made worse by inhumane religious rituals. The Hindu religion adheres to certain rituals, beliefs, and ideals as well as an anti-social spirit that perpetuates caste divisions . Thus, religious ideologies create divisions among people, and the Dalits suffer considerably as a result of unjust religious norms. According to Sawariya, the Dalits are mentally depressed and discrimination in society gradually makes them vulnerable and afraid . Jadhav et al. have conducted a survey of Dalit individuals in several Indian states and have found that caste prejudice has both psychological and cultural consequences. The stigma of untouchable identity impacts the inner psyche of the Dalits who are excluded from everyday social life. --- Bakha and the Indian caste system Anand has efficiently outlined the cruel scenario of racial hatred and caste complex in the Hindu religion. Bakha is a victim of this social custom which has traumatised his mental stability. He encounters restrictions from society and its people due to his lower-class identity. As the narrator in Untouchable says: "These old Hindus were cruel. He was a sweeper, he knew, but he could not consciously accept that fact" . The caste system brings psychological suffering to Bakha, and he is unwilling to accept the system that creates binaries and divisions in society and culture. The prevalent caste system deprives him of going to school, playing, and socialising with others beyond his Bhangi community, as his father warned him saying, "schools were meant for babus, not for the lowly sweepers…. He was a sweeper's son and could never be a babu" . Bakha has been subjected to negligence since childhood, and several questions arise in his innocent mind about his birth as an untouchable child, his job, fate, and social structure. Bakha's psychological suffering intensifies his identity crisis as he is not satisfied with his position, and this leads to hatred and negligence of his own community. The readers can feel his inner agony: "For them I am a sweeper, sweeper-untouchable! Untouchable! Untouchable!" . Bakha himself also despises his profession due to the maltreatment of others. The Hindu religion, as depicted in Untouchable, creates social divides and acts as an ideological state apparatus which can be oppressive. Physical contact with the Dalits is a sin according to the Hindu Shastras even though hypocritical priests often molest Dalit women. In the story, Pandit Kali Nath is such hypocrite who utters "Polluted! polluted!" when Bakha puts his footstep on the temple stairs. However, this same faux pundit attempts to molest Bakha's sister, Sohini, forgetting the religious Shastras. What Ambedkar says in this regard is worth mentioning: The profession of a Hindu priest is the only profession which is not subject to any code. Mentally a priest can be an idiot, physically a priest may be suffering from a foul disease, such as syphilis or gonorrhea. Morally he may be a wreck. But he is fit to officiate at solemn ceremonies, to enter the sanctum sanctorum of a Hindu temple and worship the Hindu God. Though these religious swindlers show that they are ardent followers of religion, ethics, rituals, and the caste system; but they do not hesitate to molest women of lower castes. The situation is still the same since sexual exploitation of Dalit women and girls has increased significantly in India during the Covid-19 pandemic . It seems that Dalit women are legitimate sexual targets of upper caste people. In most cases, violence against them remains unrevealed and unreported and justice is rarely ensured . Bama's novel Karukku also portrays the miserable condition of Dalit women in a patriarchal and caste-based society. Because of poverty and hunger, they are compelled to conduct all kinds of filthy jobs to serve the upper castes. Dalit women are subjected to sexual abuse and exploited by the upper castes at workstations and homes as well. Bakha hopes that a sense of humanity will eradicate discrimination from society and bring some solace to the Dalits. He questions the hypocrisy of pseudo-religious preachers who use false categorizations to cause social chaos and conflict. He learns from a priest that the merciful Jesus Christ regards Brahmin and Bhangi as the same. However, when the same priest's wife chastises her husband for having the black sweeper Bakha with him, it raises questions in Bakha's mind regarding Christianity. If the priest's wife believes in racism, then how can he become a preacher of a religion that believes in equality and mercy? Bakha wants a massive change in the existing religious systems. Mahatma Gandhi wanted to uproot untouchability from society by changing the nature of the cleaning profession. Gandhi's statement is explored by Anand that the untouchables are basically cleaning up the Hindu religion and society but others are unable to accept it . Ambedkar, however, adds a different view emphasising the importance of taking some socio-political steps to eradicate the caste system in society. He refers to the Hindu religious Shastras as the source of the predicaments of this caste system . The upper-class Hindu communities consider their rituals and beliefs sacred, whereas the Dalits are treated as minors, which reinforces India's social and religious taboo of untouchability. So the caste system which creates an inhuman racial boundary to dominate others is to be totally abolished. --- Inferiority complex and ambivalent identity Anand has concentrated on caste divisions and the psychology of the lower-class people who are victims of the caste system of Hinduism. Bakha has encountered class domination and prejudice in his religion. Hinduism is one of the world's oldest religions in which the caste system has been very prevalent, generating identity confusion among lower caste people. This crisis is palpable in Bakha who is not satisfied with his social standing because social hierarchy continues to have a strong influence on identity consciousness. Fanon has described how the difference among races creates a "psycho-existential complex" among people . It happens in Bakha's case too, as he is a victim of local prejudice and colonial racism. A person may find themselves in an inferiority complex and "thrust into a neurotic situation" when a society maintains the superiority of a particular race or group . Discrimination in religion and culture among people of the same religion causes immense suffering for members of the lower castes in India that has sustained the caste system. Besides, the native Indians faced social and cultural domination because of the presence of the British colonisers and the newly established rules. The Dalits are puzzled and confused about their cultural identity due to this dual domination. They suffer from a superior-inferior complex that can be defined as follows: The feeling of inferiority of the colonized is the correlative to the European's feeling of superiority. Let us have the courage to say it outright: it is the racist who creates his inferior. Bakha's over-enthusiasm for British clothes and way of life causes him to suffer from an existential predicament. As a member of the Dalit community, his experiences have contributed to his traumatic psychological condition. Similarly, all the lower caste people are abused psychologically, socially, and culturally. Bhabha employs the terms 'mimicry,' 'ambivalence,' and 'hybridity' to describe the condition of the natives who always try to imitate their so-called selfannounced master. People sometimes try to copy Western culture, religion, accent, dress, food habits, walking style, etc. But they are inherently habituated to those of their indigenous culture. They cannot completely mimic other cultures, so they are stuck in an ambivalent status where they are in between the other culture and their own culture. The natives are unable to imitate the master but they continuously try consciously or subconsciously to do so. Bhabha argues that "colonial mimicry is the desire for a reformed, recognizable other" and "the discourse of mimicry is constructed around an ambivalence" . This imitation has a significant psychological impact on the Dalits who are victims of the social class system. These people remain ambivalent and vulnerable like Bakha who is always busy with himself looking like a sahib or white government official. When people lose their cultural identity and try to incorporate other identities, they gradually lose their originality. This situation generates "illusions and misunderstandings that only a psychological analysis can place and define" . The coloniser's culture influences the colonised psyche in such a way that the natives willingly accept the putative cultural superiority of the coloniser. Bakha always desires to play with a hockey stick and wants to wear clothes, preferably suits, to look polished like the aristocrats. At the same time, he becomes fascinated by the English language and culture. His ambivalent condition is voiced through these lines: He had been told they were sahibs, superior people. He had felt that to put on their clothes made one a sahib too. So he tried to copy them in everything, to copy them as well as he could in the exigencies of his peculiarly Indian circumstances. The downtrodden constantly attempt to prove their worth by adopting a dominant lifestyle and culture to gain identity and social standing. Bakha finds it difficult to fully follow them and, at times, to retain his own cultural values. He is in a double-coded condition, attempting to reclaim a new identity from the past. Bakha's own religion does not provide him with honour, identity, or prestige; and thus he develops fascination for the culture of the sahib. The way of life of the upper class may not always be acceptable to the natives who cannot pass their judgement due to their social condition, as Anand illustrates through Bakha's words: But he himself had been ashamed at the sight of Tommies running naked to their tub baths. 'Disgraceful', he had said to himself. They were, however, sahibs. Whatever they did was fashun [fashion]. The sahibs call the native Indians kala admi and dislike their ablution system. Ironically, the sahibs also do things that are disliked by the natives, but this sentiment remains unexpressed because the former are the rulers. The oppressor often cannot understand the sentiments and nature of the "oppressed nation and its culture" . The colonised person is compelled to admit his cultural inferiority and to "recognize the unreality of his 'nation' and in the last extreme, the confused and imperfect character of his own biological structure" . The discriminatory attitudes of the coloniser force people to feel inferior psychologically and to mimic others, making them ambivalent and hybrid. --- Double colonisation of the Dalits When the Dalits try to copy either the colonial masters or the native upper caste people, they receive mockery from both. When the so-called upper class faces single colonisation, they become hybrid in their attempt to imitate the coloniser, whereas the Dalits confront twofold colonisation and become comical in their attempt to imitate those who occupy higher social positions. People living under colonial rule and to what extent their psychology is influenced by their colonial masters have been discussed by Bhabha: It is from this area between mimicry and mockery, where the reforming, civilising mission is threatened by the displacing gaze of its disciplinary double, that my instances of colonial imitation come. The colonisers are successful in establishing their influence on the colonised psyche and in changing their cultural heritage using social racism, division, and hatred. In this process, the Dalits face dual domination in a racial and colonial society. The coloniser considers the natives of other lands 'savage,' 'barbarian,' 'uncivilised,' etc. and want to Westernise those people as part of their civilising mission. Similarly, the upper castes of India also maintain the same ideology of the we-they binary and separate their habitations from the abodes of the Dalits. In the Indian caste system, upper-class Hindus consider themselves superior to the Dalits, which is similar to the Orient-Occident dichotomy. The Dalits cannot touch the upper caste people and they live in a different colony known as the outcastes' colony. Anand says: "There lived the scavengers, the leather workers, the washermen, the barbers, the water-carriers, the grass-cutters and the outcasts from Hindu society" . The misery of the outcastes is beyond description. The Dalits have to maintain both the colonial rules as well as the rules set by the upper castes. Anand illustrates this situation both as an Indian and as an observer of the caste system. As Forster testifies: Untouchable could only have been written by an Indian, and by an Indian who observed from the outside. No European, however sympathetic, could have created the character of Bakha, because he would not have known enough about his troubles. Anand discusses class struggle and the caste system which are two major problems in India. The caste system is prevalent in Hinduism and different castes exist within the same religion. Thus, people are oppressed by this divide and rule system. Members of the untouchable class are always in fear because of this dominant racial hatred. Their psychological suffering worsens, given their miserable state of life and the privileged lifestyle of the aristocrats. Moreover, the colonial rule creates terror in the natives' minds and it also creates an evertormenting ambivalence as evident in Bakha. Thus, the Dalits confront two forms of domination in society-colonial domination and caste prejudice. Spivak has mentioned a variety of groups including dominant foreign, dominant indigenous on a national level, dominant indigenous on regional and local levels, subaltern classes, etc. that "represent the demographic difference between the total Indian population and all those whom we have described as the elite" . She poses an important question of whether or not the subaltern or dominated group has the right to raise their voice. Bakha expresses his frustration with the unjust social system and utters in agony: "They think we are mere dirt because we clean their dirt" . Bakha is a witness to the continuous oppression, hatred, racism, and class distinctions prevalent in society. In his preface to The Location of Culture, Bhabha mentions lines from Prakash Jadhav, a Dalit poet who writes: Hey, ma, tell me my religion. Who am I? What am I? A similar kind of agony is observed in Bakha who also suffers from the same identity dilemma. He thinks about Hinduism and Christianity but is unable to understand which religion accepts members of the 'Bhangi' community as equal human beings. He also questions the gods in temples since they cannot annihilate the caste system. --- Manifestations of Dalit psychology The Dalits are underprivileged communities deprived of all kinds of social, political, economic, religious, cultural, educational, and healthcare rights as citizens of a country. Born and brought up into the Mahar caste, one of the untouchable castes in India, B. R. Ambedkar ) was the pioneer in establishing the rights of the Dalits. The cobblers, the scavengers, the bohemians, the chandalas, the chamars, and the tribals are still considered untouchables, minors, and outcastes in most South Asian countries. In post-independence India, although several human and social rights have been ensured in the Indian Constitution, there is still discrimination; and social fundamental rights are not equally established. India's discriminative medical facilities severely affect Dalits' health. During the Covid-19 pandemic, the marginalised groups have become the worst sufferers of unequal healthcare service in India since they are deprived of healthcare facilities . Ambedkar asserts that Marxism, liberal humanism, bourgeois humanism, republicanism, and other ideologies cannot bring any change to the fate of the untouchables. All of these grand ideas and 'isms' fail to provide any solution to the problems of the underprivileged people . The social and religious boundaries do not allow Dalits to interact with the upper castes since there is a restriction of pollution-complexity for them. Inter-marriage, inter-dining, inter-playing, inter-schooling, and interworshipping are prohibited for them. Though Anand is a member of the Kshatriya caste, given his liberal upbringing, he had the opportunity to play with the sweeper boys and observed their sufferings very closely. In colonial India, the Dalits encountered double discrimination-the dogmatic attitude of the high caste and the colonial mistreatment of white racism. After independence, the constitution announced the social privileges of the untouchables. In articles 15 and 17 of the Indian Constitution, untouchability and racism had been abolished . It annihilated untouchability but there is no practical implementation of this constitutional law. India fails to secure the human rights of the Dalits who experience social degradation throughout their life. However, many Dalits change their religion to get rid of this social prejudice, yet, in most cases, their previous Dalit identity continues to haunt them. Thus, there are Muslim, Christian, and Sikh Dalits besides Hindu ones . They are the victims of deeply rooted social rituals and man-made unjust laws. Their identity seems to be determined by the existing class consciousness of the Hindu community and the rules of the Hindu Shastras. The fear and sufferings of Bakha and his community raise the feeling of the uncanny, which refers to frightening objects that remind us of familiar things . Bakha is aware that his community is the neglected one, yet he feels distressed when he comes across similar negligence and oppression. According to Freud, the uncanny is the mark of the return of the repressed . In Anand's representation, Bakha is found unintentionally touching a man while walking on the road and is punished because he does not warn the man of his coming by uttering, "posh posh sweeper coming" . The man shouts at him saying, "Ohe, you son of a dog!" , "careless, irresponsible swine" , and so on. His food item, jalebi, falls from his hand after being slapped by that man. It becomes more heart-touching as he is hungry and about to eat it. In another episode, Bakha sits on the doorstep of a Brahmin woman who scolds him saying, "You eater of your masters" , "May you die" for polluting that house. In a different scene, Bakha gets humiliated in the temple by the worshippers and the priest with the words, "Get off the steps, you scavenger!" . He cannot play with other children because of this pollution complex. If he touches the babu's children, they become polluted. Similar happenings recur, and these create uncanny feelings in him. Though he is familiar with this hatred and oppression, he becomes traumatised each time he faces those situations. Bakha's father, Lakha cannot protest due to this fear of pollution-complex and he does not allow Bakha to protest either stating, "They are our superiors" and later "They are our masters" . Thus, the submissive Dalits accept the fact that they are born as outcastes and have to die as outcastes because of their inferior identity. Marginalised people are often instilled with a sense of violence and courage to protest against the established constructs as a result of continuous repression and oppression. Thiong'o's characterizations of Wanja, Munira, Karega, and Abdullah in Petals of Blood are worth mentioning here. These characters protest against injustice and oppression through constructive violence. In addition, in a short film, the character Nangeli rebels against the existing caste system and the restrictions imposed upon lower caste women who must pay tax to have their breasts covered, otherwise, they must expose their breasts publicly. Nangeli, a Dalit woman, protests against this discriminatory ritual by cutting her breasts and giving those to the rule makers as breast tax . Anand's young protagonist, Bakha also wants to rebel against the Pandit of the temple but he is unable to do so partly because of his father's warning. --- The traumatised psyche of the marginalised The identity crisis of the Dalits has been observed in different writings, films, documentaries, and reports represented by writers and human rights activists over time. It is evident that the sufferings of these people are ceaseless and they enjoy trifling benefits from society. They have to succumb to the powerful sections of society, often in terms of their body, status, money, land, and service. Thus, lower status, ambivalent identity, and lack of belongingness are the constant scenarios that remind us of Shakespeare's ) universal characterizations of Shylock , Othello , Caliban , Emily Bronte's Heathcliff , and Khaled Hosseini's Ali, Hassan, and Sohrab . Shylock is humiliated because of his Jewish identity which eventually makes him revengeful. Similarly, Othello undergoes an inferiority complex for his Moorish identity and Caliban receives domination due to his beast-like features. Thus, Shakespeare depicts the issue of racism to represent the theme of oppression towards the marginalised section. Bronte's Heathcliff also suffers from a racial complex having a black complexion and a Moorish orphan identity. In Hosseini's work, Ali, Hassan, and Sohrab were deceived, neglected, tortured, and traumatized due to their Hazara identity. All of these characters undergo similar psychological trauma like Bakha who continuously suffers because of social stratification and the pollution complex. Social discrimination of the 21 st century has been depicted in a Bangladeshi drama , Sweeper Man in which the so-called gentlemen cannot accept the fact that a sweeper's daughter can be taught in the same school with their children. It shows that a couple of sweepers have to hide their identities to send their daughter to a good school. Socially imposed hatred and negligence make people feel inferior and later violent and revengeful as observed in the cases of Shylock, Othello, Caliban, and Heathcliff. Society raises a sense of inferiority complex among them and they turn into psychologically fragile people. The Othello syndrome and Heathcliff's psychological abnormalities are the outcomes of this social racism. Omprakash Valmiki depicts the social exploitation of the Dalits since his Chuhra community was oppressed by the upper caste Tyagas. For survival, the Indian Dalits had to consume joothan of the upper castes. Valmiki foreshadows the picture of society's maltreatment of them as if Dalit children, pigs, and dogs live in a parallel way. The caste system is a conspiracy to trap people in the "whirlpool of inferiority" . He portrays optimism through a progressive shift of fate by being educated with great efforts, hardships, and struggles. Bakha also struggles for his survival and wants a positive change to the outcastes' fates. In the preface to Karukku, Bama expresses her agony by saying: "There are dalit hearts like mine" . She observes the ill-treatment of the upper caste towards the Dalits and questions society and its rule-makers: "Are Dalits not human beings" ? Similarly, Valmiki exposes his inner turmoil, asking: "Why does caste superiority and caste pride attack only the weak? Why are the Hindus so cruel, so heartless against Dalits" ? These Indian writers are the true observers of the caste complex as they belong to the Dalit community. The Dalits undergo true suffering but their stories always remain unconcerned and clandestine. Later, several writers such as Ambedkar, Valmiki, and Bama started narrating their experiences to inform the whole world about the unjust laws and social prejudices of the Hindu caste system. Similarly, notable for his portrayal of the sufferings of the poorer castes in his writings, Anand, presents the miserable fate of the untouchables. There are several minority communities all over the world and most of those people are oppressed physically and psychologically. Still, in the twenty-first century, minority groups are being oppressed. The Uyghur Muslims, the Rohingya Muslims, and the Black minorities are textbook examples of ethnic cleansing and genocide. There are many incidents of black people being harassed, strangled, and killed by law enforcement agencies in developed countries. The incident with George Flyod in the United States and his utterance, "I can't breathe" is an example of the exploitation of black people . These marginalised people who experience oppression in society are similar to the Dalits. Racism divides people and oppresses them in every possible way. The table below presents worldwide Dalits who suffer from social domination, prejudices, and negligence due to their lower-class identity: It has been observed that the lifestyle, nature of profession, and social prejudices against Dalits are almost identical everywhere. --- Conclusion Bakha is a spokesperson of all Dalit communities whose identities are constantly in flux since people like him suffer from social inferiority and identity dilemma as a result of double domination. The identity confusion leads him to a vulnerable condition and he always tries to find a way to get out of it. Anand has successfully portrayed the traumatised child psyche originating from the heinous caste system, racial hatred, elite hierarchy, and white supremacism. Bakha wants to be content with his religion, race, class, social position, and job, but the entrenched social divide does not allow him to be so. It constantly reminds him of so-called untouchability, the source of agony and identity crisis for Bakha in particular, and the Dalits in general. In this transient life, it is important that we have compassion and tolerance for fellow human beings. Unfortunately, those in power use their authority to manipulate others and stall positive changes in society. It is the hypocrisy of the vested interests that engenders and sustains racism, hatred, and class disparity in society to exploit the deprived. The untouchables are still excluded and isolated beings who are yet to receive equal human dignity and rights, as unjust racial binaries and restrictions spoil social harmony and tear down the psychological stability of the oppressed class. We all need to work to transform this planet into an inclusive place where equity and freedom will prevail. We share one planet and the Dalits are not aliens here. The caste system and blind rituals deprive them of all facilities and compel them to live in deplorable conditions, which is the cause of their mental suffering. This world could have been free from binaries and boundaries since nature treats everyone equally, as the Covid-19 pandemic has shown.

The Indian English-language writer Mulk Raj Anand depicts psychological crises of the subaltern through the character of Bakha in his masterpiece, Untouchable (1935). He attempts to portray the psychological vulnerability of the outcastes of society through the depiction of the Dalit community. This study explores the true nature of Dalit psychology through discussing Bakha's equivocal status as a result of social discrimination and racial binary. It analyses the multifaceted dominations that the so-called elite class imposes on the subordinates who have taken these appalling social conditions for granted. Although not drawn from Dalit literature, a theoretical and critical reading reveals that William Shakespeare's Shylock, Othello, and Caliban, Emily Bronte's Heathcliff, Khaled Hosseini's Ali, Hassan, and Sohrab bear significant resemblance to Bakha in terms of identity confusion. Using analytical methods drawn from postcolonialism and psychoanalysis, this article seeks to discuss Bakha's psyche as a representation of the plight of the oppressed and Dalit people.

Introduction A Neonatal intensive care unit with single-family rooms opened at Drammen Hospital in 2012 as a replacement for the traditional open bay unit. The implementation was thoroughly planned and led by the NICU management. However, in retrospect, we did not anticipate the extent to which the new physical facilities would influence our ways of working. Welcoming parents to stay with their infant 24 h per day, seven days per week, was both challenging and inspiring. Family-centered care is increasingly perceived as an important part of neonatal intensive care. The philosophy of FCC is defined by four core elements, Respect, information sharing, participation, and collaboration , and is generally accepted as the working platform for NICU professionals. However, the degree of implementation of FCC may differ significantly between units [1][2][3]. A NICU culture may build upon values according to the FCC philosophy independently of the physical facilities; however, the design of SFR provides a more beneficial, stress-reduced environment for infants and the opportunity for parents to stay with their infant in more private accommodations during the entire hospital stay. The starting point for planning our SFR unit was the reorganization of preterm infant patient flows within the health region, which led to a 50% increase in patient volume. The unit expanded from 12 to 17 beds and currently receives 450 admissions per year from four hospitals. The unit provides care for all infants born with a postmenstrual age from 28 weeks within their hospital referral area. Preterm infants younger than 28 weeks are born at the university hospital, and they are transferred to our unit when they are in a stable condition. The expansion led to a large economic investment of NOK 46 million . At the time, there was a lack of clinical evidence of the positive impact on the infant and family in SFR design. Therefore, the management team, led by the senior consultant, had to convince the hospital board and politicians to allow such a large investment. Arguments in favor of the SFR were based on previous experiences of increased parental presence when we placed adult beds beside the incubators in the open bay. The main reasons for promoting and building an SFR unit was the potentially severe consequences of separating infants from mothers, as well as the acknowledgement of infants' fundamental human right to be close to their parents [4]. When parents are allowed unrestricted access to their infant, they can participate more actively in shared decision making at an informed and competent level, based on their knowledge of their infant. Parents were to be perceived as an acknowledged partner in their infant's treatment and care and not as visitors. A careful overall description of the medical treatment and care and family support provided in SFR is limited in previous research reports [5]. Thus, our 10 years of experience with SFR may be helpful and inspiring to others. Although the implementation of SFR was performed according to the Plan-Do-Study-Act framework, this paper does not provide a complete systematic evaluation, but rather, it provides a description and discussion of some significant elements in the implementation process. The aim of this paper is to describe the implementation of SFR and how it has contributed to change our mindset and ways of working. --- Milestones In retrospect, we wish to identify important milestones towards care and medical treatment guided by the needs of preterm and ill infants. During the early years of the new millennium, a renewed focus on attachment emerged, which yielded new knowledge on how infants' early attachment experiences shape their understanding of the world and themselves. A great number of studies have documented the effect of various programs aimed at sensitizing parents to their preterm infant's signals, thereby increasing attachment and interaction [6][7][8]. The initial significant milestone was reached in 2004, when the NICU in Drammen became the first Norwegian unit to implement an early intervention program with a theoretical framework based on the Vermont model [7,9]. An interprofessional project group [10] led by a child psychologist developed a program that was customized for our unit. A local guide for the interpretation of preterm infants' behaviour and the supervision of parents in supporting their infant was developed . The program generated insights into how well infants communicate with their parents when given the opportunity. The next milestone was increased knowledge of the benefits of skin-to-skin care [11][12][13]. The parents were encouraged to care for their infant skin-to-skin when they visited the unit. Comfortable chairs were provided to the parents, but there was still limited space and a lack of privacy. In 2008, a group of nurses travelled to Uppsala University Hospital in Sweden to learn how to instruct parents in carrying their infant in a kangaroo shawl, but no systematic implementation took place at the time. One year later, we shifted to a more family-friendly philosophy by implementing a structured visitation program for siblings [14]. The intention was to ensure that siblings were welcomed to the unit by the nursing staff with age-appropriate communication and interaction, characterized by knowledge and adjusted to each sibling's developmental level. Another important milestone was reached in 2010, when the unit made space for an adult bed beside the infants' cot or incubator. We wanted to provide a place for parents to rest, feed their infant, and have skin-to-skin contact . Our immediate experience was that parents who had access to a bed stayed in the unit for longer periods of time during the day and even during the night if allowed by the nurses. --- A Minimal Handling Strategy The unit has practiced a 'minimal handling' strategy since early 2000. The concept of minimal handling is often referred to, but there is no specific definition of the term in the literature. A minimal handling strategy strives to avoid 'overdiagnoses' and 'overtreatment', which entails that there are no routine tests or procedures performed without critical reflection. The physicians are instructed to ask three questions before they perform a diagnostic test: Is it likely that the result will change the current treatment or clinical judgement of the infant? Do the parents or neonatologist want to know the result of the test? Does the result justify the risk of complications? The number of diagnostic tests performed per patient are registered and used actively as an indicator of quality. In addition, we focus on ordering the right samples. Packages of tests are avoided as much as possible, as the neonatologists' aim is to target the problem and reflect upon the indication for sampling. The benefit is a reduced number of punctures, with a decreased amount of stress and pain for the infant, less blood volume drawn, and reduced incidents of iatrogenic anemia in preterm infants . In 2008, the unit improved the minimal handling strategy further. The blood sample procedure was revised from the current practice, with heel pricks performed by laboratory staff on fixed routine rounds, to scalp venous punctures performed by the nurses and adjusted to the infants' rhythm [15]. cot or incubator. We wanted to provide a place for parents to rest, feed their infant, and have skin-to-skin contact . Our immediate experience was that parents who had access to a bed stayed in the unit for longer periods of time during the day and even during the night if allowed by the nurses. Int --- A Minimal Handling Strategy The unit has practiced a 'minimal handling' strategy since early 2000. The concept of minimal handling is often referred to, but there is no specific definition of the term in the literature. A minimal handling strategy strives to avoid 'overdiagnoses' and 'overtreatment', which entails that there are no routine tests or procedures performed without critical reflection. The physicians are instructed to ask three questions before they perform a diagnostic test: Is it likely that the result will change the current treatment or clinical judgement of the infant? Do the parents or neonatologist want to know the result of the test? Does the result justify the risk of complications? The number of diagnostic tests performed per patient are registered and used actively as an indicator of quality. In addition, we focus on ordering the right samples. Packages of tests are avoided as much as possible, as the neonatologists' aim is to target the problem and reflect upon the indication for sampling. The benefit is a reduced number of punctures, with a decreased amount of stress and pain for the infant, less blood volume drawn, and reduced incidents of iatrogenic anemia in preterm infants . In 2008, the unit improved the minimal handling strategy further. The blood sample procedure was revised from the current practice, with heel pricks performed by laboratory staff on fixed routine rounds, to scalp venous punctures performed by the nurses and adjusted to the infants' rhythm [15]. --- From Open Bay to Single-Family Room Implementation of the new unit with an SFR design was conducted via a stepwise approach based on a PDSA framework . --- From Open Bay to Single-Family Room Implementation of the new unit with an SFR design was conducted via a approach based on a PDSA framework . This structured framework supports practice change as follows: plan change , execute the elements of the change , study the change ured outcomes , and then adjust based on the acquired informatio begin another cycle [16] . This structured framework supports practice change as follows: plan a desired change , execute the elements of the change , study the change by measured outcomes , and then adjust based on the acquired information to begin another cycle [16] . The early preparations included establishing an interprofessional steering group, acquiring financial funding, and planning the SFR unit design. We actively searched for expert knowledge and experience. The management team visited two Swedish SFR NICUs in 2010 and was inspired and supervised in the first important implementation phase. The next step was the preparation of the interprofessional staff for the upcoming change in physical environment, work routines, and continuous parental presence. The steering group consisted of the head nurse, clinical nurse specialists, and the senior consultant neonatologist. A theoretical framework on FCC was designed for the NICU staff and mandated for study before the opening of the SFR unit in April 2012. In addition, repeated theoretical lectures and practical training with a focus on procedures related to providing safe SSC, support for infant-parent closeness, and parental involvement were conducted. Midwives provided theoretical lectures on the needs of postpartum mothers. Furthermore, nursing staff were given lectures and practical training about communication and interaction with parents. An overall objective of the unit with a detailed description of each goal, e.g., '80% of the admitted preterm infants shall be cared for skin-to-skin with the mother or father within 24 h after birth', was developed. All clinical procedures were revised according to FCC values [17,18], and new tools were developed and pilot-tested before being incorporated into the SFR unit. An example of these tools was a registration scheme for the daily duration of SSC. Nevertheless, at the time, the focus was mostly placed on how to provide information to parents upon hospital admission and how to supervise them in daily care and SCC; less emphasis was placed on identifying emotional distress and exhaustion among parents and providing them with adequate emotional support. To minimize separation and support closeness after birth, we collaborated with the maternity ward to provide SSC for the first two hours postpartum for infants born between 32-34 weeks of gestational age. The simulation training sessions together with midwives and gynecologists from the maternity ward were carried out one year before opening the SFR unit. --- Moving into the SFR Unit The new SFR unit opened in April 2012. With 15 SFR and no OB areas, this unit represents a new era in Norwegian NICU design. The unit consists of eight intensive care rooms for infants in need of ventilation support and seven family rooms for medically stable infants. The intensive care rooms provide two separate areas: one infant area, with a space for an incubator and technical equipment, and one parent area, with beds and bathroom accommodations. During the daytime, there is no physical separation between the infant and parent areas. The equipment is mounted on flexible arms to allow for the safe transfer of infants from the incubator to the parents' bed without disconnection. Flexible folding doors enclose the sleeping area and ensure privacy for parents during the night. The family rooms are designed with the infants' bed close to the parents under the expectation that the parents gradually take over infant care. Healthy siblings are welcome to visit and stay overnight without limitations. Mothers are required to sleep at the obstetric ward on the first night after birth in the interest of their own maternity health and safety, but they are allowed to be close to their infant for the rest of the time. Fathers are admitted to the unit immediately after birth. All meals are provided free of charge for both parents. At the time of its opening, the unit had approximately 46 nursing positions entailing a variety of educational levels and experiences: registered nurses with less than one year of experience; nurses with a postgraduate education in intensive care; pediatric and neonatal nurses with over 20 years of work experience within NICUs. The SFR unit has five fully trained lactation support providers, six neonatologists, two midwives and a part-time clinical psychologist. In addition, services are provided by physiotherapists, social workers, dietists, and spiritual providers. After the opening of the SFR unit, the steering group targeted practical and cultural change by using 'changing agents' [19]. A team of experienced nurses organized and supervised the nursing staff. In the first year of implementation, matters of concern were discussed in short daily meetings during day-, evening-and nightshifts. The expert nursing team has had a great impact on the daily organization of the unit, adapting new procedures and ways of working with parents in SFR. This made a crucial contribution to cultural change in the unit, together with the present management, which communicates the unit's goals in a clear and visible way. The medical rounds were changed from the traditional practice of the health-care team having discussions about the infants' treatment and care in a separate room to having these discussions in the patient rooms. The neonatologists involve the parents in the discussions before making final medical decisions. The amount of daily SSC, breast feeding, and parental involvement are reported during the medical rounds. The physical workspace challenged the NICU staff in different ways [20]. The unit was designed with SFR on both sides of a hallway at each end, with two workstations in the middle. The infants are monitored with wireless equipment that allows nurses to receive alerts on mobile phones. This makes it possible for the nurses to maintain responsibility for 2-3 infants and their families in each shift. The fact that the nurses are needed in several rooms simultaneously is a source of exhaustion and frustration for both nurses and parents. The nurses have struggled to organize their shift and have experienced caring for infants and parents to be more demanding and time consuming in SFR. Some parents in intensive care rooms have felt insecure and lonely and experience an overwhelming responsibility for their infant's health and well-being when nurses are 'out of sight'. Others have felt that they could be a 'real family' when nurses are not present in the room. To permit nurses to stay in the rooms for longer periods without interruptions, e.g., alerts requiring their presence in other rooms, the nurses have been reorganized into small teams during each shift. Parental presence for 24 h per day, seven days per week, is viewed as supporting natural biological processes. Observing undisturbed parent-infant interactions has contributed to increased understanding about how bonding emerges by avoiding separation. The increased duration of SSC in SFR contributes to positive parental hormonal responses [21][22][23], but other factors related to parental presence may be equally important. According to Flacking et al. [3], parents claim that eye contact, touching, smelling, and breastfeeding are essential for feeling emotionally close to their preterm infant. Early and prolonged SSC is beneficial for hospitalized preterm infants [24]. The SFR design facilitates SCC [25]. A research study was conducted in the unit on whether diaper change is less stressful for preterm infants when performed skin-to-skin with the mother. The results showed that 75% of the preterm infants were less stressed when their diaper was changed skin-to-skin. The unit procedure was thereby changed to reduce stress during diaper change [26]. The implementation of SSC procedures occurred in 2012, based on theoretical lectures for the NICU staff, written information to parents, available demonstration videos and practical supervision. The nurses supervised the parents to hold the infant SSC in two sessions with a duration of a minimum three to four hours throughout the day, as well as during night-time. When parents asked the staff to provide information about the ideal amount of SSC hours, they were advised to hold their infant as much as possible. Parents were asked to register SSC in a written journal, whereas the neonatologists asked the parents to report on the total amount of daily SSC on medical rounds. Soon after the opening, we observed that fathers were increasingly present and involved in daily care, suggesting that the SFR facilities gave birth to a more active role. The fathers' continuous presence revealed to us the importance of partnership and shared, equal experiences for NICU parents. The steering group realized soon after the unit's opening that the social benefits for fathers after preterm birth were not adjusted towards SFR NICUs. Together with the Norwegian ombudsperson for children, the steering group lobbied the government to increase fathers' rights, which led to extended social benefits and adaptations to new ways of working with the NICU families. Parents were empowered as caretakers, and the family perspective was extended. Even though the NICU had already implemented a visiting program for siblings, the new SFR unit increased opportunities for siblings to be present and to stay overnight if they wished. The hospitalization of infants after birth influences parents' psychological wellbeing [27,28] and the entire family dynamic, including siblings [29]. We came to view the siblings' presence to be very important for families during long hospital stays, especially during holidays. We encouraged parents to invite extended family members and close friends to visit, as the SFR enables families to have visitors in their private space. For families with an infant in palliative care, it is considered important to be able to share memories of the dying infant with grandparents and close friends [30,31]. The SFR design makes it possible for families to involve grandparents and close friends in the infants' daily care, including SSC, to give the parents time to rest and the option of leaving the hospital for shorter periods of time. For families with chronically ill infants or families with a single parent, the emotional and practical effort can be burdensome, especially if the family is staying in the hospital for months [32]. Another aspect of parental presence and SFR is the possibility of monitoring at-risk families and helping parents cope with their new situation [33]. Preterm infants have additional vulnerabilities and an increased risk for ill-treatment within their families. Child maltreatment is a global concern, and NICU nurses working in SFR are ideally placed to identify families at risk of child neglect or abuse and contribute to their protection [33]. The 24/7 parental presence enables the nurses to supervise the parents thoroughly during hospitalization. In cases in which parents need extended supervision after discharge, or their infant needs protection, the unit cooperates with child protection services. Early interventions with at-risk parents may strengthen parent-infant bonding and prevent dysfunctional families. During the 10 years the SFR unit has been in operation, we have been working continuously with at-risk families, and we perceive this to be an important and necessary aspect of NICU care. Thus, it requires adequate multidisciplinary theoretical education in child abuse, supervision of at-risk parents and cooperation with hospital social workers, the maternity ward, and child protection services. --- Evaluation and Adjustment --- More Individualized Infant and Family Care As part of the minimal handling strategy, reducing prolonged and procedural pain has been increasingly prioritized in our unit. An interprofessional quality improvement project for pain management in preterm and ill-term infants was conducted in the unit in 2017. The project entailed the implementation of the COMFORTneo pain assessment scale, guidelines for assessment and management of pain and stress, and increased parental involvement in painful procedures [34]. One year after the QI project, 89% of the COMFORTneo assessments were performed according to the implemented guidelines. The staff use a flowchart to assess, treat, and reassess the infants' pain and stress. In line with previous studies, we found that parents want to be involved in their infant's pain management if they are allowed [35]. During the OI project, parental involvement in non-pharmacological interventions increased from 50.3% before to 82.3% after the implementation. We argue that the success of the QI project was attributable to the systematic use of flow charts, guidelines for pain management, interprofessional collaboration and that the team management actively used experiences gained from the implementation of the SFR unit a few years before. In retrospect, we had an expectation of increased breastfeeding rates after opening the SFR unit due to the opportunity for mothers to stay close to their infant. However, breastfeeding rates upon discharge declined one year after the unit's opening. Breastfeeding a preterm infant requires competent breastfeeding support to mothers, both practically and emotionally. To provide such support, nurses must possess knowledge on how preterm infants develop necessary breastfeeding skills [36]. Even though the nursing staff had a long tradition of promoting early breastfeeding and the unit had several lactation consultants, we were not able to sustain satisfactory guidance to the families regarding breastfeeding. It seems like the nurses experienced the change from OB to SFR facilities as an overload, in that their focus shifted to adapting to new ways of working and promoting SSC at the expense of supporting early breastfeeding attempts. In addition, mothers in SFR miss out on the learning possibilities of peer-to-peer support from other mothers. Due to the established tradition at the unit of continuously benchmarking quality, we were able to detect changes in breastfeeding rates over time and to regain focus on breastfeeding when needed. Nevertheless, evidence shows that preterm infants have higher exclusive breastfeeding rates in SFR compared to OB units [37,38]. We have, over recent years, implemented several strategies to support breastfeeding, like breastfeeding rounds once per week with preferably both parents present. The aim of the breastfeeding rounds is to retain a systematic overview of the individual infantmother breastfeeding dyad. Individual guidance and support are provided by dedicated nurses. The sessions focus on practical and emotional support for families, as well as the development of a plan for the coming days based on the infants' and mothers' needs to ensure progression. Parents, regardless of nutrition and feeding type, are invited to be more involved in their infants' progress from tube feeding to exclusive oral feeding. We have come to learn that parents can be enabled to prepare and perform tube feeding shortly after admission. Upon systematic and safe supervision, most parents appreciate to be involved. The early feeding responsibility provides more natural access to observing and getting to know the infants' feeding signals. We have experienced that, in recent years, involving fathers in the breastfeeding support sessions is beneficial and can contribute to supporting mothers' breastfeeding [37,39]. --- Psychological Well-Being for Parents Preterm births or births of critically ill infants followed by a NICU admission impose emotional strain on parents [40]. We have previously reported that mothers in SFR have a lower risk of depression and lower parental stress during hospitalization compared to traditional OB units [5,41]. A correlation between parental satisfaction and FCC practices, such as emotional support [5,42,43], has been reported. It has been suggested that variations in NICU environments and care practices may explain the difference in maternal depression rates [44,45]. When parents are engaged in daily care, they experience well-being and a more profound feeling of emotional closeness with their infant [3,46]. Nevertheless, a study conducted in the unit by a psychologist and colleagues during the second year after opening reported that some parents felt pressured to care for their infant skin-to-skin and felt more isolated and solitary in SFR. The parents struggled to balance daily life with demands from the staff concerning presence and involvement in their infant's care [47]. The advised hours for SSC were thereby adjusted and limited to 6-8 h per day. The parents' need for uninterrupted sleep during the night was acknowledged and supported by the nursing staff, and the parents were advised to leave the unit once per day for a change in scenery. In the same manner as our monitoring of clinical variables as indicators of quality, we want to highlight the necessity for systematic critical reflection upon how care practices may influence infants and their family. --- Change in Roles The SFR design with continuous parental presence provides privacy and shielded space for practical supervision and psychosocial support to parents. Supervision starts the first day after admission and continues during the entire hospital stay. The nursing staff have a dual role: They care for infants, who often have complex medical needs, as well as supporting parents. Parental presence can be challenging for NICU nurses in SFR, since most parents are experiencing an emotional burden depending on their infant's health, the mother's health, the family's socioeconomic status, and the history of individual parents [48]. The role and demands are changed from traditional taskoriented to a relationship-based approach [49]. SFR require a change in mindset that may be challenging for nurses and neonatologists with prior work experience in OB NICUs, where they had a more paternal role as experts [50]. Their new role may seem less strictly defined when they share responsibility with parents [51]. When nurses evaluated their own performance of FCC in NICU clinical practice, they rated their ability to give emotional support as low [52]. With parents continuously present, there are many opportunities to divulge information and provide guidance and support. However, the SFR unit can also limit parental access to nurses, which makes them vulnerable in specific parent-nurse interactions during each shift. We observed that involving psychologists in the direct care of families on a daily basis was useful [53,54]. In addition to working closely with parents, the psychologist supervises the nurses in subjects such as the emotional needs of infants and parents, as well as communication with parents. Another area of improvement was the inclusion of the psychologist in the support of parent-neonatologist communication. Every other week, the parents have a private meeting with the neonatologist, supported by the psychologist. The intention is to inform the parents about their infant's current and expected future situation, as well as to answer questions from parents. However, the psychologist felt that several parents did not understand or struggled to accept the information they were given due to its scope and complexity or had difficulty comprehending the medical terminology used by the neonatologist. The psychologist supports the parents during the meeting by asking questions to the neonatologist on behalf of the parents as well as interpreting the information in a clearer and more straightforward manner. If the parents receive negative information about their infant's health, the psychologist is able to give them support and comfort during and after the meeting. --- Follow up and Outpatients' Care In recent years, several NICUs have developed early discharge solutions with extended tube feeding at home, either with advanced home hospital follow up or ambulatory nursing [55]. In the last phase of hospitalization, the infant no longer needs monitoring or medical equipment. The focus is instead on successful feeding and daily care to ensure a safe transition to home care. Due to our experiences with competent families, we have started an early discharge project in which families with healthy preterm infants are provided a digital home follow up . The purpose of this method is to continue FCC by offering families in the final phase support in their natural home environment. In such care, infants learn to feed at their own pace, and families can adapt to daily life at home in a gentler and more fluid way, without further separation from siblings. Currently, no systematic evaluation of the DigiHopp project has been performed; however, our one-year experience has included mostly positive reports from parents, and the solution seems safe with no adverse events. We perceive DigiHopp as a natural extension of FCC and are therefore planning for its expansion to several patient groups in the future. --- Vision for the Future-Where Do We Go from Here? In this paper, we have displayed our process towards FCC in SFR and discussed some main elements which we perceive as fundamental in establishing treatment and care adapted to the infant's needs . The SFR unit requires new competence and a change in how we work with as caregivers. Further research is needed to generate a more in-depth understan parent-staff interactions during SFR care [53,56,57]. Further knowledge about wh The SFR unit requires new competence and a change in how we work with parents as caregivers. Further research is needed to generate a more in-depth understanding of parentstaff interactions during SFR care [53,56,57]. Further knowledge about what happens in the SFR and whether parents naturally provide positive stimulation to their infant when they are present is presently lacking. There are still considerable variations in the content, intensity, setting, and degree of parental involvement [58,59], and much remains to be done to integrate parents and optimize the care of preterm and critically ill infants. In the future, we plan for further developments of neuro-protective care adapting to the infant's need, decreased stress and pain, and increased positive stimulation [60]. We aim at positioning parents as a strong partner in the interprofessional team. The involvement of parents in medical rounds is one way [61]. Increased parental involvement in stressful and painful procedures is another [62]. Several studies have reported that parents have a pain-and stress-reducing effect on their preterm and critically ill infants, but change in practice in this area is lacking [63]. To address the feeding of infants, we aim for a more structural and initialized strategy of feeding readiness, in which infants' individual behavioral and physiological signals will be acknowledged and interpreted by their mother and by nurses in an equal partnership [64]. We seek to develop new digital information platforms, including decision support, with the purpose of sharing knowledge with parents. The possibilities are infinite in the area of neonatology, but it requires funding, social benefits for parents, and a change in attitudes. Even though the focus in neonatology has shifted from increased survival to continuous improvement in long-term outcomes, infants are still separated from their parents in many NICUs around the world. A continuous development of knowledge and advancement in medical technology, on the one hand, and further development of NICUs that recognizes the whole family as care recipients, on the other, are two important pathways for improvements in neonatology in the future. --- Limitations Parental presence and involvement in care are more complex and demanding for both the parents and the staff when the infants need high-intensive treatment and care. It may be seen as a limitation for the paper, both in implementing SFR and parental involvement in daily care, that the infant population are overall healthy and not critically ill. Even though this is not a scientific paper, we argue that the careful and honest description of the process and our experiences could be of interest, since SFR is recommended as the NICU gold standard, and similar descriptions are absent [5,38]. Norwegian parents are economically privileged and have one year maternity leave, as well as additional rights after preterm birth for both parents. We fully acknowledge that parental presence in NICUs is dependent on the social benefits for parents after childbirth. --- Author Contributions: B.S.T., initial, original draft preparation and writing; L.T.L., original draft preparation and writing; K.H., Figure 1 ---

Ten years ago, the Neonatal intensive care unit in Drammen, Norway, implemented Single-Family Rooms (SFR), replacing the traditional open bay (OB) unit. Welcoming parents to stay together with their infant 24 h per day, seven days per week, was both challenging and inspiring. The aim of this paper is to describe the implementation of SFR and how they have contributed to a cultural change among the interprofessional staff. Parents want to participate in infant care, but to do so, they need information and supervision from nurses, as well as emotional support. Although SFR protect infants and provide private accommodation for parents, nurses may feel isolated and lack peer support. Our paper describes how we managed to systematically reorganize the nurse's workflow by using a Plan-Do-Study-Act (PDSA) cycle approach. Significant milestones are identified, and the implementation processes are displayed. The continuous parental presence has changed the way we perceive the family as a care recipient and how we involve the parents in daily care. We provide visions for the future with further developments of care adapted to infants' needs by providing neonatal intensive care with parents as equal partners.

Introduction For John Friedmann planning is the guidance of history by reason. However, over recent decades the idea of planning has often seemed to stand on the wrong side of historical change, viewed as inimical to dominant forms of neoliberal 1 reason and accused of obstructing the march of progress . The status of planning has been subject to sustained criticism, prompting widespread attempts to reform state guidance of land and property markets and generating pervasive concern that the idea of planning project is under attack . Whilst such reform initiatives have typically been framed as pragmatic, evidence-based responses to policy failures, they are also shaped by political forces operating at various levels. By reworking the institutions and social relations of practice they seek to bring prevailing definitions of planning into line with dominant ideas. In short, they are always also ideological. Tracing the relations between specific attempts to reshape planning ideas and practices and wider ideological forces like neoliberalism, however, raises long-standing questions about the "problem of ideology". A central difficulty concerns how to strike the appropriate balance between the ideational and the material: to what extent do neoliberal grand narratives drive historical change rather than themselves responding to underlying shifts in economic relations, social change or political events? A balance must be struck somewhere that always risks privileging one side of the analytical coin over the other, whether structuring power over political agency or the ideational over the material. These are theoretical and epistemological as well as methodological questions which have been central to encounters between the Marxist conception of ideology and linguistic and psychoanalytical theories, particularly from the 1950s onwards. They have also been core concerns of planning theory in its engagement with ideology. From Marxist-influenced critiques of the ideology of planning to post-1 'Neoliberalism' is an amorphous and contested concept. Here it is understood as a provisional but unsatisfactory label for an ideological formation whose dominance has defined an era based on processes of neoliberalisation characterised by, amongst other things, the valorisation of market rationalities and policies founded on a deep scepticism towards public intervention, including planning . It should be emphasised that 'neoliberalism' is just one of many potential ideological formations, and that 'actually existing' forms of neoliberalism vary widely between different political regimes where they are typically combined in complex ways with other ideological traditions. structural reconfigurations of ideology as a discursive structure , critical planning theory has explored how various forms of power constrain the scope of planning ideas and practices and serve the interests of dominant elites . Other strands of planning scholarship, however, remain sceptical of the value of concepts like ideology and neoliberalism, suspecting them of contributing to a structuralist 'over-critique' that pays inadequate attention to other factors, whether the complexity of empirical realities or the normative and pragmatic imperatives of planning scholarship to show that there is space to do things better, even in a neoliberal world . In this paper we argue that "conjunctural analysis", as developed by the late political and cultural theorist Stuart Hall, offers a productive route for addressing these enduring challenges. As yet underexplored in planning theory, conjunctural analysis seeks to bring into analytical purview the intersection of multiple processes that coalesce at a particular historical moment to produce a distinctive "conjuncture"or combination of processesinscribed with particular crisis tendencies and political potentialities. Ideology is one factor whose role and influence must be tracked alongside a number of other important processes of economic, social and political change. Conjunctural analysis therefore focuses on "diagnosing the present" as a means of generating practical political insight. "Thinking conjuncturally" is not then a purely theoretical exercise but a means of reading the complex political possibilities that may be emerging to guide history in new directions, particularly in moments of crisis. Given that there are strong signs that the old certainties secured by neoliberalism are crumbing with no clear consensus as to what is to come , we need now more than ever need to be alert to emergent ideas. To illustrate our argument we explore how pressures generated by a perceived "housing crisis" have influenced successive reforms to the planning system in England since 2010, 2 a period shaped by the ongoing effects of the 2007/08 global financial crisis which itself had roots in the ideological positioning of housing within the "neoliberal settlement". We argue these planning reforms have been a means by which a ruling Conservative Party has sought to govern the problem of planning for housing within the terms set by its own evolving political ideology and an ongoing hegemonic settlement that have both situated the promise of "homeownership" in a "property owning democracy" as central to their popular appeal . However, we go on to argue that a deepening of the material, social and political contradictions underpinning the housing question, coupled with the wider political crisis prompted by the United Kingdom's decision to leave the European Union, may have begun to destabilise the core neoliberal problematisation of planning as a root cause of the housing crisis. Conjunctural analysis therefore enables us to explore the faltering role of political ideology in 'suturing together contradictory lines of argument and emotional investments' around housing and planning. As a result, we argue planning should be understood as a site of struggle, where ideology is deployed as part of ongoing efforts to secure, renew or challenge a broader hegemonic settlement. However, we also argue that planning could potentially be a site where space may open up for more progressive ideas to be articulated. As a result, we conclude by outlining how conjunctural analysis enables us to bridge the critical and pragmatic orientations in planning theory by exploring strategies for ideologically reshaping planning ideas and practices in and against the profound uncertainties and crises currently enveloping neoliberal hegemony. The argument is structured as follows: next, we discuss how Hall's conjunctural analysis was developed in response to challenging questions regarding the relationship between ideology and the material world. A summary of our approach to applying conjunctural analysis is then set out. The concept of housing in the context of the English planning system, structural changes to the UK housebuilding sector and the 2007/08 global financial crisis are then discussed. We then analyse various changes to English planning, tracing the role of ideology while seeking to hold various other determinants of the conjuncture in view. After exploring the role ideology plays in narrating the present historical moment we go on to stake out how this form of critical analysis generates practical insight into the contemporary politics of planning. Hall's work was centrally concerned with the problem of ideology or how 'to give an account, within a materialist theory, of how social ideas arise'. He defined ideology as 'the mental frameworksthe languages, the concepts, categories, imagery of thought, and the systems of representationwhich different classes and social groups deploy in order to make sense of, define, figure out and render intelligible the way society works' . His was therefore a sociological rather than necessarily pejorative conception of ideology as "false consciousness". Nevertheless, he was interested in critically examining how the "mental frameworks" of the powerful shape the consciousness and lived practices of wider society and thus help to secure its domination. Antonio Gramsci's work on hegemony was therefore indispensable for understanding how ruling ideas secure dominance through consent as much as coercion. --- Approaching the problem of ideology by thinking conjuncturally --- Stuart Following Raymond Williams , we can understand hegemony as a "a central system of practices, meanings and values, which we can properly call dominant and effective". Like Williams, Hall saw hegemony as operating at a more fundamental level than ideology but also saw in Gramsci a recognition that it was always contested: Hegemony, once achieved, must be constantly and ceaselessly renewed, reenacted…Central to this is the notion of various forms and intensities of struggle Hegemony is, therefore, a contingent process of struggle between dominant, residual and emergent social forces rather than a closed and totalising structure. As ideology is, in significant part, 'a cultural battle to transform the popular mentality' , it plays an important role in struggles to establish hegemony, organising the complex and frequently contradictory terrain of popular common sense. According to Hall's reading of Gramsci, 'a hegemonic settlement only works when ideology captures or "hegemonises" common sense; when it becomes so taken-for-granted that its ways of looking at the world seem to be the only ways in which ordinary people can calculate what's good and what's not' . Drawing on the work of Ernesto Laclau , Hall argued that ideology therefore seeks to 'articulate' connections, stitching disparate social forces together to suppress, conceal or seek to resolve contradictions between them. In this way, it seeks to provide a degree of coherence sufficient to secure popular consent. Importantly, this means 'Ideology is always contradictory. There is no single, integrated "ruling ideology"…Ideology works best by suturing together contradictory lines of argument and emotional investments…Contradiction is its metier.' This conception of hegemony and the role of ideology, drew on the distinction Gramsci made between a "war of manoeuvre", the active seizure of power, and the "war of position", the ongoing struggle across multiple fronts through which political leadership can be established in complex societies. Rather than viewing hegemony in monolithic terms as the outcome of a war of manoeuvre, assessing and intervening in the ongoing "war of position" requires attentiveness to the 'different places from which we can all begin the reconstruction of society' , staking positions from which to articulate possibilities for change within the constraints of prevailing social and material relations. Hall therefore developed his approach to "conjunctural analysis" as a means of critically reading historical possibilities for such political "position taking". --- Towards conjunctural analysis In seeking to forge a path between "economism" and "ideologism" , Hall explored the possibility of reading historical conjunctures, understood as: …a period during which the different social, political, economic and ideological contradictions that are at work in society come together to give it a specific and distinctive shape. The post-war period, dominated by the welfare state, public ownership and wealth redistribution through taxation was one conjuncture; the neoliberal, market-forces era unleashed by Thatcher and Reagan was another. These are two distinct conjunctures, separated by the crisis of the 1970s. 3 3 The word "conjuncture" in English comes from from the Latin "conjungere", meaning "join together". Hall's use of the concept derives from Gramsci's use of it in the Italian , and Althusser's later incorporation of it in to his work in French. Both Gramsci and Althusser saw the conjunctural as less significant than the underlying "organic" relations of society. Hall, however, sought to develop Gramsci's more "methodological" concern for conjunctures in a distinctive fashion 'as a way of For Hall, conjunctural analysis 'means describing [a] complex field of power and consent, and looking at different levels of expression -political, ideological, cultural and economic. It's about trying to see how all of that is deployed in the form of power which "hegemony" describes' . The approach therefore acknowledges that the apparent hegemonic stability of broad historical conjunctures comprises a paradoxical constant amidst dynamic processes where social, economic, ideological and political relations shift across various analytical levels . Ideology is understood as a key means by which the hegemonic settlement of a particular conjuncture is secured and re-enacted, by articulating how various historical processes come together and give the conjuncture its specific shape. Crucially, however, the different 'levels of expression' that 'come together' in a given conjuncture also have distinctive histories and crisis tendencies. When these tendencies fuse, conjunctures can enter into sometimes protracted periods of 'organic' crisis. Crises may be resolved by the restoration, reconstruction or transformation of a hegemonic settlement . Whilst they are driven by deeper historical transformations in the economy or society, however, they are not determined by them. Rather, periods of organic crisis require concerted 'political and ideological work…to disarticulate old formations and to rework their elements into new configurations' . The classic example here is Hall's analysis of the shift from the post-war to the neoliberal conjuncture, where a deep crisis was resolved by the forging of a new 'historic bloc' by Thatcherism, an ideological project which succeeded not just in securing electoral success but in becoming hegemonic and remaking the terrain of British politics and society. The task of conjunctural analysis is therefore to interrogate the nature of any given crisis facing the hegemonic settlement of a particular conjuncture, assessing possibilities for intervention in the 'war of position' through which hegemony is constructed and contested. --- Thinking conjuncturally about planning and ideology Conjunctural analysis is intended to help the analyst reflect upon the processes which shape broad historical eras and the movements between them, such as the various "Thatcherism" and "New marking significant transitions between different political moments; that is to say, to apply it as a general system of analysis to any historical situation' . It is in this sense that we use the term here. Labour" phases of the continuing "neoliberal conjuncture" in the United Kingdom . However, planning is not "a conjuncture" in these terms; it is a set of ideas and material practices, typically organised as a specific area of public policy, not an historical period. So what does it mean to "think conjuncturally" about planning? We contend that it means to think about planning as one site, or "position", where multiple social, economic and political processes with roots in the wider historical conjuncture coalesce. Because planning as an institutionalised set of ideas and practices is concerned with mediating the relations between social, economic, political and environmental pressures relating to land and property, it is inevitably a site where these sometimes contradictory processes must be reconciled or where key challenges must at least be obfuscated or displaced. At different times, planning may therefore become a more or less significant site for the contestation or reproduction of hegemonic forces. Ideology plays a crucial role in this. Ideas about planning are never formulated by an ahistorical "reason" but are instead shaped by the material realities of conjunctures that discipline, without entirely determining, what can be thought and said. The struggle over political ideas in the planning sphere, intimately connected with deeply ideological conceptions of the relationship between land ownership, individual and economic freedom and the state , may assist in reenacting and re-securing hegemony in the face of obvious contradiction and challenge, although perhaps in altered form. Yet, because planning is a site of struggle, it can potentially also become a space where contradictions in the hegemonic settlement are distilled, become visible and may be articulated in ways that challenge dominant logics. The political implications of this approach are significant, since it recognises planning as a site where various "positions" might be strategically staked in a "war of position" over its meaning, purpose and role in society. In terms of attempts to reform planning in England, this means thinking about the dynamism of English planning as partly a function of ongoing struggles to secure the legitimacy of dominant political ideas as they relate to the use and development of land. --- Applying conjunctural analysis to English planning Rather than proposing a theory, Hall's primary concern was to use theoretical tools to develop an analytical practice oriented towards political learning and action . Conjunctural analysis does not therefore aspire to be a fully-fledged "theory" but an analytical and methodological orientation. In what follows we do not seek to dogmatically "follow" or "use" Hall but to adapt his open style of analytical thinking to examine the role of ideology in English planning in the aftermath of the 2007/08 global financial crisis. We have therefore sought to track changes to English town and country planning since 2010, particularly as it relates to a powerful narrative of "housing crisis", and shifts in the evolving political ideology of the Conservative Party that has wielded power during this period. We have also traced shifts in national planning policies and legislative provisions, relating these to the Conservative Party's political ideology to question its role in securing continuity and change by reconciling competing imperatives around the roles of the state and the market in planning for housing. This approach has required analysis of various policy documents, primary and secondary legislation, political speeches and debates, as well as the popular discourse of the press to build a picture of the practical sequence of changes to English planning, the role of the political pressures created by the discourse of "housing crisis" in shaping them, and how they have been communicated in official policy discourse. As a result, we have sought to trace the historical roots of the discourse of "housing crisis" and its implications for planning; questioning its nature and significance in relation to the protracted unfolding of the 2007/08 financial crisis and the wider crises dynamics facing the neoliberal conjuncture. This requires an account of the ways in which the political, social and economic roles of planning and housing have changed in English society so as to understand the various historical determinants of contemporary articulations of the "housing crisis" and the roles played by housing and planning in relation to the forging and sustaining of "neoliberal" hegemony. In this way, we seek to situate our analysis of the period since 2010 in a broader context to trace the continuing influence of various forces, including ideology, in shaping dominant understandings of planning. There are parallels in our approach with various other forms of post-structuralist and discursive analysis of planning ideas and practices. However, conjunctural analysis is distinctive in seeking to take in the broad sweep of forces which coalesce into a conjuncture, while trying not to privilege any one particular aspect, be it social, economic, political or ideological. Nevertheless, by the very act of thinking analytically about a conjuncture, the analyst still has to carve it up and impose a narrative sequence and sense of coherence. This tension between the chaos of historical change and the coherence of narrative challenges all theory. There is no clear way out of the bind it creates, other than, as Hall argued, to retain sight of the deeply provisional and contingent nature of any account. By writing about a conjuncture, certain aspects will inevitably be foregrounded at the expense of others -the whole complexity of interrelationships cannot be adequately captured. Rather than a search for theoretical "truths", then, conjunctural analysis should be judged by its value for "diagnosing the present" and the practical political insights it can generate into ideological struggles to secure or rework hegemony across various sites, from the particularities of planning to the generalities of historical conjunctures. With this in mind we now turn to the longer term context framing the current moment for planning for housing in England. --- Housing, planning and the neoliberal conjuncture Housing supply has long played an important role in the politics of planning in England and the growing centrality of housing to thinking about planning reflects the wider political significance the issue has assumed in recent years. Whilst only one, relatively small part of the wider conjuncture, the "housing question" occupies a position at the intersection of significant economic, social, political and ideological dynamics shaping the neoliberal settlement . Economically, the deregulation of financial markets and mortgage lending by the Thatcher governments in the 1980s created the conditions for the financialisation of housing which came to be increasingly widely regarded as an economic asset, leading to the development of complex financial products and the widespread speculation on mortgage-backed finance that lay at the root of the 2007/08 financial crisis . Despite a significant house-price driven recession in the early 1990s and the effects of the crisis, these changes prompted long-term and significant increases in residential land and house prices, fuelled by easy availability of cheap mortgage finance. Indeed, the UK experienced approximately 1090% increase in average house prices in the period 1979 -2018 , and approximately 280% increase in the period 1997 -2018 . Both housing related debt and capital therefore became increasingly significant not just to individual households but to the functioning of the wider economy in what has been dubbed a "mortgage-led accumulation regime" . The diversion of huge amounts of wealth into land and housing has had multiple effects, reinforcing the dominant role of financial services in the British growth model, and masking underlying structural weaknesses in the economy . Politically and socially, the promotion of homeownership was a significant tool for winning support to the neoliberal policies of successive governments. This was most potently symbolised by Thatcher's introduction of a "right to buy" for council tenants, a policy widely credited with winning working class voters over to Thatcher's neoliberal project. Coupled with restrictions on local authority building that prevented the replacement of public stock, the residualisation of what remained of "council housing" also significantly reinforced negative perceptions of welfare dependency and the "failure" of the post-war settlements in the UK. Ideologically, the promise of a "property owning democracy" made by both Conservative and New Labour governments over the past four decades appealed to property as a key symbolic stake in the "community". The strength of these ideological linkages was reinforced by long term rises in house prices that helped maintain "consumer confidence" whilst literally and figuratively mortgaging people into the maintenance of the status quo. Homeowners were thus interpellated as core subjects of neoliberal planning, with housing situated as a key site of both financial and emotional investment. Significantly, these ideological shifts also largely removed the state from the production of new housing, leading to a long-term reliance on the private sector. Capitalising on growth in land and house prices during this period the housebuilding industry in the UK consolidated into a concentration of large public limited companies . Supply of new housing in England has, however, persistently failed to keep up with forecasted housing need, with an officially reported annual shortfall of approximately 115,000 homes against an estimated need of around 275,000 per year by 2017 . Another significant long term consequence of these changes has been to alienate increasing numbers of people who have been priced out of the aspiration for homeownership and have become "trapped" in a poorly regulated private rental sector. This notably includes a younger generation for whom the high costs of housing in economically affluent regions is becoming an increasingly visible problem . The "success" of the neoliberal strategy of promoting homeownership has, therefore, produced a range of paradoxical results and deepening contradictions that have put significant political pressure on governments to act. In response, successive governments have tended to fall back on a core neoliberal discourse, "blaming" the planning system for creating bureaucratic delays and preventing the market from meeting housing need. 4 As a result, planning reform has frequently been positioned as a key response to the dominant construction of the "housing crisis" as a problem of artificially constrained supply. --- The Financial Crisis: A new phase in neoliberal hegemony Conjunctural dynamics around housing and their various crisis tendencies were close to the centre of the financial crisis that erupted in 2007-8. In the UK this was followed by the electoral defeat of New Labour whose ideological project had sought to perform a 'double shuffle' , accepting neoliberal prescriptions to liberalise markets, privatising and managerialising the state whilst retaining some commitment to the party's more social reformist past. In New Labour's place a coalition government was formed in 2010 between the Conservative Party and the more centrist Liberal Democrats. The financial crisis exposed contradictions in the ideology underpinning the neoliberal settlement, undermining New Labour's claims that 'light touch regulation' had brought an end to the boom and bust cycle of markets. Illustrating the importance of getting 'hold of the narrative' to control how crises are constructed and used politically , however, the banking crisis was quickly transmogrified into a crisis of the public finances . Using the crisis as a pretext, the Conservative-led coalition government introduced deep, fast cuts to public services that it blamed on the profligacy of their predecessors. What had seemed a potential moment of rupture in the settlement, effectively ushered in a new phase in neoliberal hegemony which the dominant ideology of the Conservative Party helped to legitimise. In the next section we assess how planning in England was repositioned by this ideological agenda from 2010-2015, showing in particular the growing political importance of the narrative of "housing crisis" and how it was used to perpetuate prevailing, neoliberal ideas of planning. We also go on to highlight how the intensification of the politics of housing and the major political crisis created by Brexit appear to have destabilised core neoliberal discourses about the role of planning and the market in delivering new houses. Relating this to the underlying contradictions in the role of housing within the wider conjuncture outlined above, we argue that new opportunities may be opening up to contest the dominant construction of the housing crisis and articulate alternative ideas of planning. --- Towards a conjunctural analysis of ideology, planning reform and the "housing crisis" Localism, housebuilding and ideological struggle Prior to 2010 the Conservative Party under leader David Cameron had sought to ideologically reposition itself to challenge New Labour's dominance of the "centre ground" of UK politics. The resulting "Cameronite" ideological amalgam sought to combine commitment to the neoliberal aspects of British conservatism emphasised since Thatcher with a more "compassionate" tradition that rested on an organic and "localist" conception of community and society and a paternalistic orientation towards their conservation . In the early years of the coalition government, a strong rhetorical emphasis was placed on the "localist" element of this ideological framework. Summoning citizens to come together and forge a "big society" to manage local affairs previously undertaken by the state, the localism agenda contained a strong current of anti-statism, enabling blame for the crisis to be placed on New Labour's centralising agenda and providing a narrative that, at least rhetorically, linked unprecedented cuts in public spending to a resurgence of local community control. Cited by Cameron in opposition as an example of the problems caused by too much central state interference, localism had particular resonance in planning, where resentment at central government imposition of targets for new housebuilding through regional plans was particularly strong in many Conservative voting localities . A range of "localist" changes to the planning system were therefore quickly introduced including the abolition of regional plans, and their perceived "imposition" of top-down targets, and the introduction of a new tier of Neighbourhood Development Plans which communities can choose to prepare themselves to shape the development of their local areas. However, the neoliberal current within the ideology was also strongly present. The aftershocks of the global financial crisis and a subsequent sharp downturn in construction led government to argue that getting housebuilding moving again was 'crucial for economic growth' . The connection between housebuilding and growth led to planning reforms aimed at deregulating the planning system to enable the market to deliver more housing; an articulation of the core neoliberal critique of planning as a regulatory barrier. The neoliberal and localist emphases within the Conservative ideology thus intersected in their hostility towards the state. Government rhetoric argued these two strands could be reconciled in relation to housing as communities, freed from governmental interference and offered appropriate incentives, would come to support increased housebuilding. However, there were clear tensions in this formulation. The neoliberal emphasis on housebuilding and growth pushed for the deregulation of the planning system so more houses could be built while the localist agenda promised local people greater control over unpopular new housebuilding by creating an additional layer of planning regulation at neighbourhood level and abolishing regional targets designed to ensure local authorities planned for sufficient housing. These tensions erupted in the political controversy surrounding the introduction of a "presumption in favour of sustainable development" through a new draft National Planning Policy Framework which radically shortened existing national planning guidance. The proposal signalled a strengthened pro-development position, potentially undermining local powers to control what was built. It therefore generated strong opposition from a coalition of traditional Conservative supporters, led by a high-profile national media campaign against "concreting over of the countryside" in a key right-wing newspaper. As for previous Conservative governments in the 1980s , planning for housebuilding therefore became a contested area of policy through the interaction of competing ideological imperatives within the ruling party. The controversy surrounding the draft NPPF temporarily threatened to derail the government's reform agenda, and was only resolved after a number of concessions were secured by the government's opponents. However, the extent to which these significantly altered the neoliberal programme around housebuilding enshrined in the document is debatable. The NPPF was eventually adopted in 2012 with a slightly modified "presumption" which effectively reduced the powers of local authorities and communities to oppose housing development where a local plan is out of date and/or the local planning authority is unable to demonstrate a sufficient supply of housing land. A revised requirement for local authorities to plan for "objectively assessed housing need" was also introduced. In practice this meant maintenance of the housing targets so despised by parts of the Conservative Party. Perhaps because these targets would no longer be set by central government through regional plans perceived as "remote" from local communities, their appearance in the NPPF raised few objections. The tension inherent in centrally "imposing" the requirement for local authorities to plan for objectively assessed housing need alongside a "localist" agenda was obfuscated. In this regard, debates around the NPPF illustrate the relative autonomy of planning as a site where wider social, political, economic and ideological relations are not simply reflected but converge and are mediated in particular ways. The NPPF adoption process also shows how the political ideology of the Conservative Party of the time actively shaped and directed various planning reforms both by "suturing together" potentially contradictory lines of argument to secure consent and by flexibly adjusting in the face of political opposition. In the final compromise, the localist current of the ideology was clearly moderated to ensure the overarching commitment to growth through housebuilding deemed central to the wider neoliberal settlement. --- The housing crisis, home ownership and the deepening of neoliberal reforms In the years following the introduction of the NPPF, the localist orientation continued to be symbolised by consistent government support for neighbourhood planning. This included measures making it somewhat easier for local communities with neighbourhood plans to resist unwanted housing . Meanwhile, the neoliberal critique of planning remained dominant, increasingly focused through the discourse of the housing crisis with a particular emphasis on regulatory reforms to enable the private sector to increase the supply of new housing. For planning, the result was a period of intensified legal and policy experimentation driven by the neoliberal desire to 'remove any unnecessary obstacles in the planning system to the delivery of new homes' . Legislative changes gave central government new powers to intervene when local authorities failed to prepare plans fast enough or in accordance with the need to encourage more housebuilding. In addition, a range of actively deregulatory measures were introduced, exempting certain changes of use from the need to obtain planning permission, including the conversion of office buildings into housing. An enhanced focus on the viability of development in the aftermath of the global financial crisis enabled developers to challenge efforts by local authorities to extract development value to pay for affordable housing, thereby resulting in fewer "affordable homes". Meanwhile, the definition of "affordable housing" in national policy was itself changed, bringing it closer to market-levels . With house prices quickly rising again following the financial crisis, the result was a decline in the number of new homes which could reasonably be considered "affordable", particularly in areas of high demand like London . This all occurred during a period when planning services were absorbing the largest budget cuts in local government, amounting to 53% of budgets from 2011-2017: 36). The cumulative result of these piecemeal changes is still hard to assess but has been deeply significant, reducing planning capacity in local government and control over the location, quantity and tenure of new housebuilding. Overall the 2010-2015 government may have overseen the most significant ideologically-driven reconfiguration of planning policy and practice since the introduction of a comprehensive planning system in 1947 . Despite the fact that local authorities had little direct power to ensure new housing was actually built, government hoped that a combination of deregulation and the centralisation of power, particularly where local authorities were judged not to be fulfilling their duties adequately, would ensure enough development land was released for the market to meet "objectively assessed housing need". The discourse of the "housing crisis" therefore played a key role in ideologically positioning planning as a key problem as the government responded to political pressures generated by both the perceived importance of housebuilding to the wider economy and the need to ensure continued access to the promise of homeownership. The latter was particularly symbolised by the "first time buyer" becoming an increasingly key discursive figure, appealed to by policy initiatives designed to underwrite mortgage finance for the new build houses being delivered through the "streamlined" planning system. Paradoxically, however, this ideological response to fears about younger generations being priced out of the aspiration for homeownership served to underwrite both further rises in house prices and the profits of housebuilding firms, further exacerbating underlying problems of affordability . As we now go on to argue, the focus on reforming planning to boost the market-led delivery of more houses and the creation of more homeowners has increasingly been exposed as an inadequate response to the contradictions underpinning the position of housing within a neoliberal settlement now facing a period of heightened political uncertainty. --- Political crisis and the opening of space for challenge? Following a general election in 2015, a Conservative government was elected. In order to manage the rise of the United Kingdom Independence Party and dissatisfaction in the right-wing of the party, their election manifesto had promised a referendum on the United Kingdom's membership of the European Union. Immediately following the decision to 'Brexit' the European Union, David Cameron resigned and was replaced as leader of the Conservative party by Theresa May who sought to respond to the divisive implications of the referendum result for the party and the wider country, and a significant shift to the political left by the Labour Party in opposition following the election of Jeremy Corbyn as leader in 2015. Brexit has has since generated a deep political crisis whose implications are still being worked through. With links to significant discontents amongst those 'left behind' by economic, social and political change over recent decades, including long-term increases in inequality set in chain by neoliberal programmes and exacerbated by austerity, the effects of this were quickly apparent in relation to housing. In a white paper on housing delivery published in early 2017, there was evidence of a subtle reframing of the narrative of the "housing crisis", now associated less with the importance of new housing to economic growth and the encouragement of homeownership, and more with the social and broader economic effects of unaffordable housing. Whereas the term "economic growth" was mentioned 18 times in Laying the Foundations -A Housing Strategy for England , in the Housing White Paper , it appeared only twice. The White Paper acknowledged that blame for the "broken" housing market does not lie solely with the "bureaucratic planning system". The supposed practice of developer "land banking" was questioned, with the accompanying accusation that such practices may be contributing to the undersupply of housing and, therefore, unaffordable house prices. Alongside this reframing of the causes of the "housing crisis" was an acknowledgment that relying predominately on the private sector to provide the homes the country needs has introduced a concentration of power and market influence that is not producing optimal societal outcomes. The White Paper therefore recognised a stronger role for local authorities in direct housing provision . The build-out rates of major housebuilders have also since come under scrutiny as increasing numbers of planning consents granted by a more permissive regulatory regime have failed to translate into parallel increases in new houses . In addition, the power of private landowners in influencing the supply and price of housing development land has also been questioned . The extent and implications of these apparent shifts remain unclear. However, it is possible this may have significant implications for planning for housing. In the years immediately following the global financial crisis, Conservative ideology sought to balance localism with neoliberal reforms to the planning system, appealing to the importance of housing and home ownership to economic recovery and prosperity, before then downplaying the localism agenda in favour of deregulation and centralisation of the planning system to help deliver more homes and create new homeowners. However, it now seems to also be responding to the political and social challenges flowing from unaffordable housing. Having previously been off the agenda for ideological reasons, openness to tackling high land values and funding local authority house building through public borrowing are symbolically significant. Increasing material evidence that planning delays are not the main obstacle to housebuilding seem to have interacted with an intensification of the politics of housing and the Brexit crisis to shake the ideological framework shaping the politics of planning. This generates significant questions about the potential for planning to become a site of more significant ideological struggle in the years to come, beyond its role in reconciling internal divisions within the Conservative Party from 2010-2016. As part of this, neoliberal "commonsense" that planning is a regulatory barrier and source of bureaucratic delay may be open to challenge by forces seeking a more progressive idea of planning as part of a stronger state-led response to the housing question. Much will depend on who succeeds in getting "hold of the narrative" during a period that will be marked by intensive "political and ideological work" and struggle. Repositioning planning as a core means by which aspirations for decent, secure and affordable housing can be met by redistributing inflated land values could, for example, offer routes to significantly reshape hitherto prevailing political and ideological horizons around planning and housing in England. In the remainder of this paper we go on to explore the value of a conjunctural analysis of these events, both theoretically, as a means of understanding the role of ideology in securing continuity and change in planning ideas, and practically, for thinking through possible political responses to the profound uncertainties of the contemporary historical moment. Hegemony, crisis and the politics of planning for housing: the role of ideology Following Hall's injunction that there is no single ruling ideology, a conjunctural analysis of the politics of planning reform in England since 2010 encourages us to think about the role of the particular political ideology of the Conservative Party during this period and how this relates to a more abstract form of neoliberal hegemony at a broader conjunctural level as well as about the role of planning as a space where these relations converge. In the immediate aftermath of the 2007/08 financial crisis the legitimacy of neoliberal hegemony was severely challenged as "the material and ideological foundations of neoliberalism were shattered" . Despite this, a major crisis of the neoliberal settlement was apparently averted and neoliberal logics applied to restore "business as usual", legitimising further rounds of state restructuring under the auspices of austerity. This was supported through active political ideological work by the Conservative-led coalition government to displace responsibility for the crisis, from clear evidence of market failures onto the state and public spending. Although there was by no means unanimous public support for austerity, through this ideological re-framing of responsibility for the crisis an uneasy and fractious consent was secured and the cultural saturation of neoliberal logics continued to hold together the broader conjuncture. This discourse of blame was strongly apparent in the intersection of the "housing crisis" and planning in England post-2010 where, in the wake of the financial crisis, familiar neoliberal problematisations of the planning system as a barrier to development were given renewed urgency by the need to restore economic growth and access to homeownership as a core aspiration. The central role performed by the idea of homeownership in the political ideology of the Conservative Party at the time, and in the broader neoliberal settlement over the previous thirty years, ensured that planning for housing was a key area for active ideological work which sought to shape the discourse of the "housing crisis". In this regard, the political ideology of the Conservative Party played an important role in ensuring that the "housing crisis" was presented in simplified terms as a particular kind of problem , requiring particular forms of intervention . It thus sought to legitimise planning reforms aimed at encouraging housebuilding to create more homeowners and so help secure the continuation of the neoliberal settlement in the aftermath of the financial crisis. However, where such planning reforms were enacted in England, 'various forms and intensities of struggle' have been apparent, struggles closely linked to the contested and contradictory nature of the political ideology of the Conservative Party as well as the broader, material and political-economic contradictions of the financialisation of housing and the geographies of uneven development they have generated. The tensions between the localism and growth agendas in the early years of the 2010 -2015 government highlighted a persistent fault-line in Conservative Party attempts to govern planning for housing and exposed planning as a site where competing ideological agendas struggled for dominance in response to broader economic, social and political pressures, notably those generated by the "housing crisis". The flexibility of the ideological amalgam of the Conservative Party enabled it to legitimise various policy agendas, and to obfuscate their sometimes contradictory nature. The role of ideology in these processes has been both active and reactive -active in the powerful legitimisation of the integrated policy reforms in the early years of the Conservative-led coalition after 2010, and more reactive when its sense of coherence and legitimacy was challenged, most obviously when the economic growth and housing delivery agendas risked bringing the government's core neoliberal drives into conflict with local communities on whose political support it relied. If ideology is always contradictory and seeks to stitch potentially disparate developments, lines of argument and emotional commitments together, it is possible to conclude that the distinctive Conservative articulation of neoliberalism and localism from 2010-2015 proved a relatively successful means of "holding" a position, containing the potentially problematic politics of new housebuilding and enabling the roll-out of a new phase of neoliberal restructuring . The planning system played a significant role in this ideological formation, positioned as both an ideological "scapegoat" for the supply shortages "causing" the housing crisis and a means of placating opposition to new housing development through appeals to "localism". These contested processes of planning reform, their intersection with the "housing crisis" and the importance of housing delivery and homeownership to securing the neoliberal settlement point to the ongoing challenge of securing hegemony as a 'process of ideological framing, institutional restructuring, political struggle and social adaptation' . Neoliberal hegemony is not unilaterally imposed, but must be constantly re-made in the face of challenge and contestation arising from its own contradictions and the ways in which these are distilled and become manifest in particular struggles. Ideological struggles around planning are thus related in complex, mediated ways to wider processes without being wholly determined by them. This open and dynamic conception challenges conjunctural analysts not to reproduce accounts of hegemonic domination but to explore how particular sites might become locations of ideological struggle from where alternatives can be articulated as part of a "war of position". Indeed, there are now signs that the core neoliberal problematisation of planning as a key cause of the housing crisis has begun to break down under significant pressure from both its own internal contradictions and wider political and material realities with roots in the 2007/08 financial crisis. The United Kingdom's vote to leave the European Union seems likely to generate an extended period of political crisis with significant but as yet uncertain implications for the future of the neoliberal settlement. As discussed in the previous section, this may have further significant implications for prevailing constructions of both the housing crisis and planning. In this context, it is important to be alert to emergent possibilities to articulate progressive positions from which to rework dominant conceptions of planning. It is to such possibilities that we turn next. --- 'Reading' possibilities for political action For Stuart Hall theory was always "a detour" on the way to "somewhere more interesting", valuable to the extent it contributes to the practice of theorizing in aid of political insight. His interest in "reading" conjunctural dynamics was closely related to the importance of the "war of position" for contesting and rearticulating what Raymond Williams called the 'lived system of meanings and values' through which hegemonic power is constantly being reestablished across diverse sites. This emphasis aligns with planning theory's long-standing orientation towards action, but what are its implications and how might they be related to the contemporary historical moment? The first thing that must be said is that it is, of course, incredibly hard to see how the contemporary political crisis in the UK will be resolved -there is presently little sense of a stable settlement around a "dominant and effective system of values" in Britain. The ongoing struggle of political ideas will ultimately help determine whether new phases of neoliberal hegemony follow the creative destruction of Brexit or whether an alternative hegemonic settlement emerges to secure a new conjuncture. Within the uncertainty created by this broader political struggle in the UK, it is correspondingly challenging to read the potential for political action around planning in England. However, its nature as a relatively autonomous space of ideological contestation suggests potential does exist to articulate progressive alternatives to the dominant neoliberal problematisation of planning, rather than passively responding to the ideological agendas of successive national governments as has been the case over recent decades. This potential for progressive ideological renewal is arguably stronger in periods of crisis and uncertainty, although, as immediately following the global financial crisis, they can also be swiftly closed off. Due to these contingencies, any progressive project for planning would require active ideological work to shape a fundamental rethinking of planning, away from long-standing technical or professional understandings, and towards a more progressive political sensibility. Following Hall, it would need to work 'on the grounds of already constituted social practices and lived ideologies' , articulating positions that resonate with and rework the sphere of popular common-sense where hegemony is constantly renewed. This would require associating planning with a form of "populist" reason, and the "emotional investments" that ideology seeks to mobilise, securing popular support for new understandings of planning and bringing political pressure for change to bear on policymakers. In this regard, the emergence of active political struggle over land, the profits of private sector house-builders, the exclusion of increasing numbers of people from adequate housing and the negative consequences of deregulated development all have the potential to tap into significant strands of thought and feeling at the intersection of contradictions which potentially challenge aspects of the neoliberal settlement. The historical roots of contemporary planning as part of broader movements for reform of housing and land, spurred by widespread popular support, suggest the potential to reposition planning in such a way . By "thinking conjuncturally" about the ideological appeal of planning could progressive planners once again open opportunities to move beyond theory, towards "somewhere more interesting"? --- Conclusion This paper has explored the potential value of Stuart Hall's approach to conjunctural analysis as an analytical orientation for exploring the complex relations between ideology and planning. We have argued that Hall's approach offers a style of analytical thinking attentive to key problems that must be confronted in order to understand how ideology frames the dominant forms of reason through which planning might aspire to "guide history". The paper has made three main contributions to planning theory in this respect. Firstly, through an account of hegemony attentive to the continuous contestations involved in its reproduction, we have tried to position struggles over planning within a broader conjuncture whilst resisting any idea that planning ideas are straightforwardly determined by any hegemonic ideology. We have therefore shown how employing conjunctural analysis as a "style of analytical thinking" has the potential to illuminate both the role of planning as a site of struggle for hegemony in the broader conjuncture, and the role of political ideology in influencing, legitimising and responding to change in planning ideas and practices. Secondly, we have shown the importance of exploring the role of ideology in relation to a range of other determinants of historical change. We have illustrated this by exploring the role of the political ideology of Conservative-led governments in securing continuity and change in planning ideas and practices in England since 2010. This has enabled us to focus on both the well-remarked tensions and inconsistencies in a particular government's ideological agenda for planning, but also to relate these to the material forces and political pressures the ideology has encountered and been articulated against, particularly with regard to the politics of planning for housing. The paper has therefore drawn attention to the ideological not as a realm where dominant power relations are unwaveringly reproduced but as a terrain of struggle and contestation; part of a "war of position" whose stakes include the definition of the proper role and purpose of planning. Thirdly, the paper has sought to respond to planning theory's foundational commitment towards action by illustrating that conjunctural analysis has practical political value as a means of "diagnosing the present" to inform strategies for reshaping planning ideas and practices, not least by rethinking the ideological appeal of planning itself and its "positioning" on the grounds of popular common-sense. Conjunctural analysis therefore positions planning as a space where ideological struggle takes place within the frame of an always contingent cultural hegemony. This struggle may result in the reproduction of dominant forces but it can also open space for alternative articulations which have the potential to transform dominant logics for both planning and the wider conjuncture, revealing routes to progressive political action. In this sense, we have argued that ideology matters for planning and must remain central to a political analysis of planning ideas, not in order to resign ourselves to the unyielding dominance of omnipotent forces like "neoliberalism" but as a path to understanding how better ideas of planning might be shaped. That such spaces could presently be opening up around both the pressures of the "housing crisis" in England and the wider political crises enveloping the neoliberal conjuncture illustrates the opportunities -it is up to those who would like to see more radical change to seize the moment.

This paper explores the value of Stuart Hall's approach to conjunctural analysis for examining the complex relations between ideology and planning. By "thinking conjuncturally" we explore planning as a site where multiple social, economic and political forces coalesce; ideology is one of these forces whose role and influence must be tracked alongside others. To illustrate this we draw on recent and ongoing planning reforms in England and their relationship with housing development. Highlighting the faltering role of a particular ideological formation in 'suturing together contradictory lines of argument and emotional investments' (Hall, 2011, 713) around housing and planning, the paper draws attention to planning as a space where ideological struggle takes place within the frame of a broader, contingent cultural hegemony. This struggle may help to reaffirm that hegemony but it can also open space for alternative visions to be articulated, with potential to transform dominant logics of planning and reveal routes to practical and progressive action.

I. INTRODUCTION For [1], smart cities should use a citizen-centered approach, so participatory technologies become important in this regard. Various technological advances have provided new opportunities for the participation of society in public management. These new possibilities may be considered stimuli for new scenarios in which the space for citizen participation in policy decisions could be discussed and expanded again. One phenomenon to be considered in this context is the popularization of social media and their role in promoting citizenship. For Agarwal et al. [2], among many others, social media platforms have profoundly impacted human behavior and lifestyle. For example, in Brazil's recent presidential elections, social media had a considerable influence, as identified in the work of [3], which analyzed information shared on Twit- The associate editor coordinating the review of this manuscript and approving it for publication was Anna Visvizi . ter during the election campaign period. In [4] the authors described a platform that collects and processes tweets to produce metrics related to e-Participation. Resende et al. [5] also verified this impact by analyzing WhatsApp's shared misinformation about the first round of the 2018 presidential election and the national truck drivers' strike in Brazil, which showed that social movement, in the form of social media protests, can be considered an example of possibilities for expanding these spaces. Normally, people directly or indirectly involved in a specific societal problem engage in extensive discussions on social media. Berntzen and Johannessen [6] stated that discussion forums and social media facilitate citizen participation, regardless of time and space. However, it is essential to highlight that the discussions take place in a disorderly manner, without systematization, and often, the parties involved do not seek to reach a practical result that proposes a possible solution to the problem in question. Thus, it is necessary to consider that the momentum requires reflection that would lead to an improvement in these possibilities so that the potential of these movements can be effectively exploited. Another important consideration regarding this new modality of organization and action in society is the new mobilization strategies. Araújo et al. [7] stated that society's activism has taken on new forms, and in this same work, they described web activism as a set of practices -used in network -aimed at broadening society's collaboration in defense of specific causes. According to the authors, web activism expands the possibilities of society to pressure the State to modify decisions and implement public policies that meet the needs and demands of these social groups. Aligned with the above scenario, there are several initiatives aimed at developing tools that facilitate or promote citizen participation. When participation is supported by information and communication technologies, it is known as electronic participation or e-participation [8]. In order for e-participation to be effective, there are still many questions that need to be investigated. One of the barriers to this type of tool being used is the low engagement of citizens who are not motivated to participate, which can be caused by several factors. Among them, it is possible to cite issues related to social and political aspects; for example, discrediting the engagement of the political sphere, as well as citizens' lack of interest due to poor political formation. These issues are essential and require a multidisciplinary analysis that goes beyond the computational aspect of this type of tool, and adds complexity to the theme. Thus, the objective of this work was to analyze the described context and elaborate an artifact that, starting from the organization of the elements that characterize the discussion of societal problems, could improve the existing social and political system, and somehow make the city smarter. For this, we firstly conducted a study of the existing initiatives to identify their strengths and weaknesses, in order to inform the design of the artifact. Subsequently, the computational tool denominated SoPa was developed, with the objective of enabling and facilitating the discussion of societal problems. The idealization of this artifact was based on technologies for social media and argument visualization. The use of these technologies is a differential compared to the other tools analyzed. SoPa can capture relevant information such as citizens' opinions about their local environment. This collected information can be used in various ways for decision making by the public sector, as a solution for improving the local environment, the conviviality, and the integration of society. A case study was conducted to analyze the viability of using SoPa as an alternative for discussion of societal problems. In the analysis, we investigated the perception and behavior of users of the tool, in order to identify solutions for improving engagement in e-participation. Thus, the evaluation enabled the identification of important factors that may impact the motivation of citizens. This work is structured as follows: section 2 presents a summary of related papers that served as the basis and comparison for this research; section 3 presents the methodology used for the analysis; section 4 presents the proposed artifact ; section 5 evaluates, analyzes, and discusses the results of the case study; and section 6 presents a discussion on the contributions and the limitations of the study, as well as suggestions for future works. --- II. BACKGROUND AND RELATED WORKS Kuru and Ansell [9] looked at how to develop citizen-and resource-centric smarter cities based on the recent smart city development. According to [10], participation is the heart of the democratic lifestyle. Thomas [11] stated that citizen engagement fosters better decision making that, in turn, favors society. Roberts [12] argued that citizen participation is fundamental to democracy, and although the active role of citizens in government is important, there is still skepticism about its effectiveness. However, for Box [13], there is a belief that citizen involvement in democracy generates a greater appreciation of administrators. Rifkin and Kangere [14] presented participation as a complex and challenging alternative that improves people's lives. For Irvin and Stansbury [15], both government and citizens benefit from participation. Santamaría-Philco et al. [16] analyzed current literature in the field of electronic participation through a systematic mapping of the research work carried out in the period 2000-2019. Although there are many innovations and initiatives that make participation effective, there is still a long way to go to make participation effectively part of the routine of citizens [53]. Fung [17] indicated engagement as being one of the challenges of citizen participation. Even though it may be clear that citizens and government benefit from participation, Bingham et al. [18] stated that engagement in the political sphere is a challenge because, in most contexts, the government either has no motivation or ignores the opinion of society. Arnstein [19] stated that the participation of the governed in government is a fundamental part of democracy. The author defined a typology with eight levels of participation, using rungs as a metaphor. The definitions of the rungs -reaffirmed in [20] -are as follows: Manipulation and Therapy, which represent levels of non-participation; Informing; Consultation and Placation, which advance to ''tokenism'', and can be defined as an early defense strategy, in which minor concessions are made to a minority group in order to avoid any accusations of prejudice or discrimination. In this context, ''tokenism'' can be interpreted as a scenario in which citizens can hear and be heard; however, it cannot yet guarantee that opinions are considered. Rung is Partnership, in which citizens can partner and commit to decisions. The highest rungs are Delegated Power and Citizen Control, in which citizens gain a more significant influence on decisions and full managerial power. According to [21], democracy is the form of government in which the people exercise sovereign power. Therefore, metaphorically, it can be said that the progression upward on Arnstein's rungs represents the achievement of higher levels of democracy since the direct or indirect participation of citizens in government is the basis for a democratic political system. Additionally, the higher the rung, the more necessary the use of technology to enable or facilitate this participation. The relationship between technology and democracy has been much discussed by many groups, researchers, politicians, citizens, activists, and others. Sampaio [22] and Luchmann [23] stated that political will is essential and that governments should consider technological resources as fundamental elements in their political management and urban development. Additionally, interest from the population in technologies is essential in order to make them beneficial tools for public administration. The possibility of using technological resources to support democratic practices was conceptually defined as Digital Democracy by [24]. Farias [25] defined Digital Democracy as a way of practicing electronic government, in which the population can interact directly with the public administration, exercising their political rights. Penteado et al. [26] stated that Digital Democracy does not mean a new form of democracy, but rather the use of the Web to consolidate it. Allan [27] indicated that technology has the power to deconstruct the representative democracy in which we live, making citizens more influential in public management. Landim [28] stated that Digital Democracy is associated with the use of devices, such as computers, mobile phones, applications, and tools, which foster discussions about political and social practices. Gomes [29] described five degrees of popular participation provided by the internet, which the author called degrees of Digital Democracy. The closer to one, the less the participation, and the closer to five, the greater the involvement of the population in decision making. Caetano et al. [30] classified resources and initiatives according to each defined degree of participation. Most of the time, e-government initiatives and resources were ranked in the lowest degrees of Digital Democracy. In the search for related works, tools and initiatives were found that have enabled e-participation to some degree. Table 1 shows some examples. Although there are already several related tools and initiatives, from the analysis it could be seen that the main challenge indicated by the literature -engagement -has not yet been solved. There are still several aspects to be investigated as factors that could motivate this engagement. Thus, the discussion about the results obtained in the case study of this work may contribute to the literature in relation to the motivation and engagement of citizens. --- III. RESEARCH METHOD The methodology used in this present work was Design Science Research , which, according to [39], is the methodology that establishes and enables the conducting of research when the ultimate goal is an artifact or a prescription. The authors also stated that, based on the understanding of the problem, the DSR seeks to build and evaluate artifacts that make it possible to transform situations by improving the state of their conditions. Hevner and Chatterjee [40] stated that the application of DSR is highly relevant to information systems because it combines the focus on the IT artifact with the high priority given to problem domain relevance. Dresch et al. [39] indicated DSR as being a problem-oriented research methodology that seeks to minimize the gap between theory and practice but does not necessarily seek the optimal solution, instead of seeking a satisfactory solution to the situation. In DSR, two cycles are defined for research development: the Design cycle, which aims to solve the problem practically; and the Rigor cycle, which aims to define theoretical conjectures that ground the creation of the artifact. To facilitate the understanding of the main elements of research using DSR, [41] drew up a map Fig. 1 shows the map prepared by Pimentel and adapted to the context of this present work. As shown in the map, the artifact is constructed to try to solve a problem in a given context, from conjectures that direct the elaboration of the artifact. In the map, it can also be seen that the evaluation occurred not only to validate the artifact, but also to investigate if the artifact diminished the identified problem and if there was a contribution to the theoretical conjectures. In adapting the map to this work, SoPa was idealized as an artifact to converge on the solution of the problem presented: the discussion of societal problems by citizens. The theoretical foundation for the design of SoPa was based on the analysis of other related artifacts, the tools and initiatives identified, and the investigation of computational techniques to define the requirements related to the Design cycle . Moreover, this idealization was driven by theoretical conjectures that are grounded in related theories; for example, the Issue-Based Information Systems proposed by [42], in which the objective is to visually represent a discussion; and the theory -affirmed by Card that information visualization can facilitate the understanding of information. The map also presents the experiment, which aims to verify if the conjectures are valid and if, in any way, the idealized artifact can contribute to the solution to the problem. In this present work, the experiment was conducted through a case study and evaluated through the application of a questionnaire. --- IV. SoPa-PARTICIPATORY SOCIETY For the idealization of SoPa, the strengths and weaknesses identified in the analysis of 17 related tools were considered. The analysis was presented in the work of [43] and contributed to the definition of features and attributes that should be considered when building the application. After formalizing the main idea that guided the construction of SoPa, it was necessary to evolve the representation of this understanding. For [44], at the project stage, any representation of an idea is a prototype. Thus, in order to help understand the functionalities and interface generation, prototypes were created that evolved as the proposal matured, using online tools that enable the creation of a user interface in the form of non-functional drawings. At this early stage, the first prototype of the tool was proposed by [45]. --- A. FEATURES Two modules and their objectives were defined as follows: • SoPa-Citizenship: to facilitate the discussion of societal problems and to open a channel in which citizens can give their opinion. • SoPa-Vis: to facilitate, through the visualization of information, the analysis of information and the creation of knowledge from this analysis. In the SoPa-Citizenship module, anyone can register in the tool. When registering, users must inform the city where they live, and they can add specialties to their profile. The city is the selection criterion used to list the problems presented to the user. A specialty represents the areas of knowledge or practice in which the citizen fits; for example, environment, health, public management, etc. These specialties can contribute to the discussion by providing more credibility to the information added by the user. Also in this module, users can enter city problems to be discussed. Any registered user can enter problems. The problems you enter can be associated with one or more categories; for example, sanitation and housing. The user can also insert problem-related media . One important module functionality is the similarity analysis of the problem inserted with other problems already existing in the tool. This analysis is performed automatically by the tool and returns a similarity index. Similar problems are presented to the user, who must decide whether to create a new problem or remain within the discussion about an existing problem. The degree of similarity is calculated using the Sorensen-Dice coefficient. The importance of this functionality reflects the concentration of citizens discussing a particular problem. Aggregating the correlated information is essential so that there are no parallel discussions on the same subject. When a user accesses SoPa, they are presented with a page that lists the problems already existing in the tool. In the page header, there are four search options available: My Problems, which filters the problems entered by the logged-in user; My City, which filters out problems pertaining to the city for which the user registered; Other Locations, which allows users to search for problems from other cities; and Categories, which lets you filter out problems that are being displayed by category. Also on this page, users can give a like to problems they find interesting and click on ''see more'' to see the problem they are interested in discussing. If the user clicks on ''see more'', the page will be directed to the discussion session, and the user may interact with it in several ways: • Insert comments about the problem • Propose one or more solutions to the problem discussed • Comment on other users' solution proposals, arguing for or against • Express a reaction by indicating whether or not you like the information given by other users User interactions in the discussion of the problem generate information that is systematically represented to facilitate understanding. The visualization created based on the IBIS argumentation system model [46] can be seen in more detail in Fig. 3. During the discussion period, the problem may be solved. In this case, the user who entered the problem may report that the problem has been resolved. The inserted solution may or may not be related to a proposal made during the discussion. The SoPa-Vis module was defined to address the need for reuse of previous information generated from visualization techniques. According to [47], information visualization seeks to transform a raw data set into a graphic and interactive representation, thus facilitating the process of understanding. Card [48] stated that the promise of information visualization is to accelerate understanding and action in a world with an increasing volume of information. In a context in which users have difficulty choosing the best visualization representation technique, Ribeiro [49] proposed a classification-based technique recommendation mechanism that can aid the automatic generation of visualizations in the tool. These theories grounded the SoPa-Vis module proposal and were considered in the definition of functionalities. The requirements defined for this module are intended to let users do the following: • Visualize demographic census data of cities that may help support the discussion raised. • Analyze data generated by the tool in the SoPa-Citizenship module . • Associate problems with online portal data sets and, from this association, automatically generate information visualization. • Visualize problems in a map, using geolocation libraries. • Define filters for data representation. • Export graphical representations and an HTML tag that points to the tool to allow the page to be reused in other applications. • Create, save, export, and share dashboards. Besides the two modules described, a need was identified for specific functionalities of a user profile, which have some function associated with public management, in order to: • Allow public queries to be created and, if necessary, choose a specific audience. • Allow open channels of communication with specific users for a better understanding of a solution proposal, for example. --- V. EVALUATION AND DISCUSSION An evaluation was performed to identify evidence that SoPa is suitable for solving the problem considered. This evidence was expected to support the theoretical conjectures considered. To identify minor improvements and validate functionality, an initial assessment was conducted in the city of Itajubá -a city with 96,869 inhabitants located in the southern state of Minas Gerais, Brazil. A citizen participation workshop was organized with members of the NGO Transparency Itajubá and a city councilor. The NGO is a nonprofit association of the city, for defending the interests of citizens through the development and defense of citizenship and ensuring transparency in all actions of the public authorities. Six people over the age of 40 who participated in the workshop were introduced to SoPa and instructed to use the tool. Some difficulties in the interaction with features, as well as places for possible improvements were observed. Participants also asked some questions that indicated the need for adjustments. Improvements and adjustments identified in the workshop were considered to make the first version available. In order to analyze SoPa in a real context, the approach used involved conducting an experiment with end-users. The data collection method was the questionnaire. The questions were elaborated in such a way that data were collected about the profile and the user's perception regarding the functionalities of the tool so that the utility of the tool could be inferred from the perspective of these users. In the initial period of the experiment, the tool was advertised through social media and by email. In an attempt to broaden the scope of the tool, promotional material was developed and then used on Facebook. Additionally, we tried the strategy of Growth Hacking in order to understand if this could really contribute to solving challenges related to engaging in e-participation initiatives. Siqueira [50] conducted a case study in which a proposed framework for operationalizing Growth Hacking was applied to the social media SoPa. The case study considerably impacted the level of engagement in social media, increasing the total number of registered users by 274.7%. The time for data collection was approximately 1 year, from 15 February 2018 to 30 January 2019. In this period, 646 participants registered, and of these, 115 answered the questionnaire. Besides the questionnaire responses, data related to the use of the tool were analyzed and captured through [51]. There were 1000 active sessions in the tool during the evaluation period, and the average session lasted approximately 7 minutes. The analysis tool also indicated that SoPa obtained 47.19% rejection -rejection of the tool by the user was considered to be when the session had no interaction and a duration of 0 seconds. In the questionnaire there were five questions that investigated the user's profile. Another important fact is that the answers to some questions were defined based on the five-point Likert scale. There was also space for the participant to post comments. In the analysis of the results, for the questions answered with the five-point Likert scale, the two positive extremes were considered to be an agreement with the statement of the question. The two negative extremes were treated as a disagreement with the statement. Thus, in order to measure agreement and disagreement, the sum of the respective extremes was calculated. Regarding the profile, the boxplot graph shows that users' ages ranged from 26 to 45 years, and the average age range was approximately 30 years. The graph also shows that there were some outliers over the age of 45. The registered users were from 330 different cities and, as shown in Fig. 5, the three cities with the largest number of users were the following: Itajubá, MG; Rio de Janeiro, RJ; and Sao Paulo, SP. The concentration of users in the city of Itajubá was due to the dissemination of the tool in the city discussion groups on Facebook, as well as directing the publications driven on social media. Although only 34.7% of users stated that they participate in some type of association or non-governmental organization that aims to improve life in society, 89.5% of participants stated that they had some interest in discussions about societal problems, as can be seen in Fig. 6, which indicates that the participant population really represents potential users. Additionally, only 24.3% stated that their work is somehow associated with questions involving societal problems, 49.5% stated that it is indirectly associated, and 26% stated that it is not associated. In order to find any relationships between user profile data and the outcome of the questions, an analysis was performed using the R language. The analysis considered the Pearson correlation coefficient, which can assume values between 1 and -1, with 1 being a perfect positive correlation between the two variables and -1 a perfect negative correlation. No correlations with a coefficient greater than 0.3 were found for profile data relationships. According to [52], when the coefficient varies between 0 and 0.3, the correlation may be considered to be negligible. Therefore, statistically, no significant relationships were found between user profile data and other questions. Also regarding the profile of the participants, in the graph presented in Fig. 7 it can be seen that, although some social media do not have as a main objective the provision of an environment for the discussion of societal problems, these networks have a significant number of users who use them for this purpose, which suggests the need to establish mechanisms that favor the possible use of these spaces as a mobilization tool. In social networks, for example, this discussion space is ample, with the user subject to any type of content. Despite there being discussions about societal problems in these spaces, and even groups created for this purpose, the dialogue is not qualified; therefore, any interaction occurs through comments or reactions. This lack of categorization or systematization of interactions can make it difficult to understand the discussion and reuse the data later. When the participants were asked if it became clear that the purpose of the SoPa tool is to map and discuss societal problems , 88.7% of respondents said yes. In Fig. 8, it can be seen that 83.4% of the participants agreed that the tool can guide the discussions in an organized manner. This organization can be considered to be an alternative, which indicates the systematization of the discussion and may, in some way, provide adequacy in this discussion space. This statement can be reinforced by the result presented in Fig. 9, in which only 1.7% of participants disagreed, to some extent, that the tool can facilitate discussion. It is natural to associate the result presented in Fig. 9 with the result presented in Fig. 10, because it is expected that the number of participants who consider that the tool facilitated the discussion would be proportional to the number of participants who believe that the tool is a consensus facilitator. Analyzing Fig. 9 and Fig. 10, it can be seen that there was a small difference in the number of participants who agreed to some extent with these statements, which may suggest coherence in this association. Fig. 11 shows that 80% of participants agreed that discussing problems in the tool can put pressure on local government. Also, 85.2% stated that the consensus established may intervene in the decision, as shown in Fig. 12. Fig. 13 presents the results showing a significant agreement of 92.1% among the participants, regarding the statement that the opinions about the proposed solutions can encourage discussion about the problem. Analyzing the data generated by the users when using the tool, it was possible to identify that, of the 115 users considered in the analysis, 52 did not perform any activity in the tool beyond the initial registration. This data may indicate that the activities were concentrated in only one group and that some of the users may have assumed the role of a viewer of the discussions. The result -shown in the graph in Fig. 14 -shows that 76.5% of participants felt free to give their opinion on the solution proposals of other users. However, by comparing this data with the number of comments and the number of reactions, it was possible to identify that most prefer communication through nonverbal language, using emojis. Therefore, this result suggests the need to analyze other resources that could stimulate more active participation through virtual writing. The reasons that justify the non-participation of users were investigated, and the results are shown in Fig. 15. Of the 62 participants who said they did not interact with the tool, 12 indicated that they did not know of any problem in the city that could be discussed in the tool. Also, at least eight participants stated they could not identify how to interact in the tool. This result suggests that it is necessary to reevaluate the interface defined for these features. For a more detailed conclusion regarding this aspect, a more detailed assessment of usability is required. For the alternative ''others'', some users commented that they did not add any problems because they did not have images to represent them. Additionally, some participants reported issues with graphic interface rendering on mobile devices and in some browsers, which highlights the need for an interface that is appropriate for different devices and platforms. Thus, it can be stated that the use of a version for mobile devices may -besides presenting a more pleasant experience for some users -broaden the possibilities of a VOLUME 8, 2020 FIGURE 16. Users' perspective regarding the ease in understanding the discussion provided. user to add features, such as photos, videos, and geolocation, that facilitate the understanding of the problem. As shown in the graph in Fig. 16, only 1.7% of users said they could not understand the figure with the discussion visually represented. This result suggests that the strategy for visualization of the argument was accepted by the participants. In order to evaluate its usefulness, users were asked if they agree that the visualization of the discussion could help in perceiving which solution proposal most pleases most users. The results of this question are shown in Fig. 17 -89.5% of the participants agreed to some extent with the statement. Regarding user satisfaction, it was investigated whether the visual features of the tool provided a pleasant experience. While some participants indicated issues with certain browsers and mobile devices, 76.5% of respondents said the tool provided a pleasant experience, as shown in Fig. 18. Also regarding user satisfaction, in the graph of Fig. 19 it can be seen that 83.4% of the participants stated that they would continue using the tool and would recommend it to a friend. This result can be compared with the number of users who accessed the tool more than once. As shown in Fig. 20, only 17.4% of users returned to use the tool. Regarding this aspect, the need to use resources that broaden the user's perception regarding the progress of the discussions can be considered. This can be done through notifications; for example, an email sent to the user when other users interact with the given problem. Additionally, it should be more rigorously investigated whether non-reuse is due to an inappropriate resource or lack of interest in the subject. Due to it being a social network that is not directed at entertainment, and participation is totally voluntary, questions such as this should be analyzed in order to identify which computing resources are more or less appropriate, and also to design approaches to motivation that go beyond the technical issue. To assist in the validation and identification of new indicators for the SoPa-Vis module, participants were asked which data would be useful from the user's perspective. Among the data listed, the participants indicated which information they considered to be most interesting -see Fig. 21. Some users suggested new data, such as geolocation monitoring of the problems inserted and a ranking of cities where the competent authorities have solved the problems. --- VI. FINAL CONSIDERATIONS In the scenario in which technological advances are changing society's capacity for political participation, this paper sought to analyze the context of e-participation by considering current technological resources, in order to propose an artifact that could improve the existing system. Initially, a study was conducted to identify the main elements and mechanisms needed to support the construction of a solution to the problem presented: the discussion of societal problems by citizens. During this stage, the mapping and analysis of existing tools and initiatives were performed, which enabled the identification of strengths and weaknesses, thereby contributing to the definition of the basic requirements for the elaboration of the artifact. These initial studies let us recognize the potential of social networks as an alternative, for promoting a space for debate and the visualization of argumentation as a strategy to represent this discussion in a systematized way, thus facilitating understanding. One of the contributions of this work is the results presented, obtained through the case study conducted in SoPa, which can help to understand the motivational aspects that may influence the engagement of citizens and the implementation of citizen participation. The artifact produced can also be considered to be a contribution. SoPa can be defined as an alternative, for solutions in a concrete reality that is the citizens' discussion of societal problems. A deep understanding of these problems was necessary in order to define the requirements for SoPa's development process. Additionally, there are several possibilities for using the data generated by SoPa to improve the local environment and social conviviality. One example is the use of the data generated in the tool to identify the satisfaction or dissatisfaction with the neighborhood where the users live. This information could assist in future decision making regarding investment in urban infrastructure. One evolutionary aspect would be the implementation of new features. Improvements were identified in the evaluation; for example, allowing any citizen -even those not registered -to view the problems and discussions. Another example is the need to organize the comment and proposal insertion fields in the discussion of the problem so that the interaction possibilities are clear to the user. Another important feature identified for improving the quality of the discussion is the addition of information, such as links and documents, about problems entered by other users. The idea would be to allow the user to insert complementary information on the discussion page, using external resources to support the argumentation. Additionally, with a more detailed study using data mining techniques, the analysis and classification of user-profiles could be performed, which would allow the automatic creation of discussion groups from the data entered in the tool and the identification of possible patterns that could be relevant to mobilize new users. --- JANO DE SOUZA graduated in mechanical engineering from the Federal University of Rio de Janeiro, in 1974, the master's degree in computer science from COPPE, Federal University of Rio de Janeiro, in 1978, and the Ph.D. degree in information systems from the University of East Anglia, in 1986. He was with Sabbatical leave at CERN, from 1989 to 1993 . His researches and teaches in computer science, focusing on the following subjects such as databases, knowledge management, social networks, CSCW, autonomic computing, and negotiation support systems. VOLUME 8, 2020

The recent political, economic, and social situation has given rise to question on the part of citizens regarding their own space for political participation. Social movements in the form of protests are an example of this growing need for society's participation. One thing that can expand these possibilities is technology. It is correct to affirm that the advancement of smart city and popularization of technologymore specifically, of social media -has established new opportunities to expand these virtual spaces. In line with this scenario, there are several initiatives whose objective is to develop tools that facilitate or promote citizen participation. However, there are still many issues that need to be investigated in order for the use of these tools to be effective. The objective of this work was to propose a tool that facilitates the discussion of societal problems by citizens. In the analysis of the results -obtained through an experiment with users to evaluate the effectiveness of the tool -it could be seen that, although the majority of users agreed that the discussion model and the proposed problem register can contribute to the real solution of the problem, it could also be seen that citizens still lack motivation and engagement -something that needs to be studied and improved.

Introduction HIV rates among African American men who have sex with men continue to be among the highest across populations. According to recent data from the Centers for Disease Control and Prevention , AAMSM represent 63% of new infections among all African American men, and 35% among all MSM. The situation for African American young men who have sex with men in particular is especially grave, as nearly two-thirds of all YMSM aged 13-24 years with HIV infection in 2008 were AAYMSM . In a HIV/AIDS trend analysis, AAYMSM displayed the greatest increase in the number of HIV/AIDS diagnoses, representing a 42% increase between 2005 to 2008 . In spite of the high prevalence of HIV/AIDS within the African American communities, there is limited research to better understand HIV risk and protective behaviors among populations of AAMSM and AAYMSM. As a result, there is only one evidence-based HIV prevention intervention for AAMSM and none designed specifically for AAYMSM. Further complicating the effective development of interventions with AAYMSM is lack of acknowledgement that AAYMSM are not a homogenous group. Indeed, subgroups exist that may require different methods and/or theoretical approaches to be effective. The House and Ball communities, which have been identified as potential high-risk populations, represent one such subgroup . --- House and Ball Communities In general, the House and Ball communities work in tandem to develop and support a community involving African American and Latino individuals of diverse sexual and gender identities, primarily AAYMSM and transgender women. Balls and Houses function as different entities, yet work together in forming the vibrant community often known as the Ballroom scene or community. Houses are different groups of individuals that compete against each other during Balls-underground events that reward individuals who win competitions focused around dance, athletics, and gender expression. The roots of the House and Ball communities originate from 1920s Harlem. Annual Harlem Balls of the 1920s involved working-class, mostly African American men under the age of 30 performing in elaborate and ostentatious female attire as a popular form of entertainment . Although Balls originated as a safe space for "female impersonators" to compete amongst one another, this community has become more inclusive of AAYMSM of different sexual and gender identities as well as Latino and Asian YMSM. House and Ball communities are currently present in major cities across the United States including Los Angeles, Oakland, Atlanta, Chicago, Philadelphia, Baltimore, and Washington, DC . Although Balls in their current form have occurred in other parts of the United States since the 1970s, it was not until 1998 that the first Ball occurred in Los Angeles. The limited research with these communities suggests that HIV is a major public health concern among this population. From 1998 to 2000, research on an outbreak of tuberculosis among House members in Baltimore and New York City found that 16 of the 26 House and Ball participants were HIV positive . This study highlights the importance of HIV research within these communities as well as the closely connected nature of its members, which has epidemiological implications for the spread and transmission of disease. In a more recent study of the New York City House and Ball scene, Murrill et al. found a seroprevalence rate of 20%, with 73% of those testing positive for HIV unaware of their HIV status . A recent qualitative study describes the House and Ball communities in the San Francisco and Detroit areas as communities that are accepting of AAYMSM, as well as African Americans of other gender and sexual identities . Houses are identified as having a sense of family, friendship, and support. Sanchez et al. also suggest that support is an integral component of the House and Ball communities that assuages the negative effects of stigma and life stress on risktaking behaviors . For young men who have experienced instances of discrimination based on race/ethnicity and/or sexual identity, this sense of support may be highly valued and difficult to find outside of a community such as the Ballroom scene. --- Discrimination: Racism, Homophobia and Related Risk Research examining the relationship between forms of discrimination and HIV risk behaviors is still in its infancy, especially for AAYMSM. While the connection between the two is still unclear, it is evident that African American youth continue to experience various forms of discrimination in their daily lives . Most specifically related to this manuscript are experiences AA youth endure that revolve around exclusion and being perceived as incompetent or lacking the ability to succeed. The research suggests these forms of discrimination occur frequently among AA youth . LGBT youth, in general, experience higher rates of victimization and discrimination than their non-LGBT identified counterparts. These experiences occur in employment, housing, school and other venues . Limited research has been conducted with AAYMSM and discrimination, although it is clear that AAYMSM encounter discrimination in the forms of heterosexism and racism. For instance, in one study of 526 ethnically diverse YMSM, African American respondents were significantly more likely than Latino and White respondents to report experiences of racism in sexual relationships and/or gay social settings or institutional racism. AAYMSM who reported social/sexual racism were at a significantly greater risk for drug use than those not reporting social/sexual racism . In terms of homophobia experienced by youth of color, qualitative research suggests that young African American men encounter homophobia within various facets of their lives including church, family, and societal settings . Research with adult AAMSM also illustrates challenges revolving around racism and heterosexism . For example., Choi and colleagues discuss coping strategies used by AAMSM who encounter racism in mostly White gay spaces and heterosexism in African American communities . --- Resilience and Social Support These experiences of homophobia, and other types of minority stress , can result in psychological distress which can be related to suicidality, anxiety, guilt, and sexual problems . Similarly, it has been found that social support, and seeking social support if one is ostracized or excluded from other social outlets, can be a source of resilience or protection from the negative outcomes related to stigma and discrimination . One model to explain the protective roles of social support on stress is known as the stress-buffering effect and supposes that adequate social support will offset or moderate the impact of stress on health . While there is no agreement on how to define or operationalize resilience or even what specifically constitutes resiliency within individuals, currently, one of the most common definitions of resilience is: positive adaptation despite adversity . Luthar has called resilience a construct with two distinct dimensions: significant adversity and positive adaptation. From this perspective, resilience is never directly measured but is indirectly inferred from evidence of these dimensions. It can be agreed that what is considered to be resilience should be studied within the context of the risk being studied and the index population. Specifically, if a particular condition confers highrisk for some outcomes within certain populations then focusing on those aspects of resiliency that address those conditions and risks should be prioritized over other aspects of resiliency. In this context, social support would therefore be considered essential given its ability to offset the negative outcomes of discrimination and stigma. --- Subcultures Subcultures are generally defined as a group of people with a culture which differentiates them from the larger culture to which they belong. Hebdige argued that subcultures bring together like-minded individuals who feel neglected by societal standards and allow them to develop a sense of identity. Research among youth who feel marginalized from more mainstream society indicates that these youth may form or join a subculture to provide them support and identity . For instance, Wilkins writes that White youth who do not excel in traditional avenues of success may participate in Goth subculture in order to claim membership to a community, develop intimate relationships, and gain social visibility; thus, resulting in validation and desirability. Other groups participate in subcultures for sociality, bonding, or and/or status, including rave, circuit party, youth street gang, and gamer subcultures . The House and Ball communities may represent another subculture that provides support and a positive identity to its members. This ability for marginalized youth to seek out their own support networks suggests a quality of resiliency, specifically that labeled by Herrick et al. as "social creativity" which allows its members to identify new or "alternative" venues for social support. Social creativity counters or addresses the sense of loneliness and lack of social support for individuals who, for a myriad of reasons, may not be fully accepted into mainstream society. We believe that the House and Ball communities offer its members this sense of social creativity through its family networks and other organizational structures. The limited research with these communities suggests that the House and Ball scene is both a community at high-risk for HIV and other infectious diseases, and, conversely, a place that may offer its members support and acceptance. It is this sense of support and acceptance that the present study seeks to investigate. Following the call of recent researchers to investigate the resiliency of young gay men rather than taking a deficit approach , this study seeks to identify the sources of resilience and strength that exist within the House and Ball communities. Through identifying the benefits and positive motivating factors that exist within these communities, researchers and interventionists will be better prepared to design community-level prevention interventions that build on the resiliency of Ballroom community members. This manuscript seeks to identify aspects of resiliency within the House and Ball communities in order to identify supportive mechanisms that can be leveraged for intervention development. Building on the work of Herrick and colleagues , we have identified sources of resiliency within the House and Ball communities and through the qualitative data begin to build a grounded theory approach to studying resiliency within this population. This will in turn be used as a guide for developing and/or adapting HIV prevention interventions for this vulnerable community. --- Methods The present study utilized a number of different methods including a survey administered at House and Ball events, focus groups with House members and semi-structured qualitative interviews with young men who attend Balls but are not House members. The study was a collaborative effort between the research team and the House and Ball communities. As such, the House and Ball community members were involved in the study design and methods development through participation in a community advisory board . All study procedures were presented to local House leaders in order to ensure that the methods were not intrusive to the community's activities and that they were appropriate for the target population. --- Quantitative Data Collection and Measures We conducted a confidential survey to better understand the HIV risk and protective behaviors among persons involved in the Los Angeles House and Ball communities. Individuals were recruited regardless of gender, sexual identity or behavior in order to represent the entire community of individuals attending Balls in Los Angeles. Between February 2009 and January 2010, 263 unduplicated surveys were completed at 12 survey events. House and Ball community members were eligible to participate if they attended an event during the study time period and had not previously participated in the research survey. Sampling procedures were modeled after the Healthy Young Men's Study, with venue selection and participant recruitment adapted for the target community . Recruitment venues were categorized into three types: Balls, House meetings, and community events. Events and venues included in the sampling frame had at least a 2-hour time period with an expected yield of at least 4 House and Ball community members. Private survey areas were created at Balls and other events through the use of portable "voting booths" designed for the project. Sampling periods typically occurred during late-night or early-morning hours. Study staff approached persons who entered the designated venue to administer screening questions to assess eligibility of each person. A total of 296 people were found eligible to take the survey; 287 completed the survey and a total of 263 unduplicated surveys were completed . Eligible persons were escorted to the private survey booths to complete the data collection activity. Respondents completed a 30-45 minute interviewer administered survey on site; a portion of the survey relating to substance use and sexual behavior was self-administered with audio computer-assisted self-interview technology. All respondents provided written informed consent. For persons younger than 18, a waiver of parental permission was obtained. Participants received a $40 incentive for completing this survey. The survey questions assessed social and demographic characteristics, sexual identity and attraction, experiences of racism and homophobia, participation in the House and Ball communities and connection to communities , as well as motivations for joining Houses and/or walking in Balls. Demographic variables-Participants were asked to report their: gender; age; race/ ethnicity; residence; employment status; sexual identity; and sexual attraction. House and Ball Scene Involvement-A dichotomous variable was created to measure involvement in the House and Ball community. This variable was comprised of a measure indicating House membership and another indicating having recently walked in a Ball. Those who were House members and/or had recently walked in a Ball were scored as 1; all others were scored as 0. We believe that this as an appropriate proxy for House and Ball involvement as, based on observations and discussions with community leaders, we have found that those in Houses or who have walked are the most involved. This measure also captures those who may be highly involved in the scene but are "in between Houses" . Motivations for Attending Balls-Using a scale developed in partnership with House leaders, questions were developed to assess motivations for attending Balls. Participants were asked how much of a reason various motivations are for their participation. Items were scored on a five-point scale . Based on factor analyses conducted with this scale, a composite scale for attending Balls to receive social support was created using the first four items named above . Other motivations were treated as single item measures. Experiences of Rejection and Discrimination-Experiences of lifetime homophobia and racism experienced while growing up were measured using scales developed by Díaz and colleagues . To measure experiences of homophobia, we used a subset of items measuring verbal harassment and physical assaults in relation to both perceived sexual orientation and gender nonconformity . To measure racism, we chose general items measuring institutional forms of racism, physical assault due to race, and items that focused on experiences of racism in gay social settings and/or sexual relationships. All items used a 4-item response format . Alphas calculated for these racism scales were .70 and .84, respectively. Internalized homophobia was measured using a shortened version of Ross and Simon-Rosser's internalized homophobia scale which uses a 4-point scale to measure elements of internalized homophobia . Connectedness to Community-Items developed for a prior study were used to assess participants' feelings of connection to the various communities in which they interact. Items included the community in which they grew up, as well as the gay, ethnic, school, work, spiritual/religious, club/party, Ball, and House communities. All items used a 4-item response format and were treated as individual items in this analysis. --- Qualitative Data Collection and Measures Between July 2008 and December 2009, 45 respondents were identified and recruited to participate in eight semi-structured focus group discussions. Through our community engagement activities and participant observations, we identified and approached each of the local leaders and their Houses to participate in this portion of the data collection. Specifically, research team members attended House meetings and other events to explain the focus groups and obtain contact information from those interested in participating. Once this information was collected, a date and time was set and follow-up calls and emails were sent. Participants included members from seven different Houses in Los Angeles. The focus group discussion guide was designed to gather in-depth information on the structural, social and cultural characteristics of the Houses; challenges members experience in the House and Ball scene; perceived benefits of participation; House rules, activities, and communication; relationships within and outside the House; values, norms and expectations related to HIV/ STI risk behaviors; and receptiveness to interventions. Each focus group lasted 1.5 to 2.5 hours and was digitally recorded and professionally transcribed. All focus groups were conducted in the project offices. Respondents were provided a $25 incentive for completing the focus group. In order to better understand the experiences of young men who attend the Balls but choose not to be a House member, we completed semi-structured qualitative interviews with Ball spectators. Participants were recruited based on responses to key survey items. When completing the quantitative survey, if a respondent reported that he was: 1) male; 2) lived in Los Angeles County; and 3) had never been a House member, a programmed message appeared on the computer screen explaining that he was eligible for an additional part of the study. A total of 72 survey respondents met this eligibility, and we interviewed a third of those eligible . Project team members explained this additional portion and, if the respondent was interested, contact information was obtained in order to schedule the subsequent qualitative interview. The interview discussion guide was designed to obtain indepth data on topics such as: first experiences in the Ball scene; role in scene; social and sexual networks; extent individuals serve as a bridge to other social networks/communities; knowledge/attitudes and perceptions of STIs/HIV/AIDS and health; and perceptions of sexuality. Each interview lasted 1 to 1 ½ hours and was digitally recorded and professionally transcribed. All interviews were conducted in the project offices or a location convenient to the respondent . Respondents were provided a $45 incentive for completing the interview. All study procedures were approved by the Institutional Review Board at Children's Hospital Los Angeles. --- Analysis Bivariate analyses were conducted to identify variables associated with House membership and having recently walked in a Ball. Associations between these two outcomes and continuous variables were established using independent sample t-tests; associations between categorical variables and these two outcomes were established using Chi-square or Fisher's exact tests. An a priori alpha level of 0.05 was used to determine statistical significance; however due to the exploratory nature of this study, marginally significant results are also reported. Due to the large number of tests that were conducted we employed the false discovery rate controlling procedure described by Benjamini and Hochberg , which is a more powerful alternative to overly conservative adjustment measures. The qualitative analysis for this manuscript utilized a "constant comparative" approach, an aspect of grounded theory that entails the simultaneous process of data collection, analysis and description. In this process, data are analyzed for patterns and themes to discover the most salient categories, as well as any emergent theoretical implications. As the data are collected, they are immediately analyzed for patterns and themes, with a primary objective of discovering theory implicit in the data. Interview and focus group transcripts were included in the analysis. Atlas.ti was used for coding and analysis of relationships between and within text segments. Members of the research team reviewed an initial sample of interviews to identify key themes, which formed the basis of the project codebook. Codes focusing on a range of topics were identified and defined based on the key constructs included in the discussion guide. The codebook was modified as needed, and once finalized, three members of the research team were responsible for coding the interviews. To establish the coding system, 15% of the transcripts were double-coded. Differences in coding were discussed and resolved by the team. The open coding process included refining codes based on the data. Codes related to House activities, benefits, reasons for participation and discrimination were included in the current analysis. This process led to the structure of the present study which: 1) provides an overview of instances of discrimination experienced by respondents; and 2) using a mixed methods approach, describes the benefits and motivations for participating in the House and Ball communities. --- Results --- Demographics As summarized in Table 1, a total of 263 participants completed the quantitative survey, including 7 American Indian/Native American, 3 Asian/Asian American/Pacific Islander, 218 Black/African American, 17 Latino/Hispanic, 2 White/ Caucasian, and 16 identifying as some other ethnicity; nearly one-third of the sample identified with more than one ethnicity. The average age was 23.74 years, with 50% of the sample being 21-25 years old. A majority of the respondents reported living either in their own place/apartment or with family . While the majority reported being employed or both in school and employed, nearly a quarter also reported being neither in school nor employed. Eighty-nine percent identified their gender as male, with 66% identifying as gay or some other same-sex sexual identity. Interestingly, although only 24% identified as bisexual, nearly double reported an attraction to both men and women, a proportion nearly similar to those reporting an attraction to men exclusively . --- Bivariate Associations of Motivations for Participation As presented in Table 2, there were a number of bivariate associations between motivations to attend Balls, experiences of rejection and discrimination, connection to community and being a House member and/or having walked in a Ball. Statistically significant relationships emerged between Ball involvement and seeking to "receive social support" , seeking "to feel validated" , and seeking to "walk in Ball categories" . In addition, those who were more involved in the House/ Ball community reported higher experiences of homophobia , feeling more a part of the gay community , and trended toward feeling more a part of their school community . --- Experiences of Homophobia Family-Interviews with members of the Ballroom scene support the idea that experiences of rejection, racism and homophobia are common experiences for AAYMSM. When asked to describe what brought them to the scene or what attracted them to the scene, typical responses focused on feelings of acceptance and lack of judgment. Young men in this sample reported experiencing judgment from family, friends and their communities based on their sexual identity. Young men generally described sensing they were "this way" or gay at a young age, but felt the need to suppress that part of themselves in order to maintain family ties. Well, the thing is I actually found out I was this way when I was around 10 years old. I: This way… okay. R: [whispering] Gay. And I never did come out. I didn't come out until 12 th grade. So throughout the years in which I kind of figured out who I was, which is gay, I kind of hid in the darkness because my grandma would always say, 'Don't be like this, you might be neglected, rejected. You just might be put aside'. I never, especially when it comes to family, I would never wanna know that kind of feeling from them. For some young men, the fear of rejection from family and friends was related to cultural values. For example, Brian is a young man with a Haitian background. He related that his mother and father maintained their traditional views toward homosexuality and this was in direct contrast to his own beliefs, which he felt the need to hide from his family. I come from a Caribbean background and homosexuality coming from a Caribbean background, it just doesn't mesh well. It's oil and water. So when you're dealing with proud, Caribbean people who love their culture and bring parts of their culture to America where they're trying to instill that into their children and that coupled with the fact that American culture being as progressive as we think we are, it's not a good mix. These experiences were described by respondents as making them feel badly about themselves, contributing to what were alternatively described as inferiority complexes, low self-confidence or a negative self-image. My self-confidence is very low, even though a lot of my friends and people I never knew before, they're always tryin' to make me higher but it kills me because if I'm not accepted by my family, it's like I'm not accepted by nobody. In addition to contributing to respondents' negative emotions, young men also reported that their parents at times made comments about changing their behavior to become heterosexual. "Dad says 'stop' and we all know what stop means. What are you doing? Stop." While respondents seemed to believe that this advice was given to them in order to protect them from discrimination from the "outside world", the fact that these messages came from family often led young men to feel a lack of support at home, compelling them to seek support in other places. Some members of the Ballroom scene reported taking on the role as "mentors" for the young men who arrived in the community without a support system in place. These were typically young men who had been forced to leave their homes once their family learned of their sexual identity. There was you can say flack in the gay community. A lot of the children that came up gay, their parents had put them out, stuff like that. They had left their home… Runaways and all that stuff and they came to me and they stayed with me. So that's when I help them as far as food and shelter and all that type of stuff. So, as they were doing that they were looking and getting into the scene, the Ball scene. Although many participants felt a lack of support from family because of their sexual orientation, others spoke about finding acceptance within their families. One House member begins to explain that he is more comfortable around the female members of his family but adds that his larger family is also comfortable with his sexual orientation. I feel more comfortable around the girls and the women in my family. I can talk to them about really anything. And they were the first persons I came out to. Like I was never really scared to tell anybody in my family. And they're all like, my whole family is comfortable with it. Nobody discourages it, nobody said anything, bad things. Like I could bring friends around my whole entire family, like to family events and all that. Community-This sense of possible rejection from friends and families seemed to also contribute to respondents' awareness of how individuals present themselves to others. For example, one young man described members of the Ballroom community as "gayer" than other communities, a perception that seemed to minimize his contact with Ballroom members outside of typical Ballroom venues . Another respondent, when asked to define Ballroom terms such as "femme queen" or "butch queen", felt that "butch queens" were the preferred illusion, because it would lessen homophobic responses from those outside the scene. Butch queens are cool…okay, well femme queens are guys who are kind of gay and they don't really care, they don't try and hide it, they're just free. And butch queens are guys who do everything that femme queens do, but they act straight, they talk straight, they dress real straight and you would be able to be undetectable… I think they have it a lot easier. I'm not saying they're not conflicted but if you can't tell someone's a certain way right away, you just kind of embrace them… This respondent further elaborated that performing as a butch queen would be easier, and may be the preference for some young men because they are better able to "blend into" the larger gay community and society. Several felt that the larger gay community was also prejudiced against African Americans, so the need to be discreet was important, especially because there were limited "Black crowds", or spaces open to African Americans, within the gay community. I think what a lot of the butch queens have told me, that I've met, it's kind of like I'm already Black, I mean and to have the gay thing, it's like "Fuck, I don't want that shit". It's just another reason for people to hate on me…Cause the gay community doesn't just say "Come on in everybody, let's all just hug, Kumbaya". It's not fuckin' like that. I mean television and maybe movies and magazines are all this big rainbow. All lots of love. It's not always like that. You know, a lot of shadiness and maybe unfriendliness. This sense of being able to "pass" in the larger community was important for some respondents, as they felt that the larger African American community tended to "look down upon gays". For some, this led to them feeling the need to be discreet in their appearance and behavior so that they were not further stigmatized in their communities. This also seemed to contribute to the perception that some AAYMSM may describe themselves as "bisexual" or on the "down low" in order to fit into the larger society more easily. One older respondent who had been a part of the Ballroom scene off and on for many years stated: You'll find that a lot of young Black men, who are not gay in appearance, will identify themselves as bisexual, because they don't want to say they're gay. But I realize that there are a lot of problems in their lives for young gay males. Problems with their family, rejection, stuff like that. While this perception seemed to be relatively common among respondents, several also described a sense of disdain for the term and idea of being "on the down low". You don't want people knowing about you. You are really down low. Your family doesn't really know about you. I think this is really silly not even so much stupid, just silly…Because it's just, I don't know, it's like you are lying to yourself. You don't want people to know and I understand some people are not comfortable with people knowing about them but at the same time it's kind of like you are only lying to yourself. --- Benefits and Motivations for Participation Social Creativity -Seeking Family and Support-Respondents shared their first encounters with the Ballroom scene and what initially attracted them to it. They also described their first meetings with their House parents and how this first impression of a House parent helped them to decide the "right" House for them. They needed to "click" with the parent and also generally needed to see the Houses in action at the Balls before making a decision. When observing Houses, they mentioned looking for things such as "togetherness" and "unity" . For some respondents, the organizational structure of the Houses, with a Mother and/or Father, was identified as the primary benefit of being a part of the Ballroom scene. As described above, some respondents experienced discrimination based on their sexuality from friends and family; some even were forced to leave home because of this. Thus, the family structure of the Houses provided an alternative family, complete with brothers and sisters. Honestly I don't really have any support as far as I never had family, never and I am just now getting… my mom just doesn't understand. I just got into it with her about this today. So, basically support, family, somebody to be there because I don't have that. One respondent described this as "morale", indicating a sense of support through this family structure. Yeah, there is a lot of morale I think that happens in the House, good morale because we take it literal. I think when we say mothers and fathers and brothers, I think we take that literal to a certain extent because we would treat these people like our regular brothers and sisters. This family structure differed across Houses, with some Houses seen as more competitive or "trying to make a name". With this competitiveness also came issues and more fighting; this was not necessarily the ideal structure for everyone, as one respondent explained: A lot of the Houses claim to be brother and sister but there is so much issues between them. They all are used to going out always trying to fight or trying to make a name for themselves and she [my House mother] didn't want the House to be like that. She wanted it to be more of a unity, actually like a fraternity or whatever. So, just like a brotherhood or sisterhood or whatever. So, and I was like, "Okay, I like that because of the unity," and came off like actually a mother, like genuinely like a mother figure. Seeking Social Support through Houses-The focus groups and interviews clearly identified two different types of Houses, those that were more family oriented and those that were organized more around the competitions at Balls. It seemed that for most focus group participants, greater benefits were recognized through the family-like structure, a place where members could simply "hang out and we won't talk about the Ball at all. We will just hang out and talk about problems we are all having, how we feel about these problems. So, it's almost--it's literally like a family". This support seemed to be viewed as bidirectional, providing the member not only with individuals to care for him but also a venue for members to care for others, giving them a chance to help others as well: "to be a part of something bigger. More than Ball scenes. It's like somebody to actually care for and care for me as well." While the benefits of the support provided by the family structure seemed to be of primary importance, the competitions themselves -and their competitive nature -were also seen as being a place where respondents could reap the benefits of the support of their House family. Respondents described the preparations for a Ball as a time of "anticipation", a time for their House family to work together creating costumes and illusions for the upcoming Ball. The competitions also provided a time for the House family to show their support, "There is nothing like having your House behind you chanting and loud for you". One respondent was able to bridge both of these features of the House by pointing out aspects of the togetherness and "positive" nature of the House, while also indicating that it was important to be in a winning organization: I wanted something that was more family oriented because when I first started out it was so much negativity, drugs and things like that and I didn't want to be a part of that. So I wanted to go towards something that was a little more positive. So, just being organized, together, and making sure that they had the hottest, hottest people in the House so that we can all do our thing together. Safe Place: Formation of a Subculture-Related to the feeling of support provided by the House family, respondents also spoke at length about having their own space that allowed them to freely express themselves. For some, the first time they came to a Ball was also the first time they were exposed to any gay community. Given that 75% of participants were 20 years old or younger at the time of their first Ball, this is not that surprising. One young man described his first impression of a Ball as: "It was like, 'Oh, my God, there are more gay people than I thought.' Before I thought it was just everybody was just in the closet. So I just, oh my goodness. It was just--it was a heart shocker". This first exposure to a "gay scene" gave many of the participants a sense of comfort and solace in realizing there were other gay young men like themselves: "The positive thing was it was just--it felt kind of good to be around people like you". After having spent some time in the Ballroom scene, respondents realized that the Ballroom community was not typical of other gay communities. One respondent clearly articulated this by explaining, "there is a gay community and then there is a Ball community. It's like the Ball community is a subculture with the gay community". The atypical nature of the Ballroom scene was seen as a subculture for a number of reasons including its defined structure, a membership of almost exclusively ethnic minority LGBT youth, and its underground nature. Balls are generally held after hours and in warehouses or other nontraditional spaces. The underground nature of the Balls seemed to be a big part of the appeal of the Balls, with one focus group explaining: R5: I loved the undergroundness about it because people don't--I like the discretion because a lot of people don't know what's going on. So it's like our own little world. R2: Yeah. R5: You know what I mean, it's like our escape to this place where you can go and just be like he said, be whoever you want to be. Yeah, I mean whatever person you want to be that night you can be that person. The underground nature of the Ballroom scene extended to the participants themselves having what they called an "alter ego" when living in that world. Generally, House members take on a House name when they join a House. This name includes a first name and a last name, generally the name of their House. Thus, the "alter egos" that participants spoke of included a name unique to the Ballroom scene as well as different illusions depending on the participants' personality, desires or talents. R4: It's the alter ego so you get to be whatever. That's your moment to be whoever you want to be... With us, we can't be whoever we want to be in the regular world because then we are going to get a lot of ridicule and judgment. But, in our world I can--you can come in one day and be the boy and then the next day you can come in and you can be the girl… you aren't being judged unless you look a mess but other than that it's usual. R1: I think my alter ego kind of hooked my confidence in my everyday life because I had really low self esteem at first and a lot of people wouldn't know that but I did. As this last participant described, the alter ego and being able to be whoever you want to be, seemed to contribute to building self confidence for some young men, particularly those who had experienced ridicule or other negative feedback when expressing themselves in the "real world". Several of the young men spoke of this issue and the importance of finding a "safe place" for them to feel comfortable being who they wanted to be. Some felt it was still difficult to be an "open gay male"; and even within the gay communities, there was often a lack of tolerance for creative expression. The open acceptance of all types of people in the Ballroom scene contributed to many young men's feeling it was "okay to be who you are". I feel like it it's an outlet for female expression, kind of what you are talentwise or what you like to do that you are not able to do outside of that community. You can't go to a club and just start walking runway through the club. People are going to look at you like, "What are you doing?" I mean you can feel it but you know you are not able to do that…but in a Ball scene it's oriented around that. Then it calls for so many different categories and so many different effects to the point where you are able to kind of just try and kind of like a place to let yourself be free kind of outside of even the regular gay community but outside of the mainstream community, especially because you know a lot of times even if people who aren't in the Ball scene just being gay, lesbian or whatnot you are shunned automatically. So it's just an outlet for expression, just to express yourself I think. While most of the young men in the Ballroom scene are active participants and "walk" their categories at the Ball, the community is open to everyone and does not require individuals to compete. Some House members take on different roles such as administrative duties and costume designers. While these individuals may not sport different illusions or personas as a part of their Ballroom experience, they too experienced the benefits of the safe space the Ballroom offered. I am a little bit different because I don't walk but I get more of acceptance. I get a lot of things especially like being African American, homosexual you don't really have too many options for acceptance and when you find a place where they accept you for who you are versus what you do or what lifestyle you live it's actually worthwhile. --- "Shamelessness": Entertainment, Winning and Validation at the Balls Many participants reported enjoying attending Ball events for the entertainment aspect or because they are "new and fun". These reasons were especially common among respondents who attended Balls but did not belong to a House. Some of these participants spoke about the fun and excitement involved with attending their first Ball. One respondent recalled going to one of the first balls in Los Angeles about ten years ago. The first ball was really, really -it was just really exciting. It was something new. It was really new for everybody. So, it was just really new and fun. Many respondents discussed going to Balls to see their favorite categories performed. Respondents also spoke about being impressed by particular Ball members who excel within specific categories. One participant, who had recently joined a House, listed some of his favorite performance categories. I just do it for the entertainment. I love to see people that I know, just to look nice. I do it for the entertainment. It's just something fun. And now that I'm actually in a House, I guess I'm gonna have to probably do a little bit more, attending Balls more often. But entertainment. I like seeing people vogue. I love vogueing. I love face kids. I love sex siren. And I just like it. It's very interesting to me. The competitions themselves and the sense of satisfaction individuals received from competing and winning were also mentioned among the main benefits of being a part of the Ballroom scene. When asked to describe the feelings associated with winning at a Ball, respondents reported feeling a sense of validation, importance and recognition for their efforts. These feelings seemed to be of upmost importance to the participants. Some of the more popular and competitive categories also offer monetary prizes to the winners, another benefit of the competitions. I guess it's like somewhat of an accomplishment because basically…when you really get into the Balls, all it is an illusion and if you can give your illusion better than the next person then you know it's kind of like you felt like you have done, like you have accomplished something. Never mind the fact that some of the categories are worth money. This sense of accomplishment through winning also seemed to help participants build self confidence and pride in themselves. The idea of being recognized for their efforts in front of their "family" and friends led one respondent to report that he had become "more accepting I guess of myself". The competitive atmosphere of the Balls seemed to some, the appropriate venue to "grab your validation", particularly when venues such as this are uncommon for most of the Ball participants. One focus group session discussed how Balls were a chance for AAYMSM and transgender individuals to "step out" and gain their recognition. R3: [The Balls] instill confidence sometimes. Like you can do anything. You're competing against these people that are just like you. Like "She's just like me", you know. "I'm competing against her and I can win". R4: There's all types of things out there. You have sports…regular fashion shows and for us, this would be our own zone, or our chance to step up. It's entertainment. It's a chance to prove yourself to somebody and it's a chance to step out and feel good about yourself. This sense of pride and validation members' experienced through participating in Balls may serve to address experiences of internalized homophobia. Survey data indicate that about 30% of male respondents reported either agreeing or disagreeing that they "sometimes dislike myself for being sexually attracted to men"; an additional 50% reported sometimes wishing they were not sexually attracted to men, 22% reported feeling stress of conflict over having sex with men and a third reported sometimes feeling guilty about having sex with men. Apart from the more intangible benefits such as support and acceptance of participating in the Ballroom scene, participants also discussed the more perceptible benefits of participation including the competitions and winning. Most of the young men who participate in the Ballroom community are competitive by nature. The organization of the House and Ball scene is such that House parents and other community leaders typically comprise the judging panel at Balls. This means that House parents are likely to vote for their own kids, and that loyalties and allegiances to other Houses may sway a judge's vote. This political nature of the scene makes it difficult for competitors who are not a House member to win. Thus for some young men who participate in the scene for the competitions, their primary motivation for joining a House was to succeed in competitions. Like I said earlier if you are by yourself you are not going to get the votes that you deserve like you are participating in a House. So, that was one of my motives also for joining a House in the first place. Participants choose their categories based on their interests, talents and appearance. Some mentioned participating in sports when they were younger, and commented that as they grew older and became more aware of their sexual identity, they felt that finding outlets for competition were less available to them. For those young men, the Balls were attractive as they allowed them to compete in categories that celebrate their creativity, their passion and their sense of self. R4: That's why I like my category because it's just--that's the one where you know fashion is just the whole creative part. You can be a designer for that moment. R2: Right, like Project Runway. The passion that participants bring to the Balls was also something that participants in the scene looked forward to. Some categories dictate that individuals spend time creating a scenario or illusion that fits the category's description while also bringing a "wow factor" to the competition. For some members, this passion and seeing the creativity in action was a primary motivation for attending Balls. I like the fact that these people are so passionate about something that people will look at and feel was a waste of time but these people are actually putting their all into it and really doing a good job…which makes it--which makes it entertaining because --when you put your passion in the competitive state it makes people go far beyond what you would expect sometimes and to see people bring whatever the category calls for to life it--that's what I look for when I go to Balls, that's one thing I like. --- Discussion The data presented in this study begin to identify the perceived benefits and motivations of participating in the House and Ball communities from the perspective of the participants. Prior research has identified that these communities may be at high-risk for HIV and other sexually transmitted infections; however, there are a number of resiliency factors within these communities that may serve to mitigate the risks . Survey data found that both walking in Balls and obtaining social support were the two primary motivators for being "active" participants at the Balls. While one would expect walking in Balls would be a primary motivator; it is interesting to note that receiving social support was seen as equally important. One can infer that social support is an important component for these respondents and perhaps something that is not easily obtained. Qualitative data provide additional insight into this association, as young men described the sense of support they received thorough the House structure as well as the selfconfidence and validation they received through participating in Ball competitions. The underground world of the Ballroom allows its members to freely express themselves and celebrate their talents in a safe and supportive environment amongst their House parents and siblings. Many young men within the Ballroom community have experienced discrimination from friends, family and their communities due to their sexuality or appearance. This was seen both in our qualitative data which described cultural and other factors that influenced family and community perceptions as well as our survey data which showed a relationship between experiences of homophobia and involvement in the House and Ball communities. While the temporal relationship between experiences of discrimination and involvement in the communities cannot be established due to the cross-sectional nature of our results, it is clear that these young have experienced a great deal of discrimination in their lives based on both race and sexuality. It is also clear that for many, the Ballroom scene was a welcome addition to their social environment, for in it they found a place where, not only are they accepted, but also an opportunity for them to be celebrated and rewarded for their talents and creativity. While subcultures have not generally been described as a source of resiliency or a protective environment, the descriptions of the young men in this study lend support to the idea that seeking refuge in a subculture, where one becomes a part of a group or family whose membership reflects their own interests and beliefs , may be a sign of resiliency. The experiences of the participants in our study also align with recent work , which encouraged HIV researchers to consider elements of resiliency when designing HIV prevention interventions. According to Syndemic Theory , improving health across one or more psychosocial health conditions will have a positive impact on HIV risk as well as the other component epidemics that as a group comprise syndemic conditions. Stall and colleagues argue that if syndemic conditions work together to increase vulnerability to HIV, then mitigation of one of more of these conditions should work to decrease HIV vulnerability. These aspects of resiliency such as seeking social support and social creativity, as noted in this discussion may help to mitigate stress and related mental health as one of the syndemic conditions. The House and Ball communities offer a safe space and an alternative to the discrimination and potential social marginalization that AAYMSM face. Therefore, the Ballroom community may be an important source of resilience for AAYMSM and other LGBT youth. The overwhelming majority of both our quantitative and qualitative findings demonstrated that desire for support and acceptance are primary motivations for involvement in the House and Ball communities. Borrowing from the strengths-based correlates of HIV risk developed by Herrick and colleagues , we have identified several strengths-based HIV correlates present in the House and Ball communities. This is summarized in Table 3. For example, the idea of shamelessness or pride in oneself, can potentially counter the effects of homophobia, both external and internal, as well as depression and other mental health conditions. Qualitative descriptions from respondents illustrate the sense of freedom and celebration in being able to be themselves in the Ballroom scene, without fear of ridicule or ostracizing. Thus, the Ballroom scene could be described as encouraging and celebrating shamelessness, a strong contradiction to internalized homophobia which has been described as YMSM applying negative attitudes to themselves, often hiding their sexuality and/or feeling ashamed of their attractions and behaviors . Conversely, respondents reported discomfort in being shameless outside of the Ballroom scene. Interventionists and service providers should consider how to encourage AAYMSM to be shameless and express their true selves and tap into this important construct. This would encourage AAYMSM and others to celebrate their uniqueness rather than feeling ashamed. While currently there is not a validated measure for the construct of "shamelessness", descriptions from the young men in this study indicate that it is more than just the reverse of internalized homophobia. Thus, from a quantitative perspective, we cannot reliably discuss how the survey supports this construct; however, we did see that sizeable proportion of respondents reported experiencing some aspects of internalized homophobia Shamelessness includes pride, celebration and expression of oneself. This sense of shamelessness in relation to sexuality may be similar to ethnic pride, which has been identified as a protective factor among adolescents for risk behaviors such as substance use and sexual risk . Future studies should consider developing and testing a measure of shamelessness that can be used to identify this important area of resilience. Another strengths-based construct is the idea of social creativitywhich can counter the risks associated with loneliness and lack of social support. Social creativity is the process whereby a group or individual changes their group status through identifying different criteria in which they have been compared . For example, the Ballroom community data indicate that there are members who may have experienced a loss of support from their family of origin and that these young men in turn change the way they define or view family and develop close familial-type networks within their House structure. Survey data indicate that one of the motivations for being involved in the Ballroom community is to seek social support, indicating a desire to change or augment their current support structure. Thus, the Ballroom community is an excellent example of social creativity with its inherent structure around "Mothers" and "Fathers" and other family. This structure is not necessarily unusual among African Americans; there is a long tradition of ethnographic research that documents the "fictive kin" networks among African Americans as a means to extend one's social network, which can serve as additional social and economic resources to manage societal challenges including discrimination, rejection and poverty . Similar alternative family structures or fictive kin networks have been identified also among other sexual minority groups in general and AAMSM specifically . This support can be crucial to the health and well-being of AAYMSM who have experienced rejection or discrimination from their family, peers, the larger African American community, and society in general. This rejection and discrimination can in turn contribute to the negative health outcomes that result from heterosexism and homophobia, including psychological distress , substance use and high-risk sex . Therefore, encouraging AAYMSM and others participating in HIV prevention programs to freely identify their family and not limiting them to biological or other more traditional family structures may be important for intervention development. With recent recommendations to consider family-level interventions for YMSM , the freedom to have some social creativity in identifying family members may be important for AAYMSM and others. Another component of resilience is volunteerism and social activism which can counter social vulnerability such as violence, victimization and homophobia . While not included in this manuscript, prior analyses among the parents in the House and Ball communities indicate that many of the House parents and leaders see their role as giving back to the community . Parents saw their role as a House leader as an opportunity to contribute to the development of young people in their communities. This was often seen as a chance to make a difference in a young man's life or to pay a debt to their own House parent. Many of the current House members plan to ascend to the rank of Mother or Father in their House or someday form their own House. Thus, this sense of social activism and giving back to their community exists in the Ballroom scene and may also contribute to the resiliency of its members. While there are a number of ways to measure volunteerism quantitatively for this study, the closest proxy would be how connected respondents feel to the gay community. We saw that this was tending towards significance in its relationship to being actively involved in the Ballroom community. This may indicate that those who are a part of the Ballroom community are also more likely to be involved in the larger gay community; additional investigation is necessary to better understand this relationship. A final strengths-based construct identified in this analysis is social support which can counter unhealthy social relationships, loneliness and potential negative outcomes including substance abuse, depression, and sexual risk. Our analyses -both quantitative and qualitative -demonstrate the associations between motivation to participate in the House and Ball communities and a desire for social support. Based on the present study, the House and Ball communities could best be described in two ways: a source of social support and a venue for competition and celebration. The importance of the sense of support received through the House family and the camaraderie at the Balls is an integral part of the Ballroom community. Therefore, the community lends itself well to the design of community-level HIV prevention interventions. Creating or adapting HIV prevention programs for this community should use this sense of social support as its foundation while integrating the other aspects of resiliency clearly visible within this subculture. There are several limitations to this study. These analyses are based on perceptions from one Ballroom community and may not be generalizable to Ballroom communities in other cities. For HIV prevention efforts, future studies should include comparisons to other cities, particularly those with a longer history of the Ballroom scene, to identify other mechanisms of support or resilience within the scene. In addition, the findings rely on respondents' selfreported behaviors, which cannot be independently verified; we expect that the use of ACASI surveys may have minimized the underreporting of these behaviors. Additionally, the data reported here are cross-sectional and therefore do not contain information about the temporal relationships of motivations and social support or risk. For example, respondents were asked about lifetime experiences of rejection/discrimination and it is therefore impossible to know whether or not these experiences occurred prior to joining the House and Ball communities. In fact, it is quite possible that these experiences may have occurred subsequent to joining these communities. We encourage other researchers to further explore these areas to better understand the temporal relationships. However, in spite of these limitations, we feel the data presented here present ideas for providers on leveraging the support systems available in the House and Ball scene so they can develop and/or advocate for new programs designed for House and Ballroom communities. Little is known about these communities, and this study provides an important foundation for understanding the social and structural characteristics of a Ballroom community, a community whose members have previously been identified as being at-risk for HIV infection . We are well into the third decade of the HIV epidemic and while great strides have been made in the area of prevention, HIV rates for AAMSM and AAYMSM continue to increase -indicating that perhaps the traditional deficit-approach of HIV prevention interventions is not effective for all populations. Moving to a model of resiliency and designing HIV prevention interventions founded on the strengths-based constructs identified in this analysis may be an effective new avenue for HIV prevention effort.

We are well into the third decade of the HIV epidemic. While strides have been made in HIV prevention, rates for African American men who have sex with men (AAMSM) and young AAMSM continue to increase -perhaps indicating that traditional deficit-approaches of HIV prevention are not effective for all populations. Following a recent call to investigate the resiliency of young gay men, this study identifies sources of resilience and strength within the House and Ball communities, a subculture comprised primarily of AAMSM. The mixed-methods design included survey data (N=263) collected at community events, interviews with Ball attendees and focus group data with House members. Survey data indicate a relationship between participating in the House and Ball communities and seeking support, acceptance and entertainment. Qualitative data validate these findings and provide detail on motivations for AAMSM to participate and the perceived benefits of participation. Findings are discussed in relation to building strengths-based interventions, using concepts of resiliency including shamelessness, social creativity, social support and volunteerism.

Introduction A question that has plagued the fi eld of social sciences for several decades is whether a universal theory of social space is possible or not and, if so, how it may be defi ned. Although Foucault, Lefebvre, and Soja have provided a conceptual framework of social space , its phenomenological elements and operational dynamics have not been examined in detail. It is Alfred Schutz's philosophical concept of the "lifeworld" that he defi nes "as an amalgamation of her or his everyday dynamics, cultural bindings and relational assertions," which explores the "embedded reality of social space" and provides an idea of what constitutes a person's lifeworld (cited in . As Schutz demonstrates, the constitution of a person's lifeworld is important in analyzing and understanding their objective, subjective, and inter-subjective alignments 1 . Th rough exploring the social space of Naya, a village in the West Medinipur district of West Bengal and the lifeworld of hereditary scroll painters known as patuas or patachitrakars and their spatial identity, this essay aims to understand the scroll painters' transformative lifeworld to explore how the social space of the village acts as an invisible force in the institutionalization of innovation, ingenuity, and integrity. It draws on interviews with twenty patachitrakars conducted between May and December 2020 as part of the project "Folk Artists in the Time of Coronavirus" funded by the Indian Institute of Technology Kharagpur. The Scroll Painters of Naya Pata or Patachitra has been a key component in the cultural diversity of both Bengals, Bihar, and Orissa. Pata is a scroll painting of varying length and width, which narrates incidents from Hindu epics like the Ramayana or the Mahabharata, the Bengali Mangalkavyas, folktales, local legends, and tribal Santhal myths as well as contemporary events . Patuas or patachitrakars were semi-nomadic entertainers who would roam about villages unfurling their paintings to which they sang along and received alms if they succeeded in pleasing their patrons . As patachitrakars would wander from one village to another singing the representations in their patas, they would need a place where they could rest for a while or put up for the night before moving to their next halt. Encouraged by a wealthy patron in the region named Gunadhar who gifted them a piece of land, three patachitrakars settled down in Naya more than sixty years ago, encouraging other scroll painters to migrate from various parts of West Bengal. This is how Naya , labelled "the village of painters," came into existence. The village of Naya is now home to several generations of patachitrakars or scroll painters belonging to about eighty-five families with approximately 139 scroll painters involved in the art of "patachitra." Notwithstanding the socio-economic deprivation and religious discrimination they have faced over the centuries, the scroll painters of Naya continue to practice their art as a means of earning a livelihood and to transmit it to their succeeding generation so as to enable them to carry forward their ancestral tradition . The two biggest challenges to their survival have been their religious affiliation and market dynamics. Although most scroll painters, by their own admission, opted for Islam as their formal religion, their persistence in painting Hindu gods and goddesses initially struck a disapproving note in their co-religionists . Additionally, they were relegated to the periphery of the mainstream societal framework since the Hindu majority found sacred performance by Muslims unacceptable. The complexity of such a nexus of incomprehensible un-acceptance seems to have been intensified by the patachitra ceasing to be a form of ritual entertainment and losing its rural patrons. Even so, their continuing practice of scroll painting has been an empowering journey, which has given the scroll painters innumerable opportunities not only to improve their economic situation but also to challenge the mainstream discourse of approval and approval. In addition to the new system of market patronage combined with the patachitrakars' will, determination, and zeal to carry forward their tradition, the social space of the village of Naya has acted as a powerful force in helping them preserve their art through offering them an atmosphere of hope and belief. --- Tracing the Social Space of Naya The social space that envelopes the scroll painters of Naya is characterized by socioeconomic privation and insecurity. The scroll painters' position in society has been historically ordained by their changing lifeworld, which was marked with abject penury and destitution before the community found its way into settlement, security, and success. However, despite the growing demand for and increased recognition of patachitra art and artists, an undefinable angst and anxiety appears to underpin the scroll painters' lives and scroll paintings . Various kinds of socio-economic problems have historically plagued the scroll painters of Naya. As Dukhushyam Chitrakar, one of the few elder scroll painters, conferred the title of Guru , explains, the scroll painters' existence has always been bereft of certainty or stability, Scroll painters have undergone all sorts of oppression, be it social or economic. And yet they have rather achieved their existence to this day, overcoming all types of complexities, no matter how difficult that might have been. In the past, we used to go to the villages and act as entertainers, showing our paintings and narrating the depictions which were set to tune by us. There was no guarantee as to whether we would be getting anything in exchange from the households we visited in the village. Some days were worse than the others when we returned empty-handed and had nothing to eat. Today we, as a community, have been able to put food on our plates for quite a long time now. Our children have the opportunity to attend schools and colleges and we are done away with the fear of going hungry for a day. With this recent rage of the pandemic, however, things have changed again. I hear it from my sons that they are not getting the amount of work they used to. Exhibitions and displays have come to a standstill is what I gather from most of those living in the villages. Dukhushyam Chitrakar's words reverberate with the issues of socio-economic privation and insecurity that lurk behind the social space of Naya. The socioeconomic privation has two dimensions, instability and subordination 2 . Even though instability in the lifeworld of the painters partially arises from the irregular nature of patronage 3 , its prime cause can be suas, a three-fold instrument -the stigmatization of scroll painters by the brihottoro shomaj or the larger society, religious purity and inflexibility and market dynamics. In addition to instability, subordination emerged as another important and analytically binding factor in the scroll painters' social space. Although subordination is primarily imposed through subjugating practices, which unleash a certain degree of dominance into the schema of everyday life on an operative scale, it assumed a different meaning when viewed through the lens of the scroll painters on whom it was enforced through the discourse of denial and disapproval. Subordination can also be explored as a constructive force that compelled patachitrakars to submit to market economics, making them conform to what the "larger society" considered desirable and resulted in the loss of the authentic in patachitra. In order to explore the concept of subordination under such circumstances, it becomes pertinent to understand how the elements of denial and disapproval have been assimilated by the marginalized performers. The scroll painters, isolated from the "larger society" or "mainstream society" were denied a constructive platform for the expression of their art. Their uniqueness, reflected in their works, seemed to have been countered by what the "larger society" deemed appropriate and what the market deemed to be profitable. In the past, scroll painters faced several obstacles in engaging in their hereditary profession and practicing their art due to their being discriminated against by religious conservatives. For example, scroll painter Montu Chitrakar recalls, "We had to change our names from the ones which were given to us at birth so that we could work at Hindu households, especially when we were required to build idols of goddesses like Kali and Durga for the festive seasons." While Montu Chitrakar adds that difficulties have been an integral part of their lives, partly because of their stigmatization by the larger society, other scroll painters are unable to elucidate the problem in clear terms. In the process of their being disparaged by mildly oppressive forces, the locus of subordination in the social space of Naya can, therefore, be located in the threat of extinction felt by the scroll painters. It is, however, supplemented with their being forced to adjust to market economics. Even though the scroll painters of Naya express their commitment to preserving their rich heritage, they are not averse to adjusting to market requirements and tailoring their "patachitras" to the needdispositions of the "larger society" in order to ensure their financial well-being. This decontextualizes the performance art from its ritual origins and isolates the visual, thereby eliding songs or tunes. Distress, Duress, and Dichotomy: Sociological Perspectives on the Scroll Painters of Naya Shyamsundar Chitrakar, a veteran scroll painter, states, Scroll painting has been made into a business and you cannot blame the scroll painters for it. The dynamic nature of the demand does not require us to compose songs anymore. Neither do we need to sing out the depictions. Pats are not as long as they used to be, we now have different kinds [sizes] of pats. People don't have the space to keep the long pats and hence resort to the square ones. But above all of this, as a community we have always felt our existence being threatened. That is why we keep on adjusting to the way of the world. Protecting the art is our duty, but you also need to conserve the artists, right? Without the artist, how will the art survive? For long we have stood the test of time. The larger society has always tried to distance us away, denying us constantly the avenues for long term growth. Rahim Chitrakar, Dukhushyam Chitrakar's son, agrees with Shyamsundar, … our experiences in being scroll painters have been enlightening but nevertheless tormenting too. While growing up we used to hear that our father was going to the village to beg for food. We are lucky now that none of us have to beg for food. But those memories are always haunting us like a specter from an ignoble past, affecting our present dispositions. We have always felt threatened. The government never made elaborate arrangements for us until it was 2011. I am not saying all the members of the larger society has made us feel separated from the mainstream establishment, but certainly as a whole they have played on our years of insecurity and changed the context of the market, which is why you won't find many of us composing songs anymore but just focusing on making scroll paintings in different shapes and sizes. In a way you can say that we have been subjugated and perhaps even forced to conform to what by view of the majority was considered to be ideal. What is therefore left is what the elderly Dulal Chitrakar termed as "an incomplete exercise of scroll painting which loses its cultural and traditional bindings and becomes subservient to the needs of the modern world." Insecurity finds a manifestation in various forms across multiple instruments and institutionalizations. The institutionalization of insecurity in the social space of Naya can be understood through the emotional response of the scroll painters to the different kinds of adversities that threaten to end their cultural legacy and existence as a community. Despite their being able to produce an organic art form, the existential crisis visible among the scroll painters of Naya makes it important to pose the question: why is it that the patachitrakars feel insecure and where can their insecurity be located? The question that needs to be asked is what their emotional response does to hardship and subordination entails and how exactly it is related to the institutionalization of insecurity in the social space of Naya. The answer to this question lies in the continual apprehension of an imminent threat experienced by the patachitrakars as well as their adaptation to the "larger society." The scroll painters of Naya believe that their community is relegated to the status of a segregated, separated social collective by dominant groups in the larger society. The larger society has decried the unique characteristic orientation of Naya as incompatible with majoritarian processes in terms of socialization, cultural affirmation, and so on. While the contemporary rubric of the society does not overtly endorse discrimination of any kind, Naya scroll painters' internalization of its covert humiliating denigration has percolated to their succeeding generations . In light of this, their emotional response is a reaction of the "ever-tormented" socio-cultural "self" to the changes brought about by any social or natural element that might affect their livelihoods or their rich cultural legacy. It is in such a response that insecurity appears to have been institutionalized in every facet of their everyday lives, beginning with the prevailing public discourse on how the "larger society" views them to imminent changes. The connotations of the social space in Naya might be best described in the words of Jaba Chitrakar, "Over the years from being a small and largely unknown village, Naya has changed into a landscape of culture and creativity. But some things haven't changed, and perhaps our fear of being washed away is one of them. That I guess will continue no matter how much we develop and progress." The Transformative Lifeworld: Mapping Innovation, Ingenuity, and Integrity among the Patachitrakars In examining the lifeworld of the scroll painters of Naya, understanding the transformation of its subjective, objective, and inter-subjective alignments across space and time is extremely crucial 4 . The rationale behind their adaptation to the changing realities is the constant insecurity and fear of extinction lurking behind the social space of Naya, which might have arisen from a social or financial, institutional crisis, or even an ecological event like the prevailing pandemic. In addition to alienation, self-reliance, and integrity, market dynamics and economics are equally central to the ingenuity and innovation factors of the subjective aspect of the patachitrakars' everyday lives. Market dynamics that forced the scroll painters to adapt their creations to the requirements of the "larger society" and its constituents is one of the main reasons behind the continual changes in the subjective, objective, and inter-subjective alignments embedded in their lifeworld. Manimala Chitrakar, a noted scroll painter from the village, provides the following rationale, You can say we have always had two objectives to scroll painting. One would be our survival and the other would be the survival of the art. You cannot really survive individually or as a community, as an artist if the art is lost. This is the reason we have tried to bring in as much change as possible to the style and narration of our scroll paintings. Initially they were based on the incidences in the epics but gradually with time, social issues became an important subject matter for the paintings. Previously the scrolls were really long, but now they are of different shapes and sizes. As a community we want to be able to reach out to all kinds of people and since not everyone buys the long scrolls which often have a high price. Alongside, you'll also find patachitras on items of everyday use, like cups and mugs and clothes. If one feels this as a commercial endeavor on our part, I'd say that this is only partially correct. Survival is perhaps the primary need for us. To connect with all the needs and minds of all kinds of individuals, we invent and reinvent the ways and forms of the art. Similarly, Jaba Chitrakar, an accomplished scroll painter, believes that, … as a community I think our reason for existence is tied to the survival of the art. Initially the art and artist were inseparable from each other. But now, you can say there is a gap between the art and the artist. The art is now more than just a mode of survival. It is a part of our cultural identity as a community and a unique creation which if lost, will be lost forever from the face of world. You might think of including scroll painting on objects like T-shirts and kettles to ways by which we can earn extra income but that is actually not the case. Without doing such things neither we nor our creations will survive. If the future holds to be more inconvenient for us, and if things like this pandemic becomes more common we shall have to devise new ways and means for survival but through the art, not by some other work, unless of course the situation is that bad. But to be honest, even if that happens, there is nothing apart from scroll painting that we know. Ingenuity and innovation are perhaps the twin planks of the patachitrakars' lifeworld. While ingenuity defines the intersection between their art and the changing times, innovation acts as an expression of their ingenious selves and minds. While the scroll painters believe that their existence as a collective is connected to what they preach and practice, scroll paintings serve both as a means of their survival as well as their perpetuation as a distinct community with a unique cultural identity. In other words, responding to the changes in the market can be viewed as a social action on the patachitrakars' part to ensure three things -the preservation of the community, the preservation of their rich cultural heritage, and the ensuring of a sustainable livelihood. The complex relationship between innovation and ingenuity is pertinent to the exploration of the deep structures of the lifeworld of the scroll painters of Naya. While these aspects might appear synonymous, ingenuity is deeply embedded in the patachitrakars' mental faculties whereas innovation is channeled in the manner and output of their artistic creations. Although ingenuity is common to all of them, the nature of innovation varies from one artist to the other. For instance, Shyamsundar Chitrakar engaged his creativity in making replicas of large "pats" that are the size of a person's palm apart from drawing standard scrolls and square "pats." According to him, "Often students from colleges and universities come to visit Naya. It is not always possible for them to carry a lot of money. These small 'pats' are best suited for them in such cases. They are neither too large nor too expensive. Students can take such things as a souvenir back home." For Anwar Chitrakar, innovation, however, has a completely different orientation. He believes that the social issues that are often a subject matter of the scroll paintings should be reflective of the times in which we are living. The scenes from the epics are important and so are things like global warming and environmental degradation. But you cannot just focus on a few things and expect the art to progress. This is the reason why I focus more on things like subjugation of women, fragility of social relationships in today's world and even social evils like eve-teasing and rape. I think in that way scroll paintings become more realistic. Identifying the routes and modes of innovation is not difficult in view of the fact that ingenuity is inherent in their collective work ethic and is reflected in their creative productions. An analysis of the contours of their lifeworld would, however, remain incomplete without discussing the integrity of the patachitrakars of Naya. The question of integrity and its consumption is a rather complex arrangement to be dealt with largely because it includes an assortment of particularities absorbed by the scroll painters of Naya over a period of time. One such ethic is the belief in keeping their religious faith and their hereditary vocation separate from each other. In engaging with contemporary society in the present times, patachitrakars seem to have resolved the fine gap between their religious beliefs and their professional choices and commitments. The scroll painters of Naya have cultivated an attitude of plurality and professional and personal sentiments without compromising their personal ethics in the hope that it would ensure the community's as well as their socio-cultural architecture's survival. Another important characteristic that should not go amiss from the scope of this discussion is the doctrine of self-reliance, intricately laden in the patachitrakars' Distress, Duress, and Dichotomy: Sociological Perspectives on the Scroll Painters of Naya transformative lifeworld. With every passing generation, almost every household in the patua village has taken to the profession of scroll painting scrupulously following in its ancestral footsteps. Although there have been intermittent transitions to other occupational avenues largely due to economic constraints, the scroll painters of Naya have stuck to their creative practice. The scroll painters' continuing belief in themselves and their self-creation is almost tantamount to entrepreneurship, which allows them to be independent and utilize their own resources in sustaining their art. Self-reliance, thus, defines a set of attitudinal strengths in the scroll painters of Naya. This is a mindset that includes taking comfort and hope in carrying on with the hereditary occupation, making efforts to orient future generations towards scroll painting, relying exclusively on natural resources and refraining from switching over to other occupational activities. An intriguing element of the lifeworld of the patachitrakars has been the strand of alienation. While the extent and degree of the alienation between the art and artist is difficult to analyze, the fissure between the creation and the creator is reflected in the patachitrakars' unanimous portrayal of their art as a commodified object rather than an aesthetic pursuit. As Bapi Chitrakar puts it, We feel as patuas our responsibility lies in letting the society know about things which are happening around them. Previously it was all about going to the village and singing out the thematic description of the "pats." But times have changed and so has our ways of presentation. Since you are asking whether the artist has separated himself from the art or not, I would say it is true to some extent. After all, as much as we are scroll painters, we also have to keep in mind that people who buy from us are our patrons. That kind of an understanding has certainly brought some changes. For instance, you won't find many of us knowing how to compose songs or sing for that matter. This is because scroll paintings are more about being a product now, than being a way of keeping villagers informed about things of social importance. Ranjit Chitrakar echoes Bapi Chitrakar's perspective: "Scroll paintings were previously made for being shown. But now they are being sold. I feel once you attach a price tag to the elaborate hard work that is done and try to quantify the creativity of the painter, which results in the art and artist being separated in a way from each other." The subjective, objective, and inter-subjective alignments of the lifeworld of the scroll painters of Naya can, thus, be understood from the aforesaid elements that give shape to their lifeworld and define and describe its constitution. The objectivity in the lifeworld of the patachitrakars is signified by their capacity to be ingenious when needed, self-reliant and keep the "personal" separate and distinct from the "professional." The subjective alignments, however, lie in how each of them embraces his/her respective lifeworld and orients his/her individual social actions to his/her subjective understandings. For instance, while some of them choose to innovate the texture of pat painting by drawing it on objects of everyday use, some try to reduce the size of the pats to that of a person's palm. In the same way, while their work ethic has no trace of their religious taboos, some believe that the conceptual understanding of religion in society is deeply flawed and there is no need to separate religion from one's own professional commitment. The inter-subjective matrix, in such a case, therefore, is consistent with the everyday lives of the scroll painters, their shared opinion about the "larger society" and their matters of common cognition. This includes their apprehensions about the threat of the extinction of the community, the gradual erosion of their socio-cultural heritage in light of the continuously changing market and consumer tastes, and their belief in the role of patachitrakars as educators. With this, what becomes inarguably congruent to the discussion is the transformative nature of the lifeworld, which changed across space and time. The scroll painters of Naya, whose lifeworld was invested in bringing social awareness, were persuaded to adapt to their surroundings and their requirements due to socio-economic contingencies. During the period when they identified with their abject status of "alms-seekers," a colossal metamorphosis in market economics transformed their self-identified persona, and, ultimately, they opted to professionally engage with scroll painting. --- Unpacking the Spatial Identity of the Patachitrakars Spatial identity is "the identity that has a relational and positional binding to the space and spatial structures of the social actor, often distinguished from general social identity since it is rather assumed through various long term cultural, economic and political processes." ) Since religion has not been the sole determining factor in their everyday lives and their individual lifeworld, the scroll painters' identity cannot be exclusively analyzed through strict religious or social parameters. Since viewing their social identity as preservers of cultural traditions would be equally reductionist, the essence of their identity must be examined in relation to their social space. The role of the village of Naya has been extremely important in defining the spatial identity of scroll painters through its enabling of its inhabitants in realizing their inner potential and acting accordingly. Identity is sacrosanct to the rich cultural heritage of scroll painters and one of the main reasons behind the channeling of their efforts to survive as a community. At this juncture, the question that might arise is what is more important for the patachitrakars, their individual existence or their existence as a community? While it is true that the community cannot exist and function without the survival of individual patachitrakars, it is also true that if the patachitrakars were to direct their ingenuity and creativity towards activities precluding scroll painting, it would result in the eventual decline of the community itself. Therefore, it is best to state that the community and the individual are separate and mutually exclusive when it comes to the question of identity since that happens to be an integral element of their "self." The patachitrakars have self-ascribed their spatial identity as a part of their coherent understanding of the "larger society." This larger society regards the social space of Naya as an intrusive force bestowed with the power of affecting even those who are not a part of it. For example, their elder, Dulal Chitrakar, believes that the larger society and its additional elements are responsible for whatever has changed in pat painting: You ask me whether we would have remained stagnant or not and I guess we wouldn't. But certainly, we would not have done anything that might just ruin the process of what we stand for. We have been reduced to businessmen from artists and our roles have changed from being agents of social responsibility to being sellers of a particular art form. It is true we think of our rich heritage and culture, but I think patuas are mostly concerned now with their expressive identity as patachitrakars who are in the business of pat painting, which automatically helps in preserving the art. The spatial identity of the patachitrakars can be described as a construction of their cultural instrumentalities, which are integrated with their occupational dynamics. As Dulal Chitrakar points out, their identity as a community is preserved only to the extent of their being a part of their individual albeit commercial engagements 5 . Their spatial identity contains the possibilities of their adapting their "self," as microcosmic orientations of the "larger society," by aligning their creativity to the tastes, standards, and judgment of consumers who control the market economics. These microcosmic orientations of the larger society can be theoretically framed to include the everyday dynamics of those who are the buyers and patrons of patachitras, their ideologies, and the morphologies as well as simple understandings of the society around them. shomaj is embedded in market economics, the rationale behind their choices, the particularities of their historical oppression, and their resilience may be attributed to the nature and degree of the ingenuity, innovation, and integrity prevailing in the social space of Naya. Whereas the disjuncture between their religious orientation and their work is separated by their professionalism, the ideological ground that supports this professional separation is rooted in the constitution of their everyday lives. Their lives are constituted through mutual respect towards each other both socially and culturally, tolerance towards dynamic social realities and a strong sense of brotherhood. It is these aspects of their everyday lives that form the intersubjective matrix of their aggregate understandings and proliferate to the extent of guiding their choices in relation to the meanings that they attach to various social actions. The question of identity, which seems to be an important and an integral part of the individual "self" of the patachitrakars, revolves around the alignments of the social space in Naya for it is the socio-cultural landscape that creates the discourse of the patachitrakars' identity. It is also important to state that their efforts to survive as an exclusive community of individuals endowed with idiosyncratic capabilities is equally significant thus giving a consolidated background to their "spatial identity." At large and in essence, it is the ever-transformative nature of the lifeworld of the patachitrakars, with which they interact and associate with their distinct personalities that ultimately leads to the perpetuation of their community across time and space, irrespective of the cultural barriers, social discrimination, religious conservatism, market economics, and haunting memories of the distant past. Although the instrument of alienation creates a sense of separation between the art and artist, it is not strong enough in the present times to the erosion of patachitras and patachitrakars. Instead, it is important to accept it as part and parcel of the everyday lives of the scroll painters, who by their own instinctive rationality, do not allow alienation to affect the qualitative dynamics of patachitras as a whole and resort to improvisation to facilitate the smooth functioning of their community. Notes 1. While Schutz's exploration of the lifeworld can be viewed as an expressive process of the interplay of everyday dynamics, it is important to consider that it is only an "extension and developmental construction of what was Edmund Husserl's philosophical project" aimed at examining the consciousness of individuals through their subjective perceptions of everyday life. The contributions of Jurgen Habermas also cannot go unnoticed in this regard, especially for his unique definition of it as a "culturally transmitted and linguistically organized stock of interpretative patterns." 2. Subordination is an expression of a strong authoritative framework that seeks to alter the way in which people attach meanings to things around them. Distress, Duress, and Dichotomy: Sociological Perspectives on the Scroll Painters of Naya 3. This may be illustrated through the life stories of some scroll painters like Yaqub, Anwar, Sanyuvar, who had abandoned painting for other occupations before returning to their hereditary profession. 4. The process of covert demarcation is applicable to the previous situations in which patuas have been invisibly subdued in various ways that have made them feel separated from mainstream society. The contours of such covert demarcation include their being ill-treated by both Hindus and Muslim conservatives in subtle ways, and the absence of a market for their products. 5. This can be defined as painting pats for one's own survival, ignoring the historicity behind it as well as being unknown to the completeness of the art which also includes singing and composing songs. --- Conclusion The social space of Naya, reflective of the everydayness of the patachitrakars, tells the tale of a particular community's battle with uneven social landscapes. While the scroll painters' resistance to submit to the larger society or bhrihottoro

Th e sociology of everyday life is a paradigm of theoretical orientation. Th e complexities of the everyday life of the social actors exhibit more than what is there in the framework of the apparent reality and help in constructing a fulfi lling and applicable idea about the social actors. Th is essay aims to examine such complexities in the fabric of the everyday lives of the scroll painters of Naya, a village in West Midnapore district of West Bengal which are exhibited and expressed in various forms and ways. Th rough examining the social space of Naya that constitutes the lifeworld of the scroll painters and their spatial identity, this essay aims to understand the transformative lifeworld of the scroll painters to argue that the social space of the village acts as an invisible force of the institutionalization of innovation, ingenuity, and integrity.

Introduction A Weblog, or blog, is a Web-based personal publication system that allows users to easily add content periodically, usually in reverse chronological order. 1,2 Personal blogs or online diaries were designed to enable Internet users to post their diaries, photos, and video clips online. The writers of these blogs, also known as bloggers, form an online community by maintaining relationships with their friends, families, and unknown readers. 2,3 Prior research has contributed to the understanding of the identity of bloggers, 4,5 their motivations to blog, 1,3,[6][7][8][9] the reasons for frequent postings, 10 the structure of blogs, 11,12 and the self-disclosure of the bloggers. 13,14 Although various studies have investigated the social interactions of bloggers, further investigation is required regarding the topics that these bloggers disclose on their blogs, and the extent to which bloggers express themselves to their real-life best friends, parents, and online audiences. The purpose of this study is to explore and clarify these issues. --- Self-disclosure in real life and in cyberspace In the past, people communicated with friends face-to-face and via phones, and gradually through personal Websites, forums, and bulletin board systems. Presently, millions of bloggers write and post photos to share their thoughts, feelings, and experiences. 3 People are motivated to keep personal blogs to document their lives, express thoughts and opinions, for catharsis, and community. 1,7 Regardless of their reasons for posting, bloggers may share their personal opinions and feelings on the Internet to online audiences, who may read and comment on their blogs. That is, bloggers may selfdisclose and communicate with unknown audiences, based on trust, 15 anonymity, 16 or both. 17 Self-disclosure refers to the information that individuals voluntarily and intentionally reveal about themselves to others, including their thoughts, feelings, and experiences, [18][19][20] and is important for interpersonal relationships. 21,22 Regarding Internet technology advancements, self-disclosure may be redefined as the communication of personal thoughts, feelings, and experiences to people online or offline, either anonymously or through the use of real names. --- Social penetration theory Social penetration theory plays a central role in social psychology. The theory states, ''people assess interpersonal rewards and costs, satisfaction and dissatisfaction, gained from interaction with others, and that the advancement of the relationship is heavily dependent on the amount and nature of the rewards and costs.'' 21,23 The rewards may be presented in the form of reciprocal disclosures from others and being ''liked'' by others, while costs may take the form of increased vulnerability and risks related to others. Individuals have many layers that collectively form the total personality of the individual. The outer or peripheral layers are visible information concerning the individual, which can be assessed relatively easily by others without significant probing. The deeper layers contain information regarding the increasing vulnerability and/or social desirability of the individual. The deeper the characteristics, the more they reflect the total personality of the individual. These deeper layers are reached as relationships progress, and act as ''a continuously widening and deepening ''wedge'' . proceeding to more intimate layers of exchange but also expanding at prior levels of interaction.'' 21,23 People do not automatically disclose important information about themselves. Individuals maintain protective outer layers that surround a central core that represents the true self. Such distal layers are impediments in the selfdisclosure process, and are not shed all at once. Rather, the outer layers must first be exposed, experienced, and successively shed before the inner and intimate layers are revealed. This gradual escalation of the revealing process is termed social penetration. As individuals disclose more information regarding themselves to other members, it is likely that the disclosures reach the more central and intimate cores during the progression of the relationships. 21,23 In recent years, social penetration theory has been the focus of many online studies, 13,14,16,17,[24][25][26][27] and has been applied to, or adapted, in the context of online relationship studies, such as sexual self-disclosure, 13 online friendships, 14 and online social networks. 28 However, little is known of how bloggers self-disclose online and in their real lives. The following research questions have been addressed: RQ1: What exactly do the bloggers self-disclose on their blogs? RQ2: To what extent do bloggers share their thoughts and feelings on the Internet? RQ3: To what extent do bloggers share their thoughts and feelings to their best friends and parents in the real world? --- Methods --- Subjects We initially recruited 50 bloggers for scale development. In the formal sample, 1,038 participants were recruited from an online questionnaire . The demographics of these participants are as follows: male 37.7 percent; 60.9 percent of subjects were students, 5.7 percent were from educational profession, 5 percent from IT profession and 8 percent unemployed; 78.2 percent were aged from 20 to 29 years old, 37.7 percent are from Taipei, 11.6 percent from Taichung, 9.1 percent from Tainan, and 9.6 percent from Kaoh-siung. The detailed demographics of the subjects were displayed in Table 1. --- Measurements The Bloggers Self-Disclosure Scale was developed based on Thurstone's type scale, 29 and was utilized by Yang and Huang 30 and Chiou and Wan. 13 Based on related literature 16,19,[31][32][33] and various blogs in Taiwan for content a Some subjects older than 40 were deleted for further analysis because their parents did not exist anymore. --- 246 TANG AND WANG analysis, the initial BSDS consisted of 108 items, categorized into nine subtopics: attitude, body, career, feelings, personals, hobbies, money, experiences, and unclassified. According to the rationale of the Thurstone's type scale, the intimacy value of the item was determined first. The initial edition was an 11-point scale, ranging from 0 percent to 100 percent. When proceeding with the test, the 50 pretest bloggers were asked to rate ''their willingness to selfdisclose with the percentage'' regarding a certain topic. The subjects selected from a range of 0 percent to 100 percent, and obtained inverse scores ranging from 10 to 0. For example, if a participant was unwilling to self-disclose personal financial information on his/her blog, he/she would choose 0 percent and obtain 10 points for this topic, which means that the intimacy value of this item is the highest. By contrast, if a participant was willing to self-disclose personal hobbies on his/her blog, he/she would select 100 percent and obtain 0 points of intimacy value , which means that there is no private aspect to this topic. The participants were required to fill out the same scale for the three targets: online audiences, parents, and best friends. The purpose of this design is to probe the extent to which these bloggers are willing to disclose to online audiences and to real life parents and friends. The scorings for other percentages of self-disclosure followed the same logic. The next step was to compute the median and the quartile deviation of each item. According to the scale development of the Thurstone's type scale, the formal items of the BSDS were selected based on their Mds to cover the continuum of intimacy. As Q is a measure of variation, and a larger Q represents inconsistency of judgment, the topic with a smaller Q is chosen when there are two or more items with approximate Mds. The initial BSDS were checked for inter-item reliability and validity in each topic; and the final version of the BSDS consisted of nine subtopics, with six items in each. The 54 items had various intimacy values, ranging from the lowest to the highest . To increase response rate, the final version of the BSDS were measured on a 5-point Likert scale, with each item having an intimacy value. A typical question would be: ''I shall comment on politics/political figures'' to my best friend, parents, or on blogs. Participants select from 1 to 5 concerning the three targets. The depth of self-disclosure on a topic was measured by the average of six intimacy values; the width on a topic was measured by the accumulated percentage of all six items. We chose 50 percent as the reference point, implying that half the participants disclosed this issue; and for the items exceeding 50 percent, the wider the range of topics they disclosed. --- Results --- The BSDS The BSDS consisted of nine subtopics: attitude, body, money, career, feelings, personal, interests, experiences, and unclassified, as shown in Table 2. Each subtopic included six items. The validity of this scale was also checked by factor analysis; and all topics with one factor extracted with eigenvalues larger than 1. All nine topics had KMO values larger than 0.76, indicating a valid construct. All topics were also checked with Cronbach's alpha, and all were higher than 0.9, except for the feelings dimension, which was 0.62, indicating that most of the dimensions were reliable. --- Dimensions of BSDS BSDS, in comparison to previous self-disclosure questionnaires, 19,30 shares five topics with Jourard and Lasakow: attitude, body, money, work, and interests. These topics are widely self-expressed by bloggers. For the sake of clarity, only the depth and width of self-disclosure were measured, whereas the other dimensions such as duration, honesty, and positive/negative were not discussed. 31 What are they blogging about? As shown in Figure 1 and Figure 2, bloggers self-disclose on a wide range of topics. However, most of them seem to express their interests and experiences more often than --- SELF-DISCLOSURE AMONG BLOGGERS private information, such as financial matters. Generally, bloggers express more to best friends rather than to parents and online audiences. --- The depth of self-disclosure as a function of topics and targets A multivariate analysis of variance was conducted to test the disclosure of bloggers to the three targets , with differences in the depth of disclosure on nine topics . As shown in Table 3, the depth of disclosure was significantly different for each topic. The Games-Howell method for post hoc comparison was selected because Box's Variance Homogeneity test was significant. As shown in Table 3 and Figure 1, bloggers disclosed more to their best friends, followed by their parents, and online audiences. However, significant differences in the disclosure of money topics exist between best friends and parents; yet, bloggers seem cautious with expressing money matters to online audiences and best friends. On personal topics, bloggers seem to disclose with more depth to their best friends, rather than their parents and online audiences. For interest topics, bloggers disclose with more depth to online audiences rather than parents, implying that bloggers might express themselves to attract likeminded friends online. --- Depth of self-disclosure The width of self-disclosure as a function of topics and targets. On the width of self-disclosure, we computed the accumulated percentage of bloggers who are willing to disclose on a topic, and chose the accumulated percentage larger than 50 percent for further analysis . For ex-ample, the most frequently disclosed items on blogs are in Table 4. Life experiences, such as shopping, traveling, and gourmet experiences, and personal interests, such as favorite movies and TV programs, are at the top of the list. On the width of self-disclosure, bloggers express the widest to their best friends , followed by parents , and online audiences . Bloggers seem to widely express on all topics, which is similar to the findings in the depth of self-disclosure. As shown in Figure 2, bloggers seem to disclose personal interests, experiences, work, and feelings more often, and personal and financial matters less often . We used a nonparametric statistics to determine whether the bloggers selfexpress differently in width to different targets. As shown in Table 5, the self-disclosure of bloggers is significantly different among the three targets, and further post hoc comparison reveals that bloggers express wider to best friends rather than parents and online audiences; however, the difference between parents and online audience is unnoticeable in the width of self-disclosure. --- TANG AND WANG Demographic variables. Certain demographics, such as gender and age, have been suggested as an important factor in self-disclosure, 18,19 blogging, 10,13 and online chatting. 25 Therefore, we conducted a series of MANOVA on gender and age to ascertain their impact on self-disclosure. No gender difference exists on self-disclosure in blogging; however, female bloggers disclosed deeper than males to their parents and best friends, in real life, which is consistent to prior studies. 18,19 The younger bloggers seemed to disclose wider, but showed no significant difference in depth on their blogs. --- Discussion Online activities, for example, on social networking sites such as Facebook, Twitter, and Myspace, have become extremely popular in recent years. 14 However, the topics of disclosure of online users about themselves on the Internet are unclear. Social penetration theory was applied to the context of blogging, and revealed that bloggers disclose their thoughts, feelings, and experiences to their best friends in the real world the deepest and widest, rather than to their parents and online audiences. Bloggers seem to express their personal interests and experiences in a wide range of topics online to document their lives or to maintain their online social networks. Social penetration theory was appropriately examined in our study; and it seems that the ''wedge model'' of interpersonal relationships could be extended to online relationships. Similar to prior findings, 17,[34][35][36] bloggers seem to be aware of the risks of extensive disclosure on their blogs, and are more willing to disclose their interests and experiences rather than personal and money matters. Prior research has stressed that the Internet has invoked a high level of self-disclosure regarding online interpersonal relationships. For example, a study found that people report of disclosing significantly more in their Internet relationships, compared to in their real life relationships. 37 Another study argued that participation in online newsgroups provides people with the benefit of ''disclosing a long secret part of one's self.'' 38 Our findings, however, challenged these ideas, in that bloggers are more willing to disclose to their real-life best friends deeply and widely, rather than on their blogs. The interpersonal relationships in the real world seem irreplaceable. Several issues should be discussed in future studies, such as the interplay between online friends and friends in real world, the reasons that bloggers disclose more to best friends rather than their parents, and whether a blog can serve as a method of self-healing. --- Research restrictions Although the sample size of the survey was large, the subjects were volunteers, and from Taiwan only; therefore, the findings could not be generalized for bloggers worldwide. The self-reported survey may also be subject to honesty or social desirability issues, and culture may also be a potential variable for self-disclosure. --- SELF-DISCLOSURE AMONG BLOGGERS --- Disclosure Statement No competing financial interests exist.

Based on Social Penetration theory, this study explores the topics that bloggers disclose on their blogs, and in the real world. A total of 1,027 Taiwanese bloggers participated in this online survey, which revealed that bloggers self-disclosed nine topics (attitude, body, money, work, feelings, personal, interests, experiences, and unclassified). Further, we examined the depth and width of what bloggers self-disclosed to three target audiences (online audience, best friend, and parents), confirming that their disclosure is significantly different for each of these target audiences. Bloggers seemingly express themselves to their best friends the most, followed by parents and online audiences, both in depth and in width. The ''wedge model,'' proposed by Altman and Taylor (1973), has been extended to online relationships in this study. In comparison to male bloggers, female bloggers seemed to disclose more to their best friends and parents in their daily lives; however, no significant difference was observed in their disclosure to online audiences. Younger bloggers ( < 20 years old) seemed to disclose a wider range of topics; however, there was no significant difference in the depth of their disclosure on their blogs. Discussions of these results are also presented.

INTRODUCTION Digitalization and accessibility of information are among the main reasons for the change of focus in requirements for recent business graduates. Increasingly, "graduate attributes" are more important than the degree subject studied . For some employers, the degree subject studied is not as important as a variety of other graduates" skills, personal and intellectual attributes. Graduate recruiters nowadays look for oral communication, teamwork, self-management, problem solving, leadership, etc. As a result, in most higher education institutions, including South East European University , great attention is paid to the development of generic skills, such as: communication skills in English, critical thinking and problem-solving, team-work, lifelong learning and information management, entrepreneurial skills, moral and professional ethics, and leadership. Consequently, increasing the proficiency level is no longer enough. ESP courses should strive to assist students in becoming life-long learners equipped with the easily transferrable generic competences. One way to ensure this is to foster autonomy. We, the ESP teachers, should always bear in mind the fact that: "learner autonomy can be encouraged, but not imposed…" . There seem to be two basic preconditions for fostering autonomy in language learning: students" readiness and willingness to assume the role of autonomous learners and the teachers" devotion to developing autonomy in language learning as a worthwhile goal. In order to further the understanding of the theory of autonomy as well as its application in practice and to discover if the two basic prerequisites for autonomy are fulfilled, a case study based on a survey approach was conducted with undergraduate ESP for Business students and teachers at the Language Centre at South East European University. The field research aimed at measuring students" readiness for assuming a proactive autonomous role and teachers" willingness to transfer some of the responsibilities to the learners. The results of the survey conducted are reported, analysed and discussed. Apart from depicting the actual situation with reference to autonomy, the paper derives a number of implications and makes recommendations for the ESP for Business Courses at SEEU. --- LITERATURE REVIEW --- ESP for Business Definition and Features When attempting to define ESP and distinguish it from other forms of ELT, Hutchinson and Waters point out that ESP should be considered as an approach to language learning and teaching which is guided by learners" specific reasons and needs. They remind that ESP should not be considered as product which is different from other forms of language learning. The content of an ESP course will definitely vary from that of a General English course, however, the process of learning will not. In their view: "what distinguishes ESP from General English is not the existence of a need as such but rather an awareness of the need" and what distinguishes an ESP learner from a General English learner is: "a definable need to communicate in English". Being an umbrella term, English for Business Purposes or Business English is difficult to define and limit in linguistic terms. Dudley-Evans and St John distinguish between English for General Business Purposes and English for Specific Business Purposes . EGBP courses are usually intended for pre-experienced learners or those who have recently started building their career. They resemble general EFL courses with the main difference that the materials are set in business contexts. As in general English courses, all four skills are equally developed along with a focus on grammar and vocabulary. In this kind of courses, broad range of English is taught through business settings but with language activities typical for any EFL course. Contrary to this, English for Specific Business Purposes courses are specifically tailored for experienced learners who bring their business knowledge and skills to the learning situation thus creating the setting and carrier content. Unlike in EGBP, only one or two language skills are being developed and the focus is on specific business communicative events. What we offer at SEEU are English for General Business Purposes 1 and 2 courses for second year students who have reached at minimum the intermediate level of English. When it comes to selecting texts for Business English courses, Dudley-Evans and St John remind that the responsibility for choosing texts traditionally resides with the teacher or the institution and is based on the availability and provision of supplementary materials. However, learners can also have an important role to play in selecting texts especially when it comes to developing reading skills. Learners can bring texts for work use or interesting work-related texts that they need to understand, as well as texts they find interesting and valuable. When including students in the materials selection process, "the advantage is that learners "own" the texts and are involved and committed to them". . --- Definition of Language Learning Autonomy According to Holec , the creator of one of the earliest definitions of autonomy, it is "the ability to take charge of one"s own learning… to have, and to hold, the responsibility for all decisions concerning all aspects of this learning; i.e.: determining the objectives; defining the contents and progressions; selecting methods and techniques to be used; monitoring the procedure of acquisition properly speaking ; evaluating what has been acquired" . He insists on the fact that autonomy is not inborn but a capacity that must be developed with expert help. David Little, the leading proponent of the theory of language learner autonomy, offers the following definition of autonomy: "a capacityfor detachment, critical reflection, decision-making, and independent action. It presupposes, but also entails, that the learner will develop a particular kind of psychological relation to the process and content of his learning. The capacity for autonomy will be displayed both in the way the learner learns and in the way he or she transfers what has been learned to wider contexts" . In Holec"s view, taking charge of one"s own learning refers to the capacity to make decisions whereas according to Little, the capacity to take responsibility for one"s own learning lies in the control over the cognitive processes involved in the self-management of the learning process. The remark Benson makes about these two definitions is that they both neglect an important aspect of autonomous learning: the fact that the content of learning should be freely determined by the learner. Benson broadly defines autonomy as "the capacity to take control over one"s own learning", "an attribute of the learner"s approach to the learning process" instead of "a method of learning" and a "desirable goal of language education". Because a definition that tries to include all aspects of control would be impractical, he claims that the definition of autonomy should recognize the importance of three interdependent levels of learner control: learning management , cognitive processes and learning content . Little identifies several basic misconceptions about language learner autonomy and highlights that autonomy is not synonymous with self-instruction, i.e. limited to learning without a teacher; it does not require the teacher to relinquish all initiative and control and consequently does not make the teacher redundant; it cannot be destroyed by any intervention on the part of the teacher; it is neither a new teaching method nor something that the teacher does to the students; it is not a single, easily described bahaviour; and it is not a steady state achieved by certain learners. Not only Little, but also Benson reminds about the misconceptions about learner autonomy which stem form terminological and conceptual confusion. For instance, it is assumed that autonomy implies learning in isolation, without a teacher, outside the classroom or autonomy is considered to imply particular skills and behaviours, as well as particular methods of teaching. It terms of autonomy as a new method of teaching, Benson highlights that "there are certain fundamentals on which researchers in the field agree: ... autonomy refers to the learner"s broad approach to the learning process, rather than to a particular mode of teaching or learning" . According to Littlewood "at the core of notion of learner autonomy are the learner"s ability and willingness to make choices independently" . He observes that learners who are accustomed to a high degree of teacher control and support may lack the confidence to carry out the skills taught. In his view, the four main components of autonomy in foreign language learning are motivation, confidence, knowledge and skills. Cotterall defines autonomy as "the extent to which learners demonstrate the ability to use a set of tactics or taking control of their learning " . The "set of tactics" refers to setting goals, choosing materials and tasks, planning practice opportunities and monitoring and evaluating progress. Learners will display these tactics to different degrees partially depending on their beliefs about language learning. That is why before interventions aimed at fostering autonomy are implemented, it is necessary to gauge learners" readiness for the changes in beliefs and behaviour which autonomy implies. Scharle and Szabo define autonomy as "the freedom and ability to manage one"s own affairs, which entails the right to make decisions as well. Responsibility may also be understood as being in charge of something, but with the implication that one has to deal with the consequences of one"s own actions" . Edge and Wharton argue that learner autonomy in the sense of taking responsibility for one"s own learning is an ongoing process which presupposes acquiring both study skills, such as strategies for effective reading or learning vocabulary and specific attitudes towards study, for instance, self-confidence, independence of mind, etc. They argue that encouraging learners to reflect on ways and reasons for doing things is the most effective way to promote a change of attitude and acquire skills. Apart from skills and attitudes as the most important aspect of learner autonomy, Edge and Wharton add another important aspect of learner autonomy: encouragement of learners to move away from dependence on teachers, classroom and coursebooks, or in other words encouraging students to make most of all other learning opportunities they encounter in their environment. The opinions regarding the autonomy in language learning and teaching are still divided. Benson points out that: "the idea of autonomy often provokes strong reactions. To its critics, autonomy is an idealistic goal and its promotion a distraction from the real business of teaching and learning languages. To its advocates, autonomy is a precondition for effective learning; when learners succeed in developing autonomy, they do not only become better language learners but they also develop into more responsible and critical members of the communities in which they live" . --- FIELD RESEARCH This section of the paper focuses on the small-scale field research conducted with ESP for Business undergraduate students and teachers at the LC at SEEU. It specifies the research questions and offers details about the participants and data collection instruments employed. The two broad research questions that guided the investigation were the following:  Are undergraduate ESP for Business students willing and ready to assume a proactive autonomous role, i.e. take greater responsibility for their learning?  Are ESP for Business teachers ready to leave the comfort zone of being entirely in control by considering their pre-experienced students as partners in the teaching/learning process? As part of the field research, two parallel surveys were conducted: a survey of the ESP for Business teachers" and a survey of the ESP for Business students" views and perceptions of language learning autonomy. A major advantage of this small scare field research, which considerably increases its significance, is that it can easily be replicated or adapted to other contexts i.e. other higher education institutions or other ESP courses. Moreover, it does not have to be limited to learning/teaching English only, as it can have a much wider application in other subject specific core courses. --- Data Collection instruments The main data collection instruments used for this research were:  Student Questionnaire  Teacher Questionnaire Apart from their primary use, to collect information, the questionnaires also served as awareness raising tools for the issue of autonomy in language learning for both students and teachers alike. The students were asked to share their views on the distribution of responsibilities between the teacher and the students; to specify the language learning activities they practise in and out of the language classroom and to self-evaluate their ability to act autonomously. The teachers were asked to decide on their own and their students" responsibilities and evaluate their students" capacity for autonomous learning and their capability to take an active participation in the materials selection since it is assumed that the main reason why teachers do not feel comfortable transferring part of the responsibilities to their students is that they do not see their students willing and ready to assume an autonomous role. This assumption is based on literature on autonomy consulted, semi-structured interviews with ESP teachers and the author"s personal teaching experience. The answers about roles in the learning/teaching process given by students and teachers were compared, discussed and analysed in order to determine what trends in the data suggest the learners" potential for autonomous language learning behavior, as well as the teachers" perceptions of their students" potential for such behaviour. The results from the field research are presented in the penultimate chapter 6 Illustrations. The student questionnaire along with the summary of the answers given by students is marked as Figure 1, whereas the teacher questionnaire with the answers offered by the teachers interviewed is labelled as Figure 2. --- --- Student Survey Participants in this study were 30 randomly chosen undergraduate students attending English for Specific Purposes for Business Administration 2 course. Ten students were chosen form three different ESP for Business Administration 2 groups. The respondents were asked if they would be willing to fill in an anonymous questionnaire about learning English. Each student was informed that s/he did not have any obligation whatsoever to fill in the questionnaire. It was explicitly made clear to the participants that their information would be used only for the purpose of doing research. The questionnaire was available in English only. The research was conducted towards the end of the summer semester 2017. The timing was supposed to ensure students could give informed answers about learning English in the LC at SEEU. --- Teacher Survey Participants in this survey were three Language Center English language high lectors teaching ESP for Business administration. The respondents approached voluntarily agreed to take part in this research. The participants received oral instructions on how to complete the questionnaire and were encouraged to seek clarification of any ambiguous items included in the questionnaire. The questionnaire was administered at the end of the summer semester 2017. Since teachers are busy people, especially towards the end of semester, the questionnaire was short but concise. It contained four closed questions. --- FINDINGS, ANALYSIS AND DISCUSSION The overall purpose of this chapter is to summarize and present the results, to offer details regarding the findings of both the student and teacher surveys, as well as to analyse and discuss them. --- Student Survey Question 1 asked respondents to decide on the distribution of responsibilities in the language learning process. Overall, the respondents did not consider their teachers exclusively responsible for any of the items listed. However, they found their teachers mainly responsible for making students work harder ; deciding on the length of time spent on each activity ; deciding what is to be learnt outside of class and choosing what materials to use to learn English . The following were considered as shared responsibilities between students and teachers: ensuring students make progress during lessons; stimulating interest in learning ESP for business; identifying and pointing out strengths and weaknesses; determining the objectives; deciding what should be learnt next and evaluating progress made. Instead of taking the entire responsibility themselves, the respondents would rather cooperate with the teacher. This insecurity is probably due to the fact that the respondents were never taught how to perform the activities listed. Total of 19 of the respondents attributed the responsibility for making progress outside of class to themselves and not the teacher. This was the only aspect students felt most personally responsible for. On the other hand, respondents felt least responsible for the following aspects: motivating themselves or making sure they make progress during lessons; stimulating their interest in learning English for Business and making sure they work harder; setting time limits or deciding on the time spent on each activity; choosing the materials to use to learn English and deciding what is to be learnt outside the class. This is a clear indication of students" beliefs and expectations which most likely stem from the absence of prior experience in any of the previously mentioned roles. It is expected that students would not regard these as their responsibilities simply because in their language learning history the teacher had always been the expert in charge. Question 3a focused on activities attributed to autonomous language learners. Watching TV programs or movies in English turned out to be the most practiced out of class activity performed by the respondents , followed by using the Internet and listening to English songs . Contrary to common belief, keeping a journal about learning English appeared to be more popular then learning about the culture of English speakers . It was expected that the practice of keeping a journal would be regarded as tedious, time consuming activity. It is encouraging to see that students recognize the benefit of practising speaking with their classmates and value this opportunity . The final question required students to indicate on a four-point Likert scale the extent to which they agreed or disagreed with a list of 23 statements designed to discover if students" inclination is more towards teacher-centeredness or autonomy. Significantly high number of respondents held themselves personally responsible for failing to learn. Twenty two of the respondents preferred classes where they can decide what and how is going to be learnt, and almost the same number of respondents claimed they knew what they wanted to learn. Twenty eight of the students interviewed felt it was important to know the reason behind every activity done in class. Only autonomous learners would take the blame for not learning rather than blaming everyone else and would agree that the success in language learning depends on them just as much as it depends on their teacher. Contrary to the above mentioned claims indicating willingness to take on an antonymous role, 23 of the respondents expected the teacher to tell them exactly what to do and 28 of them considered the ESP teacher responsible for making them aware of their strengths and weaknesses in the English language. These responses indicate that only in theory do the students express readiness to take on an autonomous role. However, it is obvious that the students interviewed consider the teacher in charge of the learning/teaching process. Holding such beliefs, students do not seem ready for assuming an autonomous role and embracing the transfer of responsibility to them. Although 23 respondents stated that they could learn Business English without a teacher, having a class and a teacher was considered to be highly important for learning a language . The most probable speculation would be that this was the only way of learning students were ever involved in, taking into consideration how languages are taught in primary and secondary schools. About half of the respondents disagreed that a lot of language can be learnt without a teacher. Majority of the respondents wanted the teacher to explain grammar and vocabulary in detail. Although the main concern in ESP for Business courses seems to be improving communication, majority of students are still concerned with grammar and clench to memorising grammar rules. Instead, the accent should be on being able to apply the rule and use it in day-to-day communication. Unlike the highly teacher-centered statements, other two statements which refer to language learning activities show a lower level of dependence on the teacher. Namely, 25 of the respondents enjoyed projects in which they could work with other students and more than half of them, more precisely 22, saw selecting new vocabulary to learn as their own responsibility. As far as the selection of content is concerned, more than half of the respondents did not consider it to be their responsibility by stating that it is not the student"s responsibility to decide on the course objectives and only 10 of the respondents wanted to choose their own materials for the ESP classes. Only 13 of the respondents thought that an exercise was worth doing only if it was marked by the teacher, whereas 18 of the respondents expected all exercises to be marked by the teacher. An autonomous learner would not depend entirely on the teacher for any aspect of the language learning process, including evaluation and feedback. On one hand, insisting on every activity being evaluated by the teacher is evidence of heavy dependence on the teacher, but on the other hand, receiving regular feedback on performance by the teacher assists students to take greater control over their learning. In any language course, ESP or GE, learners are regularly exposed to teacher"s evaluation and feedback. What varies is the use both sides make of it. The usefulness of evaluation and feedback provided will depend primarily on the match between the teacher"s intentions and students" expectations, which are influenced by their understanding of the language learning process. When it comes to agreeing with peer correction, the opinions were roughly evenly distributed, 20 participants did not mind their colleagues checking their work and 22 did not mind checking their colleagues" work. This is probably due to the fact that students at ESP for Business 2 course at SEEU are already accustomed to the practice of peer and self-evaluation which are a compulsory element of ESP courses. Twenty one of the students surveyed admitted to not being able to assess their language work. Obviously, for some of the students interviewed the notion of evaluation is immediately associated with the teacher. They find it difficult to separate these two. As far as the teaching materials for the ESP course are concerned, 19 respondents claimed that it was not the student"s responsibility to decide on the course content, 22 believed that it was the teacher"s job to select materials for the ESP classes, 20 did not want to choose their own materials for the ESP classes. Contrary to these claims, 25 would like to be consulted regarding the materials to be used in class. With reference to students" motivation for learning, 20 students said that if they got a good mark they did not worry if they still had questions and 17 of the respondents were motivated to work hard by exams, which is not surprising having in mind the fact that Business English is a credit bearing course affecting students" GPA. Overall, despite the declarative readiness for a more active involvement in the learning process and the acceptance of responsibility for the success in the language learning process, the respondents showed a great deal of teacher-centeredness and heavy dependence on the teacher by not perceiving decision-making about content, materials, activities and their timing as well as evaluation as their own but as their teacher"s tasks. This indicates that prior to making any attempt to promote language learning autonomy, intervention in the language learning/teaching is required. --- Teacher Survey In the first question the participants were asked to decide on the distribution of responsibilities in and outside of the language classroom. The teachers considered themselves responsible primarily for: identifying and pointing out strengths and weaknesses in English ; determining the objectives of the ESP course ; evaluating progress made ; and stimulating students" interest in learning English for Business . Teachers interviewed considered making sure students make progress outside class ; choosing what activities to use in class and all the other responsibilities listed as shared responsibilities. They recognized the need to include and consult their students but not to leave the mentioned aspects entirely up to them. These claims are positive, encouraging and promising for fostering autonomy among undergraduate ESP for BA students at the LC at SEEU. All three ESP for Business teachers interviewed claimed to have sometimes tried to include their students in the process of materials selection. Moreover, all three teachers considered the students they had in their ESP for Business courses in the semester when the survey was conducted as somewhat capable to participate in the process of selecting teaching/learning materials and/or to suggest supplementary teaching materials. The answers provided in the questionnaire and in the follow up interviews with the respondents directly point to the conclusion that these teachers do not think highly of their students" ability to assume greater responsibility and behave autonomously. None of the teachers interviewed used one book only. They all claimed to have combined materials from various ESP for Business coursebooks at the same level or more precisely to have designed and developed their own materials. In the follow up semi-structure interviews with the respondents it was clarified that they actually modified and adapted rather than created teaching materials from scratch. The respondents unanimously, strongly agreed that if interested and willing, the students should at least be consulted about the teaching materials used. Teachers also strongly agreed that it is their responsibility to make students aware of their strengths and weaknesses in the English language and that it is equally important to tell students why they do the activities in class. All three teachers agreed not only about the value of self-assessment and peerassessment but also about their students" inability to assess/evaluate their language work and progress without guidance and assistance. This is a small scale research. Nevertheless, the data obtained from the two surveys and the follow up analysis produced useful indicators of the perceived views of autonomy by both parties involved in the learning/teaching process. How participants view themselves as language teachers and target language learners and users is without question an important finding which leads to direct implications for teaching that shall be elaborated later in the paper. --- RECCOMMENDATIONS In order to make sure that an ESP for Business course is fulfilling its main purpose of helping students to not only increase their language proficiency but also acquire the required generic skills, special attention should be placed on teaching materials, reflection on the motivation and needs, and assessment. Edge and Wharton remind that: "materials are not capable of making learners autonomous" , and argue that autonomy results from the existence of a desire for autonomy accompanied by awareness of what one already does and understanding that a choice exists. When learners are given a choice it creates a sense of ownership which is necessary for taking responsibility and engaging in critical reflection on the learning process. When it comes to distribution of responsibility, not only learners but also teachers benefit immensely since it lowers their burden and allows more time for their own development. Even if students are not directly involved in the process of selecting a coursebook for the ESP course they are attending, they can always be offered a choice of relevant supplementary activities to do individually, in pairs or groups, according to their preference and specific needs, in cases when there is sufficient time in the course, when some time is unexpectedly left at the end of a lesson, when an individual student/pair/group finishes earlier and has to wait for the other students/pairs/groups to finish; they can also be set as homework and out of class activities or as end of course review. This could be a good start which would get students into the habit of taking a proactive role with reference to materials and activities selection. Using authentic materials and assigning tasks relevant to real life and the realm of business results in adding a dimension of reality and concreteness to an ESP assignment which helps to amplify not only the outcomes of the learning experience but also student engagement. Students should always be told why they do an activity, and if it is not obvious tell them how the lesson learnt could be applied in real life situations. As was already mentioned earlier in the paper, encouraging learners to reflect on the ways and reasons for doing things is the most effective way to promote a change of attitude towards the learning process and acquire the necessary skills. One of the most effective ways to help students reflect on their language learning experiences is keeping a language learning journal in which students record the motivation and reasons for trying to master a certain language aspect; items they had no problem mastering or aspects they still struggle with accompanied by their personal plan for action in order to deal with the difficult issues; self-evaluate the progress made using provided check lists or can/cannot do statements, etc. By keeping such a journal, the students reflect in order to learn and at the same timer learn as a result of reflecting. The effect of the journal can be twofold if a portfolio is added to it for the purpose of practising self-and peer-assessment against evaluation rubrics. A portfolio containing samples of students" work would enable students to learn from their own mistakes, see how they could improve their work and increase the likelihood of students implementing the changes within future assignments. Another reason for the importance of peer-assessment lies in the fact that students learn a lot from each other. They do not learn exclusively from the teacher. The implication for engaging students in peer and self-evaluation is more than obvious since it is an instrument crucial for fostering autonomy in language teaching. However, a relevant training is required if students are to stop being dependent on the teacher. The inability to self-evaluate lowers students" confidence in their abilities to manage their own learning. Without this belief they cannot develop autonomy in language learning. Not just in ESP for Business, but in any ESP course, group work should be given priority over individual work. Group work is primarily intended to enable students to work collaboratively or in teams more effectively. However, working in teams develops certain "softer skills" such as negotiation and compromise which are crucial attributes in the workplace. Apart from group work, in order to maximize students" learning potential in and outside of the language classroom, the ESP teacher should make students aware of their preferred and most effective learning style and include a variety of activities suitable for different learning styles since no single instructional method fits best all learners. --- ILLUSTRATIONS Figure 1 represents the Student questionnaire with the results indicated whereas Figure 2 outlines the Teacher questionnaire with the answers provided. 2 1 0 0 g) It is the teacher"s job to select materials for the ESP classes 0 1 2 0 h) If willing to do so, students should also be included or at least consulted in the materials selection process. 0 0 0 3 i) The ESP teacher should make students aware of their strengths and weaknesses in the English language. 0 0 0 3 j) It"s important to tell students why they do the activities in class. 0 0 0 3 k) All exercises should be marked by the teacher. 0 2 1 0 l) Primarily exams motivate students to work hard. 1 0 0 2 m) Authentic materials of the content area should be used in the ESP for Business courses. 0 0 1 2 n) Students should be asked to self-evaluate their work using can do statements or rubrics. 0 0 1 2 o) Students should be asked to evaluate their peers" work against given rubrics. 0 0 1 2 p) ESP for Business teachers should get their students into the habit of keeping a journal Selecting new vocabulary to learn is the students" responsibility. 0 2 0 1 r) Students would not be able to assess / evaluate their language work and progress without teacher"s guidance and assistance. Employability of university graduates becomes a number one priority. It is more than obvious that simply mastering field specific vocabulary is no longer the primary objective of ESP courses. The ESP courses in higher education should give students a solid foundation and basis for future learning and development. While improving their linguistic proficiency, students should simultaneously develop business competences. Developing generic or soft competences and skills is considered essential due to the concept of life-long learning. The main aim is to help students learn how to learn in order to acquire knowledge and specialist skills enabling them to initially get a job and then advance by continuously developing professionally. SEEU strives to produce graduates who are properly equipped not only with theoretical subject specific knowledge but also with a broad range of skills and competences to meet the demands of the highly competitive employment market today. With reference to autonomy, it turns out that after all, ESP for business is not that much different from English for General Purposes in the sense that autonomy requires time and practice. Its promotion should start a lot before tertiary education. The advantage of ESP courses, however, lies in the fact that the ESP students are at a higher proficiency level which makes individual, out of class work more viable. The same applies to the active inclusion of students in the materials selection process and assessment. This paper should be regarded as the first stage of a more-encompassing, long-term research project. Its immediate follow up would be implementing the recommendations based on the findings from this small scale research in the ESP for Business courses in the upcoming academic years and testing their effectiveness. Consequently, if necessary, the recommendations would be adapted, modified and broadened.

Digitalization and the pressure put on universities to produce graduates who not only meet but also exceed the requirements of prospective employers impose the need for redefining the nature and role of today's ESP courses. Alongside mastering the language and increasing the proficiency level, ESP for business courses should also strive to assist students in developing the easily transferrable generic competences, which is in line with the concept of life-long learning. In order to simultaneously develop linguistic and business competences, the ESP for business courses in tertiary education need to be learner centred, interactive, autonomy requiring and autonomy promoting. One way to ensure this is to actively involve students in the process of teaching materials selection and evaluation; incorporate self-assessment and peer-assessment, as well as practices for making students reflect not only on their language learning experience but also reflect on their motivation and needs for learning Business English. In search of an answer to the above posed question, this paper summarises a field research conducted with the ESP for business undergraduate students and teachers at the South East European University (SEEU) in the Republic of Macedonia. The objective of the field research is to give a real and detailed insight into the willingness of students to take a proactive role in the language learning process and the readiness of teachers to leave the comfort zone of being entirely in control of the teaching process. Moreover, this small-scale study aims to offer a perspective of the inclination of ESP for business teachers at SEEU to consider even pre-experienced students as partners in the teaching/learning context. Based on the findings, the paper derives a number of implications and makes specific recommendations with reference to the ESP for business courses at SEEU.